They said he would never talk, that he would be trapped forever in a world in which language was beyond his reach. He would never laugh and play with other children, he would never understand what his birthday was all about, and he would never feel excited about Christmas.
They told us that he had limited capacity to learn, that as other kids his age surged forward in reading and math and problem-solving, he would inch forward agonizingly slowly, falling further and further behind. Big phrases like Severe Cognitive Impairment were used. He probably wouldn’t make it as far as high school, and he was unlikely to ever hold down any kind of job.
Over the year or so leading up to that day, I had assembled a jigsaw puzzle in my head. It was made up of many, many pieces, and it was a picture of a happy, functional family consisting of a Mom, a Dad, and two brothers who fought all the time but were best friends. In this picture, the family were doing typical family things. They were throwing birthday parties, going on family vacations, attending school concerts, and cheering on the boys at sporting events. The boys, as teenagers, were going on their first dates and graduating from college.
As I sat in that doctor’s office receiving my firstborn son’s autism diagnosis along with a very bleak prognosis for the future, my jigsaw puzzle of how I had thought my family life would be started to fall apart. As the pieces fell out, the holes in the picture got bigger and bigger, and eventually I was left with no picture at all – just a massive jumble of pieces that I was going to have to put together again in a different configuration, to form a very different picture, when someone has thrown away the box.
The diagnosing physician was not being maliciously pessimistic. He was offering us the prognosis as he genuinely saw it, based on a months’ worth of assessments and evaluations. He did not in any way imply that we should give up on our boy, but he did try to prepare us for a lifetime of hardship. He was certain that his predictions for George’s future were accurate. Holding his thumb and index finger two inches apart, he said, “Usually I allow myself this much margin of error,” and closing the gap to an eighth of an inch, he said, “In this case, I only allow myself this much.”
I guess everything that has happened since then must fall into that eighth-of-an-inch margin of error.
You see, even when I am in the depths of despair as I was that day, I am a natural optimist. When things are bad, I operate under the assumption that they will get better. I am the kind of person who buys lottery tickets because someone is winning the jackpots. Why shouldn’t it be me? And even though that doctor only gave us an eighth-of-an-inch possibility that George would accomplish anything, an eighth of an inch is still something, and as long as we had any number greater than zero, there was hope.
As soon as we got the autism diagnosis, we got George into that complicated and sometimes overwhelming thing called The System. Through The System, we applied for and received funding and tax breaks to help George. We took him to another assessment, run by the provincial government, after which George was deemed to have just the right amount of autism to be able to benefit from the government-funded autism intervention program. We took him to speech therapy and occupational therapy, and we hired respite workers to help teach him daily living skills and social skills.
A big deal had been made in George’s diagnostic assessment of the fact that he didn’t point. The ability to point is crucial in communication development. It is one of the earliest signs of the intention to communicate, and the intention to be social. A child cannot develop the basic building blocks of communication if the ability and intention to point is not there.
And so, almost as an act of defiance against the diagnosing doctor, I decided to teach George to point. Every night I would sit with him at bedtime, reading him stories, and manipulating his hand to make him point at pictures in the books. “Where is Bob the Builder?” I would ask, before taking his hand and moving his fingers into the right place as if he was a giant piece of Playdough. There were many nights when it was just too exhausting, when I felt as if George was never going to get it.
But then, almost a full year after Bob the Builder stories, hand-on-hand manipulation, and prompting until I was blue in the face, magic happened. One night I wearily said, “Where’s Bob the Builder?” And to my utter amazement, George raised his hand, tentatively straightened his index finger and curled all the others, and with a tiny smile on his face, he slowly touched the point of his index finger to the picture of Bob.
Imagine my fiance’s bemusement when he saw me blubbering like a baby and asked, “What’s the matter with you?” only for me to reply, through enough tears to fill Lake Ontario, “George puh-puh-POINTED!”
Almost four years have passed since the diagnosis, the day the doctor told us about all of the things George would never do. How stunned would that doctor be today if he saw George today – this kid who, while not exactly talkative, is at least functionally verbal, and who outperforms typical kids of his age in math?
What would the doctor say about the emergence of George’s funny, quirky sense of humour? How would he respond if he were told by subsequent assessment teams that over a period of just one year, George made 23 months’ worth of gains, that instead of falling further and further behind other kids his age, he is in fact closing the gap?
It’s not all plain sailing. There are days when I want to sit in the corner with my hands over my head, rocking and moaning. But most days I marvel at the fact that my George has taken that eighth of an inch and turned it into a thousand miles.
Do you have a story about a child beating the odds to share? Or, can you relate to a difficult time in motherhood where you chose to be optimistic?
This is an original post for World Moms Blog by Kirsten Jessiman of Toronto, Canada. Kirsten can also be found on her blog, Running for Autism.
Photo credit of George writing words to Kirsten Jessiman (Go George!).