Posted on 26 March 2010.
It is Saturday morning, 6:59 am, and I can hear a whisper in our bedroom. Someone is counting very, very quietly. I crack open an eyelid and can just make out our eight year old son, Jack staring at the clock on the cable box. As I watch, I see the numbers change to 7:00 and the second they do he whips around, rushes over to the side of my bed – why is it always the mother’s side? – and in a very loud whisper hisses, “It’s seven o’clock. Can I go play Wii now?”
I am irritated by this early morning weekend ritual. I have to bite my tongue to keep from snapping at him and wearily I tell him that it’s fine. I remind him for the hundredth time that he doesn’t have to check with me; when the clock says 7:00am he can go ahead and start his screen time. But he doesn’t hear me because he’s already plugged in to Super Mario.
Even if he did hear me, he’s still going to keep waking me up to check if he can start. He’s careful that way – always making sure he’s on the right side of the law. This need to follow rules, know rules, and make up rules is a funny little remnant of a much bigger issue, the one reason that keeps me from losing my temper with Jack when he wakes me up at the crack of dawn. Jack is one of the only children I know of who has fully recovered from Autism.
My husband and I had decided to open our own business when we discovered I was pregnant with our first child. It was a demanding and difficult nine months, and when Jack was born, his father had virtually no time to see him since he was now covering his work load and my own. With no family nearby, I took on most of the very bewildering parenting and because of my husband’s effort, I felt very blessed that I could. I went to mother’s groups, baby and me classes and Early Learning Centre programs. I took him shopping and walking, to playgrounds and the pool; I did everything a modern Mommy could do.
But I hated it. Almost every mother I met seemed to be having fun doing the “mommy thing”. I was sure that they all hated it as much as I did but, having been raised to believe that spending time with your child was the ultimate goal, they must all have been feeling the pressure to fake their happiness. I, on the other hand, told anyone who would listen that I wasn’t cut out for this stay-at-home mom job. It was boring. My kid did nothing. He didn’t want to play with me, he didn’t smile at me, laugh, come find me or cry for me. He was now 15 months old and he preferred to line up his books, open and close the drawers in the kitchen, and above all, to watch television. He would climb up to the blank TV and stare at the face of it, waiting for it to turn on.
On the positive side, he was very undemanding. He never asked for anything, cried very little, went to sleep without screaming for me and took to routine like a fish to water. My friends all had stories about how their kids were getting into everything, wanting their attention all the time, and had to be watched constantly. They were envious of my Jack, who could be put down on the floor with blocks and still be there 15 minutes later, lining them up. Certainly this came in handy when I was nauseous in the beginning stages of pregnancy number two.
It wasn’t until he was almost 18 months old that the vast difference in Jack’s behaviour and that of his peers began to be markedly noticeable to family and friends. When my sister Elizabeth first mentioned Autism to me I thought she was just being mean. When I mentioned Elizabeth’s comment to one of my best friends, she heaved a huge sigh of relief and told me she had been collecting information about Autism for the last three months, in the hopes that she would have the strength to broach the subject. Then my mother weighed in and I realized that when the three most important women in your life all tell you the same thing – independently – you need to listen.
It was devastating. It rocked the foundation of our marriage, of our plans for the future, our financial well-being and of our dreams for this beautiful boy. What I know now is that we were grieving. At the time, I thought what I was doing was healthy researching, and that my husband was in denial. I realize now that burying myself in my office until the early hours of the morning, each night for six months was not just research, but loss. I know now that when he refused to use the word “Autism”, my husband wasn’t being stubborn, he was just working at letting go of what he thought this child would be. It was a very dark time.
