Having a Unique Family

A Breakdown, A Snowstorm, But Still Fighting

2011-01-11T19:50:00.000-05:00

This post originally appeared as a Facebook Note. But it rightfully belongs here as the most recent events in the Unique Family. This begins a new chapter in our lives; dealing with mental health issues as they relate to chronic illness and stress. This is part of many families, and I want to be part of enabling discussion and encouragement. This is only one part of how mental health plays a role in our family. In the future, I will also discuss my sister and my husband. It is important to advocate for our loved ones. Thank you for reading.

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Perhaps I shouldn't write when I am tired, but the house is finally quiet at 1am, and this used to be the time that I could punch out a 2500 word paper, so I figured it is as good a time as any.

The last two days in the Unique Family house have been a roller-coaster. For some reason, I hesitate to put this down, but will push ahead. Not because I like sharing the details of my home, but I have found out that by sharing, I help and encourage others. So here goes.

My youngest son had a nervous attack. A nervous breakdown. I hesitate to call it a full breakdown, because he is recovering quickly, but I don't know if that is because it lacked severity or if his memory issues are kicking in and he is forgetting the whole incident. Here are the details.

Sometime Sunday night, my son began to yell, cry and scream, saying the same fragment of a phrase over and over again. "I'm sorry!" Writhing on his bed, he alarmed my oldest son enough to come and wake me up. In his usual autistic non-emotional fashion, my oldest son said, "Mom, wake up. Russell is having a breakdown."

Thinking it was a dysautonomic event, I rushed to his room, but heard the noise before I even got to the closed door. Upon opening the door, there was a picture I will not soon forget. It was a person in torment. Over and over again, he cried, "Make them stop. I don't want to hear them anymore. Make them stop. I'm sorry!" Thus began an incident that ended with us sitting in a Mental Health Emergency Room in the middle of a snowstorm.

It is so hard to talk about this. No one wants to talk about mental health issues. In light of the recent shooting, I am becoming more adamant that parents, friends, acquaintances, school officials, etc. have the resources they need to help an individual dealing with any mental aberration. Don't think I am saying this to capitalize on the recent events. I am saying this because how many people know where to go if their child is having an event? How many people know what to do if their friend begins to worry and scare them? How many people feel as helpless as I did Sunday night?

That night, I fell asleep in a chair, listening until I could hear him deeply sleeping. That was around 1am and after rocking with him for 3 hours. I was up again by 4:30am to listen for the school closings. And, by 10am, we were sitting in a Behavioral Health ER. The voices were quieter, but still there. Already his memory was slipping away and he was confused over the events of the night before.

Hours and hours later, the good news was that this was not considered a psychotic event. Because he could specify what he believes led to the crisis (the pressure he was feeling about school, church volunteer service and home life), because he maintained the ability to be lucid and based in reality, it was attributed to the stress in his life, and we were advised to seek therapeutic counseling to help him learn more coping and behavior modification skills, especially in light of his memory issues. The line that I distinctly remember is that my son could be compared to a brain injured person, and therefore, would need constant repetition and therapy to help him deal with the world, his condition and the stress.

Once again, I was told that I would have to be a strong advocate for him. I just chuckled. Please believe me when I say I am not being flippant.

Can I tell you the truth? I am tired. I have searched for doctors, therapists, specialists that could tell me what happened to my child. How did I lose my honor student, my athlete? Why has he been compared to an early Alzheimer's patient and a person with traumatic brain injury, and yet, I have no diagnosis, no treatment plan, no options for care?

And, now, to have to watch my son have a mental episode due to the stress of dealing with his life, a life that does not even include full-time school is almost too hard to bear. This is his second mental episode where he briefly wandered away from his senses, and asked me pitifully, "Mom, what is to become of me?" I sit here with the broken heart of a mother who longs to fix things for her son. Longs to kiss it and make it better. Longs to sleep.

But, that is not the road I was given to walk.

Today, I will be on the phone, calling his primary doctor, looking for a therapist, and trying, again, to put together a treatment plan to help him cope with his loss. He is 14, and has experienced more loss than I can imagine. Once again, I will fall on my knees and ask God for strength to sleep only a couple of hours and work all day and search the Internet at night for answers. Once again, I will search everywhere, asks friends and other advocates for suggestions, and reach down deep for the determination to keep fighting for my son.

I am tired. Driving Monday afternoon on the roads of Charlotte, I pushed to get home before the darkness robbed me of the ability to see the roads. I jumped out once to scrape away the ice and drove more by memory and GPS than clear vision. We almost had an accident when the brakes locked up and I slid out into an intersection, narrowly missing a car as I honked the horn to warn the driver, and maneuvered my minivan into a wide arc of a left turn. I now thank God profusely for that year of living near the Catskill Mountains and driving during 13 snowstorms. With the neighbors pushing, I parked the faithful car in the driveway, and began to thaw out my stinging fingers, too weary to even cook dinner.

But, the fight has to continue. Our children and our fellow adults need our help. Mental health conditions, traumatic and acquired brain injury and its aftermath continue to rob us of our present and our future. They continue to create human beings who cry out for help and need all the available resources that we can find.

If you take away anything from my note, please take this. Many families are dealing with mental health conditions in one form or another. Please don't hide if this is happening in your family. Don't consider it a shameful thing to be discussed in hushed tones and innuendo. We have to begin to find real solutions to help our children and fellow adults. And, that cannot happen without people who are brave enough to ask for help, push for more research and funding, and demand that something be done.

In my mind, I see another mother who has come to the end of her rope with her child. She doesn't know how to help him as he worsens. She doesn't know if she has a facility like the one I went to near her. This note is for you. You know who you are. I am still fighting. I'm tired, but still fighting for your son and mine.

New Year - Back to Blogging

2011-01-11T13:20:00.005-05:00

Here I am.

It has been almost a year since I have written anything about the Unique Family. I haven't even looked back to see what I wrote before. The year has been filled with transition and many changes.

There is a lot to catch up on over this last year and I will attempt to bring everyone up to date in some future posts. But, the urge to write about recent events supersedes the regular order of playing catch-up. Dealing with a new area of concern for the youngest member of the Unique Family shall take precedence. The next two posts were actually written earlier today, and will be posted because of their importance in my life and my life's work.

I will say this much as I return to blogging about the events in the Unique Family. I will continue to write as led by my heart. Some days may be light and airy, dealing with the simple pleasures of our new home in Charlotte, North Carolina. Other days I may focus on the frustrations of dealing with a sluggish vocational rehabilitation system here in the South. I may also talk about spiritual matters as I see through the lens of a Christian woman in the United States.

Whatever I do post here will be heartfelt and genuine. More than most, I never mean to offend. I truly want to be able to reach the heart of all readers. With this in mind, I encourage comments and debate, but with civility and respect.

Okay, transition over. Let's get down to business. I'm back and i hope you will stick around.

As always, take care.

Judi

The Road Less Traveled a.k.a. There are Weeds Here

2010-02-20T08:01:00.006-05:00

Today is Saturday, February 20th, 2010. I want to mark that day because it is today that I decided to throw out all conventions of motherhood toward teenagers.

You see, I have two of them (one 13, rapidly approaching impossible, and another 17, who already shows the blithe unconcern of a 19 year old - such a prodigy!) But, while that sounds completely normal, the truth of the matter is that both of my lovely boys will be with me for some time...so I better get used to them.

The oldest, though showing rapids signs of the 20-something self-centeredness, has autism, and at any moment, well, at regular moments throughout the day, gets the whole world wrong. I don't mean he says something cute and autistically-eclectic. I mean, he doesn't get whole concepts, like the idea of weekly shopping and the four food groups. Now, mind you, he is trying. We started him recently with a student Paypal account. He has his little credit/debit card, and the world smells like microwaved Hot Pockets. But, we are working on the concept that the Quickie-Mart is not a great place to shop long-term and that he, too, can purchase vegetables.

Some mothers may think, "huh, is that all you have to worry about?" Yes and no. I realize many of my other Mom friends with autistic children have MUCH BIGGER issues at hand. But, I am talking about the hand I was dealt, and I struggle with the idea that his only favorite food for going on 15 years is pizza.

But, in the spirit of "I have got to make this better or I will explode," we have decided to supplement his "diet" with a huge, horse-pill vitamin/mineral/every-other-thing-you-are-supposed-to-be-eating supplement.

I am out for some peace in 2010, and watching a 6'2', 114lb boy eat yet another pizza pocket (because he had money, now!) is not going to destroy me. I am trying my best to keep his arteries clear and his blood sugar levels stable. Good thing, my dear son has a fear of being sick, so random Yahoo! news announcements of the latest food study help a great deal.

Now, my youngest son is not quite so easy or humorous.

We are faced with the prospect that the only way to teach him may be through special education, homeschooled over many, many years. Now, again, some of my readers may mutter, "Big deal, we have been there since day one!" I have not.

My youngest was nearly skipped from pre-school into first grade. He rapidly took on more advance work (twice he was put in advanced math) until the age of 7-8. From there on, we saw the steady decline in memory (retention and recall), comprehension, speech and language skills, and so many other abilities, I need a school specialist to explain them.

What happened? I do not know. Somewhere along the line (hindsight being 20/20), my son is more comparable to a mild Alzheimer's patient with a Traumatic Brain Injury (TBI) than just a struggling, slow learner. I just order several resources from Amazon.com and Lash & Associates Publishing. It is my own little resource section as we attempt to tackle high school with no IEP, only a very weak 504, and the possibility of home-schooling due to him being too fatigued to go through even a moderated schedule.

From what I can piece together is that since the viral attack at 2, and what everyone thought was a seizure at 3, my son has been set up for this decline. Undiagnosed moderate sleep apnea, dysautonomia, Chronic Fatigue Syndrome and a couple of good hits to the head (first one at six years old) and we have my youngest son; home-bound and needing 24-hour support. Not the support of someone wheelchair bound, but support nonetheless. There has to be a schedule for eating, sleeping, taking medicine, bathing and every other daily task. Without it, he can become a smelly, disheveled teen with bad breath and bags under his eyes.

According to one neuropsychologist, my son has no short-term memory. He lives in a world of moments. And, those moments are not easily recalled, even after being experienced.

Any of you familiar with dysautonomia understand the crushing fatigue, the stomach issues, the lightheaded feelings, the fog. We also have two sleep disorders, sleep apnea and one I call Broken Circadian Clock Syndrome, major memory deficits and a persistent inability to see the whole picture. I know that doesn't sound medical, but until I get a better term, I am stuck with always picturing the blind men, touching an elephant and declaring it to be something completely wrong. Imagine that in English, Science, World History and Math. Imagine a brain that does not process analogy or comparison. Imagine only have memories once in a bluish moon. The rest of the time, you live in an angry attempt to make sense of a world of which you are no longer a productive part.Imagine a brain where all of what I just talked about will be beyond recall two weeks from now.

That is my youngest son.

No one has ever answered my question. How do you teach a child who cannot remember? Is it really learning, if the concepts are gone in two weeks? The ability to master is there, but without the ability to recall, we are stuck in a loop of constant relearning. It turns ESY (Extended School Year) programs into (LL) Lifetime Learning programs.

But, remember, this is the year I make it easier; on him and my poor, constantly-grieving heart.

Starting in the summer, we, he and I, will embark on the most different kind of home-schooling program I can afford. Videos, movies, animations, trips and audio will replace 100% of the books. I know that sounds radical, but that is what works, and as a disability awareness guide (my own term, thank you!), I am out for what works. Not another frustrating year. We know that his procedural memory is relatively strong, so he must do things with whole body, over and over again. I welcome any suggestions from the home-schooling online community. This is uncharted territory for us. I am flying blind (no pun intended) here, but I intend to finish with a child who has some purpose in the world, even as someone has to remind him to comb his hair and brush his teeth.

So, today, all well-meaning friends who have children who are doing well, please understand if I don't share a lot. I am on a different road. One not everyone can handle and master. And, I intend to do both. Brilliantly.

We Are One People

2010-01-28T16:54:00.002-05:00

A friend of mine today was worried and sad. She had to go through a physical exam and a mental illness exam. She was so afraid that she would be labeled "mentally ill." Once she wrote this, I began to realize that she was reacting to a quiet discrimination leveled at people who suffer with mental challenges.

How many people hide their co-morbid emotional and mental challenges as they deal with more visible physical challenges? How many people don't seek out care and support because they need a physician of the mind?

Part of the disability movement that I am so excited about is the attack against accepting the labels, the pity, and prejudice leveled at persons with disabilities. Here was a person dealing with fatigue, skeletal issues, governmental programs for the poor and she was afraid to be labeled "mentally ill."

It is my hope that the community of persons with disability will continue to break down barriers, especially the ones that exist within our own ranks.

Below is a portion of my reply to my friend. Her user-name has been changed to protect her privacy.

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I just want to say a word or two about mental illness. Please bear with me.

Many people are discriminated against in our "health care" system because they need physicians of the mind. It is okay to miss a whole limb, but don't be anxious or depressed. There is a stigma attached to mental needs that I am making part of my mission to attack. My husband has depression, general anxiety and dissociative identity disorder. He suffers with mood swings (for which he takes medicine) and with his epilepsy, may deal with mild short-term memory loss. He lives in mortal fear that someone will discover all this and fire him or not want to be friends with the family. His own family verbally abuses him by calling him names (coo-coo, nuts, idiot, etc.) He lived a miserable life until I came along. We are not perfect, but I love him and have tried to help him in every way I can.

There is no shame in needing mental health support while you try to build up your physical health. I credit the short-term support I received in giving me the mind-set I have now. Don't allow anyone to judge who Blakely is by what mentally or physically challenges you.

You are a wonderful soul, and need support. Period.

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This goes for everyone. We are all wonderful souls. We need support, whether we have a physical, mental or invisible disability. We are one people and cap(able).

Lemons, Lemonade or Someting Else?

2010-01-12T20:50:00.004-05:00

Lately, I have been listening to many motivational speakers and coaches. As part of my goal to begin public speaking in 2010, it is important to get to know who is in the industry and what people are saying and how they are saying it. Part of my nature is to observe, take notes and draw conclusions based on my own experience. For the most part, I love what I hear!

There are so many great people out there, making it their mission to help others. It is uplifting, encouraging and yes, motivating.

Throughout my audio online visits, I kept hearing a certain phrase over and over,

“When life hands you lemons, make lemonade.”

I personally don’t like that phrase. Why?

Because, it is so limiting.

As human beings, we have the potential to create so many things with our lives. Our minds are capable of creating ideas that eventually turn into products, companies, movements; forces beyond what the original thought intended. When I hear that phrase, I envision people squeezing the difficult parts of their lives into a container, adding sweeteners, and then, trying to enjoy the finished product. Somehow, that is not appetizing. Nor do I think it is practical.

I decided to do some research on the lowly lemon. What I found blew my mind away!

That one fruit is part of our lives in so many ways, most of us are not even aware of it.

Lemons:

make furniture polish

strengthen our immune systems

purify our blood

stop bleeding from a cut

aid our digestion

create cosmetics and skin products

flavor foods

kill bacteria

keep other foods from spoiling

Lemons are non-toxic to children, pets and the environment

The scent of lemons is invigorating and refreshing

So, how did this wonder plant get the negative connotation of being attached to a bad or broken thing? How did such a plant with so much potential become synonymous with adversity, loss and failure? Maybe some scholar would like to chime in with a comment, but the source I read believed it began as a metaphor arising from its bitter taste.

I can see it. Something that tastes this bad CAN’T be any good! It is obviously not a good thing? Or can it be? We see from it uses that lemons are good, even though they taste sour. So what do I take away from this?

Here is my thought for you today.

Take a look at those sour, bitter experiences in your life. Examine those failures, losses and adversities. Perhaps, they can create so much more than just lemonade. Perhaps they can purify your intentions. Perhaps, they can clean away the bacteria of doubt and denial. Perhaps, they can freshen up the recesses of your mind with a clean, non-toxic attitude. Or keep some part of you from spoiling in decay. Maybe there is more that adversity can do than make a sweet drink that you will try to swallow.

So, do you still want to just make lemonade? I don’t.

I don't claim to know how or why we are given the losses in our lives. I don't claim to like the bitter taste of adversity. But, the next time you feel you have been given a lemon in your life, don’t just mix a drink.

Plant the seeds and grow lemon trees. Sell the fruit to companies, the juice to chefs and the skins for furniture oil. Clean your house. Color your hair.

Find out how those lemons in your life can become so much more than what they seem.

References:
Lemons are Not Just for Lemonade: 31 Uses for Lemons and Lemon Juice
http://gomestic.com/homemaking/lemons-are-not-just-for-lemonade-31-uses-for-lemons-and-lemon-juice/

Online Etymology Dictionary
http://www.etymonline.com/index.php?search=lemon&searchmode=none

This Seems Appropriate

2009-12-28T20:57:00.011-05:00

It seemed appropriate to update this blog at the end of the year.

So many of you Twittered, FB'd, emailed, wondering where I was and what happened to the Unique Family. When I look at the post list, I see I have not posted anything since July 25th. Looking back, maybe that was a pivotal month. At the time, it seemed anything but pivotal. It just seemed like the madness would continue until it destroyed us all.

But, I don't give up quite so easily.

So, today seemed appropriate to bring everyone up to date. Time to let everyone in on the last six months. Perhaps some might think that a blow by blow description would have been better. I tend to think otherwise. I think that hindsight is 20/20, and a mind in reflection can tell a story better than while it is going through it.

Today, is the end of a magnificent year. If you would have asked me a couple of months or even weeks ago, I would not have said that. I would have said that this year ranks up there right after the year both my parents died. I would have bemoaned this year as a catastrophe on so many levels; financial, emotional, marital. But in hindsight, I believe this was a year that confirmed the kind of person I am. Unabashedly, I am a giver, a nurturer, and a strong, powerful woman. I am smart, creative and funny. No shame or humility in these statements. You see, at some point in our lives, we should be able to look in the mirror and say, "Yes, this is who I am, and I like it." If you are still not able to do that, make 2010 the year you begin. I reached that point in 2009. This is how it happened for me.

If some of you are reading this for the first time, you may not know that I have several family members that need a lot of care. Some are more functional that others, but all of the Unique Family struggles to get through day to day life in some way or another. Whether it is autism, depression, chronic debilitating illnesses or mental illness, their struggle takes someone other than themselves to see that all is well. I am that someone.

Up until this year, I shrank from that role. Well, for my children, I accepted the role of mother and caregiver, but for my husband and my sister, I rejected the needs and demands. I wanted to be so much more than just here everyday, providing a backdrop for other people to exist. I remember even asking a therapist (my husband's) about how I could live the life I wanted and still take care of the people I loved. She had no answer at the time. Funny, how those kinds of answers can only come from inside yourself.

Most of the year, I continued to shrink from the responsibilities, the needs, the demands. Why couldn't these people take care of themselves? Why did I have to be the leader? When do I get to enjoy my life, the things, people and places I liked? These were the kinds of questions in my mind (and the reason I didn't write here for nearly six months). Waffling between outrage and compassion, I tried to find a middle ground that would satisfy my predicament. Only this last couple of weeks have I realized that it is not middle ground I need, but higher.

Let me explain. When I have to do something difficult, my first reaction is to find a fix; something that will make it better. Remember, I am a nurturer. I want it all to just "work out." But, this time, when the light bulb finally went off, it was not to do something easy or put a band-aid on it. The answer was to rearrange my entire life, take on new, more difficult roles, and approach life in a way that is totally foreign to me. I had to step into the role of leader.

Yes, I am a reluctant leader. I am a person who really likes the side-lines. I am a INFJ; introvert extraordinaire. I like to be the wind under other people's wings. I avoid the limelight. And, yet, 2010 brings me to the realization that a leader is inside of me, and unless, I stop fighting myself, I will destroy not only myself, but the ones given to me in this lifetime.

By now, I am sure you are wondering, what does that mean for the Unique Family?

In 2010, the following will happen:

1. I will relocate myself and my two children to Charlotte, NC.
2. I will not live with my husband anymore.
3. I will become a landlady, renting to my sister and a mutual friend and her two children.
4. I will relaunch my old company, An Extra Hand Services (AEH Services) providing office/project/event management to start-ups, sales and other entrepreneurial-minded individuals-both online and off.
5. I will become a partner in an event management company, called Pristine Events of North Carolina.
6. I will begin to speak publicly about my journey to leadership through the particular hardships I have been through: disability, single-parenting, dealing with mental illness and depression of close family members, including my husband and sister.
7. I will work on my Bachelor's program in Small Business Management and Entrepreneurship with a Leadership elective track.
8. I will continue to work with two direct marketing items that I believe in and love.
9. I will not rely on the government beyond my own disability income with the goal to one day tell them I don't need it.

These are all of the issues that were worked out in the last six months. Maybe it would have been a better story to have written every twist and turn, but frankly, it was too hard to write in the midst of it. There were wonderful highs, like the day my diploma arrived for my Associate's degree. Or, the day my oldest son came home with six straight As, and made the Honor Roll for the first and only time in his seventeen years. But, there were also many lows, like the day I told my husband that he needed to live on his own for his own sake and mine. The day I realized that my youngest son may only get a GED, and that is a very light maybe. The day my sister moved back in with me, and let me know that if I sold my home, she would return to the homeless system. The day we refinanced the house for the second time in three years, and still could not afford anything for the holidays. The two weeks with only $50.00 for food for five people. The weeks I washed 2-3 times a day because I couldn't afford deodorant. The month without heat. Standing in line at the pantry after getting yet another A in school. The constant dichotomy of sanity and mental instability, strength surrounded by profound weakness, love and loathing felt in the same day, hour, minute.

The mental and emotional anguish was not something I could put into words at the time. The memories now are hard to write about.

But, I want to leave you with this. The other day at the pantry, I picked up the Laura Day book, Welcome to Your Crisis. I brought it home, because I knew I was definitely in one. I went in looking for answers...and quickly became bored. Not that her work is not fantastic. It is a phenomenal book. The problem was within myself. Deep from within, a voice continued to hammer away at me. "You don't need this," it said. "You know what to do already. Why are you trying to find answers to questions you have answered long ago. Get up and do what you are supposed to do. NO MORE EXCUSES!!"

So, here I am; writing again. Hoping those of you who read my blog understand the reasons for the silence. This will not turn into some sticky, motivational platform. It will continue to be one woman's journey in this world. I just accept the road I must travel now. I hope you will continue to enjoy where I go and how I get there. I am happy for the company along the way. For it is the process that is to be enjoyed, not the destination. :)

Take care.

Spontaneous Recall and Then It's Gone

2009-07-25T08:18:00.005-04:00

I found this post written back in July. It was the beginning of a time of introspection. I went away for awhile because I had to make some hard decisions, and in the end, only the person and their God can help them move in the place they need to be. Read this and understand.

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I am sure there is a more medical, scientific name for what happened in our house last night, but all I can call it is spontaneous recall.

It was an ordinary evening. Dinner was done, the kids were in the living room watching television. I was at the computer, trying to download all the research for a paper due Sunday. I had just reminded my son to go take his shower. If you are not familiar with my youngest son, he has dysautonomia/POTS, a rare autonomic nervous system disorder. It is not fatal, but there is no cure. One of his worst symptoms, one that has led others to think he actually had suffered from Traumatic Brain Injury (TBI), has been the complete loss of memories of his childhood. Coupled with that was the inability to remember anything short-term either. He needed a phone with constant reminders, even to remember to eat lunch.

It has been a heartbreaking FIVE years since he first told me he thought he was losing his mind and couldn't remember anything. No one could give us a definitive answer, and back then as his health continued to deteriorate, they even looked for tumors. A neuropsych evaluator said that she only saw deterioration like this in terminal, progressively degenerative disease. His therapist counseled me to treat him like an early Alzheimer's patient.

As a mother, I was devastated. Here was the same little boy who tried to memorize his times tables in kindergarten, now getting hung up on spelling the word "the." The entire house became his memory system, and he relied on everyone to keep him oriented. I played music that we all loved. His brother, though annoyed, let him play certain things over and over again. We bought him a phone, not so much for the ability to make calls, but for the ability to keep reminders of everything. Reminders to take his medication. Reminders to feed the dog. Reminders to take a shower.

School became useless. No one has ever answered my question: How can you learn if you can't remember. 5th, 6th and 7th grades were completely lost. Anything he wrote down, he couldn't even recognize his handwriting.

I took old pictures and scattered around the house. I wanted him to at least be comforted by the images. Even though, he would pick them up over and over again, and ask me the story behind each one.

As days turned into years, I stopped using the words, "Don't you remember?" In fact, the word remember was stricken from my vocabulary. We all tried to help him live in the present, even as each new moment became the present all over again. The best analogy came for the neuropsych evaluator. She said it was like his mind took a Polaroid snapshot of each moment and then threw it away. Each moment was never connected to the next.

Then came that night.

All I can remember is that it was like a damn broke and everything flowed with the flood of recognition. Childhood memories that included the feeling of the backpack hitting his shoulders as he walked down the halls in first grade. Holiday celebrations in homes in other states. Smells of food that he no longer liked to eat. There was no rhyme or reason to it, just stacks and stacks of memories. Some as disconnected as ever, but others attached to more memories in odd, disjointed ways. Like how the feeling of the backpack led to a description of the school walls and how they felt.

He went on for the better part of the night. After awhile, I just listened, not daring to speak, hoping that the more he spoke, the more he would remember...and retain. The elation on his face of realizing he did have a past. He didn't just pop up one day, 13 years old. He hugged me again and again, like a long-lost friend. He went around hugging everyone and fingering household items like he saw them for the first time. He went to bed with such a look of satisfaction, I just sat there for more than a half hour, looking at him.

The next morning, he remembered the event, but not the memories. In a week, the event and the memories were gone.

I cannot even write about this anymore! I am in such anguish at his loss and mine. All I know is for more than two hours, one evening, a little boy was connected to his mind. I will never forget that look on his face. The confidence. The serenity.

Today, we are back to square one. I try not to remember in front of him. He tries not to think about how he can't remember. We use reminders for everything. The pictures lay scattered around. And, he asks me again, what day it is.

I'm Back...And Have Great News!

2009-07-13T21:40:00.002-04:00

Classes are winding down, but I cannot contain my excitement. Even though I want to talk about my own successes, first and foremost, I want to crow like a happy, proud Mommy for my oldest son, Andrew.

During the big silence here on this blog lately, my son has survived a whirlwind of activity. First came the Youth Summer Job Program workshop and job fair. Then came the week away with DORS (Division of Rehabilitative Services) for a career assessment. We are still waiting on the report from DORS, which usually takes a month or two. We do know that he passed all the assessments with flying colors. That alone makes me very hopeful.

The summer job workshop wouldn't allow parents to even go into the room, which made me very upset. Even though the program was slanted toward children with developmental disabilities, it didn't seem like the program leaders knew anything or had any training in actually placing children with autism or learning disabilities in the job market. Then came the fiasco of a job fair that left my son stressed and turned off. Over 1000 children showed up, crowding the hotel lobby and walkway. We never received the time allocation call, so we showed up first thing in the morning (8:00am) only to find out that he didn't need to be there until 11:30am. By the time our allotted time came, the place was packed and we couldn't even find the end of the line. By this time, my son was visibly stressed and pacing. I decided that the whole atmosphere was not conducive to a good interview and left. If he couldn't be seen in a positive light, what was the point of seeing anyone?

