This beautiful essay was written by my niece Alice Woolley and was published recently in The Calgary Globe And Mail. It is poignant and touching. The picture is of John and sister Emily.
“My son is beautiful. Green eyes, golden hair and tan skin, muscles taut from running and jumping, perfect teeth, an engaging smile and a laugh that lights up a room. He also has significant cognitive impairments and autism. Now 6, he was diagnosed 3½ years ago, the last in a series of unfortunate events starting with a troubled pregnancy and an induced birth to allow surgery to fix his obstructed bowel.
We thought we had come through the difficult times, but patterns of delayed and atypical language sent us off to the pediatrician again, and eventually through the diagnosis specialists at Alberta Children’s Hospital. As soon as he was diagnosed, we, like all other parents in that situation, were inundated with information about how he could be cured, about the diet, therapies, vitamins and other treatments that, if followed, would change him, fix him and hopefully make him like the little boy his age next door who could do so many things that John could not.
I learned about taking all dairy and gluten from his diet, about the 40 hours per week of behavioural therapy necessary to teach him typical speech and behaviour, about vitamin D and other supplements that could help his behaviour, speech and cognition, and about measuring and removing the mercury and other toxic metals from his body. We have done almost none of these. He has occupational and speech therapy twice a week, behavioural supports for preschool and community living, and other services provided at truly generous levels by the Alberta government. But we did not change his diet (except to try to expand his willingness to try different foods, much like we did with our “typical” daughter). We did not give him special vitamins, or anything beyond a daily multivitamin. We did not put him through chelation therapy to remove toxic metals from his system. We continued to vaccinate him. I once took him to an alternative medical practitioner for a consultation, but I didn’t go again.
My husband and I made these decisions because, in the end, we couldn’t satisfy ourselves that the cures and those who promoted them were anything but faith healers and snake-oil salesmen, the former unconvincing to a lawyer and an academic needing reason in everything, and the latter seeming to prey on our hopes and grief. And many of the choices, as well as being difficult and expensive for us, would have imposed real costs on John, taking away things of importance to him such as all his favourite foods. There were plenty of websites and anecdotal evidence suggesting they would work. But there was also information, generally from more mainstream sources, suggesting that for all their cost in time, effort and money, the methods at best did not work and at worst were downright dangerous.
The problem was – and is – what if we are wrong? What if what we have done has denied John his chance, his opportunity to be typical, to grow up, get married, have a job, have children and lead the life that all parents think from conception will be their child’s by right or choice? What if all those stories are right, every book and anecdote in which the child crippled by autism is cured, and could have been John’s story if we had made different choices? There are the other stories of course, the evidence that autism is not caused by vaccination, the academic books expressing skepticism about most of the cures we chose not to pursue.
But mainstream medicine has its credibility issues too, such as the demonstrated influence of pharmaceutical companies on medical research, or the failures and injuries caused by past mistakes such as thalidomide. So we cannot ever truly know whether our choices were the right ones, what would have happened to John, who he would have been and become, if we had chosen a different path. One day someone asked my husband what it was like to have a disabled son with an autism diagnosis. “If he didn’t have autism, he wouldn’t be my John,” my husband said.
Over time, I started to wonder if that wasn’t the truth and heart of this. Maybe John could have been “typical,” but would he be better? He certainly wouldn’t be – couldn’t be – happier. Every day he lives his life with joyful exuberance, delighting in everything from the absurdity of a sneeze to the letters that come on the television as the credits roll, his favourite music (Hey Ya) and the people he loves. He is loved beyond measure by his parents and long-time aide and other caregivers, and in her own prickly way by his sister. And he loves in return. When he isn’t running he is cuddling, holding on tight and snuggling his body into mine. He likes to “call Daddy at work” and say his favourite memorized rhyme into the phone for Daddy to repeat back to him.
There are so many things he cannot do and hasn’t been able to learn yet, but he has also had triumphs – toilet training, new language and communication skills and learning the co-ordination to clap his hands and stomp his feet to show that he is happy and he knows it. He is precious and beautiful and mine, and as I look at him running in circles and jumping on the furniture, fully engaged with everything around him, I wouldn’t change him if I could.
Alice Woolley lives in Calgary.”