Category Archives: Autism

Playground Battles

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I’m all jumpy right now cause Chris told me a story about Justin getting picked on at the school drop-off this morning. Apparently a couple kids from his class pushed him down, and every time he tried to get up they would grab his hood and push him down again. This went on and on and on, so finally Chris intervened (and one of the other kids’ moms had a word with him too). I guess Justin didn’t seem particularly upset, but when Chris asked how this made him feel he said it made him angry. But he didn’t act angry, and that’s part of the problem: he needs to learn what he can do to show kids he doesn’t like what they’re doing, and he needs to understand that “playing” with other kids doesn’t have to mean being their punching bag.

I’ve always struggled with how to handle situations like this, cause I don’t feel comfortable disciplining someone else’s kid and I’m not really sure what my role should be. I don’t want to be the overprotective mom who never lets her kids experience real life, but I also don’t want Justin to become a victim because he doesn’t really understand the group dynamic — when he gets to school and the kids yell “Justin!” and run off to play, are they happy to see him because they like him, or because he’s an easy target? He would never know the difference, and that scares me. Argh.

Journey to the World of Make Believe

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A few of the defining features of Asperger’s are mind-blindness (the inability to predict or understand someone else’s thoughts and feelings), rigidity of thought and an extremely literal interpretation of language, so pretend play has generally been almost impossible for Justin. When he first started his autism program, his behavior consultant held up a blue pen and asked him to imagine that it was something else: a stick, or a wand, or whatever. No go. Then she asked him to just pretend that it was a red pen. He got more and more agitated and insisted that it was a blue pen, it was clearly a blue pen, and it could never be anything else. Sigh.

So you can imagine how amazing it is to see Justin doing all kinds of pretending with Brayden these days. When we go to the playground, they each pretend to be cars racing in the World Grand Prix from Cars 2. They use the sand from the sandbox to build new roads for their cars, and then they race around on them. One of their favorite games is when we all pretend to be different dinosaurs, and we stomp around the living room roaring at each other. This kind of stuff is par for the course with most kids, but it’s a major step forward for a kid who couldn’t conceive a different color for the pen.

This week he astounded us by gathering all his stuffed animals, arranging them in a row in the living room, and announcing that they were his “audience” and he was going to perform a concert for us. But first everyone needed a “ticket”, so he handed out felt markers to us and the rest of the spectators. We turned on some music and watched as he (and his brother, who can’t tolerate being left out of anything) danced around the room. I couldn’t stop smiling. Awesome.

 

Shedding Some Light on Asperger’s

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Justin’s Asperger’s has always been an open secret at his school — I don’t shy away from talking about it, but I don’t advertise it either. Like most parents, we wanted him to just blend in as much as possible. I know some parents were aware of it and I’m sure the grapevine has worked its magic, but I finally decided to get everyone on the same page. So, last week I sent this letter to all the parents in Justin’s kindergarten class:

“Dear parents:

I want to take this opportunity to explain a condition Justin has that affects the way he understands other people, talks with other people, and acts with other people.

As you may be aware, Justin has Asperger’s Syndrome. It’s the highest functioning end of the autism spectrum, which means that people with this syndrome can function pretty well in society. Like all forms of autism, Asperger’s includes difficulties with communication and social skills. People with Asperger’s have good grammatical skills and an advanced vocabulary, but they are very literal and have trouble using language in a social context.

People with Asperger’s have normal or high intelligence, but they have a hard time talking to and fitting in with other people. As children, they need special help at home and school to learn social behavior.

Some things that are difficult for Justin are:

– Reading body language and understanding other people’s emotions
– Understanding the unwritten rules of social nuance — he doesn’t always know how he’s supposed to act in new situations, and this creates anxiety for him
– Knowing when someone is joking — he generally doesn’t understand irony, sarcasm or slang, and will take everything very literally
– Transitioning from one task to the next — he sometimes gets “stuck” on a favorite activity

Some of Justin’s strengths are:

– Seeing and remembering details that other people miss
– Reading, printing and spelling
– Using computers

Justin loves playing with friends, but does require a little extra support at times. I would be happy to come along on any play dates to help out. I would also be happy to answer any questions you or your child have about Asperger’s and how it affects the way Justin interacts with people.

Thanks very much for your understanding.”

