“At least your kid talks.”
I hear this a lot. It’s meant to check me into reality that the autism I am familiar with isn’t everyone’s. I get it, but here’s the thing. (Hey, it’s a blog. You knew the “but” was coming.)
There’s a difference between talking and successfully communicating. Yeah, my kiddo can now say lots of words. Some are even the four-letter variety that he learned from his dear old mom. I kind of wish he didn’t pick those ones up and that’s my own fault for saying them around him. I kind of also wish that he wouldn’t just decide, “Oh I’m just going to say this certain set of words all day. For everything.” It’s like he has thousands of words in his head and only about 20 or so of them actually come out of his mouth on any given day.
Which makes trying to have a conversation with him really freaking hard! Sometimes I ache just to be able to have a conversation with my kiddo that’s not like pulling teeth. The constant redirection. The fishing for answers to the simplest of questions. All the prompting. It grinds a gal down.
I’m not asking for a two-hour talk about the finer points of his day, but to hear, “It was okay” about how school went would be nice. Or even if it sucked. I would love to know that he was really pissed off that day. “Like they served hot dogs when the lunch menu clearly stated it was pizza day.” A legit reason to rant and rave. He can’t do that. He won’t do that. Sometimes I can only just sense he is mad and it’s a great big old guessing game of what’s wrong. When your kiddo screams “TATER TOTS!” again and again for an hour, you start to question why you are sending him to speech therapy to get him to talk in the first place.
There is the constant need for me to be his translator to everyone we meet when we are out and about. People will ask him a question like his age or where he goes to school and I can just hear his force field shields going up. He’s just staring at them in stunned silence or even better, totally not looking at them at all and suddenly singing “Feliz Navidad.” Then I get the look of either “What’s up with this kid?” or “Oh my god! Your kid is so rude.” Nope, there’s nothing wrong with him. He’s just autistic, blah, blah, blah. And I have to prompt the kiddo to respond.
I’ll admit it. I’m so tired of having to do this. All the freaking time. Sometimes though, we get lucky and he’ll quote some Pixar movie. If we’re hanging with another family from the autism tribe, they usually can quote right back. That’s always cool when it happens, but those moments are usually few and far between.
I wish your kiddo could talk, too. I really do. I don’t wish for anyone to have a nonverbal child. It’s even harder than what I have on my plate. I know you are thinking, What I wouldn’t give for my kid to drop an F-bomb. I would love for that to happen, too! We could sit together and laugh and bitch and moan and be all “OH MY GOD!! Why did he have to say that in Target????” I want you to have that problem, too. Just realize it’s not the perfect problem. It’s just a different one.
I have to wonder how a kiddo can perfectly mimic the voices from a YouTube clip but can’t order a side of fries for himself at the diner. Or when he can say it, it’s done at such a whisper that no one can hear it and they ask again what he wants. He then gets so upset that they didn’t hear him and he got it wrong that he doesn’t say anything at all. I have to wonder how in the world he will manage at all when I am not there to help.
Then there is the fun of telling him “No” to when he does make his needs known. We badger the living daylights out of him to “use his words” and when he finally does, he doesn’t get what he asked for. This has confused him to no end. I feel terrible when this happens because I know it was a struggle for him to get those words out. There I go, telling him “NOPE.” I know this has to do a number on his head.
None of this is easy and no one has it better than you. That’s what I have to try to remember. Everyone has plenty on their plate and it’s not always what they ordered.
This post originally appeared on Autism With a Side of Fries.
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