Autism Anywhere & Everywhere, & in the Mall (#540)

This upcoming year is the year that Charlie will be bigger than me. I used to fear this and phrases like “what will I do when my child is stronger than me” are the kind of thing you hear parents intoning along with talk of a cure for autism. I understand where these parents are; I have read of parents who have been aggressed against by their own children and made certain choices. Just tonight when Charlie and I were at the mall, he cried out after I had explained once again that we were not getting sushi there and would go home for dinner, and then he was on the floor and I was racing to put my hands under his head, and then I looked up at the three uniformed security personnel who were standing above us and offered help, along with a nurse and two doctors.
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I had explained to Charlie before we left the house: “You had sushi yesterday for dinner, you had it for lunch, not tonight.” He had gotten off the bus all smiles, was in great spirits during his ABA session, smiled still when we got stuck in traffic. I had not factored in Charlie’s sense of order in the world (which seems, of late, to mean that if we got out in the later afternoon, he gets sushi) and his need to see what is going to happen in the form of a picture schedule. He has been doing so well, at school and at home, and I had made the mistake of presuming that words could explain things to him.

Words did not, and then there I was trying (in a raspy, sore-throated voice) to explain why my large child was lying on the floor saying “sushi”: “He’s autistic. It’s like a seizure. He gets really anxious. Yes, he needs to get up.”

“My friend has an autistic child. You go through a lot,” said the female doctor and touched my arm.

We got Charlie up and down the escalator, where down he went again. The other doctor, an Asian man, was now standing by and looking very concerned. I tried to explain to the uniformed security personnel (who were very polite and quite kindly) that they ought not to hold onto Charlie too tightly or he would get even more scared. He sat silent and sad for a minute before being half-lifted up and then we two walked through the cosmetic section into the cool night air.

All tough feelings dissipated in the car; at home, Charlie dug into peas and noodles as if that was just what he had been envisioning all along. I thought of how important it is for him to be able to go out, even more so now that he is getting older—of how necessary, essential, it is for him to be able to go anywhere and everywhere, for him to be seen and not hidden away unless he can act only “appropriately.” Flopping down onto one’s back is not something that ought to happen on a regular basis —-but I hope Charlie and I will be able to return to the mall, and to nod at the uniformed security personnel, and to walk and look and say as much or little as needs to be said. I think we can do it.

Especially over the course of this next year. A big boy, an autistic boy, needs to be able to go wherever he so pleases to—to go anywhere, and everywhere.

For more images of autism anywhere and everywhere—-of Posautive Autism—see Kassiane’s video selections.

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Comments
8 Responses to “Autism Anywhere & Everywhere, & in the Mall (#540)”
  1. Lisa/Jedi says:

    Wow, again, Kristina… We’re in a similar boat with our kids’ sizes, as Brendan is within 5 inches of my height & well over 100 lbs. Although Brendan’s difficulties that cause him to lose control are most likely to happen right at bedtime (at home, with 2 parents & plenty of soft places for him to land), he has started having overload issues at school with the attendant concerns for his safety.

    I remember vividly my overwhelmed feelings 4 summers ago when Brendan’s OCD became a “main player” & we were completely unprepared for the extreme anxiety it gave him. It was attempting to prevent my big-for-his-age boy from from hurting himself that made me realise that we needed to get a handle on things before he was too big to physically restrain, & set us on the path to understanding. What I have learned is that keeping a respectful attitude toward Brendan no matter how he’s behaving gets us through the rough spots quickly & with less injury (of bodies & dignity). This allows him to continue to feel all right about himself, & that he’s not bad for occasional behaviour that arises from circumstances beyond his control. It has taken practise, but we get plenty & it’s becoming habit.

    It seems to me that we are the ones who must role-model appropriate responses to our kids’ behaviour for those observing in public situations, so your being able to explain Charlie’s behaviour calmly (in words of one syllable) 🙂 likely made the biggest impression. I’m glad that your goal is to go back to the mall. We have to acknowledge that we’re not always going to be perfectly prepared for every situation, such as anticipating things that can trigger meltdowns- we’re human, too. 🙂 It takes practise for us to learn to keep a cool head in tough situations, but our world needs the message that our kids are “safe” no matter how they look or behave. So going out in the world is the only way to learn to function in it. Once again… you go, girl! 🙂

  2. Lisa, thanks so much—I have been sitting here tallying up what I should and should not have done (like bring him to the mall in the first place—it’s not the best place for him, too many lights and very over-stimulating). I have been wondering too if these anxiety attacks are part of Charlie’s getting older. As he has aged, the anxieties seem to increase in some ways, perhaps because he is so much more aware of things than he was when he so much younger. Seeing your photos last night (and reading your words) really picked me up—thank you.

  3. Eva says:

    I remember a situation where I was swimming with an autistic girl. It was summer and hundreds of people lay in the sun and had fun in the sea. It was time to go home, but the girl loved the water and do not accept to go out. I explained so many times that it`s getting dark and we have to go home for lunch but she was very angry. Then she ran out of the water, throw herself at the floor and knocked her head against the stones. I tried to hold her tight with all my strength because she was bleeding. And when I stopped her doing this I looked up and there were some people around me. They were very angry and said I had to get off from this little helpless girl …. because they don`t understand I want to help her. That was really strange because I felt blamed for this.
    Ohhhh my english is so bad, sorry!

  4. I am still made incredibly uneasy by the way autistic people’s height and weight is so often mentioned, no matter what the rationale behind it, it still seems like a way of dehumanizing us.

  5. Thanks for pointing that out, Ballastexistenz…I don’t think I brought that point up in this best way.

  6. Oh Kristina, I know. Malls have so many sensory things in them for our little guys, and then add a change to what they want to eat, look out. They do need to be able to go everywhere with us, but I am starting to question if where I take Sam is to my benefit or his. Sometimes it is hard for us to know. Here’s to peas and noodles! 🙂

  7. Eva, I have to say I know how you felt—-I know that Charlie is trying to tell me something when what I have called (not the best way to put it, either), a “behavior” like head-banging happens. We focus a lot on starting with his desire to communicate and trying to teach him ways to do so that do not involve him hurting himself. There is so much he (and the little girl you describe) wants to say……..he tries more than hard.

    To be honest, I am not the biggest fan of malls myself….

  8. gretchen says:

    One day last week Henry “laid on the floor in music class and refused to get up” according to his notebook.

    Bill and I laughed and said we wished we could do that at work sometimes!

    (Henry is gentler on himself than Charlie is, though. He doesn’t throw himself down and hit his head.)

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