Ambassadors

Parents of children with special needs have many responsibilities. Caring for the child is the biggest and that can be exhausting both physically and emotionally. Educating themselves about their child’s specific needs and advocating for those are right near the top as well and that can be all encompassing.

But there is more.

Every kid, typical or otherwise, need parents show them how to interact with the world. Parents teach best by example, but sometimes they have to intervene to steer a child off a wrong track or even resort to the dreaded lecture to drive a point home. Special needs children need the same thing, but often because of their disability, they cannot understand or apply the information in the same way. Parents of special needs kids have to be more creative. Our kids also have to learn how to deal with the non-disabled world that does not understand or even particularly care about their differences. Like every parent, we have to pave the way for our children; but, because the road is rougher, the job is tougher.

Part of that is deciding how to interact with inappropriate remarks, questions, stares, etc. We have to figure out our own responses first before we can begin to teach our children. When the inevitable stupid remark or question arises, the easiest thing to do is get angry or dismissive. Easy is not always best. There are certainly times anger is warranted, but often it serves only to further isolate the special needs child as well as the parent. Often we have to swallow our first emotional response and act more diplomatically. We have to be ambassadors. We have to be the ones to bridge the two worlds.

It is very easy to become isolated in the world of special needs. We need to keep one foot in the rest of the world or we will go crazy. If you alienate your contacts outside the special needs arena, it is more difficult to protect your sanity. Sometimes, however, those contacts are the ones saying the stupid things. What to do, what to do.

When Maggie was little, I read a book called Facing the Crowd that dealt with this issue beautifully. (I do not remember the author and I believe it was published in Australia but it is long out of print now.) Jeri Hart, Maggie’s home counselor from the Blind Babies Foundation, lent it to me. (When I spoke with her last night, I learned they are still using that book for new parents.)

Facing the Crowd suggested that a parent stop and mentally categorize the person before responding. If this person were important to you or your child, e.g. a doctor or family member, you would have a different response than you would to a stranger on the street. A neighbor that you would see often might warrant a kinder, gentler response than a staring stranger at the drug store. Some you have to educate and inform, others you do not. Not everyone is going to be interested in your child’s challenges, and it is not our job to change their minds. It was an excellent tool to get me through those early years.

I’m not sure I still do that because after this amount of time we are just living our life. I am no longer interested in educating the world about Maggie nor do I resent strangers who don’t care. If people say stupid things I may kindly respond or I may snap at them. These days it is much more about my mood than the role that person plays in my life. (In other words, WATCH OUT!)

Playing the ambassador role worked for me, but it does not work for every parent. Some do not want or need to, but that is rare. Some simply miss the opportunity to be ambassadors. Some just cannot handle it. Some are too angry to do it effectively. Most however, do this seamlessly and bring two worlds together.

It just comes with the job.