A Mind of My Own
Posted by Gail | Filed under Autism
Chapter Four: A Matter of Routine (Part 1)
Malcolm, like many other children with Asperger’s Syndrome, often displays an intense, even obsessive, focus on the things he’s interested in, while virtually ignoring everything else. Malcolm’s interests have moved from trains, including Thomas the Tank Engine (for which he knew by heart the dialogue from every video he owned), to the subway lines, to Monopoly and the Game of Life, to chess, to internet games, to the music he has fallen in and out of love with.
While the interests he has might be seen as normal interests in other children, Malcolm’s interest is so intense and so exclusive it is unusual. While he was in his Game of Life stage, he went through three sets of the game. They just kept wearing out. While he was in his train stage, he would list the names of all the trains from the Thomas videos, and all the stations on the subway lines, over and over and we would ride the subway four or five times a week. Miss Sharon, our caregiver, would get on with him at the station east of our home, and get off again at the station west of our house and then walk home from there. It was enough for him sometimes. Other times, he rode the whole line north and south, east and west, because he HAD to see the names of the stations on the walls. Later, he would reproduce those names in order, writing the words in the colours they appeared in on the subway walls. He was three years old.
Writing is a passion, much like drawing for an artist. Malcolm started writing when he was about two years old, and his printing has always been perfect. Perfectionism is a characteristic many Asperger’s children share. Depending on what he was writing, he’d use traditional printing, or “typewriter” letters. He was particularly fond of the “typewriter g.” He still refers to his printing by font name and classification. So he’ll write in “Times Roman” or he might add “italic” to his description.
While his classmates were learning to print in grade one, Malcolm was writing in cursive because Alex was writing in cursive and he had a model. And when he wrote something and it didn’t turn out right, he’d crumble up the paper, toss the page away and start again, sometimes growling his frustration. He couldn’t abide mistakes and would not tolerate imperfection. It was tough to watch.
The perfectionism spilled over into just about everything in his life. Alex was a perfectionist too (I had also been at an early age, but broke myself of it) so I’d had some experience with the frustration it brings. But while I could reason with Alex, pointing out the downsides and redirecting, Malcolm’s language barrier proved to be an additional challenge. I had to be much more hands-off and let him blow off steam. Then I would empathize: “Malcolm, I’m sorry you’re so frustrated with what you’re doing,” all the time hugging him, providing the pressure he needed to feel safe. That empathy alone, the acknowledgment of his feelings, was a major balm. It seems that his inability to express himself and his feelings meant I had even greater responsibility to recognize and acknowledge them. Sometimes I would create a mantra, which when used over several occasions, helped to defuse the anger, frustration, sadness, whatever he was feeling.
Malcolm hated to lose. He hated to lose in a game. He hated to make a mistake in his schoolwork. He hated being bested. It was a huge problem at home, but an even bigger problem at school. Eventually I came up with the mantra, “Sometimes you win, sometimes you lose,” said in a very sing-songy manner (which, of course, is the way of mantras). When he’d express his anger at losing something, I’d haul out the mantra. After a couple or ten employments, I’d start it and he’d finish it off for me. The routine and predictability of the mantra had done the job. His frustration was abated and we could get back to normal more quickly.
May 18, 2012 at 7:16 am
Thanks Gail! Your sharing such personal things about life with Malcolm is an education for me. There is such a lot to learn about those among us who are challenged in the way of Asperger’s. What a great Mom you seem to be.
May 18, 2012 at 7:21 am
I guess Malcolm got his writing skills from you.
Great idea with the mantra, I am glad it worked.
May 18, 2012 at 7:38 am
I find it interesting the types of things that Asperger’s children get obsessed with. Trains is a big one. For one friend’s son it was vacuums especially Dysons. For another it was water hose nozzles. I still remember her going from hardware store to hardware store looking for different types of nozzles in December to put into her little guy’s Christmas stocking. Ah the things we do for love
May 18, 2012 at 7:51 am
than you
May 18, 2012 at 7:51 am
interesting! Like the use of mantra’s in relieving frustration. You don’t have to have asperger’s to use that one.
May 18, 2012 at 8:32 am
I am greatly enjoying this story Gail. Thank you for sharing it with us and Malcolm you are just perfect as you are.
May 18, 2012 at 8:58 am
What I find truly amazing in these children, and many with similar issues (all of mine suffer from varying sorts of generalized anxiety disorder, from severe to moderate on certain things, and levels of OCD as well, which all run genetically in both of our families) are so close to brilliant in general. When you step back and look, the perfectionism itself leads to very early brilliance….writing so early, printing, reading….mine have all exhibited these aspects, the latest being the 2 yr old who has perfected the DSI game to the point of being able to take the cartridges in and out and play the games-yet she can’t read yet. We get comments all the time on how extraordinary it is but, truth be told, it’s normal and what keeps her calm as she is the highest level of rage and tantrums of the 3 so…we do what works. Your son sounds brilliant. Kudos mom. For your empathy.
