Last year, we got the diagnosis that confirmed my suspicions concerning TJ’s behavior and mannerisms. Asperger Syndrome. (It doesn’t officially have an apostrophe in there, but so many people use it that I think it’s now accepted colloquially as Asperger’s Syndrome.) He’s on the autism spectrum, albeit the high functioning end. Like any parent of a child with Asperger’s, I read up a lot on the subject, learned as much as I could, and I’m using it to fight for him in the school system.
I’ve also learned a bit more about myself. Namely, that I have Asperger Syndrome, too. I’m not going to seek an official medical diagnosis. I don’t need to be a card-carrying member of the club when I already know the secret handshake. But all of my research done on my son’s behalf… my childhood suddenly made much more sense. My complete lack of fashion sense. How I could never be called graceful, and I always look awkward dancing. My penchant for obsessing over things (often computer-related) annd for ruminating about things that really don’t matter. How I really wanted to do the whole psychology thing – I even got my Master’s degree in it – but I can’t read people with any sort of accuracy. The picky eating. The anxiety. The social awkwardness. And so on…
So here I am, trying to raise my son so that he can have a more normal childhood than I had. No one knew what Asperger Syndrome was when I was growing up. I was just the weird girl with the thick glasses who wore pants with elastic waistbands and participated in the gifted & talented program. I want more for TJ than that.
I’m struggling to teach TJ proper social skills, as all parents of preschoolers do – even the kids who aren’t on the spectrum. Always say please and thank you. Don’t take things out of other people’s hands. Look at people when you’re talking to them. No really… LOOK at people when you’re talking to them, and when they’re talking to you. TJ can stare into your soul sometimes, but other times he’ll absolutely refuse to look at you when you’re talking to him. It’s infuriating. But I’ve started noticing that I look down a lot, or glance nervously around the room when talking to people because I don’t want them to think I’m just staring at them. How can I help TJ with his eye contact issues when I can’t fix my own? TJ always has to be winning at games, too. He threw a fit one day when playing Chutes & Ladders because he was close to the end and got sent back – even though he was still in the lead. I’m trying to get him to accept this sort of thing as part of the game and part of life, but I get really angry when I lose at games, too. It was this sort of thing that pushed me to get top grades all through school. I got mad at myself over an A- on a paper because I should have gotten an A. I hope that TJ’s need to be the best doesn’t cause him as much stress in school as it caused me.
News flash: I’m a loner. It’s strange, because I crave attention approval from everyone. I get very upset if people don’t like me. I love my husband and my son. I love my family and my friends. But most of the time, I really just want to carry out solitary activities. Leave me alone with my Twitter and my computer games and my blogging and my reading materials… and I’ll be great. I know I’m supposed to be encouraging TJ to interact with us more often, not just because it’s therapeutic, but because that’s what families are supposed to do… right? Families should do things together. But most often, we’re all in the same room doing our own solitary activities. When the CFS hasn’t rendered me useless, I’ll try to get up and play with TJ when he asks me to play with him, but I rarely initiate Familial Activity Time. His teachers say he prefers to do his own thing in school sometimes instead of participating with the rest of the class, but what can I say? I can’t blame him for wanting to stick it out alone sometimes.
Picky Eating and Sensory Issues
As parents, we’re supposed to model healthy behaviors for our children. We’re supposed to eat our vegetables so that the kids will eat their vegetables. But you know what? Most vegetables make me gag. To eat a mouthful of beans, I would literally have to choke it down and try not to throw up. I remember trying to convince myself to eat a banana when I was pregnant, because I wanted my little TJ to get better nutrition. I gagged on every bite and had to throw out half of the stupid thing. Textures of foods bother me. I get mad at TJ for not wanting to try different foods, but I won’t do to him what my parents did to me. There’s an epic story they still tell about how I sat in front of a bowl of goulash for three hours as they tried to hold my nose and make me eat it. I remember my mom saying things like, “Stop making yourself gag.” Like I had a choice in the matter. How can I model healthy eating behaviors when I just don’t have them?
We both have sensory issues, too, although his are more pronounced than mine. He can’t stand tags in clothing, but he’ll wear his underwear backwards. There are a lot of things I just won’t clean because of the extreme anxiety I have about touching anything slimy or otherwise unpleasant. Thankfully, TJ’s occupational therapist has gotten him playing with shaving cream, silly putty, and all manners of different textures so he becomes less averse to them. I have a hard time when he wants me to hold something that I find gross, and my exceptionally sensitive sense of smell can make sickness hard for me. The sight and smell of vomit is not just unpleasant for me – it can make me gag and choke down my own vomit. When TJ threw up on me a few years ago, I had to stand stock still while my mom and husband helped wipe me down and strip me so I could jump in the shower – at my mom’s house. When we’re home and TJ throws up, Tom helps me get TJ’s clothes off so I can bathe him and he can clean up the sheets/floor/furniture. If I’m alone when it happens, I can only work on the cleanup for short periods of time before the smell overwhelms me; I don’t want to add to the mess.
Personal Growth Never Ends
As I try to help TJ along this journey, I suppose he is also helping me to grow and understand parts of myself. As my psychiatrist has put it – when we help our kids to be true to themselves, we can help ourselves heal our own childhood traumas. I was never beaten or touched inappropriately – thank God. But little traumas have left scars along the way – getting shunned by the cool kids after I’d befriended them when they were the new kids in class, being taunted for not wearing the right clothes, being force-fed foods that made me gag, being told not to cry or I’d get ruts in my face… I hope that my experience with these things will help TJ avoid the same fate… and maybe help me get some closure on these things that have caused me to be such an anxious adult.
I’m not just raising a kid with Asperger Syndrome. I’m raising a kid… with Asperger Syndrome.
It’s gonna be quite a ride.