But out of that time came a plan – one that was to evolve constantly over the next 4 years. It began with realizing that there was no cure. There were many treatments, however, some that involved dietary changes like eating gluten and casein free, some that were about supplements, and still more that involved alternatives such as Massage Therapy, Cranial-Sacral therapy, Chelating, and Auditory Therapy. Some of these we tried, others we didn’t. But we felt we couldn’t count on these options alone. We read about Applied Behavioural Analysis and Intensive Behavioural Intervention and learned that overall, this was far and away the most successful treatment for a child diagnosed with Autism. This was going to take work for both of us, but mostly for Jack.
These therapies require a child to work one on one with a trained individual who takes them through a program designed to teach them to talk, learn, communicate and play. It teaches social, motor, and verbal behaviors as well as reasoning skills to children with who may otherwise not “pick up” these behaviors on their own.
Feeling that every minute we wasted was an opportunity lost, we quickly met with a few centres and decided on one that we thought was best. We enrolled Jack in 35 hours of therapy a week. The interpretation of ABA by this centre involved Jack sitting at a table repeating words and learning phrases and being rewarded with small pieces of food. He had to learn to sit, I was told, before he could move forward. So he sat – for twenty to thirty minutes at a time – and every attempt to get out of his chair resulted in being put back in it. Only when he repeated something at least 10 times, and the therapist graphed this progress, was he rewarded with the chance to get up.
Mothers are renowned for their ability to carry guilt; I will likely carry this guilt to my grave. He was at the centre for eight months and I knew after three months that even though they were the “experts” this wasn’t the way to teach a child. In theory this type of behavioural modification works, but it is not a perfect system in practice. This method did not teach our son to generalize what he was learning. He could tell you that the card in your hand was blue but he couldn’t tell you what colour the sky was. He could say “I want book” when at the table indicating his reward of choice, but he couldn’t ask for juice. There had to be a better way.
It took about 4 months to find it. We found it in a therapist named Tracey Grensted who had been working for the government arm supporting children with Autism. She had left her position believing, as I did, that each child responded to a different method or interpretation of IBI. She arrived at our house with a number of different models we could use: Verbal Behaviour, Relationship Development Intervention, and Play Therapy. Here was a person who truly understood that each child with Autism is completely different. She believed that the reward for learning should not be food, or some inanimate object; the point of therapy was to engage the child, bring him willingly out of his world to ours. She told me that she wanted a child to feel his day was getting better when she arrived, not worse. She wanted to be the reward.
This was and will always be, the pivotal moment of Jack’s life. Nothing in his future, a spouse, a child, an academic achievement, will ever come close to matching this moment. When Tracey came into his life, his life began. Within days he was showing excitement to see her. She made a list of toys I should buy that would encourage Jack to talk, to share and to play. I went out and bought every one of them. She asked for paint, paper, balls, games, a parachute, flags, a toboggan, dolls, trucks and play dough and I bought every single thing. Because in the space of four week we began to see who Jack might really be. He wanted to interact. He took my hand and led me to the fridge for juice. He kissed his baby brother. He hugged me back. He laughed when I tumbled his blocks. He looked at the sky and said “blue”.
We had invited Jack to come visit us in our world and he found he liked it. As he developed, we changed to suit him. There can be no set path to the therapy an Autistic child needs. As they change, so must we. Table work, associative activities in which he learned feature, function and class, were suddenly an option. Learning to read became a necessity because he wanted to know what the road signs meant, and he needed more and more time with support for social interaction because he loved other kids.
Tracey began to take him into the daycare that had kindly let us rent space. He joined in at circle time, outdoor play and some centre time too. Tracey stood beside him and when one of his classmates spoke to him she would prompt him with the right response. He knew to repeat it and the conversation would continue. He was intrigued by this and very quickly began to amass a series of appropriate responses to use with his friends. Tracey stood back and let him try but was there to step in when he needed it. He quickly began to master the art of conversation.
