Those of us caring for children with disabilities are used to hearing people say things like, "They look fine to me."
There are, indeed, some children with disabilities that have few visible appearances that would make them stand out as special in some way. But even when there are noticeable things and people say that to me, I admit: I feel offended!
I’m not necessarily proud of some of my thoughts, and they never come out of my mouth, but here are some that run through my mind:
- Let’s trade children for a week and see if you still feel that way.
- You just made me feel like I couldn't possibly KNOW what I'm talking about and (after nearly 36 years of caring for my son) you’ve just observed things over the course of less than 3 minutes telling me I don’t know what I’m talking about.
- Have you worked with special needs children before to make that statement?
- Do you have a child with special needs with which you have the ability to make such an assessment?
Instead, because I try to pray before I speak …. I usually say something like:
- Yes, things are pretty normal until he starts spitting, hitting, scratching, etc. me as I get him ready for work.
- Well, he is quiet, usually.
- Yes, he is good looking!
Instead of engaging directly about it I have learned to become selective to whom and of what I’ll share.
Those whose children "look fine” often have it more difficult because of that very reason. Not all disabilities show themselves to where others can see/notice them....and they’ll likely never notice, until of course...it affects them and they have a child (or someone in their immediate family) with special needs. Sad, isn't it?
Even once, someone in our extended family said to Joe as he was sharing his heart and nearing tears, "Oh, Joe, I thought you were tougher than that." OK, then! You can guess how many times we had any further transparent comments or conversations about our son with them (or any general conversation). Never.
We are still learning, as we’re not perfect, but here are some things that have worked for us:
- The idea of limited transparency works well! Don’t say too much or tell the whole story to everyone!
- Have a friend or family member that’s your “go to” person with whom you can be transparent. Make sure they’re “safe” people who will keep it to themselves and private.
- Enjoy that we have membership to this private club and find a friend in the ranks that can understand and listen…and you do the same!