Having a child with high-functioning autism requires a lot of groundwork. Nothing is ever just off the cuff. If neuro-typical young adults need to practice for interviews, it is imperative that young adults with autism practice early and often. For weeks ahead of time, Andrew practiced the right pressure for a handshake. Not too firm to crush their fingers and always more gentle with women, a little more firm with men. We worked on making that eye contact, which was very hard for Andrew to maintain. I literally counted off seconds so he could understand how long to hold a gaze. Low emotional expression is the norm for him, so we practiced flashing those pearlies at least once every minute or so. Even if he just tugged at the corners of his mouth that was better than his usual dead-pan look. He hates smiling, unless there is a joke, so I told him to think of something funny, but don't break out in laughter. He thought that was funny!

Finally we went through a whole series of interview questions, a body language overview and what to do with his hands. Even though his step-dad was with him during the interview (I let him know that having parents was unusual, but that for his first time out, I thought it was necessary), he was to look, listen and learn how interviews go.

After about a week, we got a call asking if Andrew had gone on any interviews. We said no. She mentioned a car painting warehouse. I explained that Andrew has high-functioning autism/Asperger's and also that I had allergies (he couldn't come home smelling like paint or chemicals) and was mobility impaired. I know it came out like a mouthful, but there wasn't anyway to get around it. We needed a miracle.

Well, never underestimate God when you ask for a miracle.

Last week, we got a call to see if Andrew would go out for an interview at a furniture manufacturer in a nearby town. It was for furniture assembly. I pictured sawdust everywhere. I was concerned about glues or stains, but felt like it was better than all day painting. On the day of the interview, I tucked his resume (that I had expertly typed up for him) in an folder and told him to hand that to the person who interviewed him. My hubby took him down and I crossed my fingers.

Well, he came back, saying that they wanted him to come back again to meet with the CFO of the company for a possible office job. I was simply ecstatic! Trying not to make him antsy, I tried to stay calm, while I told him I had hoped for something like this.

Don't get me wrong. I have nothing against working on the warehouse floor, but I don't know a single child with autism that likes noisy, dusty environments with a lot of people (my son hates everything like that from movie theaters, amusement parks to malls). He will do what I ask him to do, but after awhile, you will see the strain in his behavior, mood and body. Plus he would be on his feet all day long and he has low muscle tone in his hands and arms. I knew that initially, he would do okay, but eventually, he would begin to suffer from it.

Well, today, was the interview. I sent him out in his taupe pants and his office blue shirt. He looked just like an office employee, and at six feet tall now, he makes an impressive entry. I prayed he would get that job.

And, he did!

Monday of next week, he starts as assistant to the accounting office, and working directly with the CFO of the company!

I am so excited, I could cry and scream at the same time! They are even negotiating whether he can be paid more due to the different nature of the job from the summer program. He will work 30 hours a week to start and if this works out, he may have the opportunity to return next year during school and the summer after that.

Out of all the hardship we have endured lately (we are financially quite strapped, trying to provide all the special care everyone needs in here), this was a godsend! Andrew is very thrifty with money, so I know we won't have to worry about him squandering it all (he still has gift cards from Christmas!). This will give him experience and confidence.

He participated in our annual community clean-up this last weekend. As he road off in a truck with the other men to pick up items from the elderly, I realized that I am saying good-bye to my little boy. He went off and didn't even look back. Monday, when I drop him off to work (the office is literally 10 minutes from our house!), I am sure he will do the same thing.

It will hurt, but in the end, I'll be okay. I raised him to do just what he is doing; growing up confident and able.

BTW, one line for me. I got a 99.4 in Project Management and 100 in Image Editing.

Where are You?

2009-06-27T21:28:00.009-04:00

I have been MIA, I know.

I had a feeling that the two classes I am in would be intense. And, I was not wrong. These last seven weeks has found more dust bunnies in the corners, less full meals and everyone trying to fill in the gaps as I slave away at technical texts and terminology. Having to learn two programs (MS Project and Photoshop Elements 7) while completing assignments on time has taken its toll, and the one thing to go by the wayside for a moment has been my blogs.

And yet, within these seven weeks, my final blog took shape! I now have three places to put my thoughts. This will continue to be the personal blog of the Unique Family. Celebrate Connections will continue to be a blog about different topics that come up in my blog readings (yes, I have to get back to that, too!) as it pertains to five different categories. And now, I have a new blog, which will talk about the greeting card industry.

Why a 3rd? Just because I wanted a place for the research that I do all the time. Since I am now part of that industry through my Send Out Cards distributorship, I like looking up and finding interesting tidbits about greeting cards.

I know, weird.

Anyway, I have to go back to some downloading, so let me get started.

Some have asked about various family members, so I will try to bring everyone quickly up to date:

Andrew:
He finished 11th grade with poor Chemistry limping through with a D, but aced English and Food/Nutrition. We know he has a love of food and so we feel this will probably be his future, career-wise.

He has decided to put off driving for now. The entire experience left him stressed and tense. Though I am sure he will eventually master this, for now, we are moving ahead with filling out the forms for Paratransit, so he can be mobile, safe and calm. He will get further transportation skill training when he goes away next year.

For the next two weeks, he will be living in a Workforce and Technology Center as part of his IPE with DORS (Division of Rehabilitative Services). He will undergo two weeks of career assessment. He will stay on campus, and eat and sleep there. Trust me, I am typing calmly, but I have been a nervous ninny since we found out. He has only been apart from me two times and that was for only a week and with very close family. He, on the other hand, is as calm as a cucumber. Have I really had something to do with raising this tall, confident young man? Somehow, it just doesn't seem real.

Russell:
We are going to his medical support group conference over the 4th of July weekend. This will be a great time for us, because for three days, we will see other children who behave like Russell. We will fit in for a hot minute. Even though this is only our 2nd year there, it is like family to us; others who know the world of dysautonomia.

We hope to see a new specialist in Maryland soon, but I am already getting myself prepared for no new answers. Russell is in the chronic stage of this disorder, and will spend another (his third) year in Home and Hospital, unable to attend regular school.

But as usual, things are always positive here. He finished this year of tutoring with 2 As and 2 Bs! Though I thought the tutor gave him many breaks, I witnessed him push himself further this year than ever before.

Also, he landed his first voice-over job! At 13, he recorded a character voice and won a spot on an independent online video project. No pay, but he likes it, and mastered the audio recording program quickly.

He still creates Flash animation and is drawing more and more everyday. We know he will be our artist.

Sister, Kim:
My sister is doing well, having shed more than 30 pounds since last year. She is stable on her meds and will be going with us to the medical conference. Though her memory is still sketchy, she has compensated nicely after the stroke scare, and it is not that noticeable.

She is working and in good spirits. She is finally acknowledging her issues and seeking help for all of them, physical and mental. More on her to come.

Husband, Matt:
Some of you know, but for those who do not, this year saw my marriage hit the rocks. Although there are several blog posts to be written on this subject, I will just briefly touch upon it here.

My husband has been formally diagnosed with depression and anxiety mood disorders. That with his epilepsy has made life very difficult. Knowing the odds against a happy outcome, we are forging ahead, remaining faithful to our vows and facing this battle together. Yes, there will be therapy. Yes, there will be more medication. But, just these last two weeks, I saw my loving, gentle, blue-eyed darling return, and the tears of joy were overwhelming. There will be a lot of discussion here about depression. I intend to speak out. I am no longer afraid.

Also, he is up for a promotion at work!

I continue to request prayers and positive thoughts for us.

And finally, Me:

What can I say?

School: 3.88 G.P.A. Soon to go a little higher.

Health: very stable and manageable, now that I know what to look out for.

Business: Growing by leaps and bounds! There are chances coming up for me to do short seminars about Shoestring and Relationship Marketing, webinars about Insurance and the Uninsured, and presentations to sales executives. Very exciting stuff.

My mental/emotional state: Mending a frightened, almost broken heart. I will survive intact.

Faith: stronger than ever.

There it is. A quick run-down about everyone for all of you faithful and new readers. That will have to do until I finish this round of classes. I promise you, I will be back. Stay tuned.

Blog Woes

2009-06-02T21:30:00.004-04:00

I thought I wouldn't have to do this, but I literally have to write in to say that I can't write.

School is so intense right now that I haven't Twittered in weeks and both blogs look like they are growing cobwebs! I am in the midst of a Project Management class from an IT slant and another class learning PhotoShop Elements with a text that is several versions back. Both of the software packages for these classes are new to me. I have to give a lot of time to learning the program (think MS Project for Dummies!) and then completing the assignment. It is a tedious, slow, laborious process that I have to do in order to keep up. Also, I've been under the weather so much. Not sick, but very tired and needing to sleep a lot more than usual. Also, the young son just finished a round of physical therapy, but also suffered 2 faints in the last two weeks. That just means that he needs more attention, another drain on time.

With school ending soon, the schedule is getting ready to slow down immensely, though there are a lot of things on the horizon. The oldest son has finals next week and has been stressing about chemistry and Spanish II. We are waiting for a job fair to start up soon. He will have to work on his interview skills; something that we have never worked on before. I have every confidence in him that he will do well on both counts.

We have a support group event coming up for my young son. Every year, we go to a hotel nearby and meet up with over 100 families that are part of Dynakids. I am looking forward to this year because I will meet people from all over the world and hopefully, get to meet people who can help me with my future relocation.

Yes, I may be relocating. But that is another post.

Well, that is most of the wrap-up for the kids and I. I will be blogging shortly about a subject that is very hard to talk about, but I have promised to keep writing honestly, even though others are reading this stuff now. It has to do with the next post and leaving some people behind.

Will be back soon.

Dear Kid Saturday-May 23, 2009

2009-05-23T16:07:00.005-04:00

Dear Kid Saturdays at Cutest Kid Ever

I have to admit, I have not been consistent with writing a letter to my kids every Saturday. I guess I tend to tell them everything! That may not sound good, but I learned early to rely on auditory lessons with my kids than text based lessons. Probably you will read more of these than they will, but who knows? One day they may look back and view this blog, and see what Mom was thinking about at this time. So, here is my Dear Kids Saturday note for May 23, 2009.

Dear Son,

This month has been a bit of a whirlwind. We started off with SATs, signed up for summer employment and now, we are studying the MVA driving manual together. If I didn't realize it before, the last 30 days should really convince me that you are growing up. We are talking about your high school graduation next year. We are discussing going to see your biological dad in Georgia for the summer. We are talking about letting you stay in the house for four days by yourself, while we take your younger brother to his dysautonomia support group conference.

Are we really having these conversations?

I don't want to drag out the pictures, but I remember so many stops along the way during these last 16, soon to be 17 years. I remember you as a little boy; withdrawn but yet so adorable. I remember your grandfather and grandmother holding you and saying a prayer over you like you were the chosen one. Their first grandson that neither one would live to see grow up. How they doted on you for those precious three years they had with you.

I remember the inquisitional first Student Support Meeting when I was told you would never finish high school. I never told you that story until you were in high school. Now, you repeat the story every time you get your report card and remind me how wrong even the best intentioned humans can be. I remember teaching you so many things: the meaning of zero, how to hid your fidgety hands, how to stand still when people talked (though rocking was allowed!), how to shake hands firmly while at least glancing at people's eyes; so many subtle little things that make people not believe me when I say you have autism and a speech and language disorder.

I remember the decisions we have made together, you and I. How you have so sweetly become the "little man" of the house. You have your grandfather's gentle spirit in the lean, tall body of your father. The combination is pure joy to my heart. It is like having the best of both people here with me every day.

I realize driving is scary. I know you aren't sure what you want to do for the rest of your life. I know change is hard for you. Even as we speak of next year and its graduation, college visits and four months stay at the DORS campus, I see the tension in your shoulders.

I am not worried. You have made it this far. Farther than anyone in that little elementary school in suburban Queens, NY thought you would go. I know you will succeed.

Guess what, though? It is okay to be a little afraid of the change. I am, too. We will make it.

Okay, I Give In

2009-05-11T10:30:00.000-04:00

All I want for Christmas...is a Kindle DX.

I have to admit something. I am an procrastinating early adopter. Is that an oxymoron? Well, whatever it is, that identifies me. Let me explain.

I love technology. From the first time, my brother took me on a tour of an IBM plant back in..., well, whatever year that was that computer mainframes took up entire rooms, I have been hooked. Not the programmer, webmaster, system analyst kind of hooked, but the I have gotta have it, figure out how to make my life fit it and it fit my life, kind of hooked.

I spent a lot of time and money getting things first.

And, then I woke up. I was tired of getting things first, only to be a beta tester who paid full price. I was tired of bugs, patches and upgrades. So, I decided that even though every fiber of my being stretched toward buying (or pre-ordering as the case may be) techie stuff first, I would wait.

It is hard. So very hard.

You have to listen to all the people blather on about their iPhones, iPods, netbooks, 17 inch laptops,...do I have to go on?

Well, this is the ONE time that I am SO glad I waited. When the Kindle came out, I watched people pre-order. My little heart sputtered. I wanted one. A line that can only be said with the appropriate pout. But, I stuck by my guns and waited. First generations ALWAYS goes through an upgrade (look what happened with the iPhone!).

I waited. Out came Kindle 2. Then, the controversy started.

Where was the sound? The blind community felt left out. There were petitions and Twitter Blitzes.

I waited some more. By this time, I knew another upgrade was coming. And, here it is.

Was this thing made for me or not?

If you are knew to my blog, you may not know that I have vision issues. I need everything larger. Everything. Another thing you may not know is that I have a book collection bordering around 630 books (the one categorized already) and counting. I LOVE READING. And, I have waited for the day, when I could carry my books around with me in a slip of a device.

I have read some people disparaging the nearly $500 price tag. When I think about the Optelec Farview that I want that costs over $700, I am willing to deal with the price. I will probably use both equally as much.

So, for once, you hear about something Mom wants. Let's hope the rest of the family can afford me!

Hunger Strike For Autism?

2009-05-08T10:40:00.001-04:00

Today, I received disturbing news from one of the bloggers I follow.

Michael Buckholtz is the blogger for the non-profit organization he founded called Aid For Autistic Children Foundation, Inc. As usual, I stumbled across his blog as I perused the many Twitter posts for autism. As a person who was not diagnosed with his spectrum disorder until grown, he brings a unique perspective to the world of autism and Asperger's. As my son grows into manhood, I appreciate that perspective.

However, Michael is going on a fast to bring awareness to the plight of those families that deal with autism, but who do not have bankrolls (or even houses to mortgage) to pay for their child's care.

He is on a 30-day hunger strike.

I am not here to judge, but I still don't like the idea of having to fast to get the attention of people. I don't know if he is being followed by a doctor to monitor his health as he does this. And, with over 900 friends on his page, some of them doctors, I am appalled at the lack of response.

Does the autism community need hunger strikes? Do we need to get grass-roots and sit-in on some senators or insurance companies to get attention to the needs of our children? Have we really come to that?

Michael thinks so.

Earlier, he asked people to write the publicist he hired in support of his book. I wrote a lengthy email. There was not even an autoresponder from Ms. Barnett.

I want awareness, but I don't want our children or even our adults with autism to have to go to such extremes to get attention. Of course, he is free to do whatever he wants, but I hope by my writing this up in two of my blogs, that people will become aware of his journey.

I know April was Autism Awareness Month, but autism doesn't take a vacation or only show up once a year. It is a disorder that families go bankrupt over, marriages fall apart over, and mother after mother (and plenty of dads!) work from dawn until dusk, caring for their children. There are elderly parents still caring and truly worrying about what happens when they are gone.

I am not sure what I want to ask my readers to do. I do want you to click through to his pages. I do want you to support him. But, most of all, I want to open the dialogue. Is it time for the community of people whose lives are touched by autism to go to more radical ways. Is it time to go past petitions and walks?

What do you think?

SAT and Beyond

2009-05-03T23:16:00.004-04:00

I am sure to my son, it felt like Death. For me, I felt helpless at first, and then, determined, once again.

I won't know the grades for some time, but I just wanted to post that we both survived the SAT this weekend. We arrived 20 minutes early (I hate to be late!) and sat in our car to talk over any last minute things. My son never understands those talks. He always wonders why I give them. Somehow, the nervousness escapes him. He knows he has a big test in front of him, but that is no reason to talk about it 15 minutes before he has to go through the door. *Sigh* There are still days that I don't think I reach him. Days that he is still so distant and far away.

We stood in line. There were only a few other parents there. I went up front at one point to ask about his extended time, and was brusquely told that he was not on the list! What!?!

As I numbly walked back to where he was, I debated on whether to scoop him up and whisk him back home just out of protest. This was always our life. Mix-ups and promises that weren't fulfilled. Why did my son always have to do things the hard way? And, why did I always have to double-, triple-check EVERYTHING and EVERYBODY!?!

As usual, he sensed there was something wrong. How uncanny that he has this ability! For a child who is supposed to NOT know how others feel or sense the outside world, he can always sense my moods; my tenseness, my joy, even my tiredness.

"What's wrong, Mom?" he asked, in his lovely monotone.

"They are not giving you extended time. You will be doing the test with everyone else. That was not the way it was supposed to be!" I answered sharply.

"Well, I will just have to work faster," he replied, nonchalantly.

When did my little boy grow up to be so unflappable? You know, I can't remember the last time he had a meltdown. Challenges, changes and rearranges come, and he just adapts. Who is this young man next to me, sprouting a mustache and goatee?

I watched him go into the hallway with the other kids. I couldn't go with him. He walked down without a backwards glance. I choked back a sob. Goodness! It is hard to let your children grow up!

He took no snack. He told me, he could make it without it. Yet, when I picked him up, he looked tired and hungry. I admonished him again about the lunch I packed. He countered that he thought it was for me. We went through our usual dance of words, where I explained, why would I want a lunch, if I was going back home? Again, we came to the conclusion that he had not understood. I wondered my usual thoughts of how much more would he misunderstand in this world.

I asked him how he thought he did. He say "poorly on the math." I bit my lip. I knew the math was not his strong point. Unlike so many other Aspies, my son struggles with math and science, and loves English and reading, despite his mix-ups with semantics. With Math being 50% of the SAT grade, I knew this was not going to go well. And, with no extended time...

As calmly as I could, I told him that this was exactly what I wanted. As he stared at me with widening, incredulous eyes, I spoke the words he has heard from me so many times before for so many years.

"Now, we know where to start working."

Fix Your Child!

2009-04-27T21:27:00.008-04:00

I have got to stop doing this.

Starting out as a comment to a friend's journal entries on Trusera, I ended up writing too many characters to fit in the message box. Instead of deleting 258 characters, I decided to turn it into a blog post. This is the second time this has happened. Mostly, I just end up leaving really long responses. But, today, this ended up having a life of it own.

My friend was reading the latest assessment for her son. She was frightened and angry at the same time. She wanted answers. She wanted quick answers. She knew she wouldn't get them, but in her heart, she wanted them just the same. If someone could have walked up and handed her a prescription that would take all the deficits away, she would have taken it and parted with every earthly possession she owned to get it.

She didn't want to hear "nothing can be done." She didn't want to hear about how autism can be a blessing. And, I responded with my own, similar feeling.

Read on.
o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-

I would NEVER tell anyone that their child should or shouldn't be "fixed." That is not the right word for what you want to do. You want to help your child succeed. They need intervention. It exists and you want them to have it. There are so many ways to help our children. Therapies, tapes, DVDs, our own behavior and drive, etc.- all this can make a difference.

I realize that some people have severely delayed children, who remain non-verbal, wearing diapers into their middle school years. I realize there is a side to autism that is aggressive, violent and even dangerous. They are in a different place than you or I. Where I am, I can see a tunnel. It is a long one, but it has a faint light at the end of it.

When I was told my son needed a special school and would never graduate high school, I dug my heels in and fought. Every night, over and over again. Fought the delays, the stimming, the inattention, all of it. Through what I now know is called modeling, I shaped his responses. Eventually, we could understand each other. Not always, but enough. Once we could understand each other, then the real work began. Over and over, like a broken record, I explained the world to him. How he should stand; how close he could get to people. If he walked out of a room while someone was talking, how it would appear to the other person. How to hug. How to hug tightly. How to kiss his mother good-night. We even formed a ritual around that. We patted them into our cheeks to make sure they couldn't be wiped off. At 16, I still occasionally catch him doing it.

This Saturday, my son will take his first SAT. I don't expect high grades. I expect him to finish. As I type this, his practice test is printing. We will go over it, line by line. He will take the test again next year, his final year in high school. He is on time and on no meds. He has driving assessments, a 2 week career assessment with assistance. He will go away for 4 months next year to live away from family. He is not on the disability they asked me to file for him 11 years ago.

My 2nd son has speech, language and memory delays. We fight the lack of language skills through picture and video vocabulary, mind-mapping software, practice, practice and more practice. Even though his prognosis is more grim, I forge ahead and fight his brain's deficits. I expect more and each day, we, he and I, somehow get it.

This is my rant today and my advice. Don't ever stop fighting to uncover the abilities your child possesses. Whatever level your child functions, don't just accept and be content. You may end up like me; a tired, but triumphant mother of the best two people I know.

Roundup for the Unique Family

2009-04-24T12:33:00.005-04:00

As this site grows and new followers come on board, I got an idea from ProBlogger's Blogging Challenge to gather up some posts from this blog, and post them in one spot. It is called a "sneeze page." What a label! But, it is a good idea.

I would love to have this as part of my About Me Page, but this way, there will have a spot to send someone to, if they are looking for background information on any of the Unique Family.

So, here on one page are all the Updates, Updates. All of the posts from Part 1 through Part 5. It is not for anyone to read all in one shot, unless they are up to it. But this way, if anyone wants to get to know the family members, here is the page to find the background information on each family member.

Now, if I could only get some pictures from all of them, I could put them here, too! I am working on that one!

Links to all the Updates:

Hubby (Matt) - epilepsy, Obstructive Sleep Apnea, Depression, Anxiety, possible Bi-Polar or Manic Depressive.
Updates, Updates, Part 1

Youngest Son (Russell) - Dysautonomia, Chronic Fatigue Syndrome, Obstructive Sleep Apnea, Delayed Sleep Phase Syndrome, Tendinitis.
Updates, Updates, Part 2

Oldest Son (Andrew) - High Functioning Autism, Asperger's Syndrome
Updates, Updates, Part 3

Sister (Kim) - Obesity, Diabetes, Obstructive Sleep Apnea, Stroke Survivor
Updates, Updates, Part 4

Mom (Judielise) - Degenerative Myopia, Partially Deaf, Vertigo, Degenerative Disk Disease, Dust Mite Allergy, Arthritis (Osteo), RSD - 90% remission
Updates, Updates, Part 5

Update: April 26, 2009

Here is a pic from last year when family went to King's Dominion. It is the boys (Russell on the left and Andrew on the right) and I. Will work on getting good shots of the rest of Unique Family.

On Jenn Brockman's Radio Show Today!

2009-04-24T12:16:00.003-04:00

I was on a BlogTalkRadio show two days ago. If you don't know who Jenn Brockman is, she runs a blog and hosts a internet radio show, called Special Needs Kids. It is the first time beyond this blog, that I have been recorded and archived.

I tell you was as nervous as a groom on the wedding morning! I know it was just her and I talking over the phone. I know there wasn't a huge audience, but the potential of others listening today, tomorrow and even a year from now was a daunting idea.

I got through it okay, and received a lot of good feedback from friends. I could embed the player here, but it has a bad habit of turning on immediately once the page loads whether you want to hear it or not. So, I decided to put a link here and you can listen to it at Jenn Brockmans BlogTalkRadio page.

Let me know what you think!

Oh, and BTW, I have a chance to be on next week again, discussing Virtual Education in Maryland with a wonderful group of women from the non-profit group, Emerging Minds of Maryland. Put in a reminder on Jenn's page if you can join us or listen in archive.

It will be nice to be able to shrink back into the corner and let others have the spotlight. Once was enough for awhile!

Just a Video Today

2009-04-21T17:12:00.003-04:00

I got this Tweet in my stream today. It touched such a core rhythm in my spirit. In it, performers from all over the world play a song, even though they cannot see each other. The joining of musicians makes a living instrument of the earth, connected only through technology. Yet, aren't we all needing the same thing? Someone to stand by us?

After reading through the responses to my last post, I wanted to do something more. So, here it is.

This video interlude is a tribute to all my online friends, here and there all over the world. Let us forever make these bonds strong.

Playing For Change | Song Around The World "Stand By Me" from Concord Music Group on Vimeo.

Online Loss

2009-04-17T22:37:00.004-04:00

This week I realized how deep the relationships I have formed online can go.

On Twitter this week, I read about one follower who had surgery. In another tweet, one mother wrote in that a fellow "TwitterMom" lost her little baby girl. In my company, I received a thank-you card from a grieving family, whose daughter died suddenly in a motorcycle accident. And, then finally, I received news from one of my social communities that a woman I had welcomed into the group had passed away yesterday.

That was the straw that broke it for me.

I know I belong to a invisible disabilities community. I know that many of the members struggle with diseases and disorders, some treatable, some incurable. Some deadly. But what caught me completely off guard was the realization that I have never laid eyes on any of these people.

Every one of them were connections I made through the technology of our present age. Through screens and text. Through digitized pictures and personal online journals. Through little 140 character messages sent from one geographical dot on the globe to another.

This won't be a long post today. My heart is so full of emotions. I wish I could be there to wrap my arms around family members. I wish I could stand by as they lowered little caskets and tossed flower petals. I want to come by the next day or the next week with a casserole and leave it wordlessly in the fridge. I want to do someone's laundry; weed someone's garden. Something to show I care and am nearby.

But, I can't.

I can only text back my condolences.I can send a card. I can leave memorial pictures like the one above on personal profile pages. It may not be what I want to do, but it is something. When words are not enough, any action can convey love and compassion.

That's all I have for today.

Oh,no. I do have one more thing to say.

If one more expert and guru tells you that Twitter, Facebook, LinkedIn and even MySpace are a waste of anyone's time, just tell them about all the mothers supporting a mom who lost her baby. Talk about the family that received cards from complete strangers as they buried their daughter, surrounded by her teenage children. Tell them about this blog; send them to this post.

I just have one thing to say to them. If it connects people, it matters.

Dear Kid Saturday

2009-04-11T10:34:00.005-04:00

Dear Kid Saturdays at Cutest Kid Ever

I just met another wonderful Mom who runs a blog, called Cutest Kid Ever. She sent out a tweet asking other Moms to participate in a Dear Kid Saturday. I think it is a great idea. Thanks! Here is my Dear Kid Saturday post.

Dear Son,

Today, I was telling someone else about how proud I was of you. But, it is important to tell you. Often, I forget to tell you how proud I am of your accomplishments. That is going to change.

I am proud of the way you have handled the medical and physical changes in your life. When I look back at the pictures of you as a young boy; how athletic and energetic you were. It is hard for me to accept that those days are the past, and we may never get them back.

