Friday, March 12, 2010

What A Year!!!!!!!

Today it has been 1 year since we were initially informed that both Rachel and Simon were on the spectrum. I both remember every detail of that doctor's visit and feel that it went by in a blur. It was me and the kids -- Kevin was at work, Daniel was at nursery school. It was after I went in to see the developmental pediatrician that she informed me that I should have brought someone else with me to watch one of the twins while we discussed the other. Doing that never even occurred to me. I always took the two of them with me wherever I went, and dealt with the insanity that was (and is) the two of them.

I remember sitting there and filling out the M-CHAT on Simon (I had already done that for Rachel online). I previously had an initial meeting with MCITP where the term "autism" was brought up (but not really discussed) and in MY mind, Simon was the one that was believed to be autistic -- Rachel, well, if we were evaluating Simon for autism, it wouldn't hurt to consider whether she needed that level of service -- but in my mind she was speech delayed and nothing more.

The doctor reviewed the information I provided to her for both of them in the M-CHAT and through other measures. She observed their behaviors for a while during the interview. Then she both gently and bluntly told me that they were both on the spectrum.

I was just in disbelief. Simon -- yeah -- I saw it (although that didn't make hearing it any easier). He would flap. He would "stim" (though, at the time, I had NO IDEA what that meant). He would throw tantrums that were totally out of control (more than what would be expected from a 2 year old). He NEEDED a routine (again, more so than would be expected for your typical 2 year old). These are the behaviors that I would think of when I thought of "autism". Rachel -- I saw NONE of these behaviors. At least I thought I saw none of these behaviors. But there were others in her -- perhaps they were just a bit more subtle. Or maybe it was because I fell for the trends that autism affects more boys than girls -- therefore, it couldn't affect HER. But definitely a sign that I had no idea what I was thinking of when it came to the term "autism" and that I was in complete denial about the severity of her issues.

This year has been about education for me, and trying to determine how best to help these two kids, for lack of a better word, "normalize" and be "functional" in any setting. We needed them to develop an interest in communication. We needed them to be able to function in a group setting. We needed them to be able to see and hear and touch and taste and smell things without throwing a fit (or, in Simon's case, threatening to vomit). And there was a laundry list of other things that we needed them to learn to do that neurotypical kids seem to do naturally. All of these things are still a work in progress.

So we are 1 year into a very long journey. We still have a long way to go. The end is no where in sight. I'm not even sure where the "end" of this really is, and therefore, if it's attainable at all. But one never knows what the future holds. Despite what I may complain about in this journal, we have made remarkable progress in the last 365 days. Now we are into our 2nd 365 days, and who knows what this next year will bring.

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