We spent the last week on Cape Cod. It was really a great vacation. We took the kids to the beach every day (most days they went twice), and we swam in the pool, played outside, and ate lots of seafood. The house was perfect for us, and I like the idea that it is a house and area we can go back to next year.
I wanted to get something off my chest, to share a thought with you. I should start off by telling you that M disagrees with me on this. Every once in a while, someone with kids who is coming to my house will ask me what they should say about Sam to their kids. Now these are nice, good people. Often people I know pretty well. And I find myself feeling, well.....annoyed. I know, it sounds terrible. Wouldn't I rather someone ask than not talk to me (or Sam)? Sure. And I have thought about it a lot to figure out what it is about the question, and the conversation, that bothers me. The truth is, it isn't the concept of asking, it's the vagueness of the question. I think I would mind less if someone asked me a specific question about Sam. Or, if their child asked me a question. That would be even better, I think. But when someone asks me in advance of a visit, or in preparation for a conversation with their kid(s), what to tell them about Sam, I guess I just don't know what to say. And I guess I think it's kind of a dumb question. I apologize in advance for my rudeness, because I know the question is well intentioned, and not asked to make me feel bad, or irritated. But the thing is, I'm not sure it's necessary to talk about Sam's disability in advance of meeting him, if a kid doesn't ask.
That said, my answer would probably be more general than specific. I wouldn't necessarily say to a young kid that Sam had autism, but more likely go along the lines that there are some things that are difficult for him, like talking, and he uses a device (the iPad) to help him communicate. I think part of exposing kids to people's differences is sort of pretending like things aren't a big deal, or they aren't that different from you. Focusing on the similarities. The idea, that all children are kids, just like you, but some may have a special chair to help them walk (and go really fast), or an iPad to help them talk (and tell jokes, play games, watch movies and read books). I know this is simplistic, and may not work for all kids, but I feel like the way to talk about this kind of thing is on a need to know basis. Like when a kid asks a direct question. Does this make any sense? I hope I haven't offended anyone, and I don't know if other parents of kids with special needs, or kids with autism feel like this, but it is how I feel. So if you ask me what to tell you to tell your kid about Sam's autism, I may say I don't know. I'm not in charge of autism PR. I do have a child with autism, and it is a distinct part of my life, but it's just a part. Ask me what he likes to do (swim), or eat (pizza), or whether he understands what we say (yes, mostly, when asked in a direct and simple way), and is he happy (absolutely!). But I am not an expert in autism, and all kids on the spectrum are different. So I can only share my experiences. which I might do, if you are very nice and I'm in the mood.
I think I kind of understand your annoyance at the question. And funnily enough, I think David would feel the same as M about people who asked. I joined a mom's group and at a recent event, a mom point blank asked me (I'd only met her once before, and didn't talk to her at the previous event) whether Julia would ever walk (she still can't sit unassisted, so was just playing on the floor, mostly on her back).
ReplyDeleteI still can't figure out how I feel about it. In one sense I'm glad that she asked, rather than 1) talking about Julia behind her back and 2) pretending that it is totally normal for an 18-month-old to just be lying around on the floor. But then there is the other part that thinks, well why does it effing matter? I understand the curiosity; I'm sure if the situation were reversed I'd wonder as well. But I wouldn't ask, especially not of someone that I don't know!
And I think it is the same thing - it is clear that Julia is "different", and I don't want to pretend otherwise. But at the same time, she's "normal" - she is what she is and can do what she can and cannot do. By focusing on what she can't do - or even when family comes and continually comments on what she is doing better than their last visit - just puts attention on her different abilities than what she can do. It really shouldn't be that hard to roll her into whatever is going on. I mean, Gabrielle seems to understand, without us being able to explain to her, that there are things Gabrielle can do that Julia can't, and she's figured out how to compensate - she'll bring Julia toys, she tries to help Julia roll over, she even tries to forcibly put toys in Julia's non-dominant hand, like she's seen us do.
Anyway, sorry to hijack your post and comments! Apparently I have been feeling like talking about this too but had nobody who would understand!