Expectations

I was thinking about my journey in coming to terms with the diagnosis of Down Syndrome. Initially, I paid attention to milestones and was so excited if Nathan hit something close to on time. And he did in those early months. While I was devastated by the diagnosis, I was convinced that through good parenting and early intervention we could make my son "high functioning". I was thinking in terms of IQ. I know that people with Down Syndrome have mild to moderate mental retardation, and so I assumed of course my son would have mild mental retardation, not moderate. Since mild mental retardation is defined as an IQ of 50-70 with corresponding deficits in adaptive functioning, I figured my child would have an IQ around 70, you know, still technically fitting into that category but at the top there. And then given the great environment we were providing and the speed with which we got started in early intervention, I figured we could probably raise that IQ another 10 points or so, and plunk him into the "borderline intellectual functioning" range of intelligence. Wow. I just reasoned my way out of one of the main features of Down Syndrome. Except...
Except that there's no real reason to think that my kid is different or better than anybody else's. No real reason except the hope for this, used as a coping strategy. Over time I've seen that my child does have global developmental delays. He's been tested by various professionals at various times and the scores (usually given in terms of an age in months) were heartbreakingly low. It became clear that even if the tests don't measure everything and he doesn't show off all of his skills when he is being tested, my son has not escaped the cognitive challenges that come with Down Syndrome. It's clear too when I step back and observe his "adaptive functioning". My 3-year-old doesn't use a fork, can't pull up his own pants, can't reliably tell you his name when asked, etc. etc.

Before I embarked on this particular parenting journey, I held IQ and other standardized measures of intelligence or achievement to be pretty important. If cognitive functioning was important to me in how I judge a person, and I was beginning to realize that I very much love somebody who has below average cognitive functioning, how did I reconcile this cognitive dissonance?

I changed my values and my focus. I came to realize that intellectual functioning isn't the be all and end all. I came to value my child's strengths, to revel in his accomplishments, to avoid comparisons to anybody's charts about milestones, and to avoid comparisons to other children with and without disabilities. This took a long time and of course sometimes I need to be reminded still. I do have to see the challenges and areas that are not so strong so that I can motivate him to try and to work on these areas. I see that he will give up at times rather than persist when a task is hard, and he needs encouragement to try and help to be successful and build on success. But more than anything I focus on the strengths and the new abilities that unfold. I try to compare Nathan today only to Nathan yesterday, to see the growth and the change, the emerging abilities. Development happens, and there are things we can do as parents to help, but having expectations about the when and the how doesn't help. Having a sense of wonder and the ability to stay in the moment does.