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

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

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?

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

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

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!

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?

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.