May 18, 2012 at 9:00 am
Mantras have always helped with my autistic son as well…soothing, sing song, repition in a quiet voice…very calming…
May 18, 2012 at 9:59 am
malcolm has a beautiful brain
May 18, 2012 at 10:09 am
Not Aspergers, but I always prayed that my children would not be brilliant. Often the brilliant just can’t cope, and are often socially disfunctional. I’m a couple steps down, but still not the best socially.
Thanks for sharing your stories with all of us.
May 18, 2012 at 10:13 am
Anyone watch the Show Touch with Kiefer Sutherland. Not to make a comparison to the child. However, I get the same warm feel good emotional response when I watch or read Gails Friday “Mind of My Own” Blog.
You are so strong Gail and not just in the financial world. You have been through so much in your life. Yet you stand there tall and firm as a guiding light for all of us out here in the rough waters searching for the light house of support.
Keep on guiding and we will keep on sailing as best we can.
Don’t give up on us and we will try to live up to what you expect from us.
Hug a family member on this long weekend, tell them Gail believes in them and enjoy the sun and fun.
May 18, 2012 at 10:41 am
My son went through the Thomas phase, now it’s the little rocks he finds in the driveway. He cannot get into the car or pass through/by a driveway without picking up a rock for his collection. My husband is a power engineer and explained the blueprint of a boiler to our son, just once. He can recite and recognize all the parts and gets very mad when his father is looking at a blueprint that is not a boiler because all blueprints have to be boilers. Deep pressure works for him too and I am going to start the mantra at the very next melt down, thanks so much Gail for sharing what works. We had tried tight leggins for a short while but that stopped working. He much prefers to have his bed loaded up with thick, heavy quilts and pillows. There’s practically no room for the boy!
May 18, 2012 at 11:01 am
@Jackfree, I love the show Touch and I get that same warm feeling watching the show and reading about Gail and Malcolm. They both seem to bring that human contact back to life.
May 18, 2012 at 11:48 am
what a very personal slice of your life you share with us. thank you, it’s beautiful.
May 18, 2012 at 12:30 pm
I smiled when I read the mantra. My 8 year old, Andrew (diagnosed ASD) has one that his ERF (educational resource facilitator) gave him to think about when he’s upset when things don’t go quite his way. “You can choose to let it ruin your day, or you can choose to accept it and move on”. He will often repeat it when he gets agitated with a change.
He’ll also use it completely inappropriately, like when our hamster recently died. My other son, age 7, was inconsolable…Andrew went up to him and said “Aaron, I am crying on the inside. You can do one of 2 things: you can choose to let it ruin your day, or you can choose to accept it and move on”. Needless to say, Aaron didn’t find Andrew’s mantra the least bit consoling!
Gosh, I love our kids and all their quirkiness. Thanks for sharing your Malcolm with us, I am enjoying reading about him.
May 18, 2012 at 12:58 pm
My brother has autism and loves ferries (and trains). He discovered youtube and watches ferry videos over and over – he loves them.
Youtube is an amazing place for people with aspergers and autism. Allows for a lot of repetition and they often have the skills to locate videos in their interest area. Ipads in particular are great for these types of kids
May 18, 2012 at 9:42 pm
Our son Brody loves CMT…country music television…and has since he was an infant…he rules the big screen in our living room…in fact we finally put one in the kitchen because that’s our space and the living room is his..lol..whenever people comment on how happy he is we always say it’s because he lives like a KING…LOL..
May 21, 2012 at 7:46 pm
With my daughter it was the planets. She could tell you everything about all of them (how many moons, how long the days were, the distance and location etc). Then it moved on to cats and now she has finally found her outlet in music, playing (so far) 4 instruments (reading music and by ear).
May 21, 2012 at 8:45 pm
so familiar! We used to “practice” losing with my guy. We’d play over and over and practice appropriate responses to losing
May 22, 2012 at 12:35 am
Hi Gail! Thank you for sharing with us – I am raising a son with Asperberger’s Syndrome and am very familiar with your experience.
Thanks again.
May 22, 2012 at 12:52 am
Gail,
I love your shows and your method of teaching. I didn’t know your son had special needs, but could tell there was something unique about your level of teaching with the people on your shows. It looks as though you employ Love and Logic techniques with your clients. I have a special needs son with high functioning microcephaly, which tends to acts like autism in his case. More than mantras, I use music in many forms to calm and teach him. We are both musicians, and when he wasn’t speaking at 2 and was already in speech therapy, we began to teach him to sing and through that he learned to talk. He has an above average vocabulary and is curious about everything. He’s also very entertaining. I have a question for you though. I’ve worked for two years as a private music instructor and a preschool music teacher. I’m scared of going back into teaching full time b/c I don’t want to miss anything with him. When did you go to work after having Malcolm, and how do I know when the time is right to let go of him. I still get calls from the school almost daily about his well being while at school. He has gross motor issues and sensory issues that make it difficult for me to be ok with a full time job. Please help, I need a boost to get out of this and go back to work, not only for the money, but to find myself again. Thanks,
Liz Cook