I have one particular memory that stays with me always. I remember when you were in junior firefighters, and the older men had that joke to put all the firefighting gear on the kids and see if they could walk down the fire station hall. I remember how each kid tried and never made it more than a couple of steps. Then you timidly raised your hand to try. Everyone knew you were a big kid, but no one thought you could do it either.

They loaded you up. Boots, full uniform, helmet and oxygen tank. For a second, you looked like you would topple over. But slowly, ever so slowly, you walked the entire hall and back.

Not a sound could be heard the whole time.

I started crying, wishing I had brought my camera, and as the whole fire station meeting hall erupted in applause, I knew then, that nothing would ever stop you.

Today, I feel that same feeling. Even as you hobble with the brace on that bad ankle. Even as you plop down in a chair, tired from the slightest exertion. I am proud of you.

You aren't the athlete and junior firefighter anymore. Today, you have taught yourself Flash animation, gaining respect from much older animators online. You are the friend everyone counts on in your chat rooms. You make one little girl feel very special even though you have never laid eyes on her.

Regardless, of what comes; sickness, disability, more surgery, I know you will overcome. You will carry whatever weight God places on you. Slowly, but surely, you will make it across whatever road is in front of you.

Mommy loves you and is so proud to have you as my son.

Love,

Mommy

Five Things To Do When Your Life Hits a Brick Wall

2009-04-10T01:10:00.005-04:00

Everyone these days seems to write a List Post.

And, since I am part of ProBlogger’s Challenge, I am supposed to write one, too. Actually, I was supposed to write one three days ago. That was Challenge Day #2 and here I sit at almost Day #5 without it written. I am falling behind.

This morning, in my favorite musing place - the shower, I stood thinking of what I could say. I just didn’t want to quit the challenge, because I was stuck at Item #2.

You see, the problem is, I am not an expert. I never finished college. In fact, I am in school now, finishing the degree that never was. Life, children and disability got in the way of that.

I haven’t written a book, so you know I can’t be an expert. There aren’t any publishers knocking down my door to read what I have written. Nope. Not one.

I don’t have 15,000 followers, so you know I am not one of those “experts of SEO” or Social Media. I am definitely not up there on the Tweet graders and stat sites. I counted it an honor when Chuck Jones’ daughter or Dr. Bernard Harris followed me and hoped I had something wonderful to say to touch their hearts.

What the heck did I have to say to anyone in a list? A list they should follow. A list that would make them say, “Thanks Judi, for that.”

Then, as usual, a thought came, standing there in the shower. I will write about ten, no five (make it easier), five things to do when...your life hits a brick wall.

There, that was catchy enough. A little quirky and offbeat, but, there it was. At least a title. But, what did I mean?

I can only write what I know from my experience. And, in my 30s, I hit a brick wall, figuratively speaking. Literally, I was told to go home and give up working for the rest of my life, because I was suddenly part of the 650 million people in the world considered disabled. And, it took many years to come up with these five things. Many years of doing things wrong, doing things the way everyone else told me to do them. Until I hit upon the way to get passed every brick wall in my life.

So, here is my list:

The Five Things to Do When Your Life Hits a Brick Wall

1. Grieve Your Loss

This is big. You have lost something. Sometimes, when you are suddenly disabled, you lose a lot. You job, your career, your home, even your spouse. Even if it is not catastrophic, you have lost something. And you need to vent. Go ahead. If none of your old friends will listen, get some new ones. There are communities like Invisible Disabilities Advocate, Disaboom or the latest one, started by a friend of mine, Rudy Sims, Disability Resource Exchange. Find some people who know exactly how it feels. And, then scream. Cry. Wail and curse God. Seriously. This is so necessary.

If something has died in your life, give into the need to mourn its loss. Without this, you will be stuck in denial and anger, swinging back and forth like a pendulum. Feel all the panic, battery-mouth tasting fear of facing that ugly thought that something in your life has changed and this change might be around for the rest of your life.

2. Get Help Before You Burst

Now, you say, Judi, this sounds a lot like No.1. Yes and no. This is the point at which you are not venting anymore. You are not in some depressed state. In fact, you are so alert, you could scream. If you are bed-bound, nothing on television interests you anymore. The phone could ring until its battery died. If you are in a wheelchair, you have rolled a groove into the carpet. You are past angry, fearful and broken. You are at the stage of saying, “Well, what the heck do I do now?”

First, congratulate yourself. You are making progress. You are bored. You want something to do. Now, go out or get online and find every rehabilitation center, disability advocacy group, volunteering service-virtual and offline, and begin to find your new purpose in life. You don’t know what it is, but for the first time, you are not thinking of your loss. You are thinking of your time and how to spend it.

Ask questions. Go to the library or read books online. Read blogs. Join social communities. Suddenly, you will find the whole world is still there, waiting for you. All you needed to do was awaken your mind again to the possibilities. Expanding your mind is always the first road toward redemption from any brick wall.

3. Take Your Time

What!??! Didn’t you just tell me to get started on a bunch of things to do? But, here, you get the benefit of my experience and mistakes. Yes, you are ready to launch, but you are not the old you. You may have limitations, both cognitively (have you ever been on 16 pills a day?) and physically. You cannot jump into anything without making plans. I launched so many things between the date I was sent home and now. All of them failed, because I still thought I could do things the old way.

Whether you face a chronic illness, a physical disability or take medicine to keep your system stable, you are now operating differently than before. And, this needs a different strategy. Perhaps you will need to be driven places you used to not think were so far. Maybe you need a bigger screen and make the icons really readable. Maybe you have to travel with a little magic bag of all the medical devices you need. Slow down, figure out what you need to get there and get those things together first before you leap. This leads me to #4.

4. Re-evaluate Your Life

What can you do? What skills do you still have? What can you learn? What would you like to do, now that you have all the time in the world? What do you want to be? Where do you want to go? What do you long to see?

In some ways, I feel almost happy this happened to me now. What a gift to start all over again. To make plans that as an older and wiser person, I might actually do.

Now, don’t get me wrong. This is no pie in the sky esoteric babble. After a brick wall, you life is radically different. You may be in a fragile financial state. Your health may swing into instability.

This isn’t some light stroll through the park. But, you get to redesign what you want to do, based on what you have left. And, you will be keenly aware of what you have left. You will maximize every strength, since you have increased your weaknesses. You will find power in your life, even in the midst of limitations.

I have learned to see this as a gift. And, when you hit a brick wall, you deserve one.

5. Re-commit To Life

This is so necessary, don’t leave it out. Commit yourself again to being part of the human race. Something tried to take you down and failed. People walked away from you and you have survived. Your house may even be gone, but you have a new place and you like the view a whole lot better from this one. Whatever it is, re-commit to life and all it nuances.

I have heard from many people that after their accident or stroke or whatever, they now appreciated the flowers and a cool breeze. The stillness of the air, interrupted by the low chirrup of far-flung bird and distant crickets. Whatever you feel is a new commitment to life, make it. Keep it. Against all odds that may come. Against any other brick walls.

Well, there it is. My list. I hope you can gain something from it. Drop me a comment if it spoke to you. Or if it gave you courage to move to your next step.

And, to ProBlogger: See? There are no brick walls anymore. Thank you for your Challenge.

Ankles, Schmankles, Part 1

2009-04-07T21:52:00.004-04:00

This has to be Part 1 because we don't see the orthopedic doctor for another week.

But, just to fill some of you in, this weekend, my young son "twisted/sprained" his ankles yet again. I say "yet, again" because we have lost count. Somewhere back in 2004, he began to fall, trip and twist his ankles.

First it was the right side, and then, as if by some strange decision, he only began to have problems on the left side. We have been to the two hospitals in our area. The second one knows us by sight now. We know the drill. I even call to make sure their Patient Fast-Trak is open. We don't need to sit there five hours just for someone to tell us it's not broke.

Not that it hasn't been broke. At some point between September 2004 and June 2005, he fractured the inside and outside ankle bones in that left foot. No one to this day, including doctors knows how he did that. He mumbled something about balancing on a ball. I told him he wasn't a seal as they put the metal Robo-boot on.

But it didn't stop.

A year later, running hurdles, he chipped a bone of the same foot. Wrapped up again, and afraid for further damage, I started hiding the skateboard, rollerblades and bicycle. Then, I listened as other Moms of athletic kids complained of broken bones, and I started to relax and feel a little better.

Until the bone didn't heal and nearly a year after that, the chip had to be surgically removed. He had been in almost constant pain, and I felt like a guilty criminal for making him walk on it.

By this time, I started to get worried. Everyone assured me, it was just childhood and he would be fine.

Except it happened again, and again. After awhile, whenever he walked, he said, his foot "cricked" and the pain would start. Sometimes, he could crick it back. Sometimes, he couldn't. When he couldn't, the pain was hardly bearable and nothing helped. No painkillers, ice, heat, pain patches; nothing. Except if he could crick it back.

Off we went to see more doctors. One orthopedist blew us off. "Kid is just accident-prone." Onward to the podiatrist. He thought that arthritis was setting in the area near the surgery, but had no clues on the ankles, since all the x-rays looked fine. He put my son on Glucosamine/Chondroitin and MSM, but the insurance balked at paying for prescription strength pain patches and orthotics.

This was where I was last week, when it happened again. This time, all he did was walk from the kitchen into the dining room, and "Aaaarrgghh!!!"

I knew the sound by now. I didn't even break a sweat. "See if you can crick it, honey," I called out from the dining room.

It wouldn't crick. Not then, not all night, not the next morning.

Off to the ER we went. X-rays are fine, but this time, the diagnosis was tendonitis.

Wait a minute. Not a sprain or twisted ankle?

No, he has tendonitis or tenosynovitis.

"From walking!?!" I shouted, not realizing my voice was rising.

I mean, since the dysautonomia diagnosis, he hasn't been the athlete. We just completed physical therapy for 2 months, so I know he's not deconditioned.

To make this saga short, we now have to see yet another orthopedist to see if someone can tell us something.

In the meantime, he continues to have sharp pains, feels better with the brace on and pops Naproxen when it gets unbearable.

I no longer know what we are dealing with here. Just last month, he began to complain of sharp pains near his hip whenever he twisted in the shower or bent over and didn't come straight back up. The complaints about all his joints have increased.

And as usual, I am on the Internet, looking, asking and searching for answers. Just pray that this doctor will bring this five year ordeal to a close.

Changing Blog Layout

2009-04-03T09:28:00.003-04:00

Oh, please bear with me as I try to change the layout of my blog!

Here I am a student, studying IT and I have come to the conclusion that I like people more than I like machines and code. I am more interested in connecting with you than making things spin, jump and rotate. So much for that Bachelors in IT. After I finish my Associate degree in IT, I will be moving on to either plain Communications or Web-based Communications as my next major.

So, I have changed this site not to make it snazzier, but easier to read and understand. There may be more changes, but I am looking for feedback.

Please let me know if you like ads and links on left or right. Let me know if you don't mind colors. Being a visually-impaired person, I tried to pick colors that are strong and dark for text and links. I also made the background white. This is best for most readers.

I will be adding a newsletter sign up soon. Why?

Because I want to let you know new things before they hit here (easier to dash off an email than to write a blogpost!) I promise you will NOT get more than one every 2-3 weeks. Seriously. I have enough mail in my Inbox. I know how you feel.

Leave a comment and let me know what you think.

Take care.

A Lightbulb Goes Off

2009-04-01T08:05:00.004-04:00

This started out as a response to one of my friend's blogpost. Mia, at General Hysteria, wrote a very important post about how she was finally going to change from being the MommyBot, to being a Mom.

MommyBot is my word for the mother who is running herself ragged tending to kids to her own detriment, and their spoiled rottenness. The mother who looks horrible, knows it and is so demoralized by her own tiredness that she has ceased to care. The mother that secretly wonders why she became a mother at all. I know, we all have "one of those days," but this is more than one day or two. Before you know it, this feeling stretches into months or all their elementary years.

Now, I know this is old school, but sometimes, I feel we are hovering too close, especially, if we have children with special needs or autism. I am not talking severe autism here. Those children do need constant care, especially if they can be aggressive or bolters.

No, I am talking about jumping at every call, every cry and every whine. Here is the response I was going to leave her. It got so long, it became its own blogpost!

--------------------------------------------------------------------------------------

Yaaay, Mia!

You don't know how happy I am to see this post!

Not knowing you as long as friends I have had for years, I didn't want to get on here and give you a good talkin" to, but I was really tempted. Perhaps my energy came through the Internet!

We can't give our children everything! We can't be there every moment. This is a left-over response from when they were really little and really needed that kind of care. I am not talking about severe autism that continues to need close supervision. I am talking about responding to every whim and noise.

One of the hardest things I have to do in the Unique Family is NOT run to the aid of everyone every time. With my bunch, there wouldn't be any of me left.

I don't know if you ever saw the movie "Ray," about Ray Charles. One of the most moving scenes was when he fell in their little home and his mother wouldn't come running to his side. She actually didn't even say, "honey, get up." She stayed quiet while her darling boy learned to rely on his other senses to orient himself to the world.

I keep that image in my head, EVERY DAY.

My oldest, Aspie son is nearly 17 now. He is so independent, it scares me, but I am happy. No one will take advantage of him. He knows how to shop, cook, clean for himself. He is learning money management and how to save. As we work with DORS in the next two years to get him working, he will be ready to be on his own.

My youngest, on the other hand, is my whiner, mommy's boy. And being chronically ill, makes it worse. Yesterday, he wanted to make a cinnamon toast sandwich. I told him how to make it. He went to look for the cinnamon and couldn't find it. Normally, I am just on "auto" and jump up and get it or even make it. But, recently, I decided that at 13, nearly 5'10" and 211 lbs, he is big enough to start learning the truth about life and his condition.

I told him two places to look, how to spell it and what color the bottle was. Five painful minutes went by. Everything in my heart strained to get up and end it, but I stay glued stubbornly to my chair. He literally took everything out of the top spice cabinet, then walked in and said he couldn't find it.

I sighed but stayed put.

"Go back," I said. "Look for this word," writing 'cinnamon' on a piece of paper, "It is either in the top spice tier or the one with the door on it."

He responded,"Oh, I didn't hear the second part." This is common in speech/language disorders and short-term memory deficits.

Back he went for ANOTHER 4 MINUTES! I was positive the toast was cold by this time.

But he found it. He called out triumphantly, "I got it!"

Trying to stay as calm as possible, I said, "Very good, now finish the sandwich. Do you remember how to do it?"

"Yes," he replied.

A few more minutes later, he emerged from the kitchen with his sandwich on his plate. He sat, ate it in silence and then said,

"Thanks, Mom," as he went to clean up and saunter back into the living room to watch TV. He practically fell into the easy chair, obviously tired from that little bit of exertion.

But, I got a "Thanks, Mom."

Not because I made it for him. I usually have to say "Now, what do you say?" to get the proper 'thank you.'

No, this reply was based on something different.

I didn't save him. I didn't make it easy. I made him do it. And, he thanked me for the experience.

Moms, I know we straddle a very tall fence. Spoil them or fear we are neglecting them. Run to every call or see if they can work it out for themselves. Don't be too hard on yourself if you are one side or the other. I straddle that fence, falling over to one side or another, too.

But, I think I am finally finding my balance. You will, too.

Take care.

A Hard Life Ahead

2009-03-28T15:01:00.004-04:00

After the last post, I really hate to change the direction and emotional energy of the blog, but this is supposed to be a real account of the kinds of difficulties the Unique Family goes through. So, today, I am going to cover an area of my life that is unfolding even as I write this.

A while back, I posted an audioblog that attempted to reveal some of the turmoil that has surrounded my personal life for the last several years.

I am talking about my husband and the multiple areas of his life that we are finding out are stunted and deformed.

When I wrote his Update, Update, Part 1, I focused on the epilepsy and sleep apnea, and only lightly touched upon the depression into which he slips every once and awhile.

Today, I am going to tell you what I think is going on. Now, I am not a doctor. We haven't seen any doctors to confirm anything yet, but if there are any parents of children with autism, adhd or learning disabilities out there reading this, you know a problem when you see it.

For years before I met him, my husband put up a very good front for his family and friends. He projected himself as a friendly, outgoing, funny, computer entrepreneur. He had loads of friends, loved to eat out and go to the movies. And yet, certain things didn't line up. Little stories would sneak out now and then.

Like his fear of needles. No one loves them, but we would not jeopardize our health to avoid them. He would.

He seemed to be indecisive. Any decision took so long to make and then he second-guessed himself two, three or more times.

The people closest to him didn't seem to be going anywhere. For all his "out-goingness" and entrepreneurial drive, he picked people that weren't progressing or growing to be his closest friends.

His family, openly verbally abused him, calling him very degrading names.

Still, he seemed to be looking positively into the future when he met me, and he wanted my children and I to be a part of it. He won me over with his sense of humor, his loyalty and patience, especially since he walked into my life when I was on a downward spiral with my health.

But,the truth is, the whole thing was a facade.

He is not a successful businessman.
He is not a person who can lead a business or a family.
He cannot handle financial responsibility.
He does not have many friends and frequently offends the ones he has.
He is not respected at his job.

I could go on, but, one, I think you get the idea, and two, seeing it in print is depressive.

But it is the truth.

The past several months have been one of major enlightenment for me as the house of cards slowly fell apart. Financially, physically and emotionally.

When I did the audio-blog and even the post about going on a Faith Walk, it was in the midst of understanding that the task before was not small. It was a monumental undertaking that might drain everything I had in me in order to see it through. I faced the fact that my marriage was not going to be what I hoped it would be, followed by a little trickle of fear that hissed, "Run for your life!"

Today, almost a month since the beginning of the Faith Walk, I'm ready to state some truths and affirm the mission I intend to embark on as long as I can.

The Truths:

1. My husband is a survivor. He has survived verbal, physical and sexual abuse.
2. My husband has epilepsy and sleep apnea. This may have affected his cognitive functioning.
3. My husband may have a learning disability.
4. My husband suffers with emotional disorders, specifically depression and anxiety disorder.

My affirmations:

I believe that my husband is not a malicious, mean-spirited person, but that for so many years of not getting the help he needed, as an act of survival, he uses deception, lies and fantasy to cope with his deficiencies. He lies not only to me, but to himself.

I believe despite all of his difficulties, he can feel love and does love me and my children.

I believe we are living in the best of times to get help for the ailments/disorders he has.

I believe intellectual and mental disabilities need to be treated with dignity, respect and kindness. Negativity only reinforces the need to deceive and hide.

I believe that the future will be a rough one. I cannot guarantee that I am cut out for this. I respect my right to say I can't.

I ultimately believe that love is the ultimate key to solving these problems. Without love, I turn off the ability to seek information to alleviate them. Without love, I cannot act with compassion. Without love, I manipulate and abuse, making me no different from his other abusers.

I don't know what else to say, except to ask those who pray, do so. Those who believe in positive energy, speak words of affirmation about us. Those with similar knowledge or life experiences, speak freely.

I appreciate everything and anything you do.

Photos were taken from Google Image searches.
Final painting is the work of d.Lawrence Coyle

Snazzy Pink Socks!-And They Feel Great, Too!

2009-03-24T16:21:00.006-04:00

I am going to have to start a section in my blog called "People I Met Through Twitter."

Maybe, it will be on the new blog site I am currently slaving away on day and night. If you haven't read Momentous Decision, click here to read it. It talks about my idea to start a new blog. The end result is not exactly like I posted, but it outlines the spark that ignited my dream of new bloggie directions.

But this post is about a wonderful company I befriended on Twitter called Smart Knit Kids. Actually, the company is called Therawear and one of their products is called Smart Knit Kids. Their Twitter name is @smartknitkids.

Twitter is a great invention and businesses are getting on everyday. I think that is wonderful, but if you are not willing to do what @smartknitkids did, come to the front of the classroom, listen and learn.

First, even though there was a logo (everyone wants to tell you to put a face; not necessary), the person tweeting came across as real. They laughed (LOL!) email-style, they conversed and then presented a product I might be interested in. They explained the benefits to me; how it was a product specifically made for my children's sensory needs.

Next, they said, "We would be happy to send you a sample."

Hello? Something FREE? Yes, we love that. So, we exchanged information through a DM.

I was expecting a pair of socks. In less than a week, I got five. Two for each child and one pink pair for me. (Now, pink is not my favorite color, but I was intrigued.) The package came by UPS and included an handwritten note.

Okay, that blew me away.

But, what was better, was that their product lived up to what they said.

Instant integrity.

My oldest, who has Aperger's immediately put them on. Lately, he has a thing for socks and I am always looking for good ones. My youngest son, who has all manner of podiatric problems and is always complaining of ill-fitting socks and hurting feet, tried on the Large, but really needed the Xtra Large. That fit perfectly.

Well, you know I have to have customer feedback. The exchange went something like this:

"I think the large is too small." - young son
"Well, more for me, then." - oldest son
"Hey!!" - young son
"Here is the xtra large for you. How is that?" - ever-vigilant Mom
"Oh, that is much better. Perfect." - young son
"So...how do they feel?" - worried Mom, who is accustomed to rejection.
"They are fine." - young son
"Yea, just fine." - oldest son

Now, that may not sound like music to anyone's ears, but in my house, that is a rave review! Neither one of them gave them back or took them off. In fact, three hours later as I write this, they still have them on.

Success!!!

SmartKnitKids Socks 001
Originally uploaded by judielise

Next, I visited their site. I was a little shocked. It was your corporate-looking website with an online store that I have probably Google-searched passed many times. But, I knew someone in here. Her name is Rose. She sent me a note with her name on it, so I was comfortable. I found the socks, priced them and prepared to place our first order. And, their socks are value-priced compared to other specialty sockwear!

Now, some may say, well, Judi, of course, you write a good review because they sent you FIVE pairs of FREE socks.

Okay, you are missing it. They didn't have to do that, I didn't have to even talk to them online and this whole thing could not have happened. I could be blogging about something else, but I am not.

I am blogging about a company that wasn't afraid to get to know me, the customer, before they sold me a product. Then, their product lived up to their word. In other words, there was a connection. One of honesty and friendship, and a sale.

In my new blog, I want to write and discuss all about these kinds of connections. Big and small. Online and off.

And, Therawear/Smart Knit Kids will be in there.

Thanks for not spamming me and thanks for making a quality product. And, this is the only time you will see a posted picture of me in pink socks! Only you could get me to do it!

SmartKnitKids Socks 002
Originally uploaded by judielise

And, of course, Mom has to clean up.

Empty Box
Originally uploaded by judielise

All pictures are publicly available on Flickr

Short Update

2009-03-21T09:46:00.005-04:00

Just a short message today.

The kids have to get haircuts today and we need to do grocery shopping. I am starting the third week of new classes and the work will begin to pile up from here on out. I love how teachers lull you in the beginning and then BAM!, read 8 chapters and give me 2000 words on this inane subject written in APA style.

But I digress.

I just wanted to let everyone know...WE HAVE HEAT!

Yes, our homeowners' insurance office sent someone over to look at our poor old furnace. It turned out to be a busted thermostat (!!) and a connection that needed to be reset on the furnace. Another person told us that the gas valve had died and the whole furnace needed to be replaced...to the tune of $1800.

The guy from the insurance told us that even though it is the original furnace: "you know, they don't make them like this anymore and you have more life left to it."

In other words, the furnace is fine. *Sigh*

All I can say is paying the $335 was better than $1800...and my Popsicle Toes have thawed out.

Take A Cartoon Break! But This is Not My Life, Seriously!!

2009-03-20T11:38:00.004-04:00

I had to reprint this animation. Found it on Web Strategy by Jeremiah. It is such a funny take on the Twitterverse, of which I am a serious twember (Twitter Member).

I can't tell you the people I have met on Twitter that now are a serious part of my life. I have mentioned some of them in other posts. I hope to be able to talk about more.

So, now, sit back and enjoy this cartoon break.

Updates, Updates Part 5

2009-03-18T09:38:00.005-04:00

Two for one.

I don't often post two times in one day. Even, though I may often have more things to say, I try to keep the posts down to one a day. And, they have gotten shorter and more to the point (I hope!).

But, today, I had two things to say. One was announced in the post below this one. The other is to finally finish a series of posts regarding my family. This post makes Updates, Updates, Part 5. I finally have to talk about myself.

Sometimes, this is very easy. I feel I could talk about myself all day. Not sure you want to hear it, but some days I am so in touch with who and what I am, I could go on and on. Other days, I question my reasons for being, my motives, my ever changing and unenlightening emotions, etc. Basically, some days, I don't know who the heck I am or what the heck is going on.

But in Updates, Updates, I usually focus on the reason each member is a part of this Unique Family. When it comes to me, I am a member, because, well, I was the one who heard the phrase in my head, that fateful morning, when I didn't think I could go on anymore. I heard "You have a Unique Family." And, it was I who had to place myself in the Unique Family first and then bring the rest.

Without sounding too psychological, I had to see myself as part of something unique and wonderful, even when, on the surface, it didn't look that way.

I certainly didn't feel like I wanted to be included. Certainly didn't feel like I would write about it, either. And yet, both of those things happened. So, I will try to write about myself and what I face every day. I have struggled with some limitations from early on and others surfaced as I got older.

For all I can find out, I was born visually and partially hearing impaired.

I didn't find out until I was 37 that I have degenerative myopia. That is a fancy way of saying my vision never stops changing. I usually have to change my glasses every year or so. It is at the point now that I have to use assistive technology to get things done - CCTV, large 22” monitor on my computer, large text and icons, text readers and speech to text synthesizers, etc. There are other items I would like to purchase, like an Optelec Farview. This would help me outside of the house. I still have a driver's license, but I don't drive much, and never on the highway. My life and the lives of others are too precious to me.

I have also learned that my hearing loss is not just about being partially deaf. I have permanent nerve damage in my inner ear, which has caused vertigo to be a permanent part of my life. I had a few episodes of it as a child, but after 2006, it decided to show up every day. There is therapy, and I may try it, but for now, three different meds keep the world from shimmying, and the nausea and migraines at bay.

I have mobility impairments (herniated discs - 5 in all) as well, but most days this is hardly noticeable. After being practically bed-bound for a year, I had back surgery in 2005, that returned me to the land of the walking, but, no hikes, long walks or drives for me. I can drive 20 minutes one way, but the return trip, I will pay for it. Anything longer, someone else is doing it, and even then, I will stiffly get out of the car.

I have an allergy to dust mites that I didn't know about until last year. Due to this allergy being untreated all of my life; I also suffer with multiple chemical sensitivities and a weakened immune system. I am getting stronger (I made it through this whole winter without one cold, flu-like episode or bout of sinusitis! Not even a runny nose!), but I still can have violent reactions to fragrances, everyday cleaning supplies and chemicals, and dust that can halt my activities in a second. I don't need an epipen, but I will always have Benadryl, Zyrtec or Allergan handy.

I continue to battle diabetes through diet (vegetarian/vegan) and herbal supplements, but have had to start taking meds for hypertension.

Since I have been treating my allergy and the inner ear problem, I have not suffered much with bruxism, TMJ or trigeminal neuralgia (TN).

I have survived and overcome Bell’s Palsy, RSD/CRPS, optic neuritis, and a 40% disability in my lower left leg (due to a fractured tibia that went undiagnosed for 3 weeks). I have had seizures, multiple faints and chronic fatigue syndrome-like symptoms since my late 20s.

