Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Monday, December 28, 2009

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.

Saturday, July 25, 2009

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.

Monday, July 13, 2009

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.

Saturday, June 27, 2009

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.

Tuesday, June 2, 2009

Blog Woes


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.

Saturday, May 23, 2009

Dear Kid Saturday-May 23, 2009







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.

Monday, May 11, 2009

Okay, I Give In


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!

Friday, May 8, 2009

Hunger Strike For Autism?

Create your own banner at mybannermaker.com!

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?

Sunday, May 3, 2009

SAT and Beyond


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."

Monday, April 27, 2009

Fix Your Child!


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.

Friday, April 24, 2009

Roundup for the Unique Family



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!


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!

Tuesday, April 21, 2009

Just a Video Today

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.

Friday, April 17, 2009

Online Loss



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.

Saturday, April 11, 2009

Dear Kid Saturday




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

Friday, April 10, 2009

Five Things To Do When Your Life Hits a Brick Wall


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.

Tuesday, April 7, 2009

Ankles, Schmankles, Part 1


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.

Friday, April 3, 2009

Changing Blog Layout


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.

Wednesday, April 1, 2009

A Lightbulb Goes Off



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.

Saturday, March 28, 2009

A Hard Life Ahead



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.

ImageChef.com

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.

ImageChef.com


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

Tuesday, March 24, 2009

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



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