Present word count of WIP:  53,057

I came across an old email sent to a PTO colleague toward the end of Jason’s First Grade year. Reading it again these many years later still transported me back to the mindset of that first year after his diagnosis:

“Two days ago when I was watching Jason on the playground I wasn’t stressed so much as depressed and kind of lost in thought. He seems so normal at times and then I catch him so obviously unlike most of the other kids…playing by himself, in his own world. After he went in to see the private psychologist yesterday, Allison asked me if I wasn’t disturbed or unhappy that he has Asperger’s syndrome…I said that, certainly, for the first few months it was depressing (without explaining why) but that I’d come to grips with it. In truth, I have moments (and probably always will) when it’s a depressing, discouraging, and unsettling realization. Anyway, the moments pass. Enough venting.

My stress lately hasn’t been so much PTO but, rather, getting my kids to all their various appointments with doctors, Jason’s psychologist, dentists, the orthodontist, etc. I probably seemed stressed the other day because I had to get Jason to his appointment with Ms. Bouton (Even though she was his Kindergarten teacher and he’s now in First Grade, she’s graciously offered to help him twice a week after school with his math, since he gets along so much better with her than with the Resource Specialist, Dr. Mahdavi…Ms. Bouton has a nephew with Autism and her brother-in-law’s niece has Asperger’s), and then hustle back to meet with Dr. Mahdavi and the District’s Adaptive PE Specialist concerning the results of her assessment with Jason. Bottom line: TOO MANY APPOINTMENTS AND MEETINGS! I’m just not used to it…but I’d better get used to it because, in a week or two, Jason will get started on Occupational Therapy twice a week for six weeks or so. Anyway, like I said before, enough venting already!”

No, it wasn’t easy, but it wasn’t nearly as difficult as many parents with kids on the autistic spectrum have it. I recall one mother at our school who had triplets, one of whom had pretty severe autism. She ended up having to institutionalize him after her divorce because by middle school he was simply too big for her to handle when he got violent.

I certainly felt blessed when it came to Jason’s temperament.

Now, on with the list of his differences in Motor Skills and Movement, followed by those in Social Interaction.

As with speech, Jason was delayed in both fine and gross motor skill development. He showed no interest in sports (I signed him up for T-ball and basketball and even gymnastics, since he was so small…but he didn’t seem to fit in or enjoy any of it) and hardly ever wants to go outside to play. That latter characteristic might mostly have been chalked up to his inordinate fear of dogs, but by his first IEP he seemed to be beginning to get over that. (Actually, he’s never really gotten over his fear of dogs even today.)

Motor Skills and Movement

•  He’s only now getting comfortable using scissors to cut things up (this after two and a half years of pre-school, plus Kindergarten).
• As a toddler, he had a real fear of stepping up or down off a curb (even when holding on to my hand). The occupational therapy helped here, and he will now go up and down an escalator (holding my hand).
• He’s been described by my father as having a strange gait, walking like Hercule Poirot in the PBS Masterpiece Theatre series (whatever that looks like).
• Halfway through Kindergarten he was finally able to ride the big trikes…but he shows no interest in his own little bike with training wheels. He is showing an interest, however, in his sister’s new scooter. (That didn’t last.)
• He can’t pump himself on the swings and, when pushed, only wants to go so high.
• He still needs help dressing himself (he can’t do the zipper, some buttons, or put on his own socks).
• He avoids slides at all costs, unless they’re small slides he’s familiar with.
• He doesn’t seem to have the strength to build with Legos himself…but we’re working on it.
• He used to rock a lot while eating at the table until he had a bad fall. He also rocked whenever we held him in our lap. He still does when he’s bored or antsy (like at church).
• He used to rub his thumb and index finger together softly while he read or listened to stories or sat at the table…he doesn’t anymore.
• When he’s not feeling well or worried about something, he’ll sit or lie down and softly stroke his bare stomach (he was doing this today after school).

Jason with one of his older RCT friends

Socially, Jason at age 6 was very affectionate and loving with those he was close to (mainly his immediate family and Grandma–my mother) and could become so very quickly with others he met (like Amanda, a 14-year-old at RCT, the children’s theatre group)…generally, however, he didn’t have any real friends among his peers either at school or church.

Social Interaction

•  Kids in his class at school are nice to him and some really go overboard to help him out in class (with cutting and gluing, etc.), but he doesn’t seem to really make a personal connection with them. I thought he was becoming friends with Drew, particularly because they started out taking swim lessons together last summer, but nothing’s really ever come of it. The only time he wanted to go to Drew’s house was because he wanted to see one of his toys. As I’ve thought about it, most of his requests to socialize seem to be geared toward getting an opportunity to play with a particular toy or item.
• Even when he’s playing with his cousins, he’s playing more with the toys than with the cousins.
• He seems to socialize better with adults or older kids or younger kids.
• Generally, his social behavior seems immature for his age.
• He’s content to play by himself with his toys, his Gameboy, or on the computer. He’ll go upstairs and read or play for hours without complaining about being bored. Unlike his sister, he never complains of being bored.
• If he takes a dislike to someone, adult or child, he shows it readily with off-putting, rude behavior (often to the point of embarrassing us).
• In fact, he seems to have developed very little tact despite our best efforts to educate him to be polite. He just says what he thinks.
• He also doesn’t seem to be able to clue in to certain social graces. Hardly a day goes by when I pick him up after school that someone will say “Bye” to him on our way out to the parking lot and he doesn’t respond. Invariably, I have to tell him to say “Bye” back. There are a few people he goes out of his way to greet or say “Bye” to (like his teacher, Ms. Rios), but he’s oblivious to most.
• If the teasing by others is subtle, he doesn’t get it and ends up laughing at himself just because the other person’s laughing. I guess that’s what he’s supposed to do, too.

Jason playing with his cousin, Cole

Tomorrow, I’ll post about his Obsessions/Preoccupations and his unusual Routines. Some of you have expressed a desire to know how he’s changed (or not) over the years. I promise to conclude by covering that development by the end of the month.

Originally posted 2012-04-24 18:53:18.