To look at me, you wouldn’t be able to tell all of that. In fact, if I go back to wearing contact lenses, you won’t even be able to tell I have a vision issue. I am truly a person with invisible disabilities.

If you read the post on "Learning to Be Less Than Perfect," you know that during my childhood, most of this went untreated. As an adult, I didn't really acknowledge my weak state of health even as I was staring disability in the face. I continued to work and ignore my health needs, trying to be stoic like my parents. Even after receiving disability, I continued to try to work; at home and in temp jobs. I only stopped in 2006, after the bout with Bell's Palsy left me shaken, broken and scared. I had to pay attention or no one knew what would happen next.

I thank God, today, for that life-altering experience. I would not be writing today, starting an online business, making the friends I have, if I had not faced one of the most difficult periods of my life.

Here I go again, making a really long post. Sorry.

So, now you know a little about the final member of the Unique Family. The one God chose to bring these stories to you. Perhaps this is one of my purposes in life. I hope it makes a difference in yours.

P.S. While looking for a pic for this post, I came across this quote from The Jungle of Life:

It is not the mountain we conquer but ourselves. - Edmund Hillary

Momentous Decision

2009-03-18T08:45:00.006-04:00

After this post, I am going to begin another blog.

There it is. That's the big decision. Kind of a let-down, maybe? Well, I took all night to decide this.

Last night, after thinking long and hard about it, I decided to start a blog related to my business. It will be self-hosted through my hubby's hosting company and it will chronicle An Extra Hand Serivces' rebirth; its twists and turns, stops and starts. I also want to have another platform for announcements, giveaways, business and financial tips and motivational, encouraging lines for businesses, big or small.

What about this blog, you ask? It is going to remain exactly what it started out to be: the events in the life of the Unique Family. I don't want to water down the message of how we live with chronic illnesses and disabilities with "Hey, click here for this or that!"

I know, you are thinking, most people wouldn't separate out their business from their personal. Well, for me, this blog has always been about making friends, sharing stories, baring our souls, laughing at pictures and comments of encouragement. And, I want to keep it that way. It is dear and precious to me. It has helped me get to the place that I can even think about working again on a business idea.

The new blog will be about business; running one, setting up one, getting customers, hitting roadblocks and overcoming them. I hope to have guest bloggers, who will give tips and inspiration. I will upload videos (not of me!-if you listened to my audioblog, you know I have no stage presence!) and have more of a community spirit to it. Of course, friends will be there, too, because many of you have businesses, so there will be an overlap.

Think of the new blog as the home office (where home may intrude a little!) and this blog as the living room, where it is all about the home front.

I hope everyone here will also come into the office every once in a while. You are always welcome!

Learning to Be Less Than Perfect

2009-03-16T20:59:00.003-04:00

I received my final grades today. One A and one A-.

Now, why do I look at that A- and wish it were an A? I mean, I came so close. I was at 94.73, but my final project fell short of the instructor's rubric, so I didn't make it.

I admit it is my mother talking. I had a seriously Type-A Mom, back before they had terms like that. If you brought home a 95, she'd say "why couldn't it be a 96 or a 97?" I once received a final grade of 99 in a biology class. A final grade! And, yes, she asked me (and the teacher, mind you!) why didn't I get an 100? No one had ever got a 99, and she kept pushing for that perfect grade. The pressure used to be ridiculous. It didn't help that my older brother graduated high school at 15 1/2. Being the middle child, I was expected to be as good, if not better.

I wasn't.

I was the artsy, dreamy, talk to myself under the kitchen table-type kid. I sat in mimosa trees, smelling the blossoms and deciphered shapes in the clouds. I started out badly in school, nearly flunking 3rd grade.

Was I too rambunctious (old term for ADHD)or didn't turn in my work? Nope. I just talked too much! LOL!! I laugh at that now. I just couldn't stop getting involved with everyone in the class and finding out how they were doing. Well, my mother had a real good talking to me (in those days, that meant, spanking) and I realized that I wasn't going to master anything talking all the time. So, I buckled down. Real hard.

And, went on to be salutatorian of my middle school and graduate in the top 2% of my high school class. And, still, she kept pushing for more.

Little did she know that physically, I was pushing myself to utter sickness and exhaustion. I never missed a day, until one day, in utter pain, I just walked out the the school. Top grades and all, I needed to rest.

College proved to be disastrous. My eyes couldn't take it and my body seemed to be constantly racked with some virus or flu. To my darling mother's utter consternation, I never finished a degree. Five colleges and no degree. She was mortified. I really think I was relieved.

Now, I am the parent and I have two lovely boys, who are far from stellar in grades. My older Aspie son is average, not your savant Aspie in any way. My youngest son probably has permanent memory damage and has a speech/language deficit. I learned early on that I could not have the same attitude of my mother. I had to cut them some slack.

And, today, I realized that I have to cut myself some slack, too. I deserve to be okay with less than perfect. I deserve to turn the record player of parental disapproval off and enjoy my return to school.

On Twitter today, @steveKrull wrote this:

Some days I face #autism head on. Some days I hide from it and I don't know exactly why. Answers?

I answered with this:

But isn't that like life? Look at the hiding days as reflective. No one takes life on head on everyday. Even God rested. #autism

Boy, I am sure my mother is rolling over in the grave. But, when I look back on that tweet, I realize I have learned to take it easy. Perfect grades don't make perfect lives. And, all of us have something to offer, even if it is less than perfect. Some days we are gung-ho, and other days, we need to hide.

Hmmm, haven't I come a long way.

Thanks to autism and dysautonomia, and learning to love my dreamy, nurturing, artsy self.

Birthdays and All Things Good Today

2009-03-14T14:19:00.003-04:00

In the midst of every storm is a little light.

Today, is my young son's birthday and I invited several friends over. He never get to see most of them since becoming homebound, so having guests over always puts a smile on his face. He walked by just now and said, "It's not that bad, Mom. It's almost as good as going out." Bless his growing heart!

With the little I scraped together, I bought a huge picture cake from Giant and three Ultimate Meat Pizzas from Walmart. The first pizza was inhaled between Kirby, Kingdom Hearts and Supersmash Brothers Brawl. I got two slices from the second one(I still eat meat, even though most of my regular meals are veggie). Now, there are calls for the cake. I will have to make this quick, so I can get back to lighting candles.

Just to hear the sound of laughter and good innocent young teen ribbing felt good. The house wasn't too cold today and everyone pitched in and cleaned three rooms in half an hour.

Sometimes, good things happen in the midst of it all. Thank goodness for those times. I use them like finger holds, clinging to each meager one as I continue to climb.

Very 1st Audioblog - Facing Self-Discovery and Sneaking Out the Back Door

2009-03-14T09:03:00.005-04:00

Have you ever had something difficult and you couldn't even write it down?

I am going through some difficult times and I ended up using an audioblog for this post rather than write it. I wrote somewhere, that writing things down makes them permanent. So does blogging, audio or not, but it was just easier.

The Unique Family just got a little more unique. Unique, hard to handle and difficult to talk about.

Listen if you want. If I feel comfortable with this, I will make more.

Take care and hold on, regardless of your situation.

Wii Fit and Dysautonomia

2009-03-13T22:28:00.006-04:00

Okay, I have been tooting the business horn for a little while here. It is important in the Unique Family, due to our current precarious financial situation. But today, I am going to talk about the young son. If you have read Updates, Updates Part 2, you know my youngest son has a rare disorder of the autonomic nervous system. In simple words, it doesn't work properly. My explanation for this is usually, think about whatever you don't think about in your body; heart rate, blood pressure, etc. Okay, now imagine if all those things didn't work the way they are supposed to. That's Dysautonomia. If you want more information, click on the title of this blogpost and you will go to the only support group for children with this disorder.

Well, my son's birthday was Thursday and he is now 13. I have been commanded to not refer to him as a "boy" anymore, but a young man. I will try to comply without giggling. I can still remember chasing a soaking wet naked, shrieking body down a hallway!

Back to the point I was trying to make. I took a little bit of money and bought a Wii Fit. Yes, we have the Wii. It actually was bought six months before Christmas 2008 and stored away for the end of the year. Now, we have the Wii Fit.

Boy, was he excited. Everyone in the house did their balance testing (don't ask me about mine. That board and I are not on speaking terms right now.) and then he went on to try everything: step aerobics, yoga, walking in place. Whatever that board came with, he tried it before the night was over.

Enter the next day.

First, he couldn't get out of bed. Then he spent the entire morning moaning, groaning about his back, sides and legs. Sounds no different than an out of shape person, right?

Except that along with the stiffness came the crushing fatigue. He was not able to do anything past open a food packet for the dog. When we went out on an errand, he sat in his wheelchair the whole time and only lasted one store.

Such is the life of someone with dysautonomia. While I am grateful he can even stand up without fainting now, and he managed to do two sessions on the board, it will be days before he is back up to anywhere near normal. This was supposed to be a alternative to the mind-numbing physical therapy sessions we were trying for the last two months. Sessions that were boring, time-consuming (have to drive to the hospital) and produced no results.

And, doubling his main medication has not seemed to make any difference. *Sigh*

At least, the neighbors will have something to do when they come over.

New Service For An Extra Hand Services

2009-03-11T21:36:00.006-04:00

Two or three blogposts ago, I announced that I would be resurrecting my old business, An Extra Hand Services. Poor thing, she doesn't even have a website yet! Not even a email. For now, the little company that could is just trying to breathe its first breath.

But, as God would have it, yes, I am mentioning God, good things have already begun to happen the very day after that post. You may call it the Law of Attraction or a superior power, it doesn't matter to me. What matters is the real changes and miracles that happened within a week.

Within this one week, people have just been walking up to me and blessing me with money. I don't know if they know our plight, but they come up with some silly reason, like, "oh, thank you for driving my daughter to school the other day, Here's $20.00."

Now, you and I both know a car ride for less than 3 minutes would never cost that, but she pressed it into my hand and walked away.

Here's another one. My brother, who borrowed some money from us last year and never paid, sent us a check. For the whole thing. $1500.

I know I don't have to put numbers out there, but numbers speak volumes. I want you to know this is real.

And, just yesterday, I discovered a service that I would love to offer through my newly re-birthed company. It is called Send Out Cards. This, to me, is just the kind of thing I like. Something that can make a big difference with just a little time.

Sent Out Cards allows you to pick a "real" card from over 10,000 cards online, personalize it, even upload a picture and then somewhere in Utah, they print a real card with your words and send it to whoever you want.

A real card, everyone. Not an e-card with an expiration date on it. A real card stock greeting card with a REAL stamp on the envelope. Of course, I am knocking my head and going, "Why didn't I think of that?"

In these days of Twitterific tweets, e-chain mail and suspicious links, wouldn't it be nice to get a real card in the mail? I sure think so.

I think it is such a great idea that I am offering to send a free card to 10 people who email me with their addresses. Or better yet, I will send it to someone for you. And then I will blog about the results and your comments.

Send your addresses to: agapepantry@yahoo.com (this is a 2nd email address I have. Must tell you the idea behind that one day!) The first ten full mailing addresses I receive, I will send card to it. It could be to you or to someone you know needs to get a card right now. Tell me what kind of card you want sent. And, what you want it to say on your behalf. I just want you to see how easy this is. And, if I could do it, you could do it, right from your computer.

Also, send me your birthdays. Once I get them into their easy-to-navigate contact manager, I will never forget them again (I usually forget EVERY year!)

If there are any businesses out there that would like more information, please send an email to that address as well. I am setting up commercial accounts and am happy to be your back office and help you reach out to your customers, clients, prospects, friends and family. In these recessionary times, it will be appreciated so much more. A real card with real sentiment. There is even a way to send in your own handwriting so that you can "type" in your own handwriting.

An Extra Hand Services is proud to be a independent distributor of Send Out Cards.

View the video below to see a heartwarming true story related to Send Out Cards:

Send Out Cards Intro DVD

And, don't forget those addresses, and your names!

Asperger's and the SAT/ACT Test

2009-03-07T07:46:00.007-05:00

How I got here, I don't even know.

From a child that rocked and flapped and disappeared into his own world to a junior in high school, who is facing the stiffest tests in any young person's life. Don't ask me how I got here. One day at a time doesn't seem to do it justice. And I haven't gone crazy and neither has he. Don't say there aren't miracles.

I don't know any numbers and I am too tired to do the research, but how many children with Asperger's take their SATs or the ACTs? I am not talking about gifted Aspies. I am the mother of the run-of-the-mill child with average intelligence according to all the tests he's taken, but with definite below-average verbal skills. I won't parade the numbers in front of you, but he was diagnosed with Receptive/Expressive Speech Disorder since he was in elementary school. His recent testing put his reading comprehension age around 8 years old. And yet, his word recognition age is around 21 years old. Should he even attempt the SAT with a vacillating scores like that? He is pulling a C in Math and we have struggled to keep those grades in the high C range. It just seemed too far out there.

I know this is a side topic, but he is always talking outside the box,
creating new words and positively amazing us all with his quirky insights.I have talked/tweeted with other mothers who tell me great stories. I still remember a child grunting, whistling and humming.but now, he loves to create words that aren't in the dictionary (he knows this, because he loves to read the dictionary!). One word that family and friends have adopted is "linner." Linner is the comparative word for brunch. Brunch = breakfast and lunch. Linner = lunch and dinner. Linner is like a very late brunch or early supper. I told him people used to use the word supper, but he just replied, No, Mom, that word is used just like dinner now, so we need a new word." Can't argue with that one, so we use linner.

Well, back to the topic at hand; here we are in his junior year, and everyone is talking college. "College!?! What!!?!!," as I gasp and sputter. Yes, the school and this crazy program I signed him up for (since we don't get therapy at all, I sign him up for every free program I can get my hands on. He has been in AVID, Education Talent Search,etc) are sending home reams of paper and thick, glossy books entitled "The 411 on College."

I signed him up for the SAT. Then I took a look at the SAT. Kinda backwards, I know, but a lot is going on in our house lately. It hit me real hard: there is an essay requirement on the SAT. ESSAY. 8 yr. old comprehension. Okay, that's not good.

I did make a half-hearted attempt to search the library and online for help, but quickly realized that this test was just not going to happen.The study guides were thick, newsprint looking monstrosities. The tapes had suspiciously vanished. Dead end. Then, I headed online. YouTube (which, by the way, my son loves at the moment) had videos, but I couldn't get into any of them. Maybe I am wrong, and if someone finds a great one, let me know. Nothing moved me at all. It didn't look like this was going to happen. At least, not by May 13th (remember, like a dope, I scheduled before the due diligence)

My son has become very resilient over the years. We have no more meltdowns, we have no more stiff as a board "honey, are you there?" episodes. But, remembering my SAT almost through me into a panic and I remember scoring very high. I just couldn't do this to him. So, I decided that he would take the ACT. What is the difference?

SATs test critical thinking, logic and reasoning, where the ACT focuses more on what have you learned scholastically. I don't think I need to tell you that they really don't want my son to draw conclusions or make critical thinking analyses. They would never believe their eyes. The kind of leaps and connections he makes here at home are out of this world. But, still the problem was preparation. Even with a total multiple choice test with no essay, he needed prep.

And then, I found it. E-Prep. I fell in love. Here was a site that looked like it was MADE for us. Video run instruction. The ability to stop videos at any time. An entire prep course in video, showing, not just telling. I am in love.

I don't do reviews very often, and this is not really one either. Check the site out, but this is the answer for BOTH my children. For the oldest, who has a fantastic memory, he will quickly remember the video instructions. For my young son, who has a damaged memory system, the moving visuals that can be repeated are perfect in order to increase retention and recall. Unlike static words or audio, videos always seem to ease learning and remembering for him.

The downside? Yes, there is one. The course is not free. But they do give options that run from $69.00 to $249.00. Somehow, some way, I will scrounge up the money for one of the courses in the middle. Hopefully, it will be enough to give him a good grade. And, then we can start discussing what he would like to study and what he would like to be.

Now, that folks, is a WHOLE other post. Must tell you about the fun we are having getting him to volunteer and find a job.

Until next time, take care.

Hit the Wall...and Kept on Bouncing

2009-03-05T10:19:00.007-05:00

Yesterday's post was a very hard one to write. I don't often let out that I feel overwhelmed and scared. But that post brought some quick assurances and good vibes from so many people. Thanks to all of you.

Well, what do you do when you get up the next day and nothing is any different? Did you read the last post to the end? There was a list of things to do and I am doing them.

Today, I printed out two flyers that I put near my computer to gaze at when ever I take those 15 minutes breaks per hour to rest my eyes. One says, "Opportunity is missed by most people because it is dressed in overalls and looks like work." The quote is by Thomas Edison and was tweeted to me this morning by @Outlaw_Marketer. The other one, I neglected to keep the tweeter's handle (in the future, I will be linking all tweets to web pages), but the quote went like this, "Vision without action is merely a dream. Action without vision just passes the time. Vision with action can change the world."

Those are the new quotes near my computer to keep me going when I feel so overwhelmed. They join "Obstacles are placed before you to test your resolve and commitment towards obtaining your goals" and If God brings you to it...He will bring you through it." All these words mean a lot to me. They are reminders that others are suffering, others are in a worse position than I am and that I should give in for a moment, but get back to the business of doing what I do best: fighting my way out of a challenge.

So, today, I am up early (5:30am) with my head brimming with ideas. If you haven't noticed the new banner on the right, it is for a program I am involved in though a great online herbal store called iHerb.com. I am not a great salesperson, so I will just say occasionally you will see announcements about what they are doing in the side bar. This is a company that I have personally been involved with for nearly 13 years. I posted a note on my Facebook about my involvement.

Also, I am following a bunch of coaches through Tweeter, and three of my favorite ones right now is Pat Weber (@patweber) who is a great coach for someone like me - introverted and shy (did you know those are two separate types?), J.Sewell Perkins (@thesciccoach), who appeared on a great blogtalkradio show that I will follow as Tracey Tarrant parades experts in front of me every week. The third great coach who is just starting out, but is SO sincere, I just love her to death is Joanne Julius Hunold, CPC (@intandem). She is another coach for us introverted who is very real and down to earth.

I mention these women because in Tip #1, I mention getting rid of the negative speak and getting positive people in front of you. Well, if you are mostly housebound like I am that is not easy. So these women are my neighbors (along with all of you who comment or send emails or call!). I have made new friends who challenge me to go beyond my current (cold) circumstances and keep looking for those opportunities. Even if they seem like work.

Yesterday, I explained to my two boys about the circumstances in our home. Things are not well and I let them know it. But I assured them just like I did when I became disabled, Mommy will take care of it. Trust me. My oldest son, who always seems to know the right thing to say, exclaimed, "Well, we can just pray to God about it. But if you say you will take care of it, I know you always do." Who says Asperger's needs to be cured? He warms my heart!

Well, I hit the wall...I am okay...and I am back in the business of taking care of my family.

Keeping Myself Going Or I Feel A Faith Walk Coming On

2009-03-04T12:28:00.005-05:00

Below is a list of Tweets I sent this morning. Not so much to my followers, but to me.

You see, I am feeling like I could hit a depressive wall soon. You know that dissonate wall when your dreams and goals smack into reality really hard? Well, I see it coming. Here is the problem.

I want to do so much. It's the reason I am back in school. I want to provide a safe home and environment for my children with a little land around it. I want to have a place for my sister to retire to when she is ready. I want to live comfortable with enough to eat and read.

And, right now, as I start my fourth day in a house without heat, I wonder if I will even live long enough to see my children grow up. My mother died when my sister was only 19, and I was 29. I have always felt we never had enough time.

Maybe that is what is wrong. I feel like I am starting late. I mean, I am 43 and trying to complete my associate's degree. I am so slow reading and comprehending. I wonder what am I doing.

So, this morning, in the bitter frigid air of my dining room, I decided that before I hit that wall, I would put on my inspirational music. You know what I mean. We all have those songs that keep us going when there is nothing tangible left to go on for.

Of course, I cried. Listening to these songs always makes me feel like I have been running 100 miles an hour in the wrong direction. I have been focusing on goals and accomplishments; tangible ones like grades. when some days I need to focus on internal goals. The ability to look inward, take stock of our lives and think about the good stuff.

Like the friends I have made through this blog, Facebook and Twitter. Like the difference people tell me I am making in their lives. How they appreciate me. Yes, little ole me.

Folks, I can tell you right now I am about to enter a Faith Walk. It is a term I came up with over 10 years ago, after my parents died within seven weeks of each other, while I was pregnant with my 2nd son and after my then 1st husband decided he didn't want to be married anymore.

A Faith Walk is a period of time you go through when you don't see ANY positiveness around. I mean it. Nothing looks good at all, and the disasters seem to pile up.

How do you keep going through one of these?

Everyone is different, but this is how I survived then and now.

1. Get rid of anyone's conversation that is not positive. Really. Even though you don't see anything good, surround yourself with good sounds and words from other people.

2. Go to the library (I had to walk to it one time) and come home with something funny, something miraculous and something spiritual. I don't care if you don't believe in any religion. Now is a time of negativity. Reach out for something beyond yourself and your situation.

3. Get the music that will keep you going playing. Put on constant repeat if you have to. Sing at the top of your lungs. Crying while singing is permitted. Getting angry at your situation is encouraged. This leads to letting the problem have its space and gets you ready to move on to solutions.

4, Take control of whatever you can. Control makes one feel a sense of power. The feeling of powerlessness has to be avoided at all cost. If all you can do is straighten the edges of the covers of the sickbed you lay in, by God, straighten them! Sit back and admire. Say to yourself, I did that!

5. Look forward to change. I mean this. I know you don't know where it is coming from, but get in the frame of mind that change eventually comes. I don't care if you think "this will never change." I was a single parent for 10 years. During that time, I became disabled and hit serious poverty. But that same situation is not here today. Back then, everyday I got up and looked for change. Expect it. It is coming.

6. Repeat this process for as long as it takes.

So, to get back to the beginning. Here is the tweets I sent out this morning. It is some of the lyrics to one of my favorite uplifting songs by Bill Gaither called "Thanks for Sunshine." If you click on the little music player under the picture, you should be able to hear it.

Well, I have to get going. This faith walk looks like it is going to be a long one.
__________________________________________________________________________________________________________________________________________

judielise Listening to my favorite "Thank You" song and thought to tweet some of the lines. ThankU lines.

judielise ThankU line: Thanks for sunshine

judielise ThankU line: thanks for love

judielise ThankU line: Thanks for flowers.

judielise ThanksU line: Thanks for children, for each girl and boy.

judielise ThankU line: Thanks for laughter, Thanks for the joy.

judielise ThankU line: Thanks for labor.

judielise ThankU Line: Thanks for tears.

judielise ThankU line: Thanks for tomorrow. Fill it with love.

judielise Thanks for listening. That's all. Back to your normal Twitter chatter.

Picture credits: Rosie Hardy on Flickr

An Extra Hand Services Lives Again

2009-03-03T19:17:00.002-05:00

Due to some really bizarre happenings in my life over the last 3 years (that I will have to blog about later), I am opening my company up again. For those of you who don't know, I started a virtual assistant company back in 1996, back when hardly anyone knew about virtual assistants.

I performed clerical, customer service, and light graphic design work. I had a fabulous run for 10 years, working for everything from non-profits to sales executives and business directors, who needed extra staff. My greatest accomplishment was a mail program that I designed from scratch for a client that boosted his sales 532% in one year. That is still my crowning glory, thought it was tough designing the mail piece, coordinating with the mail company and keeping the back end database with updates twice a month.

I closed it down in 2006 due to illness. Now that I have been getting my health under control and I am back in school, several people have asked me (not including old clients who have begged me) to open it up again. I have hesitated and I will tell you why.

Sitting at a computer for 12-16 hours a day is no fun. It was hard on my back and after back surgery in 2005, I tried to limit my time sitting. Also, it is extremely hard on my eyes. I don't talk about it much, but I value my eyesight more than anything besides my children and try my best to protect what sight I have.

But, because of life circumstances and the fact that I now sit here anyway, going to school, blogging, Twittering, etc., I have decided to start it up again. Plus, to tell you the truth, I miss it!

Stay tuned for further posts about progress, projects, the trials and tribs of business ownership (again!), who I am working with and whether I survive this time around.

Wish me luck, send me prayers and well wishes. I am going to need them.

Sleep Issues in Children

2009-03-03T09:48:00.004-05:00

If you go way back to the beginning of this blog, I brought over some links and articles regarding sleep issues in children. This is always a very big concern in our home, because of young's son inability to have good sleep experiences.

I realize I am jumping around a bit in this blog (yesterday, new apps, today sleep!), but I have yet to figure out how to put blogposts into groups and categories. Once I do that, this jumping from subject to subject will be better organized.

In my daily perusal of medical journals (yes, I have strange hobbies!), I came across these two article titles:

Cognitive Abilities May Be Affected By Childhood Sleep Problems Persisting Through Adolescence

and

Underlying Sleep Problem Linked To Attention-Deficit/Hyperactivity Disorder In Children

I know reading medical jargon and study results is not everyone's cup of tea, but when it affects your everyday life, you get smart and interested really fast. Basically, the sleep world finally woke up and realized that a lot of the issues with cognitive function and performance can be linked to faulty sleep habits, patterns and brain wiring/firing. In our case, my young son barely seems to have a circadian clock. He was diagnosed with Moderate Obstructive Sleep Apnea and Delayed Sleep Phase Syndrome. It looked like narcolepsy (before he got his CPAP machine) and insomnia, which is kind of impossible to have.

The big issue is that this has DEFINITELY affected his cognitive functions, executive functioning and memory. His short-term memory is shot and long-term is sketchy. He can not draw inferences and his brain stubbornly refuses to make leaps of connection from one subject (or even word!) to another related subject (or phrase!). Teaching him is very difficult (on bad days, I say it is non-existent) and I struggle to keep information flowing and relevant.

Okay, I am getting off subject. This is not about my son, per se, but is about awareness. Parents, please listen to me. My son went through the usual diagnosis of ADHD for years. However, though the behavior is similar, it is NOT the same disorder. My son remains unresponsive to ADHD meds. In fact, he is on Concerta (also took Ritalin for awhile, but made the sleep phase problem worse!), but it does not increase focus or attention. Makes him more hyper actually.

The point I want you to take away today is sleep disorders are very real. They have very real symptoms that mimic other disorders. And most doctors are not thinking "sleep disorder" immediately. This is changing.

I had the chance to attend a sleep conference last year in D.C. sponsored by the Sleep Foundation. There I heard the latest research into sleep disorders. Out of that meeting came the recommendations for doctors to begin asking questions regarding sleep for children as young as 2 years old, especially if there were hyperactivity symptoms.

Sleep issues are real. Here in the Unique Family, we live through it everyday. Three us (out of 5) wear CPAPs (hubby fights wearing his. Grrr!). All three have memory and cognitive issues.

Pass this along to anyone you think it might benefit. Also, let me know, anyone in your family/Friends that you are concerned about?

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New App I am Trying out Today-Animoto

2009-03-02T14:37:00.003-05:00

Today, I have come to the conclusion that I am a geek. How have I come to this conclusion? Because even though I spent 12 hours typing up my final project APA-styled paper for my IT class, I still found time to follow Tweeter and find new apps online.