The main reason I finally decided to explain all this is because we’re now getting to the point where parents often aren’t involved in play dates, and I don’t think Justin’s ready to be dropped off at someone’s house with no support. He just has a few too many quirks that not everyone would understand. Or maybe I’m just being overprotective? I don’t want people to look at him differently because he has a diagnosed condition, but I also don’t want them to think he’s rude or inconsiderate because he misread someone’s facial expression or didn’t realize someone was kidding.

This parenting thing is tough. Sigh…

Attitude Adjustment

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Justin’s attitude (and thus my temper) have both improved dramatically over the last couple days. I finally talked to his teachers and told them to start letting him go to the special needs bathroom instead of making him go into the regular boys washroom — he’s way too anxious to use a restroom where no adults are allowed, and which probably isn’t in the most pristine state. So he’s been holding it until he gets home at lunch, which obviously isn’t ideal, and he had a bit of an accident this week that made him really upset. So anyway, now that he’s allowed to go into the other bathroom, where he’s all by himself, he’s been doing much better. Whew.

We also took some advice from his behavior consultant and wrote out a cheat sheet for him that he can look at whenever he’s playing video games — it basically says “When I start to get anxious while playing a game, here are some things I can do” and then it lists taking a deep breath, trying again, playing a different game or turning it off. None of this is news to him, as we have explained it over and over again, but we’ve never actually written it out for him before, and the consultant reminded us that he processes language much better when he can read it as opposed to when he hears it. It seems to be working, thank the gods.

New Challenges

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He’s doing excellently well at school, at his autism program and at gymnastics, but Justin has been an absolute beast at home this week, and I wish we could figure out why. It’s possible he’s coming down with something, I guess, and I’m kind of hoping that’s it, cause I’d rather not face the possibility that this is a power struggle that will go on for some time. It’s convenient to blame everything on Asperger’s, but we have to constantly remind ourselves that he’s still a five-year-old boy, and he will behave like one. Sigh.

I turned 34 a few days ago and had the rather depressing thought that when my mother was my age she was going back to school and getting ready to rejoin the workforce, whereas the most intellectually stimulating thing I do these days is watch Jeopardy. Of course, when she was 34 her youngest child was already nine years old, and my kids are still pretty young, but I do wonder if I’m going to have any marketable skills left by the time I’m ready to look for a job. I’ve never had much confidence in my skills, even when I was working (I always felt like I was lucky to get the job I had, and didn’t know how I’d ever find another), but now that I’m almost six years removed from that world it seems like a distant dream. I knew what I was signing up for with this motherhood thing, and I’m happy with my choice, but it won’t be easy to sell myself to an employer someday.

Good News

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Justin has made incredible progress in the last few months: his conversational skills have vastly improved, he’s much more confident socially, and the anxiety that used to paralyze him has virtually disappeared. Even his behavior interventionists can’t get over how far he’s come. It makes me want to weep when I remember what a mess he was last summer. I’ll never know if it was the autism program that made the most difference, or if it was going to kindergarten, or even if he just grew into some skills as he got a bit older, but it doesn’t matter. He’s got it together now, and I feel so blessed.

More good news: the school has finally acknowledged that Justin is a super smart cookie, and they’re now working on getting him a more challenging program. At first I was told they don’t really do enrichment stuff at the kindergarten level, plus they had their hands full with Justin’s social issues. But there’s a new resource teacher now who seems to recognize that Justin is on the verge of tuning out due to boredom, and now that his social skills are so much better they’re able to focus on enriching his mind. I can’t begin to explain how excited I am about this. My son rocks!

Stream of Consciousness

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It’s so cool to peek inside Justin’s head. I just had to share this example of the notes he’s been keeping on his iPod:

“It’s Friday And New Year’s Eve Is A Spechail Day My Grandparents Are Staying We Left A Present For Auntie Tanya We Opened The Other Presents My Grandparents Were Not Here Christmas Day I Had My Field Trip To My Puppet Show And My Vision Screening At Kindergarten Us And The Afternoon Class Went Up On The Stage For My Christmas Concert I Was Sick For Sharing On Teusday On November I Had My Other Field Trip On A School Bus To The Hospital I Saw Megan To Take Her Home Here And Kurtis To Kindergarten My Parents Had There Christmas Party On December 11 While We Were In Bed During Night Time Not Quiet Time I Remembered My Rules For Quiet Time No Talking I Never Talk In Bed No Going Across The Bed I Never Go Across Beds No Standing I don’t Stand On Someone Elses Bed In There Bedrooms My Parents Never Ask My Grandparents It’s Okay”

OK, so every word is capitalized and there’s an almost complete lack of punctation, but considering we thought he was just typing out the names of the kids in his class, this is amazing. I don’t fully understand why he does so much better with written language than verbal stuff (that must just be the way he processes things) but it’s really neat to get a sense of what’s been going through his mind. Good stuff.

