The Elusive Perfect Child

Reading the comments on the Globe’s website about this piece, it looks like there are quite a few reactions to this piece both positive and negative, but mine is one of empathy and understanding because I am a mother of two children with autism and have had horrendous things said to me over the years. I also have a sister-in-law who has a 5 year old son, a twin, with Down Syndrome.

People who are not raising a child with a disability do not know what we experience on a daily basis, nor do they understand the gifts and lessons these children bring to our lives. I used to be a teacher who did not understand the learning struggles of some of my students until I had my own children with difficulties. I always worked hard as a teacher, but after living with autism I knew I had to be more flexible with my lesson plans and try to include everyone as best I could. Just because a person is not achieving to the level of their peers does not mean they are not worthy of having a learning experience.

Over the years, the following statements have been said to me:

• Is the autism genetic since you have two children?
• Just because they have autism is no excuse for their behavior.
• Your viable option is to put your daughter up for adoption as the gains you’ve made with your son will certainly be lost and your marriage won’t survive (advice from a psychologist)
• You must be thrilled to be receiving a second diagnosis with your daughter because you now know so much from having been through it already with your son.
• God must think you are very special.
• God wouldn’t give you what you couldn’t handle (Oh, really?)
• God must want you to learn a lesson.

Certain people do feel the need to comment when in the presence of a disability. Maybe it is done out of fear or ignorance. Maybe they are relieved it’s not them. Maybe they feel superior because they are glad not to be in your situation. I’ve never figured out why these comments occur but they are hurtful even if we, the parents, don’t show it to the outside world. I think the best advice is hold your tongue.

The inclusion/segregation debate still seems to be out there. As a society, we have to realize that an entire section of the population cannot just be shut away. We become stronger and better people through helping those that need our assistance. Sue Robins’ message, there is no such thing as a perfect child, has to be kept in the forefront of our minds. Everyone has their strengths, quirks, and weaknesses. The truly exceptional are a minority but of course, those are the stories that are published so they create the illusion that such exceptionalities are more common than they are. Olympic athletes are a good example of this – how many people who participate in sports reach the Olympic level? If they don’t reach that level, should they be excluded from having a sports experience?

I particularly liked Sue’s final quote in the article, “What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?” Sue has reminded us of the fragility of life. Any one of us could become disabled at any time. All it takes is an accident, a stroke, or just being in the wrong place at the wrong time. Another parent could be sitting beside me tomorrow with the same worries if her child was hit in a crosswalk and suffered a brain injury. There are no guarantees or perfect people in this world.

So what can you say to us that is helpful? Ask if you can lend a hand in some way. Invite us out for a coffee. Include our children in your children’s plans. Even if we decline, it is still nice to be asked. Thanks, Sue Robins, for writing such a thought provoking piece this week.