I will talk about one I played around with today. I actually got this from a blog I follow in my Google Reader (don't ask me how many blogs, I have totally lost count). It is from Jose Picardo who blogs at Box of Tricks. He is a wonderful person to listen to (great video content) and learn from. And one of his apps that he has written about is Animoto.

Animoto takes your pictures and creates a wonderful dynamic slide show out of them with music. I just had to try it. Doesn't matter that the furnace died yesterday and I am sitting here as cold as ice in Baltimore's first big snow in nearly 6 years. Doesn't matter that I should be tired or that my eyes should rest.

It is amazing how you can make your body wake up when you are excited about something.

So, below, is my 1st attempt at Animoto and I love it! I used my rose flower pictures because I already have them batched at Flickr . A couple f steps later and this is what I got.

I had stopped taking pictures because I hate putting them in albums where they languish. This may actually spur me to purchase a digital SLR. After all, my major in high school was photography. Check Animoto out and give it a try.

And, no, they are not paying me to say this!

My TweetSheep Cloud

2009-03-02T09:27:00.004-05:00

Just found a very interesting twit app that I really like. TweetSheep.com generates a tag word cloud from the profiles of the people you follow. It is one of those little apps that seem to be poppping up all over the place.

My TweetSheep cloud serves as an introspective look into who I tend to be drawn to on Twitter.

It also let me know whether I am not searching for people who cover or represent certain subjects that are dear to me. I'll give you some examples.

I have posted a pic of my current cloud. You can see that autism practically jumps off the page. I have said it already that the autism community is represented very heavily in Twitter. Then mom comes up quite big and so does technology. But as an IT tech major, that tells me my connection to the tech world is not so strong in Twitter.

Now at first glance, that may not look good. But I already know enough about me to know that even though I love technology, I love it in context to people and learning.

What is minuscule in my cloud is the disability tag. So small I could barely read it. Not good. I want to know more about disability advocacy, assistive technology and the issues that surround that community.

Now, the thought comes to my mind: Am I not searching/connecting to Tweeters involved in these areas or are they not online?

Here is an open call. Anyone who has followers or follows Tweeters involved in disability issues, AT and the like, please post some people to follow in the comments.

Rose Pictures and All the About the Garden

2009-02-28T18:03:00.013-05:00

BubbleShare: Share photos - Easy Photo Sharing

These is for Mia, a blogger/Tweeter who said my flowers reminded her of her the kind her grandmother grew.

This rose bush has been rather persnickety and I am not sure I will get anything this year. These are pictures from the first two years. I literally had to dig it up because we live on a corner end-unit house and no matter what I did, there always was some sort of blight or dusty white stuff or little crawly bugs.

It now resides in our gazebo (yes, we have a gazebo. Got it dirt cheap and paid friends in pizza and movies to put it up). Hopefully it will come back again.

Here in Maryland, all you have is clay soil, and I can no longer till the land and garden the way I loved to before. It was back-breaking and I am in a losing battle with the honeysuckle and ivy taking over my fence.

So, these days, I am relegated to container gardening, which I actually love more, because I get to rearrange everything over and over again. Hopefully, once it is warm, I can blog more about this and put up some video of the raised bed, the only piece of land (dug it up and put down 5 bags of organic soil) that has survived into the 3rd year.

Did I mention I have 13 trees in my yard? Wait until spring and then we can really talk.

I Can't Wait To Get Some!

2009-02-28T15:30:00.004-05:00

Cupcake silicone pan.jpg
Originally uploaded by judielise

I know I never talk about gadgets and cooking, but I am a closet Kitchen Gadget Queen. You know it is bad if you Christmas list consists of mostly product from Procter-Silex, Salton and Rival.

So, the not-so-secret is revealed in this blog. The first with a picture as well I might add. I am coming along in this bloggy world!

Right now, I can let loose on my current passion, but I love shape cake pans. Everything from silicone to cast iron. If it has a shape, I want to put a cake mix in it!

My sister and I were talking about "Cake in a Mug," when my new Lakeside catalog came and this darling little thing was on the cover!

Yessiree, this one will get bought and used. With my kids!! For one, I am always looking for things that will engage my aspie son, especially in the kitchen. If every other area of his life is a rigid routine, the kitchen is where we find his creativity flowing and his willingness to take chances uninhibited. He will love this!

I can hear him already. "That's unusual, Mom." Cake that is shaped like ice cream cones. Mmmm. So, when are we making them?"

Another victory in chance taking, breaking out of the ordinary and it's gonna taste good, too! Win/Win!

Twitter Blog Post -#Autism

2009-02-28T13:03:00.001-05:00

The following is a Twitter conversation that I think needs to be saved. Tweets come and go, but hearing a mother's joy about her child's progress is priceless.

#AUTISM #ASD our ABA therapist said friday that our little guy isnt autistic (?) and that he is moving rapidly 2 verbal (many words already!

@nika7k Possible Asperger's? My son started with several diagnoses. At 16, now, considered Aspie. #AUTISM #ASD

@judielise Yep, thats what we were thinking too #AUTISM #ASD

@judielise he is now acquiring tons of words and using in context - LOVE growth spurts - ABA is the BEST #AUTISM #ASD

@nika7k Glad ABA so successful for u. Wasn't around when I really needed it. I support the program. #AUTISM #ASD

@judielise sorry not avail then... Iam profoundly thankful that MA covers 14 hours a week ABA 100% #AUTISM #ASD

@nika7k U give main reason why I support program! So many children out there, older 1s, parents lost w/o guidance. #AUTISM #ASD

@nika7k I had to make it up/create it as we went along. He taught me what worked, I repeated over and over. #AUTISM #ASD

@judielise excellent! in 2 weeks our guy went from just 3 -4 words to MANY more and driven to LEARN more, that last is key #AUTISM #ASD

I believe all children want to interact w/world. Our job=finding out what key opens door connecting child2world. #AUTISM #ASD

And then accepting child's level of interaction when they have reached full potential. #AUTISM #ASD

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Updates, Updates Part 4

2009-02-27T07:16:00.005-05:00

Wow.

Life seems to have change 180 degrees since I last posted in this series of updates. I am still saving myself for last. This one will be on my sister.

Background? Okay.

My sister is 10 years younger than me. She used to be the "popular" one. You can tell I am an introvert and she was an extrovert, because when we were younger, people would say, "I didn't know you had an older sister."

I didn't go out much, loved to stay home, read and draw. She was the opposite. Ballet lessons, movies with friends, playdates, sleepovers. You name it, if it was an event, she was there and probably knew half of the people.

She was always battling with her weight. With diabetes heavy in my family, battling weight is not a good thing. I do, too, but her battle outstripped mine. But something else bothered me, but I could never put my finger on it.

I won't go into the hard years, even though I know they shaped who she is. Those skeletons can rattle, but I'm not touching them. Suffice it to say, by the time, she reached Baltimore with me in 2004, she was over 300 lbs, sick and barely working.

I won't pretend I know all of what is going on. For years, I begged parents and then my brother (who received guardianship over her once my parents were too ill to care for her) that someone have her tested. For anything. Something was wrong. She could barely hold down a job, only lived on her own once for a year and didn't have a car.

Did anyone listen? Of course, not. Judi is that flaky, weird, out there sibling who talks too much, thinks she knows everything and is always trying to get someone looked at.

In 2004, she came to Baltimore, having worn out my brother. She was nearly 30. I hit the ground running with her. Here are some doctors. Here is where to get a job or job training. You can stay with me until you get on your feet. Get to know a circle of friends who will be there for you. Get to know Baltimore.

Two years later, she was still with me, working part-time and had seen not ONE doctor.

I hit the roof. I was about to remarry, give up my little townhome and she had no where to go. This is painful to write, but my sister ended up in the system of homelessness for nearly nine months. I can barely write about that either. A sore spot for only God and I.

We had one good talk before she left in which I told her an old line from old folks who knew better. "God didn't make junk. You are worth something, even if you don't think you are. And, he didn't put you in this family to fail." She cried and it was then, I realized, my sister suffered from depression. Not the light dysthimic type, but full-blown clinical depression.

I again suggested help. And, let her go through that horrible process of homelessness.

It actually helped. She emerged more focused, healthier and motivated. She got a job as a live-in companion for developmentally disabled adults. She bought a car and started taking care of herself. So, I thought.

I noticed her falling asleep everywhere. I mean, sitting up, falling asleep. I pleaded. Get tested. This was after my young son's diagnosis of sleep apnea, and I was on high alert. So, she actually went. Yep, sleep apnea. She had over 40 apneas that night and stopped breathing for nearly 40 seconds. (!!!!) They put her on a CPAP machine and asked her to lose weight. It helped at first, with me insisting on strict usage. She became more alert and could focus better. But, that was not to be the end of her health trials.

July of 2008. I will never forget the month. Trying to get my family into some "culture," I took us all to the Myerhoff Symphony Theater to hear some video game music, played by a full orchestra and 30 voice accompaniment (in my house, you have to think outside the box all the time). The whole family went. But, that beautiful night that saw my aspie son enjoy his first concert, despite the crowds and noise, saw my chronically ill son walk the whole night WITHOUT using the wheelchair, saw my husband sit still and actually enjoy something other than tv, saw us also end up sitting anxiously in the hospital.

On our way out, I heard my sister call my name and as I turned, I watched her fall over and drop to the floor. She laid there for about 15 minutes and then said, I am okay and got up.

She was not okay.

*Sigh* This is hard to write.

The scans showed she had suffered a mild stroke. In fact, before the weekend was out, we would find out that she had suffered one before and three more while in the hospital. Five in total. She is 33.

Her blood sugar was in the 500s.

The doctors looked at her and said, if you don't change, you will die.

There was actually some good news. Each stroke was tiny and left no physical mark. But her memory and cognitive functions have deteriorated.

That was the beginning of change. This is long, so I can't go into everything, but today, she is learning to handle her diabetes. She is on several pills for blood thinning, diabetes and cholesterol. She uses that CPAP, even though the napping has returned after the strokes. She has lost over 30 pounds and is on the good side of 300. She is holding down her job and bought a car. Unfortunately, she still is not treating the depression like it should and is technically homeless as she either works or spends her weekends with us. Her things are still in storage five years later.

I don't know what I want people to take away from this post. This is so hard to write. I continue to stress to everyone, go to doctors. Don't like one, get another one. Treat all of your life, including your emotional one. Be proactive about your health. My sister will always be in danger of a massive stroke that could kill or paralyze her.

But in the end, I think I want to emphasize that depression and possible cognitive disabilities can go undiagnosed and untreated for a person's lifetime. That is what I believe is truly going on with my sister. I stress early intervention for children, so that help can be given early.

And, at the end of the day, we are still taking care of her. She is unmarried with no children. Another member of my little unique family.

Just a Quick Note

2009-02-25T23:50:00.001-05:00

Okay, I know it was just a couple of weeks ago and I was complaining about joining Facebook and Twitter.

I take it all back now.

I am having the time of my life! I have met some wonderful people/bloggers. I have connected with AT specialists all over the world. There are nearly 100 tweeple following me!

Of course, this is playing havoc with my home life. Dinner is an hour late and I am estatic if no one is hungry. The laundry is piling up and the bathroom needs cleaning. Well, perhaps, that was TMI.

But, all in all, my itinerary has exploded. Last week, I took webinars for the introverted. Tonight, I chatted in a blogtalkradio show and was quoted on-air! Friday, I will be in my first virtual wine tasting with TwitterMoms.

I used to be very upset about where I lived.

How the neighborhood was atrocious and I never wanted to bring anyone over. Well, not that the virtual world is a replacement for real people. I still talk to my friends, even though most of them live in other states anyway. I even want to try video calls, though I hate the way I look in photos and video.

But, when you are in the position I am in with very little outside life, this is the next best thing. I can stay here, do my schoolwork, volunteer in Africa (almost done the application process!), take care of my son AND drink wine with the girls!

What is not to love?

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Am I an Introvert?

2009-02-24T09:08:00.002-05:00

Just picked up a book called "Introvert Power and believe I have found a psychological basis for my entire maternal side of my family and my dad to boot!

I have always wondered at the high number of loners, single parents and just plain spinsters on my mother's side of the family. Now, I know spinster is an archaic word and I mean no disrespect to a particular aunt who is in that position. She is actually a very vibrant, active woman, but she has never been married, has no children, and as she floats into her 60s, doesn't even seem to notice that difference between her and the other 9 siblings she grew up with.

My sister, at 33, is unmarried and childless. I told her once after the nearly 30 hours of labor with my first-born, "Borrow, rent or lease, but never own." You would have thought I was talking about a car or something. I was delirious, but I think she never forgot it.

That was 16 years ago. She babysits, but hasn't birthed one yet.

I have married twice and each time, including this time, I feel like I could live alone. I don't dislike my husband, just the intrusions. I think that is why I stayed married to my 1st husband so long. He was a loner, too. He just didn't come to me whenever he came out of his reverie. But, that is another story.

Introvertism fits me. After reading that over half of the population is considered introverts, I feel like I have company. Like an internet connection I just haven't tapped into yet.

I also think that my HFA/Aspie son is taking after his family. Yes, I realize that autism is a spectrum and is a very serious neurological wiring concern, but his love of peace and quiet and solitude reminds me of my dad (who didn't get married until he was 50, BTW). My brother, who is married, seems always holed up in his bedroom, which doubles for everything: media center, office, nurturing station. Is there something to a possible HFA and introvert personality? I leave that question open to who ever wants to tackle that one! I don't answer 'em, just ask 'em!

On Twitter, we have a group: #introverts and I quote lines from the book. There is not a lot of activity going on. That's okay. That doesn't bother introverts. We know we are there. Lurking, listening, touching it with our minds. We don't need reams of tweets and discussions to realize our connection.

For once, I feel like I totally belong. My solitude is connected to others in theirs. How perfect a world.

Here are some spots for introverts looking for validation, coaching and life lessons:

Pat Weber, sales coach:
http://prostrategies.com/wordpress/2009/02/sales-tip-5-social-networking-approaches-that-benefit-the-introvert-nature/

Introvert resources site:
http://talentdevelop.com/introversion-r.html

Introversion from a Christian perspective:
http://www.newreflectionscounseling.com/Default.aspx?page=ENTER_TOPIC_INTROVERSION

Nice new Introverted blog I found:
http://www.livingintroverted.com/

Urawaza For Tough Times

2009-02-22T08:32:00.002-05:00

Found this article in my Sunday NYTimes and loved it. Being a techy person, low or high, I enjoy the little quirky things that make life go on. Seeing how the recession has everyone looking for ways to make things last or how the green community is always looking for ideas, this article is perfect. I laughed at some of the kooky ways we make do in this world.

Hope you enjoy. Here is a link to the article. And after some searching, here is the book link from Amazon.

Repost: College Chances Grow for Those with Intellectual Disabilities

2009-02-20T21:39:00.003-05:00

This is a repost from Patricia Bauer's blog, Disability News. She has a wonderful blog full of news and tidbits that I usually don't find anywhere else. Even though I am just starting out following disability blogs, I enjoy her approach to the material she reposts. Please visit her blog. Click on the Title for the direct link to the post.

The 16-year old in the Unique Family is getting ready to tackle the SATs and the ACTs. I cannot even believe we are discussing this. There was a time when I held no hopes for college or even a high school diploma. And yet, he is here.

Within her post, she mentions a site that is collecting information on colleges and universities that are making strides in providing transitional services, inclusion and assistance for our children to continue on into college.

For my son, we are going to try to go. I am not sure what that future holds, but the opportunities are there for him, and we intend to take them. I will have more on this as the weeks go by. His first SAT test will be in May and his ACT in June. I am looking into SAT prep for him now.

Repost: First "Travelocity" for Disabled Travelers

2009-02-20T19:49:00.003-05:00

This is another repost that I pulled from my Goggle Readers (sitting somewhere around 110 blogposts to read through).

This is important to me because whenever I or my family goes anywhere, it feels like a logistical, strategic operation bordering along the lines of an international intrigue-laden Hollywood movie.

Did you get the boarding passes and seat designations online? Where are the CPAP machines? Everyone has their meds packed? Where are we staying? Are they green, organic and scent-free?

This is just the beginning for this site, but I hope to be able to blog about this a year from now and see that it has morphed into something fantastic that I can take advantage of on a regular basis.

Check it out. Click the title to go to my blogposter's site.

Repost: General Hysteria's Post of the Mom Song

2009-02-20T19:28:00.002-05:00

One of my newest blog buddies posted this on her site and I am doing a reposting because I love this song so much!

Funny thing, my kids love to stand behind me and watch it with me. You would think they heard it enough during the day that they wouldn't want to hear it in stereo with a musical accompaniment.

Anyway, as General Hysteria say, if you haven't seen it enjoy. If you have, enjoy again! I second that motion.

Click the title link to go to her website and listen to the song.

A Post About Friends

2009-02-20T09:20:00.005-05:00

Today, I tried to visit some of my other social communities. School being what it is, I cannot even get near Twitter or Facebook. It takes up too much time and I find I am stuck there.

But, today in my perusals of posts and comments, I came across a devotional from a new person that I have not made friends with so far. She spoke about becoming the type of friend that survives changes and really gets to know one another.

Here is her post:

VERSE:
A man that hath friends must shew himself friendly: and there is
a friend that sticketh closer than a brother.
-- Proverbs 18:24

THOUGHT:
Close spiritual friends -- the kind that can hold us accountable
when we need it, build us up when we're down, or celebrate with us
when we've enjoyed success -- are truly rare. So many people are
lonely; they're lonely for something, or better yet, someone,
they've never experienced. We have a tendency in modern western
culture to have acquaintances and companions instead of friends and
partners. When things go poorly, when we have nothing to offer to
them, acquaintances can run away in times of trouble or fade away
if things are long and protracted. There are, however, true friends
whose commitment and dedication are deeper than even physical
family. How do I know? God promised it! I've seen it! My family has
been blessed by it! So let's hear the call to be that kind of
friend to others and in so doing, we will often find that kind of
friend for ourselves.

PRAYER:
Gracious and holy Father, thank you so much for calling me into
your family. Please bless me as I seek to enter into meaningful
friendships with those in your family. In Jesus' name I pray. Amen.

In this fast and furious world of twittering, facing up on Facebook, Digging it all and remaining Linkedin, I am stopping to ask: Are you really getting to know some of these people? I understand networking possibilities, but are these people you can go to if something catastrophic happens? You may say, I have my family and close friends for that. My point exactly.

My goal is to make a least some of the people I converse with for hours close friends. What is the point of investing so much time if I don't get to that point with somebody?

In the end of our lives, will our Twitter friends be there or our real friends?

Let's endeavor to deepen some of these relationships beyond 140 characters.

Calling on Some Guest Bloggers

2009-02-19T08:21:00.002-05:00

Coming out from under schoolwork for a hot minute, I realized that I haven't posted in over a week. Not that there haven't been things to talk about. I just returned from a President's weekend in North Carolina. Had the time of my life! That is what happens when you don't take the hubby and kids and stay with a single person. The only drawback is that their refrigerator looked like it belonged to a single person! I probably lost weight on that vacation.

I have decided on a few things for my future studies, and I could talk about that, but right now, it is coming down to the wire for my classes.

If none of you are familiar, University of Phoenix sets you up to take two classes at a time for nine weeks. Those last 2-3 weeks are a killer. Right now, I am working on final projects AND working on individual assignments due throughout the week. My fingers are tired, and my eyes have given out on my at least twice now. I stave off the migraines with Aleve and ibruprophen, but haven't been able to come in here and post anything.

So, I am opening up my blog to guest bloggers. I would love to showcase some other of my new found friends and followers. It could be any subject, though you know I tend to talk about family matters, dealing with disabilities, assistive tech, etc.

I would love to have some contributors. So, if you are interested, please drop me a comment or an email.

In the meantime, I will try to post again soon. I am in Week 7 and there is 2 more to go.

Dave Hinsburger's Post - BHM-Black History Month

2009-02-10T15:13:00.003-05:00

Yes, another reposting.

This one hit me square in the eyes.

For one, it is Black History Month and I have made no mention of it so far. And, two, I didn't get a single question correct. Not one! Okay, there goes my credibility in disability history. I am really still learning.

To be in all fairness, this kind of subject does NOT appear anywhere in the historical, social or psychological studies I have been exposed to, and, also, haven't come across any books.

This post has opened a whole new area of interest for me. I intend to remain ignorant for only a short time longer.

Go to the site and take the test. See how well you do. Post your comments when you have a chance.

25 Random Things About Sleep

2009-02-10T13:37:00.002-05:00

National Sleep Federation's version of the tag game.

Couldn't pass this oppty to send along some important info and continue to play the tag game. Now, it is your turn! Find 25 Random Facts about your favorite subject (or passion and post them!

Where Did That Blog Name Come From?

2009-02-10T11:24:00.002-05:00

After reading an intriguing post at General Hysteria, I mentioned in my reply that I would write a post about where this blog name came from. Please read her post first, because it sets the stage for my post.

I joined in with General Hyteria on how hard life has become, the unfairness of it all, and the inevitable feeling of inadequacy. Oh, how I know how that feels!

There were so many times that I wondered where exactly had I gone wrong. Where had I made the turn that brought me to the spot and circumstances I found myself in now. Was it really a wrong move or was I just whining about my life when so many others had it harder? Was I just not able to buck up, put my big girl panties on (my sister loves that phrase!) and deal with it? Apparently, I wasn't, until I had an Epiphany of sorts of my own-in my favorite epiphany-happening place-the shower.

I will not forget that morning. I probably only had a couple of hours (2-3) of sleep, due to hubby's seizures and sleep apnea, young son's insomnia and the fact that after a year of marriage, we were in foreclosure.

I have to admit, I don't take financial instability well. I will go/have gone without food to save on the food bill, while I watch my kids eat. I will go/have gone without new clothes while providing SOMETHING new for the next school year. So, first and foremost on my mind that morning, was what in the world was I going to do?

Talking to God becomes a past-time when you are a single parent of special needs kids.

You tell Him everything, including your rants. He takes it and usually an answer comes floating down the timeline that makes you really know there is someone greater than yourself out there. You come to realize you can really connect this random circumstance to your rant/prayer.

That morning, I was railing, crying and extremely angry with the Powers That Be. My mind kept going back to several weeks earlier, when everyone thought I was having a nervous breakdown, because I woke from a bad dream and literally screamed and cried for 45 minutes. I remember being paralyzed by fear after that dream. Fear of failing, losing our home, being homeless again (another post for another day), and having to explain to two sets of trusting eyes what Mom was going to do; how Mom was going to save the day again.

And there I stood in the shower, feeling the emotions well up again and threaten to take me over. Sobbing, I yelled into the tile,

"What do You have in store for me now? Why are You doing this to me? Did I EVER suggest that I could handle anything like this? Did I EVER give You an inkling that I could be a leader? Are You crazy!??!! I don't want this family! I never asked for this! In fact, if I remember clearly, I wanted/asked for a career. How long do You think I can last like this? And, what am I supposed to do with this bunch of sicknesses, disorders, neurological atypical..."

In the middle of all of that, I swear I heard in my mind, "You have a unique family."

"Unique. Unique! There is no other family like it, are You kidding?"

But, suddenly, I no longer wanted to stay in the shower, under the pelting water. Suddenly, I wanted to get out and do something. At the time, I didn't know what. I barely knew what blogging was. All I had was an email address.

That was nearly a year ago.

I still don't have a plan, really. I just retell our story. I post stuff pertaining to what affects us. Somewhere in here, I believe is my purpose and the purpose of this life I am living. I don't pretend to understand it, get it or even approve of it. I just know that being unique is important to God. It has been important to one or two followers who comment. It has become important enough for me to deal with my days and nights, keep on moving and writing.

Side Track-Diversity Discussion

2009-02-09T11:00:00.003-05:00

I was going to continue my updates today, but besides getting up this morning with a headache and very little sleep,(see Updates, Updates Part 1), I came upon a post that not only did I feel the need to reply to, I felt the need to repeat it here.

Don't ask me why this tugged at me so hard. The subject matter is diversity and the school system. When I read this, I felt as if, unbeknownst to this mother (who I will not reveal her name, because I haven't asked her permission to do so) diversity extends so far beyond the areas she touched upon. Diversity takes into account the neuro-typical and non-typical children. It takes into account the chronically ill and the disabled. Diversity is not just a poor/rich, white/black/latino/native american issue. As the mother of two children, who do not fit the norm, I feel it is my duty (and my 2nd job) to educate people about diversity and the richness it can bring.

In another post, I read today, a fellow Disaboomer (www.disaboom.com)quoted an Illinois governor as saying "If you are able-bodied and breathing, we want you working." Another blow to diversity when the disabled unemployments rates would raise your hair and underemployment rates hit 90% in some places.

If you ask me, what I really want, I guess I would say, don't be so afraid of diversity. It may not always mean property rates are going to drop and school performance scores will skew downward.

Here is the post as written with my response.

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The new Secretary of Education Arne Duncan said he wants his kids to go to a diverse school. Author Eileen Kugler believes that a "good school" DOES NOT look like a scene from The Brady Bunch in her book, "Debunking the Middle-class Myth: Why diverse schools are good for all kids". According to Eileen, our diversity is our strength only if we go beyond celebrating diversity and we take the tough actions that champion diversity -- from supporting immigrants who live next door to having those real discussions with people from different races, ages, and paycheck levels. Check out her website for articles and commentaries she's written for The Wash Post, USA Today and more. http://www.EmbraceDiverseSchools.com.

We were faced with this exact situation. Our assigned school happens to serve one of the largest public housing projects in the state. The children who attend the school from a diverse background, which is wonderful, but the school has to design curriculum for the needs of the majority. Our son was reading before Kindergarten. We struggled whether we should send him to the diverse school or the "white bread" school. In the end, we chose the latter, primarily because we were worried he would be frustrated and bored, as well as the fact that we're not ready to have our kids be subjects of our social experiment.

Anybody else want to weigh in?

Reply by JudiElise 25 seconds ago

I am happy that you chose a school that would create the challenging and engaging environment he needs, but I chafe at when you offer that your child is not ready to "be subjects of our social experiment" or when you equate diversity to living near a public housing project.

I think the statement you make about the curriculum is unwarranted, unless you have examined the curriculum and found it wanting. Have you seen the curriculum for your child's grade? Does it meet the state standards and yours? If you have, and it fell short, then, of course, I applaud your decision. But if it was made without due dilligence, on what did you use to base your decision? As your statements stand, I feel as if you are developing (or exposing) a mindset that borders upon prejudicial thinking.

I realize that when people talk about altering the landscape of our public school system, this can be disconcerting. And sometimes, when these changes are made, this can lead to a lowering of standards in order to meet "Leave No Child Behind" mandates, but this is not always the case. Having the opportunity to learn and, eventually, work in a diverse society is one of the conditions, we, Americans have to work through as the world becomes more and more of a global-interdependent society.

Right now, this is seen as an asset for people entering the workforce today. Colleges teach classes (a required course at some universities) on the subject of culture diversity, because it has become so important to the future of America staying competitive.

