I Don’t Get To Make Those Decisions

Do you know what happens around here next Monday? Back to school! Hoo-ray! I do have to tell you though, that the week before the kiddos go back to school is extremely hectic, what with all the sneaker buying, and searching for orange pocket folders, which Target DOES NOT carry, but that more than one school specifically asks for on their “donation” list. We also have intake meetings and open houses, and trips to find new skates for Jack and his two-sizes-larger-than-his-skates-feet.

Plus, I am giving a talk to the teachers at Quinn’s school tomorrow (this?) morning about autism and education, so I’ve been busy trying to write something that makes me sound smart.

Shut the fuck up, jerks. I can too sound smart.

I mean, not in ^ THAT paragraph, but…

I do intend to tell you some stories about our very fun trip to California, but first I want to tell you this story about our trip to the mall today.

We bought sneakers and then went to have lunch in the food court. My kids were eating and I was trying to think of a way to get to the ice cream shop without passing either a GameStop or the miniature mall train, neither of which I wanted to spend money on. (Turns out it is impossible. All roads lead to GameStop.)

So, we were doing that, when Jack made this hooting/moaning/shouting noise that he makes sometimes. It’s not an uncommon noise and it’s not an unhappy noise coming from Jack, but it is one that most people probably don’t expect to hear in a food court.

I have heard this noise a lot, but it seemed to be escalating in frequency lately, so I stopped and asked him, “What does that noise mean? Does it mean you’re happy?” Pause. “Sad?” Pause. “That it’s too much?”

“Too much,” said Jack.

Ooooh. Interesting.

“What is too much?” I asked.

“The music,” he said, followed by a long pause. Then, “the talking.”

I stop and listen. To me, the food court is the exact definition of cacophony. It is loud, it is echoing, it is downright horrible, but to me it is hard to even distinguish individual noises. Until Jack mentioned the music, I hadn’t even noticed there was any playing.

I tell him I understand and then I think about the noise and how it isn’t a noise that most people tend to make. And I start to say to him, “Instead of making that noise, maybe we could have a code word for when you are too overwhelmed…”

And then I stopped.

Because I had just reread Quiet Hands that very morning. And it was fresh in my mind that not allowing free expression, even in unexpected (by NTs) ways is maybe more disabling than anything else I could do.

So I paused and then I asked, “Does it make you feel better to make that noise?”

And he said, “Yes.”

So I said, “Good,” and the subject was closed. Because who am I to say what noises he can and cannot make in a cacophonous food court? I’m not him. I don’t get to make those decisions.


If you’re dying for a sneak peek at our trip to California, you can start with this story about me trying to find a doctor for Jack when he got an earache on vacation. Turns out that technology (and antibiotics) saved the day!

40 thoughts on “I Don’t Get To Make Those Decisions

  1. Just wrote a comment which seems to have got lost in the ether. Just wanted to say how lucky those teachers are to have you talking to them today. And how lucky Jack is to have a Mum who has your understanding.

    Our youngest needs to pace around to allow him to focus his thoughts. He also has some hand actions that are not NT. When he uses them he can think. When he had to sit still in a classroom (with quiet hands) he found concentrating almost impossible. That is how we unexpectedly ended up as home educators. The very BEST stories/poems/insights he has ever produced have been since he’s had the freedom to pace the sitting room floor, flap his hands about as he thinks and chat to himself as he gets his ideas straight in his head.

    Schools need to allow our AS kids the freedom to express themselves in the way that works for them. Only then will they fully see what amazing, insightful, original and creative thinkers they have in their classroom.

  2. Sometimes I think we live the same life! We did all of that back-to-school stuff last week. I agree on so many things here–especially that all roads lead to Gamestop.
    My son makes a similar noise to Jack’s…same reason, too. I have also decided that if it helps him cope in chaos, more power to him…cacophony drives me batty too…so maybe I will join in.

  3. unexpectedly. . . strangely, but also perhaps completely understandably, those last three or four paragraphs made me well up like a goddamn little girl.

  4. What a great comment. You’re right on. Two out of my three kids had to pace to give the answers when I would orally quiz them on spelling words.

    It’s also interesting how strong the compulsion is as a parent to have them act like the typical people. It is something I have to be a lot more conscious about.

  5. That goddamn GameStop. :)

    And, yeah, good idea. Maybe I should try making that noise too. Maybe our kids are on to something here.

  6. A nurse told me I was making the wrong noises when I was giving birth. I was not screaming or swearing. There was a little swearing after she said that. A noise can’t be wrong if it’s the noise you need to make. If you can’t make the noise, it will pop out somewhere else.

  7. So interesting. C has a new thing in which she sniffs deeply in order to clog her ears “because it makes it not so loud”–“it” meaning the world. The sniffing is a little (lot) off-putting, but I’ve been torn about discouraging it because she has worked out a strategy and is that wrong? (Assuming the pressure on her eardrums doesn’t lead to permanent loss, that is.)

  8. I love this. In my NT mind I do tend to assume that Moe’s sounds are an attempt to communicate his discomfort, rather than being a source of comfort in and of themselves. This was a great reminder, and I’m so proud of you for taking this approach. You rock!

