Saturday, August 1, 2009

Words Fail

I'm not sure the right way to respond sometimes.

One friend says to me, "I think your kids are just fine. You just want them to be perfect, that's the problem."
Another sends me articles about the dangers of the GFCF diet, especially when blindly adopted by desperate and ignorant parents.
Others repeatedly invite us to do things with them that we've said (over and over and over) we can't do because there are too many challenges for it to be worthwhile to us. For instance, we don't indulge in weeknight outings, because we have therapies every night when we get home from work and school, and then there is the gfcf food situation to navigate, and medicines, and then there are the behaviors to contend with... so, still, no.
And then there are a few people who keep wondering in feigned shock why we don't just "get a babysitter?"

Sometimes I feel like I run out of words, or I can't find my tact, and so I say nothing. Other times I think I step in it. I end up having to apologize, or worrying I should have. Mostly I can't figure out what I'm expected to say, or what I could say that would suffice.

On the flip side, I have to recognize that the people saying these things to us probably don't always know what to say, either. Many are like we were before the Rooster came along -- largely uninformed about autism. And our boy doesn't fit the image most people have -- or that we had -- of autism. Of course, I totally understand that. I get where they come from, even though it results in some uncomfortable communication sometimes.

While I still don't know what to say to some of the people I'm describing, and I don't expect them to know what to say to us, I do know what I would suggest to people if they wanted to know what to say to us. I guess what I'm saying is that you could consider what follows as suggestions of things to say if you aren't sure how to navigate a conversation with parents of high functioning kids on the spectrum:

- I know it might be a challenge for you guys to join us, but if it works for you, we'd love to include you in our (fill in invitation to trip, party, dinner, etc.). And if you can't make it, just know we have been thinking about you and we hope to see you soon.
- Are there any things we could do to make it easier to include you in our (blankety blankety blank)?
- I'm interested in the gfcf diet. What can you tell me about it? How did you decide to try it?
- You let us know when there is a good opportunity to get together, and how we can help make it work out, because we'd love to see you.
- Your kids are doing great. I know that means you have been working hard.
- I don't see what you see, but I think you are probably the expert on your own child.
- I don't see your child the same way you do, but that's natural since I spend so much less time with him/her.
- I know you've been through a lot, but you should be proud of the work your family is doing.
- What can I do to help? If nothing else, I could listen.

Now, anyone have some ideas of what I ought to be saying? I'm open.

1 comment:

Melissa (Betty and Boo's Mommy) said...

Let them read this post. Seriously. This is wonderful, and heartbreaking at the same time. We have been there, and are very much still there in some ways. I wish I had words of wisdom to share ... words fail me, too. (((hugs)))