Before talking about where we are now in terms of communication, I need to take a step back and talk about how we got there.
In my last blog, I talked about Tyson using PECS (Picture Exchange Communication System) as his primary method for communication as a toddler. In addition, we supplemented his language development with a lot of visual aids and some very basic sign language.
From toddler to preschool age, we focussed on teaching Tyson the sign for more, open, all done and bye. Signs that are easy to do and easy for most people to understand.
Tyson still uses the sign for more to this day – more chicken nuggets, more pushes on the swing, more electronic time.
In addition to this basic sign language, we filled our house with all sorts of visual aids. We had a First/Then board, a daily visual schedule and pictures of the toilet (for potty training) everywhere. Common items in our house like the fridge, the bed, the door, and the TV were labelled with cue cards. As well, each drawer in Tyson’s bureau had the word and a picture of the clothing it contained.
As Tyson’s interest in letters grew, I used a Bristol board to create a giant alphabet, paired with a picture to represent each letter. Sometimes we would play a “game” where I would give him a picture, sound out the word and he would have to match it to the correct letter.
I consider us very lucky that Tyson developed such a love for letters (and numbers).
We had thought about switching to an electronic app when Tyson was about four. We tried a free communication app called Sounding Board but after finding the iPad in the sink filled with suds and water, we were hesitant.
We could not replace iPads on a weekly basis.
Although PECS had given Tyson the ability to communicate, it only gave him a voice for what was currently in his binder.
A voice for what I thought he wanted.
PECS was also labour intensive.
Take a picture of the item or use a google image.
Size it to the right dimensions for the binder (cause lets be honest, I am a tad bit anal).
Cut it out.
Cut it out again (after laminating).
Put Velcro on it.
For 100s of little pictures.
And those little pictures got lost all the time. Every time I swept under the couch I would find one. I was constantly inspecting Tyson’s binder to ensure that all the pictures were there.
Before Tyson started school, I felt the need to give the electronic app option another try. This time we decided on Proloque2Go and have never looked back.
Proloque2Go is a symbol based app that has hundreds of preprogramed words, along with the ability to add custom icons and folders. The main screen for Proloque2Go focusses on core words (verbs, adjectives and pronouns) which is very different from what we had used in PECS which focussed on fringe words (nouns).
There are generic folders generated by Proloque2Go for categories such as food, colors, numbers, and places which I can customize specific for Tyson.
I also created custom folders for such things as family members, TV shows, school, homework and home items.
As Tyson became more proficient with Proloque2Go, he learned how to add his own icons. He would take a picture of the cover of his new books and type the book title for the label.
Proloque2Go also has a qwerty and alphabetize keyboard to allow the user to type their own words, independent of symbols.
Tyson will also use the search feature if he doesn’t know how to spell the word but knows the beginning letter. He will often add a vowel after the letter to help him find what he is searching for (ie ba, be, bi, …).
His brain is just amazing.
Proloque2Go has given Tyson a voice.
A voice that is not limited to what I think he wants to say.
I think when I describe Tyson’s ability to use Proloque2Go to most people, it gives them a false sense of where he is, communication wise.
We still have a long way to go.
He is able to repeat back what we say using his iPad but independent speech, outside his own agenda (DVDs he wants, places he wants to go, snacks), is really rare.
On Friday, when asked, he told me “watch movie school” and spelled it all independently, but he couldn’t tell me the name of the movie.
Now I’m sure he knows which movie they watched but yet, he struggled to answer the question.
Questions are hard.
Communication is hard for kiddos with autism.
Last week I was helping Lincoln with homework and Tyson was angry that electronic time was over. He used his iPad to tell me “cry”. Every 10 seconds or so, we would hear Josh (the voice on Proloquo2Go that Tyson uses) say “cry”. But Tyson wasn’t actually crying, he just wanted us to know he was upset. When me and Lincoln would look into the living room, he would pop his head back down so we couldn’t see that he actually wasn’t crying.
It was cute, sweet and a little sad all wrapped up into one.
Sometimes I think we are not doing enough to help him develop his communication. And other times I think I have the poor child drove with my expectations.
But I do not worry about it …. I know he will get there.
I can see us in the future having a grand chat through text.
And it will be great.
And I will look back on this time and marvel at how far he has come.