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How Do You See Your Child’s Disability?

How Do You See Your Child’s Disability?

At a recent meeting a question was asked to a group of Parent Training and Information Centers: How do we get families to think and talk about having high expectations for their children with disabilities? The world of parent advocacy is cluttered with many different viewpoints and our children have varying medical and educational needs. No matter our beliefs  or where we happen to be on the evolution of our advocacy journey, we all care deeply about our children. Some parents learned of their child’s disability at birth. Some learned about it when their child was in utero. Some of us learned our child had a disability in early childhood, and some even later into the school aged years. Many of us were told by experts that there was something “wrong” with our child. And if you were a parent who learned of your child’s disability before their birth, some of these experts may have even encouraged you to discontinue the pregnancy. I do not wish to have a discussion on abortion, but all of this points to the larger societal framework that views disability and difference in the human state as somehow broken or inferior.

How did you react to your child’s diagnosis? How do you continue to react to it? 1 in 7 children have a disability. How do they view themselves? More importantly, how are we teaching them to view themselves? Autism, in particular, has garnered a lot of focus. Turning on the TV, one can hear the headlines, “The Cost of Raising a Child with Autism,” “The Emotional Toll of Autism,” and more. Our children are watching. They are listening. I have had friends over the years who speak of their children, right in front of them, saying things such as “He’ll never be able to do that” or “He doesn’t understand that.” As parents we are experts on our children, but our expertise does not give us license to be gatekeepers of our children’s futures or impose our understanding onto what we believe they know. As much as we know our children, we are not given a crystal ball. Technology is always on the forefront providing possibilities we never envisioned. Likewise, measuring intelligence has historically proven faulty.

What is to become of children who grow up hearing that they are innately damaged goods, whose mere existence seems to impose burdens on their families? The message is reinforced in school and in therapies, where deficits are highlighted and difficulties become repeated drills.

There is a correlation between disability and suicide and depression. A 2017 study from the University of Toronto cites the rate of suicide for women diagnosed with a learning disability to be 16.6% while those without such labels have a 3.3% rate. The same study found that men with learning disabilities attempted suicide at a rate of 7.7% compared with men without them attempting suicide at a rate of 2.1%. Another source cites depression as two to ten times more frequent in people with disabilities than the general population and a common secondary condition to disability.  We certainly cannot ignore the idea that our larger societal view of disability contributes to these rates.

Quote Are we raising children who feel like assets

We know the power of parent advocacy is potent. Just this morning I watched a video about a group of parents who all have children with dyslexia and have changed the way reading is being taught in their school district. I myself feel like I have a responsibility to continue the work of the parents who have come before me as they are passing the trailblazing torch to my generation. Their work has created possibilities for us. The work we do impacts those who follow behind us; the children our child’s teachers teach next year will be better off because of us. But this work begins and is most impactful at home where our children learn their thought patterns and beliefs from us.

Are we raising children who feel like assets within their homes, their schools, the larger community and out in the world? It is easy to get caught in the storm of disability grief, but I think that’s a choice in opposition to accepting, appreciating, and loving our children just as they are; finding out what they CAN do and WANT to do. Many years ago I was given some great words of wisdom, “We need people who think differently in our world in order for there to be progress.” I would add, we need people who move differently, people with varying backgrounds, beliefs, and experiences. Our human expansion and progress as a species hinges on the differences within each of us. After all, a disability is simply a body part that works differently