I hope your decision turns out well for you and your son. You have started him out ahead of the other children, and perhaps, he will be given the opportunity to join gifted classes as well. But diversity will never take away his abilities nor dull them. Only the lack of opportunity and challenge will.

Short Break

2009-02-08T12:00:00.004-05:00

This post is going to be a little different in focus and intensity.

After the attention my last post generated, I was completely caught off guard. Friends called to say how it affected them. Strangers called me a hero. I felt warm and accepted and humbled at the same time. My story resonated with so many people! It truly made me feel less alone in the struggle.

Also, I didn't realize it, but it took a lot out of me to write down the last two posts, especially the one about my oldest son. So many memories of hard times, poverty, death and plain ole' loss came flying back up as I wrote those words.

For the rest of that day, I could not help remembering so many other things. Like how we stopped going to church, the movies, outside festivals and fairs when it became obvious that the noise and length was too much for my sons. Or how with $1000 and a cellphone, we made the trek from upstate NY to Baltimore, MD to start a new life, just the three of us.

I used to call us the rag-tag band. I always felt that we were held up by mere strings that any moment threatened to pop. Somehow, they always held.

I remembered how my faith in God went from a philosophical hand-me-down from my parents to a full-fledged walk in grace, as I had no one but God to depend on. God and whatever strength he gave me.

As I get ready to do the last two updates (my sister and myself), I realize that if I do no more and write no more than what I have, I will have given something away that touched people. No one paid for it. People will be able to see that it is possible to walk in wonder, creativity and joy in the midst of constant, almost overwhelming emotional and physical struggle.

That ability or gift is greater than anything I could ever learn in my current studies. And more lasting than any other contribution. Thank you for letting me be a part of your living experience.

Stay tuned for Part 4 and 5.

Judi

Updates, Updates - Part 3

2009-02-05T22:50:00.004-05:00

Well, next up is my oldest son. At the wonderful age of 16 (going on 17), he is the wonder of the family. How he got here, please don't really ask me. I do not have a degree in child psychology or development. I probably made so many mistakes along the way. But you need some background...

It is a mother's instinct that knows something is not right with her child. He was my first, but it was my mother who began to point out little things only a month or two after he came home. I had seen it too, but didn't know what to make of it. He needed to be swaddled. He hated bright lights and hot environments. We could never find a formula he liked and he couldn't grasp breastfeeding.

By a couple of months, he was sleeping in the basement (yes!) in a stroller. No noises with the close walls of the stroller made him relax. I hated it. The empty bassinet with custom sewn covers sat empty next to my bed, while I listened furtively to a child monitor late into the night.

But it didn't take long for me to realize. This kid was like clockwork. In fact, by the time I went back to work when he was almost a year, I handed the babysitter several sheets of paper, outlining everything he would do.

When he pooped. When he ate. How hot the bottles had to be. How thick the formula had to be. When he would sleep. I stressed to her: keep to the schedule and you will have a perfect day. Don't, well, just keep to the schedule.

Now, she must have thought I was crazy, but after two days, she said incredulously, that she had NEVER had a child stick to a schedule so perfectly in all her experience.

He began to talk. Clearly, everyone remembers "tank you" and "pease" at just around 12 months. He walked on time. Everything was going well.

Then suddenly, he began to go quiet. He rocked a little. He stopped looking at you when you called him. Soon, he stopped responding at all. You had to go up to him and talk to the back of his head. After awhile, he flapped, sitting and rocking in a baby rocker he was way too old for. He never picked up any crayons, pens or markers and doodled. He played with the manual can opener. He became preoccupied with trains.

In NY, parents start their little ones off early. By 2 1/2, he was in a daycare/preschool. Within six months, he was out. Wandered around too much, they said. Just left in the middle of class. Nearly left the building. We were back to babysitters.

By 4, he only whistled, grunted and pointed. Growled when you couldn't figure out what he wanted. He wore the same clothes until I hid them and said I couldn't find them, hoping he would attach himself to something new. Went to bed like clockwork and woke the same way. There was no eye contact, no kisses and never a hug. No smiles. He was never aggressive or hurful. Just a little wandering robot playing with his fingers.

At this point, I have to interject that this was the lowest point of my life as well. Within six months, I would lose my job, my marriage, my parents (seven weeks apart) and come to realize that my boy may have something called autism, something I saw on PBS late one evening. Oh yes, and I was pregnant with my 2nd son.

I am going to fast forward through the really hard years, raising two chldren as a single parent for 10 years. My son not accepted in various schools for very long. He had such problems with sensory sensitivities-the bells, chairs moving, people scratching their pencils on paper-drove him crazy.

We moved twice, saw loads of doctors who spat out lines like jackpot slot machines. Lines like, he may never improve (remember this was '95-'96), he would need years of therapy (not covered by any insurances) and you need to get on this or that waiting list for services. And, oh yeah, file for disability. *Sigh*

I remember asking God for one thing. Give me five good years, Lord. Give me five good, long years, and I will prove this kid could learn.

We finally landed in Maryland in 1999. By this time, I had the single mother thing down to a science. And, I knew how to ask questions. "Where does everyone else go?" "Who has a good program?" We ended up at Kennedy Krieger. Test after test finally revealed a diagnosis. PDD/Austism. It would be several more years before it was upgraded to Asperger's Syndrome.

In between is a blur I don't completely remember. Every moment, I poured something into his little thin body and mind. Language, music, news, jokes, colors; anything that got him to make eye contact, make a sound, ask for something with words, we repeated over and over.

One story always sticks out. Sorry, I wish I could remember exactly how old he was, but it escapes me. I remember a class assignment on the number zero. The assignment sheet was a lovely scene of grass, rocks, clouds. The questions asked how many rocks, how many clouds and how many sheep. The correct answer was zero sheep. He kept shouting 5. Over and over again, I went through the explanation. Still 5. Finally, I said, "Well, if there are five, tell me where they are?" He answered, "one is behind a rock, one jumped in the water to get a fish, one wandered off to look at a buttercup (!!), and two went home because they were tired."

I remember staring. Then it hit me. He added! HE ADDED!! And, he talked in BIG, LONG SENTENCES!!!

So, I quietly asked, "If all that is true, everyone's gone. How many sheep are left?"

"ZERO," he announced confidently.

Just imagine so many more years of that, and you have an idea of what went on. Fractions meant measuring cups with food coloring and water. Reading literature meant acting out the scenes or searching the internet for related videos and pictures. Homework took hours, broken up into little chunks. Storytime was always punctuated with extra dialogue and sounds. So much so, he was disappointed when he finally began to read well enough to only discover that all that extra stuff was not written in there. Mommy made it up. It kept him focused.

This is getting long, so I won't go into having to bring an educational lawyer in so he could have an assistant from 5th grade through 8th. How I changed things constantly to build in a tolerance for sudden changes (no meltdowns now, just lots of questions! Why, why, why!) How we still struggle to find volunter work for his community servce hours needed in high school(he is still very reclusive, and it is harder now to break routines).

We have the help of our local DORS (Department of Rehabilitative Services). (DDA wouldn't touch him. Our case manager literally told me I did too good of a job) He will have a driving assessment in March, two weeks of career assessments in June and 4 months of living on their campus when he graduates (2010). We have a social skills group he can go to, but with his brother's illness right now, this, unfortunately, has had to take a back seat.

Today, he is a tall, lanky, talkative fellow. One who follows rules to a tee, never forgets his chores and loves animals (future career, we hope!). He will graduate on time with a diploma. He is on no medication (none were found to alter his behavior; we did do trials). He understands he has "something called Asssspergers (he thinks this is funny), but revels in being different.

He is my wonder. I marvel every day. And, thank God, for an answered prayer.

Updates, Updates - Part 2

2009-02-03T22:40:00.009-05:00

I was going to talk about me or my oldest son, but lately, I have been so wrapped up with the situation around my youngest son, I decided to go with his updates next.

I am not really sure where I left off. There is a litany of disorders: Dysautonomia/POTS, Delayed Sleep Phase Syndrome, Moderate Obstructive Sleep Apnea, and Chronic Fatigue Syndrome. Now, add to that the podiatrist's belief that he has early degenerative bone disease (fancy way of saying arthritis) in his feet and ankles. He is only 12.

All of this adds up to one homebound child. No school, no sports, no friends over for long periods, and since he fainted after visiting a friend's house for only 3 hours on Saturday-waking up to not even remembering going to the friend's house, there seems there will be very little visiting out either.

With all of this, add: 1. the three medications (down to two as of today, since one was causing insomnia); 2. a supplement to safeguard the liver and another to lubricate those degenerating joints; 3. the physical therapy twice a week to keep his muscles going; 4. the special high salt diet; 5. the at least 2 liters of fluids every day; you would think that we would not want for anything from doctors or insurance companies.

And yet, we have been through 3 pediatricians, 4 neurologists, a cardiologist, a pulmonologist, an orthopedic specialist, a sleep specialist (she is still around), a developmental pediatrician (still hanging on), gastro doc (gone), and 3 behavorial counselors (all gone). Now add in the physical therapists and a podiatrist.

Then, last month, I received three denials. One was from Social Security. Yes, he has a disability, but it is not severe enough. Yeah, right. The second was from the insurance company that was positive giving him an electric wheelchair would suddenly result in injury, death and destruction. So, no, you can continue to push around a 200lb boy by yourself. And I have yet to hear the reason behind the denial of the orthotics for his feet.

You can imagine that I am steamed and deflated at the same time. This necessitates the dreaded appeal process.

The appeal process with its additional clinicals, special letters from doctors and 90 days of calling back and forth for feedback is a major drain. And, I was already slated to go through this, so we could drive to Virginia to see yet another specialist.

So, here on my plate is 4 appeal processes. Someone come and haul me away!

But, back to my son. He, on the other hand, had begun to adapt, and is finally showing signs that he will make the best of his sudden changes in life. Of this, I am proud. A year ago, I would have wondered whether we weren't going to need a brief stint in a mental ward. He had gone from a bright, sunny, almost athletic prodigy from birth until 7 to a zoned-out, lethargic, overweight depressive by 10, and by 12, a fainting CFS sufferer with the mind resembling what one counselor called early Alzheimer's. His emotions were so raw and scary that I feared for his sanity. A year of counseling got all of us to cope with what we still don't completely understand. We are all ready to do what we have to do, even though no two days seem to be the same.

He has a Home and Hospital tutor from the county that comes 3x a week for two hours at a time. I am certain that he is NOT on the same level as the other children but I don't remember my 7th grade World Cultures (it was called Social Studies back then!) either. He will understand some algebra, have read through a book of poetry and will master creating Powerpoint presentations. The fact that most of his memory is unstable every time he faints makes it more profound and miraculous every time he passes a test.

And... I shall embarrass him in cyberspace. He has an online little "girl" friend. Yes, puppy love comes to the Unique Family! You can't say her name without a smile coming to his face. "Finally," he gushes, "someone like me!"

My heart almost breaks each time he says it. I hold back the tears and say without a cracking voice, "Of course, you are wonderful. Who wouldn't like you?"

Then the mother kicks in. Will he ever be able to drive? Go on a date? Get married? Hold down a job? These are questions I may literally have to wait 10 years for answers to (80% of children with dysautonomia go into remission in their 20s).

Then I look at the stack of denials and instructions for appeals and remind myself of my most important job. Make sure he has what he needs to succeed now. One day at a time.

One more tidbit to this update.

As we were slowly returning to our car from P/T today, he lets me know that I should be proud that my "greatest" accomplishments were turning out fine. He was referring to himself and his brother. I balked for a minute. Ha! Will my children be my "greatest" accomplishments? How about my career and my writing and what I give back to the community?

"Nope," he said. "What could be greater than a human life able to stand on their own?"

I teared up again.

Nothing, my lovely son. Nothing.

Microsoft's Inclusion Innovation Showroom

2009-02-02T08:42:00.001-05:00

I really want to visit this place!

Now, the goal is to make these items affordable for disabled and chronically ill people, who are on fixed incomes without making them appeal to their overburdened insurance companies and flat-broke and frozen asset-bound agencies.

There has to be a way to get this into the hands,eyes, ears and fingers of more people.

Would love to hear comments.

I have Succumbed...

2009-02-01T21:52:00.002-05:00

*Sigh*

I have finally and fitfully given in and created Facebook and MySpace accounts. Yes, even, old dinosaur me has decided to create a page and profile. Never mind my school (UOP) has created a profile page in my mailer attached to Google.

Now, let me start out by saying, I HATE MySpace! Most pages on their that I seem to stumble across are ugly - stationary backgrounds with moving written parts, black backgrounds and part of the text still in black (where did the rest of the sentence go?), garish, neon-type colors that make me run from my 22" screen. I could go on...blaring music, profanity, TMI, etc, etc. No wonder it got a bad rap.

But, I am one to be convinced. One of my best friends created a page and closed it to everyone, but her friends. SOoooo, I HAD to get a page to even see what she put there. Nice trick, you know who you are!

However, I have been slowly, but surely launching out into the online social scene and now belong to 4-5 communities, MyBlogLog.com (through Yahoo.com), Twitter and some other message boards. Plus, I have this blog. It only made sense to "go there." And I have.

But what I am really writing this about (this idea just popped in my head) is I would like to see some well-designed and beautiful MySpace pages. No flashing, writhing animations (so distracting), no grunge (is that still even around?) backgrounds.
Really, people, something good to look at.

I want you to give me an url so I can check them out. I might even showcase some of them, if I really feel they are good. Yes, this will be subjective. I am not trying to please everyone's opinion, just my idea of some decent aesthetics.

Leave me some urls, and I will promise to talk about them. I open my doors and eyes to what you've got.

Judi

Fibromyalgia & MCS Link

2009-02-01T10:22:00.002-05:00

Found this article on My Disability Blog. More science I know, but all this research eventually leads to new treatments or meds (hopefully, more treatments than meds--I can dream, can't I).

You can click on the title to take you to My Disability Blog or go here for the original article as it appears in the American Chronicle.

Brain Cells Restore Hearing

2009-02-01T08:34:00.002-05:00

Okay, I am definitely on my medical science run right now. This is another article, originally found on one of my blogfeeds: My Disability Blog. It is an interesting look at the science of restoring hearing. Not something you hear about often these days.

Since I am partially deaf (I am just beginning to acknowledge this publicly), this is of great interest to me. Wouldn't I love to have my hearing restored one day.

If you want to see the total article, go here . Post a reply to me or to my blogger friend.

Take care,

Judi

Is Insomnia in our Cells?

2009-02-01T07:17:00.002-05:00

Okay, this may not be big news to a lot of people, but I love the science of sleep and decided to park this here.

Again, the research is continuing. I would love to see where this goes when it comes to humans.

Are we insomniacs on a molecular level? My son, who has DSPS; is this the reason that melatonin and rigid schedules still do not fix this problem? How do you fix the problem?

These questions and more, hopefully, will come with continuing research.Any questions, reply and we can discuss.

Take care,Judi

---------------------------------------------------------------------------Improved Understanding Of Circadian Clocks

31 Jan 2009

Scientists from Queen Mary, University of London have discovered a new part of the mechanism which allows our bodyclocks to reset themselves on a molecular level.

Circadian clocks regulate the daily fluctuations of many physiological and behavioural aspects in life, and are synchronised with our surrounding environment via light or temperature cycles. Natural changes in the length of the day mean that an animal's circadian clock often has to reset itself on a molecular level, to avoid getting out of sync with the changing calendar.

Professor Ralf Stanewsky and his team from Queen Mary's School of Biological and Chemical Sciences study the circadian clocks of Drosophila, a type of fruit fly. Writing in the journal Current Biology, they report that the resetting process is governed by three factors, called Cryptochrome, Jetlag and Timeless.

The team's findings suggest that the light responses of circadian clocks are fine tuned on a molecular, by small differences in the binding affinities of clock proteins.Professor Stanewsky explains: "A circadian photoreceptor called Cry is activated by light in the blue spectrum. Once active, Cry then becomes able to bind to a protein called Jetlag. The Jetlag protein then helps to destroy another protein called Timeless, which is used to reset the bodyclock."Crucially though, we found that Jetlag also helps to destroy the original photoreceptor Cry itself. This allows the Timeless protein to reaccumulate during the next day, making sure that the clock mechanism continues to tick."

----------------------------
Article adapted by Medical News Today from original press release.
----------------------------
Source: Sian HalkyardQueen Mary, University of London
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Article URL: http://www.medicalnewstoday.com/articles/137310.php

Changes in Social Security Disability Process

2009-01-31T13:03:00.002-05:00

One of the blogs I now follow had this post. I found it to be very interesting. Right now, I have a case open for my son, and we have received our 1st denial. I have another 45 days to appeal it. I don't necessarily need the Fast Track process for him, but when I filled out the papers for myself, we went through a horrendous time of being practically penniless.

Though the tone of the article is hesitant and suspectful, I for one, hope that something is done.

Please enjoy:

http://disabilityblogger.blogspot.com/2009/01/social-security-disability-fast-track.html

Updates, Updates - Part 1

2009-01-31T07:27:00.003-05:00

Lately, this blog has centered on me. Sorry about that. Maybe it is me all the time that needs the most advocacy! LOL!

Today, I want to start giving the updates for everyone else in the house.

Let's start with the hubby. He's Stubborn. As you can see, he needs a capital S.

We have had the CPAP for three weeks now and do I not wake up every morning between 3am and 6am, because he is tossing, turning and NOT wearing the mask!

The first reason/excuse is that he keeps forgetting. The second one was it was suffocating him. Huh? How can something supplying oxygen to your lungs, brain and body suffocate you? He has a full face mask and anybody who has every seen these things knows they are huge. Not the thing to feel claustrophobic in.

I reminded him that he needs to wear it at least 4 hours a night for it to even be effective...

The third reason/excuse came after my speech. "Well," he said, "I must be doing at least 4 hours, so that's why it is off by the time I start waking you up."

You have to have been there to see my blank, staring face. "How can you have it on for 4 full hours, " I retorted, "if you don't go to bed until 12am or 1am!?!" "And, then start tossing by 3am!?!"

Do you know the old saying, "Charity starts at home?"So does advocacy.

So, we then had a good sit-down with the other two Hosers in my house and everyone contributed to the conversation. I sat in the corner like a determined arbitrator and advocate, armed with the computer ready to spew out the evils of untreated OSA. I really didn't need it. My two other Masketeers know first hand what can happen. By the time, they finished with him, he slunked away, like a properly admonished child and the next night, I slept until 7am!

I want to really celebrate, but this is not over. Why, with the amount of Depakote he takes is he still having breakthrough seizures at night? And, if he is feeling like he can't breathe, are they exacerbating his condition or because of it?

His neurologist told me, we may never get it where he is seizure free. Why? I think it is time for a follow-up and ask some hard questions.

As for the anxiety/depression disorder, he is AWOL on that, too. Hasn't seen the therapist in months. In his defense, we have been a little tight and the therapist cost $40.00 each visit. But he has also stopped the meds.

*Sigh*

To give him credit, he has not slipped back into the mood swings, which were surreal and dangerous to watch. But, he is also not advancing. He is battling this condition alone. Not good.

Here's where if anyone has suggestions, I am willing to listen. I still believe he has so much to offer, but is stuck. Like a broken record (remember those? No? Okay, like a scratched DVD) that can't get past a certain spot. Anything anyone thinks they can suggest, please do.

Tomorrow, I will discuss Andrew, the light of my life and I think, my greatest accomplishment.

Take care,

Judi

A thought is A'brewin"

2009-01-22T21:16:00.002-05:00

Lately, a thought has been taking shape in my mind. Not the greatest shape, mind you, but shape nonetheless. I find myself happy about my progress in school; how I couldn't have done this in a brick and mortar school and how as an end-user, I really love technology. I see how it has made my life broader in scope and easier in task.Then, I think about if I didn't have all these techie accommodations?

What if, I could not afford Dragon Naturally Speaking or Natural Reader with two voices? What if I never received a CCTV from DORS? And what if, my husband didn't have the project that allowed him to buy my 22 inch screen? What even about my cable internet connection that is paid every month allowing me endless hours to research the internet and connect with so many people in the world, disabled, chronically ill or otherwise? What would my life be like?

There was a time in my life when I knew and lived the answer to that question.

Before my back surgery, I spent a year house-bound and nearly bed-bound. I laid in a bed most of the day, took 16 pills to calm my body and abesent-mindedly watched television. I don't remember much of that year, but I know I shed a great many tears and made a great many promises to God. I promised I would help others. I promised I would do something important with my life. I promised I would have more fun and be less controlling. Having no control does that to you. If I could just get out of that bed.

So, back to this idea. I am trying to find a way to combine my life's experiences with disability, chronic illness and technology. I don't know if I want to train or write or travel and speak, but I want to let others know that there are options. There are opportunities and being disabled does not have to stop you.

Technology is a wonderful component of that idea. How we can use it to open doors for people. How we can restore some independence to them. How life can go on, happier, more successful and fulfilled.

I just came across the statement from President Obama and Vice-President Biden about their stand on the disability community in this country.

Here is the link: http://www.whitehouse.gov/agenda/disabilities/

There is so much to do within that statement. So many areas to cover, and I have decided I would like to be a part of it. Somehow. Technology and I.

Stay tuned.

Judi

The Day After

2009-01-21T11:08:00.002-05:00

Surely, by now, everyone like myself, would like to NOT see Obama's name plastered all over the place any longer. I couldn't bring myself to write a post yesterday. I twittered 150 words and left it at that.

For one, it was just too emotional. Human beings get this happy and show such spontaneous pride and joy on so few occasions. It was D.C turned into Disneyland with everyone smiling and feeling good and safe. How surreal in such a place. It was truly a party atmosphere. I could feel it even through MSNBC bland commentary.

Secondly, watching elderly black people look out onto the scene with almost disbelief was more than I could stand. These people remember not so kindly days. As one retired Tuskegee airman put it, back then, after WWII, the idea of a black president was so "far fetched," that the thought never entered his mind. And there he was, seated like a dignitary, staring in what looked like utter inability to believe his own eyes. He had lived to see the day.

The final reason I wish it would die down some is that the country is in quite a mess, and we, yes I wrote, we, have a lot of work to do. The President and Congress have laws and initiatives to produce. There are investigations that have to be launched in the financial debacle that has overtaken our investment industry. There are wars to slowly pull out of and jobs upon jobs to create. Retiring people have no pensions. People are still losing their homes. High school graduates face a smaller job market and dwindling funds for higher education.

And, I have to get back to doing my part; finishing my education, so I can add to the talent needed to keep this country No. 1; continuing to raise my two children to be sound citizens, who are the future of this country; and contributing in anyway I can to make sure Obama can do what is necessary to "remake" America.

So, this is the only spot you will hear of me talking about him (he is gorgeous in a tux!), his wife's dress (you go, girl!) and his kids (Malia and Sashs look positively angelic!). After this, it is time to get back to work. I have a headcold and two homework ssignments due tomorrow. After all, it is the day after the biggest party in America, and life goes on.

What the Heck Happened!?!

2009-01-04T21:54:00.002-05:00

The title sums it up for me. I don't even know what to tell you.

Sometimes, I wonder if I will ever be a normal person. I mean, a person who gets up every day, can get their day started and go through it relatively successful. And then continue that for a month.

When I look back and see that I posted the day after Christmas, and realize that the following week, I was so sick, I barely got out of bed most times, I don't know how I am going to make it in this world. I mean, losing an hour is one thing, but a week!

It started with two cups of coffee two days straight. Sunday, the 28th was spent in the bathroom and in bed. Won't go into detail, just think, more than 16 times running down the hallway!

Maybe that sent my body in a tailspin. I remember talking to my enrollment counselor one day, my academic advisor on another, and then BAM!!! Migraines and a crazy sore throat. I couldn't even breathe right, talk right and any light whatsoever sent shock waves through my head. That went on for more than four days. Or maybe it was three. I don't know. I lost track of the time in there. I spent the days too fatigued to move. Too sore to swallow food and popping prescription Ibuprophen to keep the pain and swelling at a level so I could at least say hello to people. There was nothing to do for the fatigue. I slept morning, noon and night.

In hindsight, maybe it was an allergic reaction. We had done a thorough dusting and vacuuming of my bedroom that kicked up a lot of dust. I will now have Benadryl on hand to see if it will lessen the blow, but bascially, I crashed and burned for several days. It got so bad, my throat started closing up and I could feel air going back and forth. The allergy med kept the sinuses from blowing up, but the damage was done and I suffered in pain for a good bit. Missed most of New Year's Eve and New Years Day. Oh well, Happy New Year this 2009!

One good thing came out of this, though. My husband cooked! I mean, not take-out, not fast food, a real meal with a meat, starch and veggies. A whole salad no less! Basically, it was that or starve. Necessity is the mother of get up off of your butt, so he got up, got over his fear of burning down the house and made a fabulous dinner I was told!

So now, he CAN NOT say he can't do it or quickly reach for a menu. All of my men have to learn to be able to fend for themselves. You never know when those pesky dust mites will attack again and send me into a tailspin.

Just a quick note. School starts tomorrow and I am unprepared. No work done and still reading with eyes that are still recovering. Thanks, dust mites. I love you, too.

After Christmas Glow

2008-12-26T12:07:00.003-05:00

Yes, we are one of those who celebrates Christmas. Tree and all. The ormaments handed down from my husband's mother. The trinkets that play music I have been collecting for the past seven years and my mother's old tablecloth that has been the treeskirt for three years running now.

It was a very good Christmas time on many accounts. I cooked up a storm (120 cookies, two pies, lasagne and a stuffed turkey) and had my hubby's mom and dad over on Christmas day. We sat and watched movies, returned good wishes over the phone and generally enjoyed the whole thing.

I could mention one downside: visiting my brother- and sister-in-law on Christmas Eve, but I won't. There was enough misery in that house. Let it stay there.

For us, we ate too much, forgot to read the bible story of Jesus (sorry, Mom and Dad!) and generally laughed and had a good time. It was one of the few times that I felt truly at home, at the top of my game (domestically) and enjoyed everyone, my husband included. We can rub up against each other sometimes. But, yesterday, was not one of those days.

Another reason for the glow is I received my final grades from school. A B+ and an A! In fact, on both final projects, I received 100% on them! The feeling of accomplishment is overwhelming. I keep looking around to see if people are really telling me that I am this good. Such stuff can really go to your head, and make you think you are on the brink of some sort of greatness. Greatness about what I don't know. Maybe, I am just good at going to school. Perhaps, I am just the best student there every was. I am still trying to figure out how all this will come together into a new career for me. A career that will allow me to take care of the four members of my family later on in life. Perhaps as more classes come along, I will get a spark of an idea. For now, it just feels good to get good grades. I haven't had grades like this since high school!

One thing more that is adding to the glow is my son has not fainted for the entire month of December so far. Five more days and it will really be official. No faints! In fact, today, he only felt tired for one hour after waking up this morning. Mind you, all this is tempered by the fact that he hardly goes anywhere. No school, no walking around outside. I struggle with the idea. But that is for another post. Right now, even if he has to live inside the house for the rest of his childhood, it is good to have him close to his old self. Close to the kid I remember.