  9. There is a young girl in my church who is non-verbal and she makes a noise like that every so often during services. No one is really bothered by it. Everyone just lets her make her noise and life goes on. Except me… because I like to believe it’s because the speaker has gone on way too long and she’s trying to signal them to wrap things up… and I want to join her in making that noise.

  10. This is the first time I’ve visited your blog, and to be quite honest, this actually brought me to tears. Not because I’m sad, of course – no. Actually, it’s just the opposite. I am an autistic woman who remembers so very clearly being shamed for stimming, being yelled at, told to be quiet, or even having my hands held to stop me from stimming. I recall the message that sent, and you are choosing to send a different message. You are choosing to say to your child that “hey, you’re all right kid, just the way you are”. The adults in my life who sent that message to me when I was a child were few and far between, but I have never forgotten them, not a single one. Thank you for listening. Thank you for understanding that your actions have consequences.

  11. Wow, that’s so great he was able to communicate his feelings to you, and your response was awesome. I had a similar conversation with my 5yo son last weekend. He’s a headbanger, fortunately he only bangs his head on soft, cushiony surfaces now. He has been banging his head a lot since school started. With his language delay he has never been able to tell me why he bangs his head. So while he was head banging I asked him if it made him happy. He replied, “yes it makes my truth happy”, then I asked him if he was ready for school tomorrow. He surprised me when he said “no” and told me in detail why! In his words “I scared” “Cafeteria’s like a curve.” ” So it makes people loud from me. So its loud at people so they’re talking with their loud and stomping their feet.”
    My feelings about our conversation are conflicted. I was so happy to hear him tell me about his experiences at school, and happy to know his head banging makes him happy. But it makes me sad that there are things that are giving him stress.
    Anyway, this post made me smile. Thank you for sharing!

  12. I avoid malls brcause of all that noise. The world is noisy enough as is. Good job, mom :-)

  13. As an adult who just survived a 7 hour meeting by pacing, taking an unusually high number of bathroom breaks, and no small amount of finger flicking, I salute you!

  14. Oh I love, love, love this. I often wrestle with the things that Ashlyn does and trying to help her find a more “socially acceptable” way to express herself but then I also thing, how nice it is to be who you are and do what you want to do without being concerned about what other people think and do I really want to change that in her? Going to read Quiet Hands now…

  15. I just caught myself doing something like that with Joshua. At meet your teacher day, his teacher was asking him if he was excited to start kindergarden. He shuck his head yes vigorously, and I caught myself telling him to use words. Thought about your post and kept my mouth shut next time he did it to another teacher.

  16. You are all kinds of awesome. I’ve got a NT Kid who is a screamer when she gets mad. I’m not saying I’m going to,let her scream, but I am going to think about WHY she is screaming and see if there is a way I can at least acknowledge her displeasure.

    Also, you are giving a talk to the teachers ?!?! That is fantastic.

  17. The kind of environment that most schools seem to be creating appears to be one in which obedience to seemingly random rules set up purely for the convenience of the teacher is more important than creativity and learning. And I suspect that’s not good for anyone, not even the NTs.

    Does anyone know if Waldorf/Steiner schools are any better?

  18. I love your response to Jack on this one.

    I just took my (“NT”) kid to participate in a research study. A RESEARCH study — not a test or an interview or a performance. And I run research studies with kids, and I know how different they can be. But I was practically stuffing my hands in my mouth to keep from telling him how to behave, and trying to talk myself out of being embarrassed by his odd behaviors (which were his response to a boring and slightly stressful situation). “Less-typical” kids have a lot to teach the rest of us about dealing with our kids’ quirks and individual needs.

  19. I think it might depend a bit on the school and on the teacher. We tried a Steiner school for a term and a half with very mixed results. It was from there that we moved into Home Ed in fact.

  20. I love this post and the comments! Since I’ve been reading your blog, I’ve been a convert to the pro-stim mindset. Trouble is, my oldest daughter has anxiety and bipolar disorder, and when my son on the spectrum is stressed (like every time he does any homework), he stims by making lots of noise – typing as if he’s trying to kill the keyboard, rolling the computer chair repeatedly into the cabinet, etc., etc. As mom, I can ignore it, but my daughter becomes very stressed and yells at him. I’ve explained to her all I can, and her response is that she has needs too. I can’t send my son to a private area, because we have to keep the computer in a public place to monitor him. He has to use the computer for homework. What to do???

  21. I totally get this. I struggle with this too, both for myself (OMG, please be quiet!) and my other kids, who object for their own sensory and calmness needs.

    The way I deal with it is I try to teach Jack (or my other kids when they’re the ones being “offensive”) that it’s okay to make those noises and what not, but you also have to gauge how those around you feel. Sometimes I do suggest that he “make the noises inside his head” instead. Or I will tell the siblings (and myself) that he (and they) are allowed to make noises/say what they want and they have to find ways to cope and get along.

    It’s not a perfect system and I get yelled at a lot. :)

    I guess I sort of see my family as a microcosm of society and it’s a safe space to learn that sometimes you can stim and be loud and sometimes it’s nice if you try to let others have quiet.

    Does that make sense?

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