Tag - sensory

Tuesdays With Sam
Worshipping at the Temple Grandin

Tuesdays With Sam

Should I tell you about walking in to get the boys’ up and how I found Sam decidedly not in, but out of his crib and standing in the middle of the room — this despite a zipped-up crib tent? Oh, I know! How about the head-banging tantrum he had in the grocery store where I plied him with M&Ms if he’d just be quiet while the other customers in line glared first at me than tsk-tsked at his chocolate-smeared face? How about the inexplicable mourning, the loud wailing, as we sent “Mommy’s Car” through the carwash? How he screamed “No, Mommy’s Car, Come Here!!!” and then body-dropped by the window as we watched it enter the suds?

All are stunning events in their own right, at least in this mommy’s eyes. We have been getting some one-on-one time these days while John has his O.T. appointments. Some of it seems like typical behavior at this age: a tantrum in a store, (finally) climbing out of a crib. The hysteria about the car, though, hmm… not so sure. Sam is growing and changing so fast that I’m afraid I may discount his autism, or rather “forget” it when he still needs me to be vigilant, to always keep it under advisement when we’re out and about and he is not coping so well.

I sometimes look at his beautiful face, especially when he’s out of control — he’s learned to yell, truly a skill — and I’m reminded oh, yes, I did forget. And I feel sad that I’ve not remained on top of this, that I’ve put so much “high-functioning” on my poor son’s shoulders, all because he’s not AS autistic as his brother.

My Tuesdays with Sam help open my eyes.


Over the weekend, we took J&S to a birthday party for a little boy in our neighborhood who was turning 3. Sam has been to many in the last few months — quick little affairs that were more playdate than party, but John has ABA just about every Saturday and so has stayed home with his daddy.

A little history: We went to our first birthday party last summer. Held at the Little Gym, it was full of loud, boisterous children and structured into dance time, singing time, and sitting-to-eat-pizza-and-cake time. In short, everything that my boys hate. It was one of our first big outings where there was a large group of neurotypical children and we were barely one month into hearing our diagnoses.

I’m sure it wouldn’t surprise you to hear that it was rough all around.

When all you see and know every day is your own children, it can come as a shock to meet their peers and see how much more they’re saying and doing. Both boys were overloaded with sensory stuff and tantrummed pretty badly. Because of their food issues, they refused to sit at the table, nevermind try birthday cake. Back then, we had yet to hear even one word out of their mouths.

I remember a lot of stares, a lot of open mouths. I remember two little boys who kept seeking the exit door at every opportunity and the non-stop stimming. I remember feeling red-faced and hot and incompetent. Both of us were relieved when we were able to duck out, saying our goodbyes while each trying to restrain our respective child.

So yesterday’s party inspired a bit of apprehension. There were 15 children expected and it was being thrown by a party company. What if the boys couldn’t handle the decibel level? What if they threw a fit as soon as we arrived. Did I really have the energy to face 15 sets of parent faces?

I shouldn’t have worried.

I should have given us more credit: we’re all much better at this. We take their lead, structure be damned. They don’t want to dance in a circle? Who cares. They’d rather take our hands and lead us around and around the house? Okay. The idea of sitting at a table to eat pizza is their idea of hell? Ours too.

And when a few moms looked at me while I tried to calm J., I just smiled and told them he was tired, while I watched their neurotypical kids have their own meltdowns.

Of course, we are nearing one year since we first heard the word “autism” ascribed to our sons — last February when they were just 18 months old. So as hard as life can sometimes be, there’s been a whole lot of growing going on.

And a whole lot of acceptance.

Worshipping at the Temple Grandin

This past week I went to hear Temple Grandin speak. Ever since entering the world of Autism, hers is a name I’ve heard a lot about and I was curious to see what she had to say about growing up autistic. Even though the title of the lecture was “Animals in Translation: How Animals Think and Feel,” I found her mesmerizing. Rarely have I attended an event where the speaker had my complete attention. She spoke easily and authoritatively on her autism and seeing the world from an animal’s point of view. (you can hear her webcast here)

In addition to this gem: “Aspergers is just a medical name for a nerd,” (she really was funny…ah, would that it be so), she talked about horseback riding therapy and said she has heard many a nonverbal child utter their first word atop a horse. (Is two too young to start?) I got the chance to speak with her briefly afterwards and found she’s a big proponent of the GFCF diet. I’m seriously considering this as John’s stimming has become more and more constant.

The more she spoke about being able to see the world from the point of view of animals, the more I thought about John’s sleep issues and wondered if I could somehow “see” what he’s seeing when he awakes so loudly, so abruptly. Is it too dark? Is it too bright? Is he cold? Is he hot? Is he scared?

That is how I came to change the nightlight in their room to a smaller one with a softer glow.

That is also how I found myself at my dusty old sewing machine creating a weighted blanket with beans (the first, at 5 pounds, was way too heavy; the second, at 3 pounds: just right) that has really seemed to make a difference. Three straight nights without a wakeup…!

(crossing fingers now)

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