This I Believe

Sue - Finksburg, Maryland
Entered on November 21, 2007
Age Group: 30 - 50

This I Believe: that having been handed change, accept its gift. Learn from it. Try to make yourself and the world better because of the detour your life has taken.

I say this as the mother of a son with a disability. My son who, to my inexperienced parent’s eye, was perfect. What a good baby! He was calm, ate well, slept well, loved to be held – a peach of a baby. He said his first words on time. He held his head up, crept and crawled, and tried to walk holding on to the furniture at the expected intervals, but didn’t really walk till 15 months. He seemed to slow down in slow motion. He was always a boy of few words – but even those few he rarely used as time passed. His acquisition of skills seemed to plateau. He drooled all the time – a bib wasn‘t just for mealtime at our house. And so at 2, our pediatrician gently told me to take him to a leading child development institute for evaluation.

The bottom fell out of my world. How could my beloved child be defective? How did this happen? Did God do this? Was God punishing me? And so, resisting change, I refused its gift. I made deals with God and life and myself trying to find something that would restore my child to his rightful, perfect self. I tried therapy after therapy, alternative medicines and supplements and diets but mostly I loved him. While I grieved for our lost boy, the boy who was going to be brilliant, and athletic, and happy, and successful, I always loved him.

At the age of 2, I learned that our child was not going to fulfill our dreams; he would live his own, best life. Many parents are spared this shock till their child is in high school or college. I had to learn it earlier than most. And it brought into question the nature of the parent/child relationship and of love. Hadn’t I loved this child before his disability was brought to our attention? Wasn’t I thrilled to be his mom? Was I so small that the fact of his disability would make me stop loving him?

I didn’t need to learn to embrace my son but I did need to learn to embrace his disability. To open my eyes to the whole person that my son is: to the parts of him that are like me and my husband, and the parts of him that are unique, and to his disability, itself. But having accepted my child does not mean that the world accepts him.

My son is a beautiful child. As a small boy, adults always seemed to want his attention when we went out. But when he wouldn’t respond to their cheery greetings and compliments, these same adults would get angry and impatient and turn away from what they perceived to be his bad manners. Trying to explain my son’s situation seemed only to make things worse – perhaps these folks felt taken in by my son’s cherubic face which had obscured his disability to them.

So, I find myself trying to open up the world for my son. It’s an effort on many fronts. Inclusion in the community, first in our churches and temples, playgroups and child care centers, and then in neighborhood schools, is paramount. A public relations campaign for people with disabilities aimed at opening the minds of the 80% of Americans who don’t have a disability is equally important. Getting the President and Congress to fully fund the federal portion of special education services (which are currently woefully underfunded) would naturally follow.

Some of my friends who have children with disabilities are more sanguine about the “back of the bus” status our kids endure in school and in life. They don’t want to hold other children back by placing their child in a regular academic classroom. They understand why other parents may regard their child as undesirable. They reason that they felt the same way themselves before they had a child with a disability.

I understand these points of view all too well because I once felt the same way about people with disabilities. But now that I am a mother of a child with a disability, shall I not learn from my experience? Having been handed this gift of change, should I not make use of it to gain acceptance for my beloved child, and all the children who have a disability, in this world? Surely, to refuse this gift would be a denial of my son’s dignity and my own.