On being Typical and Not-So-Typical

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.

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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.”

10 thoughts on “On being Typical and Not-So-Typical

  1. so amazing. thanks. I loved several things.
    * When I want to say: Talk to him, regular, dude. Thanks. Don’t assume he’s an idiot just because You can’t understand.
    * When my boy wants to say: Settle down, mom.
    * I love the mutual delight the children share, when they do.

    I wish we had the ProLoQuo 2 sooner …. I was still all Waldorf and avoiding any media! So the preschool years were great, children all doing the group play and meals and outings and what not … but already by the time the children were getting ready to go into first grade, and then especially at second grade, a few of the boys were also getting ready to leave Coco behind. They didn’t want to ‘play with a baby.’ They didn’t like that they couldn’t understand what he was saying. We weren’t in the same school any more, so the opportunities for play dates and social gatherings has dwindled to nil.

    I was particularly disheartened one day; we went to a school show, open to the public. Coco and I sat in the balcony, and then went down at intermission, when Coco saw one of his familiars, a boy who was in the same preschool with him for several years. Then it was time to go back for the rest of the show. Coco wanted to find the boys to sit with them. So we did, walk down to the section where the boys were seated — and too late! I realized that the two boys were actually scooching on the ground between the seats to hide from Coco! Who didn’t notice, because he was so happy to have found them; the boys, however, saw me seeing them, and they realized their error. They all took their seats, making room for Coco, and watched the rest of the show. Those two boys didn’t look at me or speak to me again. I did describe the scene to one dad, and his understanding of the scenario was that the two boys are fast friends and of an age for falling into cliques, and both boy’s parents are having marital issues, so a lot of misbehavior is appearing. Coco and I rarely see those either of two families any more. So I regret the falling away, the isolation that grows. And I still keep trying to find activities that we can share at will, without waiting for invitations.

    And we have started the use of an iPad 2, with ProLoQuo 2 — Coco prefers to just watch movies, of course … but people have noticed since we started using it at Christmas, that his speaking is more understandable. Hooray!

    Thank you for your writing, for your sharing.

    • Why couldn’t that dad just suck it up and say “Sorry” to you?

      I think if most people knew just some acknowledgement goes a long way.

      Thanks for writing!

  2. Pingback: A Picture of Down Syndrome, in So Many Words | Thoroughly Modern Messy

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