Monday, May 30, 2011

Little Things Can Make a BIG Difference


This is the tiny little blue pill that has made a big difference. When my son's doctor prescribed it, she explained that Abilify was not developed as a treatment for autism, but that it seemed to help in some cases. What we were initiating was possibly a series of trial and error, taking a stab in the dark. As she explained, what works and what doesn't is difficult to predict because autistic children simply have a brain chemistry that works differently.

I didn't fully appreciate her explanation or her subsequent elation that we hit the mark so squarely with our first attempt — that is until now.

Last week, after being on the new medication for over 3 weeks, and as planned, I took away the little blue pill. On the very first day, when I picked him up for school, he crashed. I saw it on his face the moment he entered the room. When I asked what was wrong, he wailed — that mournful deep sound he has when he is disappointed beyond control. He explained, he was not able to buy a book he wanted at the book fair. I soothed, he calmed but then a wail welled up again, and again, uncontrollably. He too seemed to realize that it was more than a book. As he said, "I don't know why I feel like I do. I don't know why I can't stop crying. Something's just wrong. I don't feel right."

The next day at school was just as bad. I got a call from the social worker. Without any insight as to the timing of our transition, she had noticed the remarkable change in C.S.'s ability to control his frustration. And of course she reported that he was having a very difficult day. Unable to myself and even though pick-up was in less than two hours, I dispatched my husband to deliver the little blue pill to our son at school right away.

Silver Lining: I most certainly appreciate our success to its fullest now! The little blue pill makes a big difference. It protects my son's happiness. Any mother will tell you how invaluable something like that is. And so, yesterday, the kids and I rode six laps around our neighborhood loop on our bicycles. Vigorous regular exercise is our solution to the weight gain now. As for medication, we'll stick with that little blue pill, thank you!

Monday, May 23, 2011

A Mama on a Mission

During a meeting today discussing marketing strategies, as I preached the need to remain "on message" or essentially to develop a mission statement — I realized, that what PDD and ADD, what these diagnoses have led my family to, is just that — a need for a clear mission statement.

My husband and I began our family as most couples. We eagerly watched as our incredible infants developed into toddlers. We moved forward expecting growth as a matter of course. Even when our son seemed not to understand us, when we realized he communicated almost entirely in silence; when we discovered him sleeping inside the case and beneath his pillow on a regular basis; when he no longer made eye contact with us; we did little more than turn to our friends and family for the typical parenting insights we thought we needed. It was a model that quickly failed.

It was at a breaking point that I left my salaried job. Then, with an ambition I once devoted to my career, I began to focus on their needs and my parenting approach abruptly changed, but not by design, just as a by-product of a desperate decision to change something. I was largely rudderless. Instinctively and over time I guess, I began to focus on them as a unique product, as my small enterprise in need of a competitive advantage. Of course, at the start, this was not my thought at all. At the time, I simply wanted to make myself more available to my children. I intended to support them and fight for them. I might have realized I was "a woman on a mission," true, but it has taken me this long to realize that what I needed was to create that essential ingredient I so often preached to even the smallest start-up businesses — a solid mission statement.

And so, that's my task. Having just realized it, I haven't penned the perfect statement yet. A good one takes a concentrated effort to create. But I think it will include these key ideas:
• make happiness a priority
• develop strategies to reach at least calm when happiness seems lost
• reduce anxiety
• realize how one's behavior, expected or unexpected, affects others
• value others
• practice tolerance
• act, perform and approach problems as a family
• know how to deal effectively with unhappy or disgruntled people

Silver Lining: We are working the problem, we really are. Our determination and focus have turned a bad situation into far far better. But my husband and I recently made the decision to truly commit to these beliefs at a level we have not before. I am glad to have realized that what I really need is to practice what I preach.

Sunday, May 15, 2011

Big Gains

Well, I can't say enough for medication. As I've noted before, 2 teensy mgs have made a big difference around here.

In addition to adding to his general calm, the medication also stimulated C.S.'s appetite — not a bad thing. But surprisingly, C.S. has become self-conscious about his weight gain — he's added 12 pounds since the start of school, so it is fairly significant. I don't think anyone has said anything to him, I know we haven't. Still, he's decided he is on a diet and he's taking his decision seriously — he asked us to buy only turkey bacon and no pork bacon; he checks the calorie count on all food labels; he is constantly commenting on the health benefits or detractions of various foods; and he welcomes our push to move him off training wheels as "his exercise." (He did that too this month. He's 9 years old and is finally off training wheels and riding a big boy bike.)

Since the pounds have come on quickly, it seems 2 mgs is a bit too teensy these days. His anxiety began to creep higher and we were reminded all over again what life used to be like.

And so, we are exploring switching to a new medication. I'm told it tastes HORRIBLE! But C.S. was able to take it, literally. And so, rather than increase his dose of Abilify, we've added a dose of Saphris to it. If we see improvement, then we'll move off the old onto a full dose of the new. We've seen improvements already. A return to the new norm and I can't say enough.

So far, C.S. has been able to handle the death of 2 goldfish, a huge change in routine at home, the tossing of a number of toys — all within one week. This amount of change is unprecedented and it has amazed me.

Silver Lining: If anyone needs to be on a diet, it's me. But right now, I'm enjoying the feeling of a plush and happy family! We're fat and happy and I wouldn't change it for anything!

Tuesday, May 3, 2011

Annual Review

I have a PPT this afternoon for C.S. I'm never quite sure what to expect, exactly what level of vigilance is appropriate.

This I am told, is not one of those critical junctures where we're likely to lose services. The one to be worried about will be the triennial review, 2 years from now, when he prepares to transition to middle school. That is what a friend of mine faced last week. She is an OT. She works with special needs children in the school system and she has so much more means than the typical parent to advocate for her daughter and yet, she left her PPT having lost the services she's convinced her daughter depends upon for success and happiness. I feel for them.

Of course, I started to worry after I spoke to her. I requested my son's reports so that I could review them prior to today's meeting. I was prepared to read up on a new law that apparently was recently enacted and affects who can receive special education. But the speech therapist reassured me that today's meeting will be routine. That I need not worry. There are no psycho-education testing or evaluations to review. Just his progress and a draft IEP. And Mrs. Wall won't be there either, as we had requested.

So, I'm trying not to get anxious about it. But, at the very least, if I can't do anything else, I will always worry. As I look back over this blog of mine, I realize just how constant my advocacy is. How much I deal with every day. This year has made a difference.

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