tbt: On Being Typical and Not-So-Typical

This post was originally published March 11, 2013.  I am re-posting this today because I am remembering a time that inclusion in school seemed more possible. 

I visited Thorin’s school last Friday. My being there was two-fold: I volunteered in the computer lab to help kids in his kindergarten class and he and I did a co-presentation using his mini iPad tricked out with Proloquo2Go™ (a augmentative and alternative communication (AAC) solution for iPad, iPhone and iPod touch for people who have difficulty speaking, cannot speak at all or are not easily understood by others.) That’s as techy as I will be in this post.

I had only volunteered one other time at his school. I need to do it more and not because it is the ‘do-gooder thing’ to do. Being around twenty other kindergartners that do not have Down syndrome makes me realize – something I believe but do not always know – our son is not that different.

Thorin's first day of kindergarten

Thorin’s first day of kindergarten

The Computer Lab

The teacher gave strict instructions as she left me alone with half the class in the computer lab that: “Everyone only does math games on the computer.”

Except for this kid who was wearing a sweater vest and made it quite clear he is not a ‘Tom’ but a ‘Thomas’ they all tried to get onto other programs.

So, mostly I busted everybody.

“Did you hear the Ms. __________? Only math games, right?” (Me, trying to sound cheerful and fun.)

You know what I got? I got “eye rolling” and not so subtle “side glances” to each other messenging: “Who does she think she is?”

I was also treated to the most unrepentant farting ever. To one kid I asked: “Say, do you think you have to go to the bathroom or something?” (I wanted to say “Dude! Did you just shart?”)

There wasn’t one thing in that room I don’t deal with on a regular basis at home.

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About Proloquo2Go™

Ward and I attended a conference through our local Down syndrome parent’s organization where we learned about Proloquo2Go™. It is a software program that has images and a voice. The voice we selected was “typical boy”. You can use pre-loaded images or take photos. You install it on an iPad.

I do not write much about Thorin not talking or his not talking well enough to be understood.  What I will tell you this minute: Talking is just one aspect of communication. Being understood is everything.

Adults and children alike tend to think because he cannot convey his thoughts he cannot understand. Here’s a tip – assume people who do not speak can understand. Talk to them in the same manner as you do anyone else. The result – my kid feels respected and I don’t think you are an insert-some-swear-word-here.

This application has served us well at home on a number of occasions. It has facilitated major break throughs with regard to communicating emotions. For example, Thorin tried to bite a kid at school. (Thankfully, he just left a little saliva on her pant leg. His teeth did not make contact.)

Using the program at home Thorin was able to tell me the girl he was upset with was at the same time both “mean” and “happy”, prompting him to try to bite her.  It took me a minute to realize he had just described “teasing”. There was a rationale for his behavior. I now had “context”. Focus then became “Get help, before going all Bite-y and shit”.

I figured out who the girl was during computer lab. In the course of ten minutes she almost got punched by a couple kids and three kids moved away from her. She absolutely did not deserve to get saliva on her pants leg by our son but I did want to tell her things will be much worse at the women’s correctional facility later in life.

Thorin and I rehearsed our presentation for school the night before.  We decided which buttons he would share – name, birthday, sister’s name, dogs names, etc. he had two additions to make unsolicited. He wanted his class to know he likes “flying in airplanes” and he wanted to talk about “feelings”. The feelings one really surprised me. I went a little overboard in my praise, “You want to talk about feelings!”

Ward gave me the “settle down” look. Ward’s only other advice was that we not dress alike for the presentation.

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The Presentation

I conferred with my co-presenter briefly before we walked to the head of the class. The Star of the Day, Colin, shared the stage with us. Colin placed the iPad under a camera that projects to a screen. Thorin hit the first button – “I use an iPad to talk.”

Literally squeals of excitement. It’s a great age because the boys are still squealing then, too. Thorin ran through the repertoire pretty much as rehearsed.

The feedback was immediate with each button:

“I didn’t know you had a sister, Thorin!”

“What?! He has a dog named Walt?”

“Your best friend’s name is Ella!”

In preparing I hadn’t planned on what the reaction would be. Each little piece of information seemed a delight and precious to them. Our son was so happy and excited with the response. Giddy, really.

It was in a word ‘a moment’.  And – if you do indeed see your life flash before you when you die this will be one of mine.

Everybody in the class wanted their picture taken and put in the program with their names. More squeals after each was entered and listened to.

Colin came up to me as I was packing up.

“So that is Thorin’s iPad?”

“Yes.”

“Only his, right?  He uses whenever he wants?”

“Yes.”

“Do you use it?”

“Not really.”

“I can’t touch my mom’s Kindle. Wow. Thorin is so lucky.”

6 thoughts on “tbt: On Being Typical and Not-So-Typical

  1. The non verbal communication piece is absolutely fly on the wall for our house. My son “talks” to us in his own way. Most of his very limited vocabulary is only understood by family.
    We’ve had proloquo ready for him for a few years now but the school have only just agreed to use it (with a year to transition to High School).
    happy to read again of Thorins success in his presentation.

    • Why do schools find it difficult to accommodate technology? They have computers, laptops, iPads, smart boards, etc. But making it possible for someone to participate is a thing for for them.

      • Probably down to existing skill sets so it will change as our techy youth become teachers. There is still an inertia there though.

  2. Very beautiful moment to have in reserve.

    Ms. _______ limited imagination pisses me off. Why use a computer “only for math games?” If they’re only going to use the computer for math, and she wants them to use technology, then use a damn calculator. Good grief!

    • It doesn’t speak well to the use of technology period in a modern day class room and more importantly it doesn’t encourage inclusion. The message to my son is: You are too much work.

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