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? Â 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!).
You are an inspiration! And I am impressen by your “never give up” – attitude.
For instance – I never by lottery tickets because I know the odds – but maybe I will buy one on my way home from work today… Thank you for making me take a second look at my own attitude!
Thanks, Asta! I am very much of the “where there is life, there is hope” variety, and every day I see George beating the odds.
Get the lottery ticket! You never know!
That was very inspiring. It is so good to see how you have overcome the obstacles and hurdles and are leaping forward.
Cheers!
Thanks! Every day is a celebration with my boy!
I have nothing to share. NOTHING could compare to this beautiful post. It’s stunning. Truly. i have tears. Lots of them. And it isn’t pretty. 🙂 Well done, Mama! Well done, indeed!
Kirsten,
It made me so happy to see the picture of George writing! And, I love your attitude!! Great post!
Veronica Samuels 🙂
It is a great picture, isn’t it? This is one smart kid, and I’m so grateful to have the support to help him reach his full potential.
I am crying in my kitchen! Not sad crying….happy, in awe crying. I am totally inspired by your story, your efforts, and your beautiful boy. Thank you for sharing your positive energy and uplifting story.
Thanks for the kind words, Tara! George is a very inspiring kid. I think he knows he has to work harder than other kids to achieve stuff, and he goes ahead and does it. His Dad always makes fun of what a waterworks I am, the way I get all teary-eyed at George’s accomplishments.
Kirsten,
Awesome! Way to go George!!! And way to go Mama for not giving up. That’s what mama’s do, right? Not give up? Or at least, we try not to give up – with a great deal of help from our friends!
Hugs~
Amy
Ain’t that the truth, Amy, and you know this better than most people!
What a beautifully written, inspirational story. Just curious, what are your thoughts on the alleged connection between autism and immunizations?
That’s a tough question, Kally. On the one hand, it is not a link that I believe is borne out by research. For instance, studies show that the rates of autism are the same among vaccinated and non-vaccinated children. Perhaps more telling is the fact that autism and vaccinations have not increased at the same rate, and that even after the alleged harmful ingredient in vaccines has been discontinued, autism rates continue to climb.
BUT these allegations must have come from somewhere, and I think that for a certain percentage of children with autism, vaccines may have been a factor. Even though I do not believe for a second that this is the case for George, I completely respect other parents of children with autism who believe that vaccines were the tipping point.
Unfortunately, there are parents who believe strongly in the vaccine/autism connection who are very harsh and judgmental about the rest of us. More than once, I have had a parent trying to make me feel like a bad Mom due to my decision to vaccinate James even after we knew that George had autism.
Sometimes I go back over photos and videos of George when he was a very young baby, prior to the administration of vaccines, and with the benefit of hindsight, I can spot the autism.
I believe that autism has a variety of causes, and that by trying to identify a single cause we are chasing our tails. For some kids, it probably is vaccines. For others, it might be diet. And for many, including my George, I think it’s just the result of a genetic roll of the dice.
Thanks for the comment, and the thought-provoking question!
Love, love, LOVE this post! You are such a terrific Mom and this post shows your determination. The part about teaching him to point sums up what kind of person you truly are and again, I LOVE it.
Thanks! Being as stubborn as I am does sometimes come back to bite me, but where stuff like this is concerned, it has its definite advantages!
Love, love, LOVE this post! You are such a terrific Mom and this post shows your determination. The part about teaching him to point sums up what kind of person you truly are and again, I LOVE it.
Thanks! Being as stubborn as I am does sometimes come back to bite me, but where stuff like this is concerned, it has its definite advantages!
Thanks for your response to my question. I learned a lot from it. A good friend of mine is a special ed teacher who works with autistic children one-on-one. She struggled with the decision of whether or not to vaccinate her own children, and in the end, decided to do so. She told me that she has lied to some of the families that she works with because she doesn’t want to get into an argument with them over her decision to vaccinate. It’s such a tough subject area because you want to respect the decision of the parents who have chosen not to vaccinate their children. At the same time, that choice has caused diseases that were no longer heard of to make a comeback, putting other children who are not old enough for those vaccinations at risk. Touchy subject.
Thanks for sharing Kirsten – you made me tear up at the part about George pointing. Way to go mama!!
Thanks for sharing Kirsten – you made me tear up at the part about George pointing. Way to go mama!!
I just wanted to say how inspiring you are as a person to others who have no hope or dont have that natural optimism for the future .
it’s so refreshing to come across such wonderfully optimistic human beings from time to time becuase we live in a world full of pesamists and in my opinion shouldnt be allowed into such professions until they have been through the university of life for a while at least!
I am a fellow optimis and would never wish to change thst.
I wish you so much love and peace for the future
Helen
Writer & Author from the UK
I just wanted to say how inspiring you are as a person to others who have no hope or dont have that natural optimism for the future .
it’s so refreshing to come across such wonderfully optimistic human beings from time to time becuase we live in a world full of pesamists and in my opinion shouldnt be allowed into such professions until they have been through the university of life for a while at least!
I am a fellow optimis and would never wish to change thst.
I wish you so much love and peace for the future
Helen
Writer & Author from the UK