Monday, July 7, 2008

Community or lack thereof.

We spent the 4th of July with a friend’s family. We had a big chicken barbeque, tons of good deserts and later, illegal fireworks. This family is one the few that fully accepts our children. No subtle (or not so subtle) put-downs. Just acceptance and help. They actually help us keep an eye on DS2 and DS4, who are runners. I thought about how rare this situation is for us and how our perception of our community has changed since our first two children were born.

Once your child with a disability is born, the community does not know how to react. Should they congratulate you or offer condolences? Since they are unsure, they usually do neither. They talk of “miracle” babies but if the “miracle” is incomplete, i.e. disabilities appear, the child is not longer miraculous but is a hindrance, a parasite on the community.

Your life is filled with surgeries, doctors’ appointments, and therapists’ appointments. You have no time to nurture relationships with family and friends. And, no one cuts you any slack. You cannot just get the teenager from down the street to baby sit. Heck, your own family doesn’t want to deal with your special needs child. Your child makes your friends uncomfortable. It is an “in your face” reminder that there, but for the grace of God, go I.

You are advised to “get over it,” “accept it” and “get on with life.” How can I “get over” my child’s multiple impairments? I live my life knowing that my children will face pain, both emotional and physical, teasing and unacceptance. I spend my days fighting for insurance coverage for therapy, surgery and medical equipment. I’ve been meeting with school officials regarding special education services since my children were barely home from the hospital. Who will advocate for my children when I am gone?

Special needs children are more expensive than neurotypical (NT) children. A basic stroller for an older child with special needs is over $2,000.00. Most insurance coverage has a 50% co-pay for durable medical equipment, such as a stroller. Diapers cost more the older the child is. We reach our lifetime caps on medical insurance sometimes before the child comes home from the hospital. More money goes out so more needs to come in. Both parents feel the strain on their marriage. The divorce rate for parents with special needs children is near 85%! The fear that the marriage might crumble is a very real fear.

Our neighbors in the “community” don’t want group homes in their neighborhoods. Zoning restrictions define “family” and limit the number of unrelated persons who can live in the same dwelling. Not in my backyard! We don’t want “those” people in our neighborhood.

Our community claims that all life has value. That our children have value. But, our community does not value our children. We are not welcome in homes, in churches, in schools, or in neighborhoods. We are hissed at in stores to “make our children behave.” We are muttered at in restaurants if we try to act like a normal family and have a night out. People won’t sit by us at fast food restaurants and they pull their children away from ours at the park. Isn’t it sad that as a society we have lost that sense of community? It is not enough that NT children be allowed to participate, go to school, attend church, and maybe even be a basketball star. Those opportunities must be open to the child with disabilities as well. That is the gift of community.