Turning the Tide

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He’s made a lot of progress, but Justin has had some behavioral issues lately — particularly the way he’s been completely obsessed (I mean scary obsessed) with writing out the names of everyone in the afternoon kindergarten class, over and over and over and over. It’s especially concerning cause he’s in the morning class and therefore these are kids he doesn’t even know; he simply reads their names on the wall in his classroom. That’s all he was doing with his spare time, to the point that I had to hide the pens in the office (he was scribbling on blank cheques after running out of scrap paper). His behavior consultant tells us that writing out those names is Justin’s way of calming himself, which is fine, but he needs other coping techniques too. So we’ve been redirecting him to other activities (which is no small feat considering he types out names on the computer, makes names out of Play-Doh, even uses his own finger to write on the carpet), but then his anxiety goes up and he starts having toileting accidents and just generally bouncing off the walls. Argh.

So what did we do? We made a rule that there’s no writing allowed while the TV is on (Aspies really respect rules), we’re getting him engaged in really physical activities a few times a day (cause burning off that “autism energy,” as I call it, is very important), we’re making more effort to sit with him when he does his activity books to get him to follow the directions instead of just covering the pages with names (it works, but it’s time-consuming) and I put a new sign in his room with a list of rules for quiet time (he loves having a list that tells him exactly what he’s supposed to do). He’s had a much better weekend, but man, I’m exhausted. I would not have believed how much energy it takes to keep him on track. Wow.

Food For Thought

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I just had to share this joke I read in a book called House Rules, by Jodi Picoult, which focuses on a teenager with Asperger’s:

A guy is flying in a hot-air balloon and he’s lost. He lowers himself over a cornfield and calls out to a woman. “Can you tell me where I am and where I’m headed?”

“Sure,” this woman says. “You are at 41 degrees, 2 minutes, and 14 seconds north, 144 degrees, 4 minutes, 19 seconds east; you’re at an altitude of 762 meters above sea level, and right now you’re hovering, but you were on a vector of 234 degrees at 12 meters per second.”

“Amazing! Thanks! By the way, do you have Asperger’s syndrome?”

“I do!” the woman replies. “How did you know?”

“Because everything you said is true, it’s much more detail than I need, and you told me in a way that’s of no use to me at all.”

The woman frowns. “Huh. Are you a psychiatrist?”

“I am,” the man says. “But how the heck could you tell?”

“You don’t know where you are. You don’t know where you’re headed. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you’re in exactly the same spot you were in five minutes ago, but now, somehow, it’s my fault!”

Moving Forward

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I’m really going to miss it when Justin gets too old for his autism program next spring. For one thing, it’s a nice sanity saver, as it gets him out of the house three afternoons a week. More importantly, it’s teaching him to be more confident in social situations. Plus it’s amazing to be able to tell his team about a behavior problem (like how he wants to hug every little girl he sees, and how he constantly lies to me when I ask him simple questions) and have them work out a solution. Every parent should be so lucky. Too bad we have to deal with Brayden’s behavior problems all on our own.

Where the program has made the most difference is in Justin’s anxiety level. Things that used to freak him out are things he now takes in stride. He’s been doing really well at swimming lessons, gymnastics is going great (although that class is specifically for kids on the spectrum, so they’re expecting a few quirks), and he actually wore a Halloween costume (first time ever!) to TWO different parties on the same day and didn’t have a meltdown. He even went trick-or-treating with his dad and his brother. These might sound like insignificant things, but for him they’re major accomplishments. It’s good to see him making progress.

Brayden’s preschool teacher tells me he’s made progress, too. The copying has tapered off and he’s figured out how to play better with the other kids, so that’s good news. He’s also working on speaking more clearly, but that’ll take time. He’s growing up!