I know there are others who celebrate in other religions and in other ways. My hope is that you celebrate in safety and in peace. Pray for those families who have been disrupted by violence this holiday season. Pray for recovery through their grief and some resolution to some of these events.

A couple more days and the new year will begin. My next post may be the usual reflective one I take at this time of year. Take care and hold someone you love close today.

Judi

Back in the Bedroom

2008-12-15T18:35:00.002-05:00

Yes, that is the title of this post. Because after almost three or four months, I have returned to the master bedroom and am trying to sleep with my husband again.

If I haven't made it really clear, due to his tornado-like sleeping habits and snoring, I have been sleeping on a pull-out bed in the living room. But the CPAP machine is here, so I figured, let's try it for one night.

Bliss. That is all I can say; pure bliss.

He turned over only once and that was a really slow and sleepy turn. No thrashing, scratching, grabbing amid ragged, deep breaths. I could here the machine blow nice, rhythmic puffs of air. And he slept through the whole night. The whole night, I tell you.

I know that may not mean much to you, but after near six months of not sleeping with my husband (if I cared about incurring bodily harm, plus no sleep), it was nice to be in the SAME room with him. I missed it.

Never mind the jokes I have already started to tell him. Hosehead, snorkelpuss. In fact, with three member of the immediate family on CPAP, I have labeled them the Three Masketeers.

No one finds me that funny. I am not really trying to be. I am just happy to have my bedroom back and the husband still in it.

Take care,

Judi

CPAP Heaven

2008-12-13T11:44:00.003-05:00

It says something when three of your immediate family members have CPAP machines.

I mean, at this point, my youngest son, my sister and my 2nd husband all have little black boxes sitting on their nighstands. My hubby just got his yesterday and I felt like an old hand at all the instructions. I wanted to know what his titration setting was (6), did he need to go back for another sleep study to confirm his apneas were indeed stopping (not right now) and what was the reorder schedule and procedure (every six months and he will get a call).

I believe sleep apnea is one of the most undiagnosed diseases in America right now. Many people are battling daytime fatigue, drowsy driving and bad memory, and it is due to not enough oxygen at night. Think about it. My son is 12, my sister is 33 and my hubby is 38. All of them did not get diagnosed until this year. What the heck was going on all those other years?

Well, in my sister's case, we have diabetes and a series of strokes. My hubby needed changes to epilepsy meds and stronger doses at that. My son, well, I have outlined pretty much how his autonomic system is a mess.

Which came first, I wonder? Or is it part of the same thing? Right now, the sleep industry is still out on this one. Yes, OSA is linked to heart disease, diabetes, high blood pressure. But how much does it contribute to or cause these diseases? No one knows for sure right now.

So, for this family, yet another member (I am calling them the Three Masketeers now) of my family dons the mask and hose and tries to get through a night...at least, breathing normally. Let us hope that this will avert any future health issues.

The Disorganization of Dysautonomia

2008-12-11T19:32:00.003-05:00

I mentioned in my last post that I wanted to give an update on my son. I wanted to talk about progress. Boy, I am glad I waited a couple of days! No sooner had I started to feel like I finally understand and can "handle" this disease, my young boo-boo goes through three days of unmistakable decline.

It started with him not waking up on time. Part of his sleep issues pertains to his circadian clock. In keeping it short, it doesn't work. There really is no sleep schedule. Heck, there is no schedule in his whole life! I have to be the one to say, "it's time to eat," "it's time for bed," "its time for a bath," etc. Nothing goes off in his head. Somewhere along the line, the ability to regulate and make a pattern out of life doesn't happen. He will go hours and not remember if he ate. Well, first he didn't wake up on time. It was nearly 10am before I saw him. Then he was lethargic. Not a good sign.

Lethargy means that it doesn't matter how much sleep he got, the fatigue is going to set in and take over. He collapsed into the recliner, putting his feet up as high as they would go and shivered. Not good. The heat was on and he is shivering.

He wasn't hungry. Uh, oh. Most parents know that to be a sign of ill health, and he is no different. Not even an egg sandwich with bacon could coax him into putting anything down his throat. Instead, I just made sure he took his meds with milk and let him rest.

The first day he was just tired. The second day, the joint pain began. His wrists, his neck, his back, his foot. He was constantly sitting down and didn't get to any of his chores. He barely got dressed. Meals, what little they were, were served in front of the couch, where he sprawled with his legs propped up. I really should have seen it coming by now.

By the third day, he didn't even want to walk across the street to his friend's house. And sometime right before dinner, he excused himself, promptly sat down and passed out.

I will say, he is always so gentlemanly about it. It never looks like those faints you see on television (he has had these, but we no longer find him sprawled against a door, or half under a table anymore). He can feel the weakness coming, the "confusion," he calls it. And I sure have shouted enough, "Sit down, when you feel like that!" Well, that is what he does. Sit down and pass out. Nice and neat.

Yeah, until he wakes up. Then he is is monosyllabic, drooling lump with little coherence and less responsiveness. It is best just to leave him be, propping his legs above his heart until he is over it.

The good news (yes, there is good news!) is that with the meds, he recovers faster. Two or three hours instead of two or three days. I am hoping we will be doubling his florinef again soon. Hopefully, that will stop these infernal faints for longer than a month. He has been having at least one once a month now for the last four or five months. Not a single break! Just as I get hopeful that he can make a month, the spiral starts.

Today, we were back to the joint pain and fatigue and little appetite.

I started this post because I am frustrated. I know there are others who are dealing with worse when it comes to dysautonomia/POTS. I know there are children who can't get out of bed at all. Children with IV lines because their stomachs can't take in enough fluids. But I just want some sort of routine. Some sort of normalcy. Don't tease me with a few good days only to snatch them away.

And when does this thing start to get better? The stat is 80% go into remission. I am trying not to be impatient, but realistically, my little boy has been getting worse for five years now; since he was eight. Are we on the upswing? Or just leveling out? No one has answers, except the mantra to ride it out. Yeah, that only means his whole childhood.

No more school, no more sports; no bicycle rides or skateboard tricks. No walks in the woods or making scarecrows. We barely get to the library these days. Nothing but: take this bunch a pills, dring 2-3 liters of fluid a day, don't forget your Miralax, get dressed, brush your teeth, go to sleep, put your feet up, let me take your temperature, your heartrate is too fast-sit down, blah, blah, blah.

*Sigh* Yes, I am venting. Sorry about that.

I guess a lot of this is coming out because we have to see a psychologist next week to discuss my boy and Social Security. I loathe the entire thought, and yet, I will be there. I guess I am thinking I should sound like those wonderful mothers you read about in the sunday paper. You know, the mother who never stopped believing in recovery and created an entire new child development program to help her child. Now, she tours the world, giving speeches to show us all how it all came together.

I don't feel like that. I feel helpless and sore. Sore at heart and sore in mind. Frustrated and angry. I try not to say it, but I want my life back. I want my smart, energetic little man back. I hate dysautonomia. I hate not having a life and the electric wheelchair that is coming tomorrow. I don't feel gifted or blessed. I feel tired and just want a normal day. A good old-fashioned regular day.

A day when my son smiled, happy to be awake and already impatient with questions of what we were going to do today. Sadly, I realize those days haven't been around for many, many years. And, I miss them. I am sure he does, too.

Education Along the Way

2008-12-07T08:18:00.002-05:00

I have to write about my son and his tutor.

My son, if you recall, has been home since October 31st due to his dysautonomia/POTS preventing him from attending even one straight week of school. I yanked him out amid a bunch of nonsense from the school. I am happy to report, he and I have hit a wonderful routine with his new tutor.

I won't mention names here, but Mr. C is a character. He sounds like some serious old (he will only be 57 soon, but he sound older, if you know what I mean) Southern down and out gentleman. Totally, something out of a novel. In fact, he said his "contemporaries" were Norman Mailer and Tennessee Williams. I can only imagine. How he ended up being a tutor for homebound children...well, maybe that is a story in an of itself. I am trying to pry it out of him, but he is a sly fox and gives very few details.

Back to my subject. They are doing well. My son, having spent most of his life with only Mom, needs male figures in his life and he took to this guy like a bullet slides into a gun shaft. Yeah, that is a strange analogy, but we are talking guys here.

Mr. C is no nonsense, cusses (yes, I don't have the heart to say anything; he sounds so real when he does it), despises textbooks that don't get to the point, and thinks that since he didn't have to learn all that stuff about "farn" countries back in his day, no wonder my son is bored. I couldn't understand his methods at first, but here we sit, going into our third week and my son is actually learning, remembering and participating in a conversation.

Now this might not seem much to you, but for my son, this is a milestone. Confidence has always been in short supply for him and he doubts himself terribly. Here, with this guy, I have seen my son begin to blossom and change.

All this in two weeks? Yes. Two weeks of this booming, southern drawl and an plan of attack that make sure you know "sump'n" before we move on the the next thing. It is beautiful to listen to! Suddenly, my son isn't mumbling with this timid voice, but answering, countering and being squarely honest when he doesn't know "sump'n."

I am not aware whether this can be tested on a standardized test. I am sure that these qualities will not guarantee him an "A" or a "B." But I am so happy to see success in the same ROOM with a textbook that I don't care.

Education is important, but some of the most important things we learn is to learn who we are, what we know and what we don't know. And, if Mr. C doesn't get a lick o' learnin' past that this year, he would have done more for my son than any other teacher has done in his nearly 13 years, including me.

I had wanted to write about how my son hasn't fainted once since he has been home. I wanted to write about how he can wash dishes and sit at the table. Maybe in another post about his progress. But for now, hat's off to Mr. C and reaching a little boy who was floundering in the educational system. Thanks for making sure he is learnin' what he needs to learn.

Take care,

Judi

Hearing Loss and other little things

2008-12-07T07:53:00.003-05:00

As long as I can remember, I have not been able to hear out of my right ear. No one knows if it was there from birth or shortly after, or what. But the crux of the the matter is I haven't heard anything out of that ear for years.

It wasn't much of a problem most of my life. Children are resilient and I soon learned what side to make people walk on so I could catch all the the conversation. I was in college before I realized I lip-read. And, I avoided crowded places where I would not be able to hear anything over the background noise. All this without knowing even how I lost my hearing.

Not that my parents didn't drag me off to doctors all the time. I saw an eye specialist and and ear specialist twice a year. No one had any answers, or they weren't telling me, but nothing changed. I never got a hearing aid. I just went on hearing the best I could.

A couple of years ago, I had some extensive testing done. I guess I wanted to know what was what. It just seemed kind of strange to not know what was going in your own body. That testing showed profound hearing deficit due to nerve damage. The doctor conjectured that it may have been congenital, meaning I was born that way. And, no, a hearing aid wouldn't help.

I mourned a little, but didn't for long. I mean, I had lived this way for some time already and had adapted. What else could I do?

That was before two trauma incidences in my life.

In 2006, I had a case of Bell's Palsy. A bad one. The whole right side of my face from the top of my head to my shoulders ceased to work. The pain was tremendous and the vertigo that ensued shook my world. I could barely walk down a street for falling to one side. Fortunately, the majority of the symptoms lasted only four months. The vertigo lingered for awhile, but eventually, cleared up so I could walk and drive again.

Fast forward to this year, when I underwent two teeth extractions. Suddenly, the whole situation with the ear thing was back again, and this time, with a vengence. I couldn't even make right turns in walking without the world looking like a 1960's Batman villian hideout!

My doctor, bless his misguided soul, prescribed lots of antibiotics to no avail. Finally, I "suggested" that I see a specialist.

Now, trust me, I am at the point in my life and in my family's life, that I really don't want to see another doctor as long as I live. My feeling is that we have gone way over our quota, but there was nothing else to do.

Off I went, only to find that these doctors were no nonsense, answered questions, swore off antibiotics and got results. If only all this family's doctors could be so efficient!

Within two weeks, I had an answer. It seems that this nerve damage was not just for my hearing, but for my vestibular system as well. In fact, I have very little feeling inside my ear. It may have been a slow progressive loss, but those two traumas pushed it along considerably.

That wass the bad news. There is good news. Treatment abounds.

For now, I am taking Valium - yes, the happy pill - three times a day, along with Meclizine, twice a day and Compazine, once a day.

It works like a charm! Don't ask me how, but the world is right again! Words don't dance, rooms don't shimmy, and I even drove at night withoug incident!

Now, I can feel when it is wearing off, but then, I pop another pill. I know that sounds sad, but I really don't care.

I never realized how much things were moving. I just began to deteriorate. I have been able to read three text for classes this week without a migraine. I still take breaks, but I am not losing my place and comprehension as much. I am not so sleepy and foggy. There isn't this heaviness over my forehead anymore. All this was from a non-working balance system! I thought I was dying or something! Well, maybe not dying, but developing Alzheimer's. It was truly scary.

Here I sit, finally with the world still and me with the ability to function. It truly is amazing what little things can make such a difference in one's life.

I will end this with a plea to everyone to get little things checked out before they become big things. You never know what could be causing so much pain or change in your life.

Take care,

Judi

Sad state of things

2008-11-30T20:36:00.002-05:00

I am not feeling very good right now.

My Critical Thinking grade has slipped to a C. Why, because I have been too sick to remember to post an assignment. A whole assignment!

When I think that to the day it was due, the 23rd of November, I was in bed with a blood pressure of 154/107. I could barely stand up. In fact, if I stood up, it shot higher. That little episode lasted 2 whole days. No warning when it showed up and no warning when it went away. I barely remember the days of that weekend at all. I remember trying to clean my house in preparation for Thanksgiving and not getting much done. My vision was blurry and cloudy. I actually remember trying to do the assignment and not having the brain power to know whether my answers were really correct or not.

This has become quite unbearable. This week, it was my cycle that took out 2-3 days of the week. Pain, cramps and unbridled fatigue saw me more in the bed than out of it. Moments of lucidity were far and few in between. I did prepare Thanksgiving dinner on Thursday, but the cycle started Thursday night, and I don't remember too much of Friday and Saturday. I remember today. Even today, I had a major nap.

This napping thing is becoming a major problem. It could be the vertigo meds. I was told it can make you sleepy. But what about losing big chunks of memory? I just don't know.

I submitted the assignment late. I have no idea what grade I will get on it. No, I haven't told my instructor I am ill. I don't know why not. I am proud, I suppose. I hate to always whine about how ill I feel. No one wants to hear that. I hate to have to "take it easy" and give up things and dreams. I hate loss and having to voice it. If no one knows, no one will ask me "how I am feeling today." I don't have to disappoint anyone in saying I still don't feel well or better. Yes, I am a big faker, but this kind of faking it, I like. I feel better about it, because, it is my secret of sorts. Yes, I am blogging to the world and anyone can see it, but my classmates do not come here nor my instructor. I am not sick to them, and that matters to me.

In my last block, I became ill, and used two software programs to stay up with everyone. No one knew but one instructor and my enrollment counselor. This block, the reading is so long that I cannot get through it. I highlight what I can and move on. This time, I tried to keep it to myself and this blog. It caught me off guard when my enrollment counselor knew I had fainted. Silly me, I had given him my blog address. And he came here and read up on that little event.

*Sigh* I am not sure how to handle this. There are 3 more weeks left before a winter break. I will see one of my docs next week. Hopefully, he will give me some advice and some help. I don't want to stop school again. I don't want to fail. I have some soul searching to do.

In the meantime, I have three weeks to possibly get back to a B. That would make me feel better. Like I wasn't so sick. Like I could make it for once.

Take care,

Judi

Where Have I Been

2008-11-26T07:29:00.002-05:00

Hello, there.

Yes, I have been quiet. Things have been a little rough lately with the vertigo. If you remember, I fainted a couple of weeks ago. They lined up a ENT appointment and then inner ear testing. Stuff I have never heard of. Always makes you think that there are people in the world busy doing something you have NEVER heard of and making pretty good money at it.

Anyway, I had to stop my meds before this test. Well, that wasn't easy, but I complied.

Only for the worst two weeks of my life to ensue!

Simple car trips became unbearable. In fact, driving with my husband at all became unbearable. My own driving (what little I still do!) suffered. In the middle of driving, the whole world would just shake back and forth; real fast like. Okay, not something you want to have happen on a major thru-way. Then, once I came home, I was out. I mean, asleep.

Yesterday, it was for three and a half hours.

On top of that, it has affected my brain in other ways. I couldn;t concentrate, couldn't read well(my eyes going back and forth over the page produced blurriness and I felt like I kept looking at the same sentence), couldn't seem to comprehend what I read (out of four chapter, I got down 2-don't ask me what it means, though). Even though my grades are still good, it was the worst time I have had so far, and I lost points just because I couldn't finish an assignment or spend the time researching my answers. Technology wasn't the problem here. The operator (me) was just out of it.

Well, the other thing I wanted to tell you is sometimes, it is good to flunk something. I flunked those ear tests so bad, it wasn't even funny. By the time I left, they were treating me so tenderly because they didn't think I could walk down a hallway safely.

The worst one was something called a caloric stimulation test. No, it has nothing to do with eating. They put cold and warm air in your ear, which is supposed to make you dizzy and feel like you are floating. It's like testing to see if the system works. Well, the left side did, but the right side? Can I tell you that I felt nothing. Not only did I feel nothing, but to me, the room got clearer, settled down and I could think straight.

Now, I don't need a degree in Otolaryngology to know, whoops, there is a problem here. How can I have one side working and the other side mute? I mean, I didn't even feel the temperature deep in my ear. I know I couldn't hear in my right ear, but no feeling?

In a short phrase, the answer I have found on the internet is nerve damage.

How severe? I have to wait until December 4th to find that out. Also, I guess they will tell me what I have to do about it. The tech mentioned physical therapy (I walked into another room, supposedly marching in place with my eyes closed!), but I am skeptical. I know I shouldn't be, but I have been off-balance for years (if I ever got pulled over, I am going to jail. There is no way I can walk heel-toe at all!), but now it is worse. And does this tie into my three faints this year or not?

What a wonderful web this is turning out to be! I will update when I get more answers.

Take care,

Judi

Here is the Letter I Wrote

2008-11-18T08:47:00.003-05:00

Part of the benefit of writing things down is you get to look back at what you were feeling at a particular moment in time, and ponder any new thoughts on that subject. Reading the letter I wrote to the school regarding my son's need for Home and Hospital let me realize what a mistake it was to even go down the road we took this year. He should have started in H&H from the start. Hindsight again is 20/20.

Here is the letter. Sorry for the length.

Friday, October 31, 2008

To Whom It May Concern:

This letter is to request that ___, student at _____ Middle School, be placed in the Home and Hospital Program. This decision comes after attempts to secure a rewarding and successful 7th grade education for ____ within the school building.

______ has a myriad of diagnoses that hinder his ability to maintain attendance in a regular school day. We requested an aide for _____. We were denied. The reason given was that there was not enough evidence about his condition to support employing a full-time aide. We understand that _____'s condition is not well known or understood, but we were not fully given an explanation of the appeal process in order to increase anyone’s knowledge. When I asked about an appeal process, I did not received sufficient information in order to file one.

Without an aide, ______ must juggle his paperwork, books and manual wheelchair, often pushing himself to each class. This is counterproductive to the requirements of his medical condition. Using energy for this causes him to become more fatigued and less stable. We were in the process of securing an electric wheelchair through our insurance at the time of this letter.

Due to his continued absences, _____ was given an abbreviated school day, which according to what I have been told by Ms. _____, Vice Principal of ____, precluded him from having an aide at all. The reason was stated that the county would not pay for a part-time aide. In this abbreviated schedule, _____ as to have a 15 minute homeroom with Mr. ____. On at least three occasions, Mr. _____ was unavailable for this homeroom and _____ sat alone in a classroom before his 1st period. In fact, on the 29th of October, Mr. ____ was absent and no one was sent to replace him in his role as homeroom teacher for _____.

It has been difficult to secure homework for _____ on the days he is absent. While we have textbooks for three of his classes, we still do not have a viable way for him to access his literature textbook to this date. Also, the usual procedure seems to be to hand _____ the missing work the next day he is in school and say he has to catch up. Even after I offered to come at the end of the day and pick up any missed assignments to avoid this. There have been attempts to use technology (email, fax machine) in order to stay in touch with teachers. This has failed to resolve the problem and has not resulted in successful communication with all his teachers regarding missed assignments, outlines of class work covered or upcoming projects.

Much has been made about ____ remaining in school for the social interaction. On many fronts, this argument has failed.
Since 6th grade, when ____'s rare disorder became diagnosed, we have requested and waited for a time when we could address teachers, staff and students about it. We wanted to dispel rumor, innuendo and insult. We have not been able to secure a time to this date. Consequently, _____ remains the target of insults and unbelief about his condition. This has caused a great deal of emotional hurt to _____. Daily, he must ignore several boys who taunt him in his wheelchair. He must remind teachers openly to request a student push him from class to class, thus having to restate his needs and inabilities. If none can be secured, he “grandfather rolls” himself to his next class.

This week after sustaining a contusion to his ankle, this became quite hazardous to have him using his feet to help propel him along in his wheelchair. Thankfully, Nurse ____ alerted me to the problem (he also did not have a shoe on the injured foot), but this did not change the fact that he had to get from class to class without regular assistance.

Also, regarding the social aspect of school, ____ has not received any information that is given during early morning announcements, so he is completely unaware of any aspect of student life, unless he hears it from his friends or grabs a teacher in passing in the hallway. This situation has had recent devastating emotional results in regards to his social interaction.

_____ Middle School held a 7th grade president race, into which _____ was nominated by 10 classmates. At a conference meeting, the vice principal expressed concern about ____attempting to run for the office. She stated that ____ may not be able to attend meetings for that position as they were held in the morning. I offered to bring him for those meetings once a time was established. Not only did I not receive any such information, _____ was excluded from the speech session with his peers and the voting process altogether. This resulted in ____ feeling that he “did not exist.” Quite upset, we now wonder what is the point of continuing this charade. We were not notified of picture day. On the makeup day, we received no notice as well, only once we arrived at the building for his regular abbreviated schedule, were we rushed to “catch” the photographer before they left.

At this point, the return on using these parameters for ____ education is diminishing. The additional fluids that must be supplied to the school, the lack of interaction with his peers in announced social activities, the lack of meaningful class work continuity on his days out, the added technology (electric wheelchair, reminder tools) that must be used (some of which are supplied at our expense) brings us to the decision that all of this can be avoided by his return and future enrollment in the Home and Hospital Program.

Bringing My Son Home

2008-11-17T14:59:00.002-05:00

I don't know about other parents out there. I have heard the real horror stories about trying to get a good education for children with learning disabilities, ADHD, autism, etc. In public school, it more often than not, is a fight to get proper accommodations and placement. Children with medical issues go through some of the same thing, especially, if there disorder or disease can affect them neurologically.

Well, we are not a horror story, but my youngest son is not making it. School increasingly becomes a place where he is not succeeding. Dysautonomia, chronic fatigue, pains in his joints and muscles, gastro pain and cramps, etc., etc. makes it a battleground at best.

I never wanted him to go to the brick and mortar school in the first place and now, getting him back into Home and Hospital has become nothing short of a fight. He hates being there. I hate him being there. It is almost palatable. But, he wanted to try and now he almost wishes he didn't.

Anyway, long story short, since he was already part of a 504 plan, in order to go into Home and Hospital, we had to have a SST meeting. That basically means, people you don't know, who don't know you well, "help" you decide what you should do. Even though you have already made up your mind and have the medical forms already filled out.

To give them the benefit, they are trying to make sure you know what ramifications your decision has. Since we live in "take one day at a time" mode right now, it is a moot point. I do not know what my son will do later in life. I don't know if he can make it in a magnet program. We don't even know why or how he gets sick, for goodness sake!

I stuck to my guns and tried not to lose my temper (which has been getting easier to do as I get older) while everyone stares at you. Then they tell me that every 60 days, I have to do the same thing over and over again. Thank you! I just want to see you every 2 months.

No bother. I figure I can bring videos of other dys/POTS sufferers. I can get audio tapes of other children and how they feel about school and how it doesn't work for them. Perhaps, we can watch a movie. Either way, he is staying in the program. If he has to do this through high school, he will.

Tomorrow, I will post the letter I wrote that put that final nail in the coffin for me. Life has to move on and so does my son's education.

See you tomorrow.

Judi

It is What It Is

2008-11-13T07:53:00.004-05:00

Have you ever had to put something in writing and once you did, it became real? Let me explain.

Sometimes, I can think about many things and they remain airy, little bubbles of thought. They could be dreams, real or pipe, fantasies, vents, frustrations, etc. They could be the budget I want to live by or the to-do list I made up this morning. But as long as I don't put them down on paper, it seems to not be real to me. Maybe real, but not permanent. I get to say it was a just thought or a passing piece of whimsy.

Maybe that is why I have been very hesitant to write just anything in my blog. I know journaling is to get your thoughts on paper. But we all know that if we found our childhood diary, how those thoughts no longer even look like our minds today. We would laugh and think that we were quite crazy to be so upset at our parents, or so loony over that boy. Maybe, we don't even see that to-die-for best friend from that time anymore.

Well, today, I am going to put down some things in my life that are fact and are pemanent. They are what gives this blog post its title. Bear with me.

1. I am going blind. Very slowly, but definitely perceptibly. Every year means more loss of sight. I pray I will get a provisional driving license next year. But after those four years, I will not drive anymore. I will be 48 then.

2. I am having more trouble hearing. I have dealt with this my whole life. I did not even put it in my profile until today. I will one day be very hard of hearing or deaf.

3. I am weaker and frailer every day. Joints, muscles and energy don't even support cleaning the house in less than two days. And that is with my children helping me. Chemical sensitivities fill my lungs with mucus and cause headaches and dizzyness. I am now struggling to be a homemaker.

4. I have two children who will be collecting social security benefits. Today I came to terms that I will be filing simultaneously for both of them this summer.

5. My husband is a very damaged person. He has too many fears and anxieties, too little self-confidence and self-reliance. I must become the leader in almost all things for the future of our family. He is not even capable of being a partner. I see that I will have to take care of him.

6. I will probably struggle with money for the rest of my life. The medical needs of the members of my family will be extensive. There will be nothing left after we are through except a special needs trust set up for both my boys. What will be in it, beyond the life insurance, I couldn't tell you.

And finally, from today, I no longer measure success in career ladders, climbed, avoided or left behind; consumer goods stacked in or out of storage units (including flat screen TVs); houses with echoes; extensive investment portfolios; spotless counters and floors; new car smell or old lace and silverware. No more life measurements through clothing, collateral, perfectly manicured lawns and flower beds, or any other superficial earth-bound thing.

From today, I count success in smiles through pain and weakness; dinners eaten together without a fight or anxiety; uninterrupted sleep; the taste of a good, filling meal; laughter, loud and raw; moments of mental clarity and physical strength; sights of strong color; sounds of harmonious music; the knock on the door from friends. These and all other eternal things will be my holy grails, my mantras, and my sustaining life goals.

It is truly what it is and what it will be.

Obamaobamaobamaobama

2008-11-07T15:34:00.003-05:00

Will I be the only one who will be anti-climatic during this heady period of jubilation? Will I be the only one not floating on cloud 900 with all the other Dems and hysterically, happy people? Will I forego dancing like a lot of grasshoppers?

Yup.

