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,
Now what?
“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.
May 4, 2012 at 3:50 am
You are my hero Gail. Such strenght and love in every aspect of your life. You make me a better person through your teachings.
May 4, 2012 at 7:53 am
Your story sounds so close to mine. My son Owen was diagnosed with Asperger’s also. We had adapted our world to his, which is why home life ran mostly smooth for him. He is such a big heart, not just at home, but with anyone in his close circle. He has a huge sense of humanity for humankind and a generosity of spirit. Both of our boys will have a difficult life, but I know they will be successful, in part, because of our acceptance, encouragement and love. Thank you for sharing Malcolm with us. For all the Owen’s and Malcolm’s in our world; You have learning differences that are a challenge, but the neurotypicals of this world could learn so many things from you!!! Best wishes to you and your family, Gail.
May 4, 2012 at 7:53 am
” people with autism aren’t broken and don’t have to be fixed.” Love this statement. So true about many so called disorders. For example learning disabled really just means learning differently not learning wrongly. I am enjoying the excerpts.
May 4, 2012 at 8:06 am
Great read this morning! Thanks for sharing….
May 4, 2012 at 8:21 am
Thank you Gail for sharing your side of the story. It is very touching and you are a great mom and human being. Regards
May 4, 2012 at 8:26 am
Thank you so much for sharing this. I think you may have swayed my opinion about whether to consider adopting a child with Asperger’s. The way you describe your family and your relationship with Malcolm is amazing, and so similar to the way I envision my own (future) family. A little off kilter, but loving and honest. Normal is way overrated anyway
May 4, 2012 at 9:13 am
This made me almost cry….what a lovely parent/child relationship. I send my love and best wishes your way and Malcolms way!
May 4, 2012 at 9:32 am
Thank you thank you thank you for your words about getting a diagnosis! As a teacher, it frustrates me no end when a parent refuses to ‘label’ their child but expects all the resources. A message to parents: it sucks, but it’s true. No label = no funding. No funding = no extra personnel or resources.
May 4, 2012 at 9:51 am
Gail – have you ever read this poem relating to Autism called Welcome to Holland?
Welcome to Holland
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
May 4, 2012 at 10:02 am
Gail, and others, I’m curious about your reactions to the changes that will take place in the next round of DSM. Have you encountered any difficulties yet with professionals looking ahead to the new definitions?
May 4, 2012 at 11:40 am
Thank you Gail. I have been supplying in a Autism Nursery School program for months. This is exactly the kind of message that the rest of the population needs to hear. I love the children with all my heart and am learning so much from this experience. 3 hours a day is exhausting… Parents need all the support they can get.
May 4, 2012 at 12:04 pm
Thank you Gail. Your love and pride for Malcolm shines through your words. You’re an inspiration.
May 4, 2012 at 12:29 pm
Oh, that last bit was really funny! Leave it to a little kid to come up with any old excuse to not have to do something. Apparently that common trait will supercede any disability.
May 4, 2012 at 12:52 pm
LOVE these posts!!!!!! Can’t wait for the next one. You are truly an inspiration!
May 4, 2012 at 1:51 pm
@Gail, wonderful read. Please keep them coming.
@Melanie “Welcome to Holland” was a wonderful post. We can all apply that to so many aspects of our lives.
May 4, 2012 at 3:19 pm
I am so enjoying reading Malcolm’s story. He is a lucky boy to have a mom like you. (But I bet you feel lucky to have him too!)
May 4, 2012 at 4:17 pm
I came to your page for financial advice and because I like your show, but then read your blog. You are truly inspring and honest and thank you! Thank you for introducing us to this new aspect of your life. The financial advice you give is very empowering, and your personal story is also one of strength and honesty. On this visit I learned not only DO NOT WITHDRAW FROM MY RRSP and also that everyone is unique, indeed! Can’t wait to find out what I’ll learn next. Thank you for sharing your stories and advice. You rock.
May 4, 2012 at 7:41 pm
Gail – your love for your children shines through! I love the story about the hairbrushing in particular! You are a financial wizard, appealing writer, fabulous cook, TV celebrity, avid knitter and now master mom! Is there anything you can’t do? Thanks for being such a great inspiration!
May 7, 2012 at 9:54 am
I truly admire your determination to see beyond your?son’s diagnosis. Any kind of label belongs on clothing only.
Its amazing how love can endure.
May 7, 2012 at 10:44 am
Hi Gail, I totally relate to your comments about what parts of the behaviour are your son’s and what parts are the Aspergers. I often wonder the same about my son’s behaviour, when is he just being himself and when are certain behaviours due to his diagnosis? Please keep posting, it’s important to educate others about Autism/Aspergers.
May 7, 2012 at 4:17 pm
please keep sharing your story
May 8, 2012 at 5:40 pm
Interesting, helps us understand what challenges some families have, and how well they cope.
May 8, 2012 at 7:30 pm
I have always felt children with Autism/Aspergers have unique gifts that just need to be recognized and developed. You are to be commended for your work in that area and bringing to the forefront that Malcolm is someone who looks at the world different then the rest of us. Yes that makes him different and unique and as you said, isn’t everyone? Thanks for your blog; a marvellous contribution to those parents who work diligently with their kids.
May 11, 2012 at 6:30 pm
These posts are a great resource for me. Can Aspergers present along a spectrum?
April 11, 2013 at 7:50 pm
So many parallels. My son is 10, and quite high functioning, but I can see so much of our life in your writings. It’s so true how we conform the way we do things with them right from the start; the hard part is when we can’t conform the world around them. The worry never ends, but they are so worth it; our funny, loving, unique boys!