A Mind of My Own
Posted by Gail | Filed under Autism
Chapter Two — A Strong Silent Boy (Part 2)
Once I discovered the holes in Malcolm’s language I set to work. For the category word problem, I cut out hundreds and hundreds of little pictures and played the game of putting them into categories. Boats, cars, planes helicopters, skidoos, bicycles, tricycles, and everything else I could find a picture of fell under “transportation.” Horses, dogs, cats, birds, cows, chickens, fish, lizards and every other animal I could find fell under “animals.” Once we had them as animals, I sub-divided them into new categories like farm animals, wild animals and pets.
For the pronoun problem I got lucky. One of Malcolm’s favourite books was “Green Eggs and Ham.” We not only read the book, I bought him a video of the book and a cassette rendition. When he listened to the actors playing the two parts change from I to Me to You, he got it. For the He/She problem, there was a book by the Berensteins called “The He She Book.” We read it a couple of thousand times and combined that with constant correction; I’d use an appalled voice and vivid expression and say, “Malcolm, is Tanya a boy or a girl?” He’d say “girl,” and I’d say, “So why are you calling her ‘he?’” We’d laugh together and eventually he got it.
While it sounds as if I was very matter-of-fact about solving Malcolm’s communication problems, it didn’t come easily. When the language pathologist, Nolene, told me that Malcolm’s language was so significantly delayed, I just about swallowed my tongue. How could that be? We were an extremely verbal household. We read books. We talked constantly. What was I doing wrong? While it’s natural to look to see what you’ve been doing wrong, you aren’t the one to blame. But you are the one to fix the problems. And it seems I was fixing problems even before I knew I had them.
One of the things both Nolene and Mary (the development psychologist) remarked on when they diagnosed Malcolm was that he was remarkably well adjusted for a child with his level of disability. He should have been throwing tantrums. He should have been angry. But he wasn’t. He was a happy, if sometimes afraid, little boy who loved his mommy to bits (“two bits”, in our house). And after watching us interact for quite some time (the testing took four days) they knew why. I had adjusted to Malcolm in a variety of ways that made him think he was just fine. I’d eliminated most pronouns when I spoke to him. It was, “Malcolm, go and get Malcolm’s shoes and bring them to Mommy.” I’d somehow figured out that it wasn’t stupidity that had him answer, “I don’t know” to virtually all of my direct questions and started using the “wrong answer” tactic to get him to correct me with the right answer. While that kept Malcolm’s ego in tact, I wasn’t really helping to solve the problem. Once I knew what the problems were, I set about solving them with the fierce attention of an Aspie (which is how some people with AS refer to themselves).
One of the best things I did as a mother of an Asperger’s child was read everything I could get my hands on. When I read Temple Grandin’s book, “Animals in Translation,” I was blown away. Here was a woman with Asperger’s Syndrome who was not only successful (giving me great hope for Malcolm) but also remarkably articulate about her Asperger’s. She described her thought process as “thinking in pictures.” For her to recall or learn a concept like “power,” she would have to visualize a “power line.” She wanted everyone to know that people with autism aren’t broken and don’t have to be fixed. They simply think and learn differently. And echolalia is a symptom of the way the brain of a person with Asperger’s operates.
There’s a lot about an Asperger’s brain that bodes well for Malcolm’s success in the future. He has an excellent rote memory for both visual and auditory information. He’s fabulous at tasks demanding visual-spatial judgment and visual-spatial pattern recognition. He’s a math whiz and is gifted musically. And he has a warm and loving heart. Contrary to what is often said about autistic children being distant and emotionally disconnected, I haven’t found that with my son. He does make strange with people he doesn’t know. But the people he loves, he loves big. And he couldn’t be more affectionate. I’m very proud of him, of how hard he works, and of how thoughtful he is.
Perhaps the single biggest challenge parents of an Asperger’s child face is the need to balance helping them become adept at dealing with the world with accepting who they are as individuals. That means figuring out what’s “Malcolm” versus what’s “Asperger’s” when it comes to measuring his reactions or dealing with his idiosyncrasies. I’m always surprised when I read a book or article and discover that Malcolm’s love of trains or reaction to squishy food is typical of an Asperger’s child. So that’s the Asperger’s, I say to myself. Hmmm. So where does the Asperger’s end and Malcolm begin? It’s a puzzle I’m always working at. It’s a good thing I like puzzles.
This was one of the issues both Nolene and Mary had when it came to giving me a diagnosis for Malcolm. Mary suggested we steer clear of labeling him and just think of him as a unique child. I had no problem with thinking of him as unique – our house is filled with unique people. In our house, “weird” is a compliment and “normal” is an insult. I don’t quite know how it got to be that way other than the fact that all of us – my (now) ex-husband, my step-son and step-daughter, my daughter, Malcolm, and me – we’re all weird. We have oddities and absurdities that we each tolerate in the other simply because we know just how weird we are.
I was determined to get a diagnosis for Malcolm, mostly because I sensed that it would give me the ammunition I would later need to have his very unique needs accommodated through school. And I was dead right. The diagnosis, rather than something to be afraid of (as many parents think) has been the key to opening doors from which Malcolm has greatly benefited.
As a mom working with a child whose needs are not typical (Is there such a thing as a typical child?) I strive to do enough to make Malcolm comfortable in the world without remaking who he is. Yes, he is different. But then so is just about every interesting person I’ve ever met.
I don’t want to make Malcolm conform. I don’t want to make him fit in. I want to help him find his own place so that he doesn’t always feel he is an outsider. And I want him to feel great about who he is. So I work hard at it.
I listen to his umpteen stories about chess moves with enthusiasm and I ask questions to show I’m interested. I tell him how smart he is, without being soppy about it. Most of all, I tell the truth: yes, you have difficulty with language, but look how smart you are at math and music. (Asperger’s kids hate lies and if they catch you in one they will hold it against you for a long time – maybe forever.)
Being truthful sometimes means I have to say things that could hurt his feelings – delicate as they are. So I work hard at framing what I say in a way that minimizes his pain and maximizes the results I’m trying to achieve.
When I couldn’t get Malcolm to brush his hair every day – he just wouldn’t do it because he was used to me doing it for him and I’d stopped – I said, “You know, Malcolm, ten year old boys brush their own hair and it’s time for you to learn how.” I wasn’t trying to diminish him, just point out a fact of life. When he retorted with, “I can’t do that, I have Asperger’s Syndrome,” you could have bowled me over with a feather. It was the last thing I expected him to say,
“Well, buddy,” I said, “Asperger’s Syndrome may explain your difficulty with language or the fact that you don’t cope very well with change, but it doesn’t have much to do with you not brushing your hair. Here’s the hairbrush, brush it!”
Since this was the first time Malcolm had even acknowledged his Asperger’s, I was of two minds. On the one hand I was thinking, “That little bugger!” On the other I was rejoicing because he was opening the door for us to have further conversations about Asperger’s, how he was dealing with it, how he felt about it and how we would proceed as he grew older.