At the Fragile X picnic this past weekend, I noticed that my friend's son Timothy, almost 6 years old with Fragile X, was so social. He played catch with the other kids. Just jumped right in and hung out with them. He was such a little joiner!
Zack and AJ, on the other hand, either took off for the park where they could play alone, or stayed glued to their DVD player ignoring everyone and everything going on around them. When Aliza and the other kids started blowing bubbles, AJ did go over to check that out briefly, but he went right back to the movie.
Now, I brought the DVD player specifically because I knew it would keep them busy and entertained. I knew I would be pretty busy greeting everyone and making sure everyone felt welcome and was having fun. I knew that if they had their movies, it would be easier for my mom and dad to keep track of them.
But I so wished they would have played with the other Fragile X and nonFragile X kids, like Timothy did.
My boys' daily routine is different than Timothy's. Zack and AJ get around 6 hours a day of ABA therapy, one on one. Timothy has 4 hours a day of classroom style therapy and spends some time in daycare.
It could also be the fact that Zack and AJ are twins, and have each other to play with and lean on. They night not need other people as much as a singleton might.
I know, I know. I shouldn't compare them.
All I know for sure is, I was jealous that Timothy was out there, participating a little bit in some fun with other kids, and my boys didn't even appear to notice that other kids were there.
Zack is having such a hard time lately. His aggressive behaviors are really intense. We are really feeling the loss of the Tegretol. I am worried about him starting school with this level of anxiety. I wish there was something else I could give him right now, but we can't add any meds if we want to be a part of the clinical trial for Arbaclofen.
I think today I'll try brushing him. I haven't done that in awhile.
Brushing is part of a sensory diet, with a plastic, surgical-type brush that looks like this. --
You rub the brush methodically and briskly over the arms, legs, and back. It is supposed to help them stay calm and focused. For more information on brushing, click here.
Guardianship and Guilt
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