It was still hard on him. He was now learning 40 hours a week, with about 2 hours a day spent with his peers. At the age of 4 he was working harder than most adults I know and it took a great deal of work on our parts too. We were still struggling to stay positive and there were so many valleys. There were times when we couldn’t imagine a day when things would be brighter. His need for routine was all-encompassing, requiring social stories, warnings, preparation that was fit for the travels of a foreign dignitary just to go to see a friend. We visited a Snoezlen room to fill his sensory needs, took him to the mall to help with his limitless need for movement. He needed pressure so we would let him to push his feet into us and lean his body on us but we weren’t allowed to hug him. We indulged his obsessions so that we could interact with him: reread books one million times over, drew circles for hours because he asked, counted with him again and again when he discovered numbers, repeated back to him the words he found interesting to say and hear, sat with him and handed him rocks for hours at a time because watching them plop into the river was fascinating. We removed furniture from rooms so that he build could tracks but never play with the trains, bought stacks and stacks of construction paper so that he could draw maps, drove over countless railway tracks because he liked the sensation. And while this partial list sounds exhausting, it was how we reached him. We shared in his interests, inserted ourselves into his world every chance we got. He got to know us, he got like us, and he wanted to be with us more.
As he moved into Kindergarten, he did so with Tracy’s support. She spent the first few months in the classroom setting up the routines the Educational Assistant and teacher would need to help him be a success. We were lucky to have found a principal who agreed to this and teachers willing to learn and incorporate certain methods into the classroom. And again, Jack excelled. It was a great day when I overheard a conversation between two parents who volunteered in the classroom as they tried to work out who the EA was really for.
By the time Jack reached grade one, he was doing spectacularly. He had friends, was invited to play dates, suffered the same anxiety and experienced the same joys as other six year olds his age. He got involved in soccer, Pokémon and loved SpongeBob. By December of grade one the teacher approached us and told us that she was feeling guilty for keeping an EA in the classroom when it wasn’t necessary. We released the EA to another child in the school who clearly needed her more than Jack did. What a triumph.
Our son is very different person from the one we were told to expect when he was diagnosed. And yet it’s important to know that our choices for Jack were never about changing him, even though we started out as most parents do: hoping to “fix” him, praying it would go away. We realized quickly that we wanted to offer him not a solution, but a choice. We found him therapy and taught him to talk so that one day he could make his choices clearly. We helped him communicate so that he could learn and one day choose to a career he would enjoy. We offered him love and taught him how to show his love so that, if he chose, he could express it. Throughout all of this we knew that he might decide not to be a part of society as we enjoy it. He might have grown up to choose solitude. And that would have been fine because he would have had a choice. Without therapy he would only have had one option.
As a parent, we knew had only one option. We, like the majority of parents, were willing to do whatever we could for our child. We borrowed from our business to afford the 60,000 after-tax dollars it cost to put him in the 40 hours of therapy he needed. We were on the government waiting list for almost three years – and then we only qualified for 20 hours a week of funding. It was so frustrating to receive only half the help we needed when research – and Jack’s progress – shows that anything less than 35 hours is far less effective.
While it certainly is expensive, the cost of not providing this therapy is exorbitant. Because we invested in our son, he will never be a drain on our health system. You will never see him living in a group home, requiring the costly and difficult care that can often be necessary for an untreated child with Autism. A recent study published in the Archives Of Paediatric and Adolescent Medicine states that “the lifetime per capita incremental societal cost of autism is $3.2 million. The researchers attribute this cost in great part to lost productivity and adult care. They also state that “…although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood.”
Jack will find a career, live independently, have true friends, and perhaps find a partner in life. He may even choose to have children – and he will make a terrific father, I know. Our investment, including the portion made by our health system, however small, will have paid off in spades.
This summer Jack lost his Autism diagnosis. He no longer meets any of the criteria for the disorder. Seven years ago we had a hand-flapping, toe-walking, finger-flicking, non-verbal child who didn’t even know he had a family who loved him. Now, we have a brilliant, devoted, energetic and vibrant child who reminds us everyday what perseverance and diligence, love and faith can bring about. I can’t wait to see what he does next