Why am I not celebrating with smiles from ear to ear and a happy jig in my feet?

Because the truth of the matter is, this next presidency is going to be very difficult. No other president will be scrutinized as much. Anything he doesn't do correctly will be over-analyzed and pointed toward his defects. Anything he does well will be chalked up to the savvy advisers he is surrounding himself with.

And, realistically, the powers that be (or will become) don't fix an economy overnight (or break it, either). A generation has to pass to remake a war-torn country. A million years ago (roughly eight), we had a surplus of government cash. Here in Maryland, you saw expansion like never before. The schools, downtown. In fact, they created a bunch of "downtowns." The investors were everywhere holding seminars on how to get rich in real estate. Every block seem to have a gutted house with a "for sale" sign in front of it.

Now, even the car industry is looking to the government for a handout. I thought welfare got reformed at the same time the deficit disappeared. Suddenly, everyone has a hand out. I guess they can dig out that sign that kept track of the national debt again. Where did they put that thing?

I am sane enough to know that politics is a sticky business and shaping a country happens over terms, not a term. Changing an economy takes years, not months. There is no magic wand on inauguration day.

I am not looking forward to the taxes. Where else will this country get the money? I am not looking forward to leaving terrorist country unwatched. And, how else will we get our guys and gals home?

Suddenly, gun lovers are buying up guns by the stacks because they feel Dems will change the laws on them and automatic weapons, like the one that killed a little boy here in Maryland recently won't be around to show off to the kids.

And unbeknownst to Palin, Russia is doing a lot outside her back door.

So, there is reason to get your head out of the clouds, forget about the will.i.am video on Oprah and get back to business.

For us, that means, back to doctors who don't know their jobs (replaced one this week). It is back to stretching SSDI and a retail paycheck to take care of a family of four. It is back to school work for me (week 3 of new classes) and it is back to home tutoring my son, who is still too unstable for regular school.

I put the extra leaves in my table today. Now, it will fit 8-10 people for Thanksgiving. And, the new catalogues came for Christmas. The turkey will be smaller this year. The gift lists smaller, too.

Go ahead and dance if you want to. But, winter is coming and this ant is getting prepared.

Ended up in the Hospital

2008-11-02T22:46:00.002-05:00

Well, here I go again. Having to write about a scary episode that no one has any clue why it happens.

I passed out yesterday. Nearly landed in the ole' cereal bowl. If it weren't for my sister grabbing my arm, and trying to shake me awake, I don't know where I would have ended up. I just remember having a fantastic dream with great band music playing. For my sister, my eyes rolled back into my head, I shook and collapsed into a heap.

This being the third time I have passed out this year, I decided to go off to the emergency room, a place I avoid like the plague.

You see, when you are chronically ill, the LAST place you want to be is the ER. They don't have time to deal with complicated cases. You don't fit a nice mold and you have something other than diabetes, high blood pressure, rhumatoid arthritis or some kind of cardiovascular problem. Once you don't fit a nice, neat mold, you are a pain in their....you can fill in the rest.

So here I arrived by ambulance, reeling; out of it; vomiting. Sorry for being graphic, but it was not pretty at all. I could barely stay on the gurney, the room rocked and reeled so much. The lights bothered my eyes. They gave me a bowl to continue to retch into and hooked me up. I am so familiar with all of the procedures but I do not let on. I don't want to be seen as a career ER-body. You know, those hypochondriac people who have NOTHING better to do than lie on a hard roll-a-bed for four hours. I would love to meet one of those people. I never have so far. Most people I meet HATE the ER and can't wait to get out of there.

I'm sorry. Back to me getting ill yesterday. I won't drag you through four hours of blood work, urine samples and questions. Bottom line, the wonderful doctor believes I have Labrynthitis, an inflammation of my inner ear. Sounds plausible. Especially since I have passed out twice before this year. All after having three extractions of wisdom teeth that caused TMJ to reappear, vertigo that almost couldn't be controlled by meds and TN-trigeminal neuralgia, a new one for me.

Oh, BTW, how do I describe TN? Well, like electricity going through your cheek and out your ear. All that because you sat next to an open car window while the car was moving. Or sat in a room with the ceiling fan on low.

At this point, I tell the doc, thanks and now what am I to do? Follow up with your doctor (primary, that is) and see a specialist (ENT, that is).

Sigh.

More doctors. More people to poke and prod me and say "All your tests are normal."

I suppose I shouldn't be so blase or cynical. But, I have been tested for Lyme, Lupus, Rhumatoid Arthritis (RA), Multiple Sclerosis (MS), zoster, syphillis (seems to be standard practice) and a myriad other things, and except for a slightly elevated zoster result (that everyone ignores), I am perfectly healthy.

It was almost a blessing to finally have hypertension. At least something showed up abnormal. And yet, the tingling down my arm continues, the pressure in my ear is relentless, my jaw clicks and rocks better than a rocking chair, pain radiates from my mid-back and EVERY time I try to live and work like a normal human being, I pass out or get so fatigued, I need 3 days in bed.

Somewhere out there, a doctor has been studying exactly what is wrong with me. I hope to meet him/her one day. For now, I take my new meds and "get some rest." And try again, to "take it easy."

A New Direction

2008-10-30T19:07:00.002-04:00

I am in school.

Yes, I have enrolled in college...again. Now that I have started again, I can talk about the many attempts at going to school. I can talk about how I wished, dreamed and cried over this. How it shaped my life.

You see, I always loved to learn. Whether it was for a class or not, whether it was required or not. I loved to read and collect the books I read (see my library at: www.librarything.com/catalog/judielise). There was nothing I wouldn't try to learn and when the internet took off, I was there, realizing how much I could learn right in the comfort of my own home.

I started out at the top of my high school class (number 12 out of 604 students-top 2%). Everyone had very high hopes for my future. Everyone, but me. Little did everyone know the struggle I had just to finish my senior year. The migraines that would plague me through my college and work life were just beginning. My back already had a life of its own, slowing me down and making physical activity so painful. Maybe everyone should have known, since I took a semester off after graduation. Six months of doing absolutely nothing. Not even work. But when January 1984 rolled around, I thought I was ready. I had rested and was shouting, “Look out college life, here I come!”

Not even two months in and I contracted an eye infection. The doctor at the infirmary said it looked like someone used both my eyes for pincushions. What he couldn’t explain was the fatigue and weakness. I had friends lead me around campus at night because of light sensitivity, feeling the wind against my swollen, burning eyes, wondering if I was going blind. Six weeks later, still wearing sunglasses, I could see, but would suffer with sun-induced migraines for many years after. I only stayed another semester and gave up. I couldn’t do the reading, either for the psychology major or the literature minor. And suddenly, there was a new problem. I couldn’t remember anything. Not from my notes or anyone else’s. My near photographic memory was shot. I would suffer with this until this day, using Post-in Notes, lists and electronic memory devices to fill in all the missing gaps.

Dejected, I came home and tried again, this time while I was working. Perhaps I wasn’t cut out for university life. I tried a community college. Here I did a little better. But into my next to last semester, I gave up again. Fatigue, migraines and the constant back pain was overwhelming. I tried to live on Tylenol and couldn’t.

Over the next few years, I would try again, and again…three times, three more schools. Three abysmal failures. Finally, I gave up for good. I drew the curtains closed on a dream, and put it away. Maybe, I was meant to be a drone; work my fifty years in a cubicle and retire with the gold watch (or whatever it was they gave women). I went out into the workforce and started to climb the ladder.

And what a ladder! I started as a walking messenger, making $3.80 an hour. Sixteen years later, I would command a convention coordinator’s position while covering administration for a CEO/Founder and a Director of Business Development. I loved it. I was respected and admired for my drive, my calm demeanor when everyone else ran around like chickens. I asked for a $5000 raise and got it. No one wanted to see me leave. Except the woman across the street who ran her own business and offered me even more.

But again, I was living a nightmare. I could barely make it in five days a week. Because I was so capable, nothing suffered, but everyone knew. They chalked it up to being a single parent, raising two boys, one with autism, all on my own. What they didn’t know was the fatigue, the back pain and flu-like illnesses every weekend were taking its toll. I routinely ran out of steam by Thursday. Finally, I tried to come in one day to cover when I knew I couldn’t. My boss was shocked. I was bent over and slow. I had to think slow and deliberately before I spoke and though I could still do my work, it was demoralizing just to look at me.

That afternoon, the rest of the staff staged an "intervention," called a good friend of mine to pick me up and sent me home. I felt horrible. I took some time off and tried to go back. Nonetheless, August 2001 was the last time I worked full-time. I would never see accomplishment like that again. Though I would work part-time at various places and even try to run a small graphic design business out of my home, I became worse and worse to where I finally applied for disability in 2003 and won it in 2005.

What does all this have to do with school? Well, all that time, I thought, I couldn’t go to school again. How many times had I tried and failed? Why set myself up for failure again? I thought I would have no chance at learning something to change my future. And I still thought that way, until a month ago.

The reason is technology. The same technology that connects me to so many wonderful people here on the internet has given me the chance to finish my education. The chance to go when I can go. Learn when I can learn. Read when I can read, in enlarged letters to save my eyes. In chairs to support my back. I have the chance to do what I really want to do. Learn and succeed.

Has it been easy? No, a migraine kicked in the first day. But I have a computerized magnifying system now that keeps the eye strain and pain at bay. I don’t overdo it and the classes and readings are structured that I don’t have to overdo it to succeed. How about my memory? It is still fuzzy. But I can print out notes and post them around my school area. I have charts on my computer desktop that I can open at a moment’s notice. I have the ability to use audio and a CCTV in order to facilitate every aspect of my education. It has been heaven!

But am I a successful student, you may ask? After 20 years, are you even capable? Well, below is a copy of an email I received from my communications teacher. I didn’t put it here to brag. No. I cried when I read it. I cried for the lost years and the pain and the failure. I cried for the feelings of disappointment and the fear of not having a chance to truly succeed again. I cried because here I sit in a room, knowing different and believing again: I can learn. I can succeed. I have not failed.

Everyone, I am grateful. Grateful to a system that allows me to try again. Grateful to a university that is set up for a person just like me. Grateful to God. That wonderful God, who gives second, third, fourth, fifth…and sixth chances. I have learned to really understand that.

So, here I go again. Pray for me as I do for you.

Judi

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My teacher’s email:

You are Excellent!
Posted: Thu 09/18/2008 01:19 PM,
by: MM

Hi, Judi!

I read you[sic] response to my post on Persuasion vs. Decision and I couldn't help but feel the strength and energy from such an excellent learner as you--

As your classmates have commented, your energy, passion and excellent insights as well as ability to express your ideas are inspiring. This class is so lucky to have you. Despite of what you know what you can do, you remained humble with no air of arrogance on your part. You have also been very supportive of your classmates. You see? I told you that you have great leadership skills... I pray that you will be blessed with more energy and light.. Keep shining, Judi! Keep spreading the light and the energy.

I will miss you and I will remember you ever... I hope that we can continue to keep in touch even when you are no longer my student.

Been a Bit of a While...

2008-10-30T18:57:00.002-04:00

...since i posted something. I feel guilty. Almost nine days and no postings! Not that things haven't been happening here but just no time to put them down.

Let see, nearly left the husband again. Seriously. He is a mess and I love him and all, but I am beginning to think marriage is greatly overrated. Since I have these miserable things called morals, I will probably just put up with him and not bury him in the backyard. Though everyday, I understand that show "Snapped" more and more.

Actually that show is really off the wall! But this was about catching up.

Okay, hubby's mom is out of the hospital. Oh I don't think I wrote that. Must have left it on Twitter. She had a triple bypass and survived. She is a feisty, strong little Italian who would remind you of Estelle Getty (RIP). She had to go back in for blood clots on the lungs, but is home resting now. Some serious prayer sent up for her. I don't know what my hubby would do if his mom passed.

I am pulling young son out of regular school and putting him in the Home and Hospital program. The reasons for this would take up a post by itself and I will write it when I calm down. Right now, I would probably break all decency rules and have the blog shut down and that is not my purpose. Blogging should be cathartic, not catastrophic. I'm trying. Trust me. Real hard.

Also, got my final grades from school. Another thing that can take up a whole post. Plus there is a post that was written before final grades that has to be posted first.

So, it looks like I am going to be posting more tonight. I will try to get to everything.

TC and GB,

Judi - the "real" pitbull" soccer Mom

Cicadian Clock and Memory

2008-10-21T15:07:00.000-04:00

If I sound like a broken record on this, please forgive me. Since it affects my family so deeply, it is kind of a broken record in my house.

At this point, only myself and my oldest son with autism have a half-way decent memory. My sister, husband and young son...oh, just forget it.

All three seem to have sleep issues and the memory, especially short-term is just terrible. I don't even laugh about it anymore.

I just take the peanut butter out of the freezer, pick up the garbage bag from the middle of the floor where someone left it, retrieve my sister bank card from the back of my van and keep going.

This article is an animal study, but it hits home with us. Another link in the chain of loss thoughts and disrupted sleep. Enjoy.
----------------------------------------------------------------------------------

Circadian Clock Could Help Learning Retention

Your circadian biological clock, which regulates the timing of periods of sleepiness and wakefulness throughout the day, may actually be helping you remember what you learn, according to a study in the Proceedings of the National Academy of Sciences.

Researchers at Stanford University's Department of Biology compared tasks between two groups of Siberian hamsters — one with their circadian rhythms removed by non-invasive means and the other a control group. In a delayed object recognition task, arrhythmic animals couldn't distinguish a new object from a familiar one only 20 minutes or an hour after training.

The researchers concluded that internal circadian clocks contribute to memory function in a way that is independent of sleep. "In aging humans, one of the big things that happens is the circadian system starts to degrade and break down," biologist Norman F. Ruby, who contributed to the study, said in a press release. "When you get older, of course, a lot of things break down, but if the circadian system is a player in memory function, it might be that the degradation of circadian rhythms in elderly people may contribute to their short-term memory problems."

Original article at:

http://www.sleepfoundation.org/site/apps/nlnet/content2.aspx?c=huIXKjM0IxF&b=4009115&ct=6187673&msource=nae102108&tr=y&auid=4145504

Behavior Modification

2008-10-21T13:17:00.003-04:00

This post was actually a reply to a discussion about ADHD and autism. They wanted to know what we had done that gave us success over the disorder.

Having a 16-year old who has overcome so many obstacles in this life, I gave some background on how I raised my son. It was not easy, by any means. And, I had very little help, except for the internet, which back in 1992-1996, was not the big, beautiful web we have today. Most of what I did is trial and error and whatever worked. Here is my response and take on behavior modification.

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Hello, All,I will try to remember what I did because he is now 16 and it is hard to think back so many years.

When he was a baby, we swaddled. Without it, he would hit the walls of the bassinet every other minute and no one got any sleep. Actually, the first six weeks, he slept in a stroller, swaddled in the basement. Now, before you call me cruel, it was the only place with no light and no noise. We used a baby monitor to know when he "really" woke up.

I learned very early on that he needed a routine or we would have a basketcase on our hands. I went back to work early and had a babysitter. Thing was, I walked in with a schedule of two pages! Everything was listed down there from when he would eat to when he probably made a bowel movement. She thought I was crazy, but after two days, she was amazed that everything I wrote down, complete with times, was accurate. If you followed the schedule, he would be fine. If not, screeching baby at ten o'clock.

His food has to be a certain temperature. The bottle nipples had to be a certain size. Too big and he would choke, too small and you got screeches. He couldn't figure out breast feeding, so I didn't. Of course, he had favorite foods and that was it.Life took on a very ordered tone. He has more autism/ADD than ADHD. Not very hyper, though he rocked and flapped regularly. He hated loud noises, crowds (no birthday parties or movie theaters to this day), bright lights and certain materials.

I am saying all of that to say this. The more I kept to a schedule, the calmer he was and then we could do some work together. Change had to be brought in very slowly. Everything had to be introduced. Foods, people, places, school, toys, holidays, etc. For example, a new person was never just brought into the room. He had to hear their voice somewhere in the house and we would wait to see if he would get curious. Most times, not. When he was around 5, it took him a year to speak directly to my best friend who was over almost every day.

As for language, he started talking around 12 months and then stopped. He didn't use regular language again until school. He made up his own language and used sounds. I didn't care what it was, it was communication and we responded. We called it Andrewisms. He still does it to this day, creating language. An old one was Fuf-fuf, it meant cartoons. We figured out later that I kept calling silly cartoons "fluff" and he made up the word to use when he wanted to watch them. Today, we have "linner." It means the meal between lunch and dinner, like brunch is the meal between breakfast and lunch. Whatever it is, we use it.

I am sorry this is long, but I feel very strongly about this. We hardly had any help. I once had a director of an autism center ask me how we taught my son humor. I told her, we laugh a lot and love comics, cartoons and jokes. If he didn't get it, we explained it. We even taught him what laughter sounded like. After many years (like around 10 years) he finally understood. The first time he laughed out loud, I cried. Most of his childhood, he hardly even smiled. Now, all his teachers remark about his cynical, sardonic wit. It is not a "monkey," but his own take on what we taught. EVERYTHING he does today, came that way. As he got better, I built in change and flexibility. Now, at 16, he can accept change on a dime; something almost miraculous in the world of autism.

I don't want anyone to get the idea it was easy. Many times homework was finally finished at 10pm. Or just not finished. He didn't get an aide in school until 5th grade and they promptly took it away in high school. He has the smallest amount of accomodations and hardly any speech and language help. He hardly ever get an A in a class, but his Cs are golden to me. We hardly ever went anywhere, including church. I didn't see the inside of a movie theater for nearly 12 years. And, he was not with me.

I am thoroughly with McDannells on this. We have to teach these kids to be confident in themselves and that they will find a place in this world. Excuses don't matter to the world at all.

Other than that, I give this piece of advice. Do what works. If you have to empty the cupboards and teach fractions using bells, whistles, every measuring cup and spoon, and food coloring (my personal favorite!), do it.

And don't make a monkey out of anyone. I would rather my son be eclectic and innovative than a drugged zombie working in a factory somewhere.

A Year in a Nutshell

2008-10-20T14:08:00.002-04:00

I thought I wanted to slowly go through this last year, but I find that my mind REALLY doesn't want to remember it.

Between the ignorant and cold doctors, the many fruitless visits to emergency rooms, the insomnia that ensued because I was just so afraid to leave him alone, it is too difficult to look back and write it all down. Probably, I will make mention of an old event here and there as I write further, but to drag it all out and relive it, is so painful. Let's just do the abridged version.

My son went from a rambunctious, devil-make-care child to a cautious, shy, anxious little giant. I say giant, because he stands now at 5'8", 199 lbs and is just 12. He is considered obese now, but was always larger than his peers. The obesity has set in because he is now exercise intolerant, and cannot stand more than an hour of any movement without paying for it later. We have so many things here for him to use for exercise, but causing him to use up all his energy stores in 20-30 minutes of exercise means you have a sick child for the rest of the night and possibly the next day. Needless to say, we don't do that.

I do want to mention all the doctors we went through. Four neurologists, two cardiologists, two pediatricians (our last one has just gone AWOL on us, not returning phone calls or faxes since March 5th). I could write a whole blogpost on doctors, but I have learned to tone down the heat. At one point, I hated them all. But I realize that doctors are human and why did I think all the beautiful, compassionate humans went into the medical field? There are good ones and bad ones. We saw our share of both. For now, our medical team consists of a developmental pediatrician (who first correctly diagnosed him), an ENT who's office staff is fabulous (for the sleep apnea), one GI doctor (for gastro issues) and what has to be the best therapist in the world, who from the beginning, never doubted us when we said this was not a psychological issue.

We see the psychiatrist today. My son has a great deal of anxiety about becoming a chronically ill person. I am hoping to be able to help him navigate through these tender years and still retain some confidence and self-reliance. I am hoping the psych will come on board, but he started out combative. I pushed right back. It is amazing how someone who never met you before attempts to tell you all about yourself after only 10 minutes of dialogue. I am going prepared with printouts of my son's disorder and see what happens.

The end result of the year was that my son never made it to middle school. Not really. He only made four days his first two weeks and had to be brought home. He is attempting to return part-time now, but since August 2007, he has been homeschooled (by tired ole me!) and then tutored by a teacher through our County. Both attempts have produced very little by way of educational advancement. I was too close to the situation (I swung between being overly cautious and Mommie Dearest) and the tutor needed to return to the sixties. LOL! We both did a banged-up job of trying to get information into a brain now permanently changed by OSA and Dysautonomia. I can see the humor in the situation now, but at the time, it was far from funny.

Imagine trying to get a brain deprived of oxygen day and night, sedated on seizure meds (he was misdiagnosed with seizure disorder of the temporal lobe in the beginning) to remember the ancient map of Greece and Sparta, the agricultureal pursuits of ancient Mayans, and why a penny turned green when exposed to vinegar! It was a hoot! Everyday was an adventure. Who needed the Army to be challenged? I am actually happy that we are attempting to return him to school. Yes, I still nailbite, but at least I am not trying to explain exponents and least common factors anymore! How I do appreciate teachers after being through all this!

There is an old song that says, "What a difference a day makes." My line is "what a difference a year makes." We have thoroughly changed within this year. No more taking life for granted or sitting back and waiting for things to happen. Even though I have been disabled since 2003, I still operated in my old life. I had 1-,3-,5- year plans. I was a methodical, pace yourself kind of person. I had been on the internet for 20 years and didn't embrace half of it.

Now that is all changed. I am writing again (this crazy blog calls to me!), I am taking pictures again (school major was photography), and I am about to buy a vidcam. Why? Because I don't want my son to miss a single opportunity to enjoy what he has left.

One quick story from this year might explain it. After taking my son to a neuropsych evaluation last year, the evaluator came to me, saddened and obviously concerned. She questioned me over and over about my son's habits and routines. Then she began to give the bad news. My son's memory was shot. He literally did not have much left of his short-term memory and his long-term memory would be sketchy. She likened his brain to a polaroid camera that took shot after shot, but then threw the pictures away as the next one came out. The analogy was stark and very cold.

At first I was devastated. How can anyone learn if they can't remember? Even visual or audio cues did not bring recognition. The therapist began to compare him to Alzheimer's and traumatic brain injury patients. Then I decided to do something. After raising an autistic child, I knew that repetition does help. I decided to fill all the moments. Continually fill them with memories, conversation, laughter and sensations. Pictures are left out of albums and placed in huge frames to be seen at a glance. Music is played over and over again (I actually like that sometimes). Certain sayings are repeated especially if it was funny. I bought him an audio recorder to record his thoughts, jokes, anything he wants to hear again and again. And when the vidcam comes, we will make gigabytes of memories to be replayed as often as he likes.

If his brain throws the memories away, I will be there to pick them up.

And keep them safe.

Sleep Apnea and Diabetes Link - Important!

2008-10-19T08:01:00.002-04:00

I try to stay objective when I put articles in here. I realize and hope others know that you must look at your individual situation and always consult your doctor. But, in this case, this article is like looking at my sister and it is hard to maintain objectivity.

My sis, at 33, has been obese most of her life. She also has had sleep issues since she was a child. When she has the series of small strokes several months ago, it was a major shock to all of us. But when the diagnosis of diabetes came back, it mirrored our own mother.

What NEVER was discussed was the possibility that diabetes and sleep apnea were related. In our personal family history, I believe it is so. Both my mother and my sister snored terribly. I grew up with hearing the pauses in the breathing. I was so accustomed to them, that I didn't even think anything of it when my own son did so in his crib.

To fastforward so many years, it is difficult to possibly believe that maybe my mother needed a CPAP machine. She died very young at 62, after suffering with end-stage renal failure for nearly 10 years, the final complication in her nearly 30 year battle with diabetes. A battle she never seemed to be winning, only slowly and painfully losing.

My sister has been diagnosed with moderate-to-severe sleep apnea and my son has moderate sleep apnea. Both struggle with obesity and for now, my son's sugar levels are good, though his autonomic nervous system is shot.

My sister recently did a test of her sugar before she went to bed (a reading of 97) and when she awakened (a higher and not good reading of 130). With no food in between, her sugar level could only be a hormonal response to lack of oxygen.

Sorry this intro is long, but I am adamant about this.

Sleep apnea is a poorly controlled problem that is contributing to one of our society's biggest health crises: diabetes. It is destroying lives and ruining childhoods. Please do not take it lightly at all if you do not sleep well. Whether it is sleep apnea or some other sleep disorder, PLEASE seek help from a qualified sleep professional, preferably one from a sleep center in a hospital.

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Sleep apnea and diabetes could be linked

By Barbara Quinn
The Monterey County Herald
Page 18 2008-10-19 01:04 AM
Associated Press

We hadn't done this before. Two of us - one from our hospital's sleep center and the other from our diabetes program - were both listening intently to a teleconference on sleep apnea and diabetes. What does one have to do with the other? Perhaps plenty, according to research in both fields.

Obstructive sleep apnea, or OSA, is characterized by disruptions in sleep caused by disordered breathing, explained sleep medicine physician Dr. Angela Hospenthal from the University of Texas Science Center. Symptoms include: "heroic snoring" (the kind that can be heard through closed doors), waking up choking or gasping or with a dry mouth or sore throat, and being excessively tired during the day.

How do you know you have it? Spend the night in a sleep lab hooked up to electrodes to measure how you breathe (or not). Lots of physiological things happen while sleep disordered people snore, said Hospenthal. Oxygen and blood flow are reduced, blood pressures rises and heart irregularities occur. All in all, it's not a very restful sleep. And during waking hours, people with sleep apnea have more trouble concentrating and remembering things. My sleep center companion nodded knowingly.

And what does that have to do with diabetes? Sleep apnea and diabetes are "linked" in several ways, we were told:

Central obesity - excess weight around the middle - is a risk for diabetes as well as sleep apnea. "Fat cells in the upper body (apple shapes) have different health effects than fat cells in the hips and thighs," Hospenthal noted.

Insulin resistance syndrome - a condition common in people with diabetes - is also commonly found in people with OSA. When we don't breathe deeply enough, it increases hormones in the body that raise blood sugar levels and impair the body's ability to process excess blood sugar. We both took a deep breath.

Neuropathy - nerve damage common in people with diabetes - is also prevalent in people with obstructive sleep apnea, although we don't exactly know why.

So, sleep apnea may lead to diabetes and diabetes may lead to sleep apnea. And interestingly, the treatment of one condition may improve the outcome of the other. For example, one effective treatment for sleep apnea - Continuous Positive Airway Pressure, or CPAP - may also help control blood sugar levels by helping get more oxygen to the body.
These strategies may help prevent or treat sleep problems and/or diabetes:

Lose excess weight. Even a modest weight loss of 10 percent to 15 percent can decrease the risk for sleep disorders as well as diabetes.

Avoid sleeping on your back. It blocks air flow which aggravates sleep disorders and may disrupt the body?s ability to process blood sugar.

Go to bed! Sleep deprivation is bad for your heart, your mind, your blood pressure and your blood sugars. Most adults require 6 hours to 7 hours of sleep a night.

Avoid alcohol, narcotics or other medications at bedtime that may disrupt your sleep.

My teleconference companion and I exchanged phone numbers and promised to keep in touch.

Original Site location:

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