Responsibility

I have been thinking a lot lately about responsibility. What is society’s responsibility towards children with special needs? What is the role and responsibility of friends and family of children with special needs?

The government, for example, understands that they do have some responsibility to help children with special needs. From an economic point of view, I am sure they realize they have to give families some assitance as, if they don’t, these kids are more likely to end up in institutions which is more costly than keeping the kids at home and leaving most of the responsibility to the parents. So the government helps with medical expenses, they sometimes help with therapies and equipment. So there is some recognition that society and the government has to help these children and their families.

I have noticed there are so many movements and non-profits and support systems set up for people with cancer. If a child is diagnosed with Leukemia, for example, other people step up and help, they offer to cook and clean, they offer to watch the other kids. There is a lot of support in general. But the difference is, leukemia is a condition that can be treated. If the kids get better, the leukemia ends and life goes back to normal.

Brain injury never ends. Perhaps some of the less affected people recover and don’t have to continue with therapies etc. But kids that are more seriously affected don’t just “outgrow” or “recover” from cerebral palsy. It is a life long battle.

So I wonder if this is one of the reasons there is so little interest and willingness to help? Maybe people are only able to muster up compassion for short periods of time, and can’t bear to be in it for the long haul.

I wonder when Nathan was first diagnosed in utero and when he was first born we had lots of support. People thought it was a one time battle, and that it was just about him surviving birth, so we had tons of people offering to help. But afterwards, not so much.

So I have just been wondering what the role of community and society is when raising a child with special needs.

It saddens me to see how little support there is. Most of the families that I have met are doing it on their own. Are doing their very very best to make things work for their kids, without the help of others. It breaks my heart.

So I have decided to write more about the daily difficulties of caring for a child with special needs. The catch 22’s that we face, the common and uncommon challenges.

Maybe if people are more informed they would be more willing to help. Maybe what we’re lacking is information.

But maybe I’m totally off base. Maybe our kids are no one’s responsibility but our own and we need to do what we can on our own.

I honestly don’t know.