Thursday, May 28, 2015

This is all the things Mr F can do with his life right now. (Life With Unicorns)

This is Mr F's "Want Board."  Mr F still doesn't talk much, and only when prompted to do so. So when he wants something, he resorts to creative ways of getting it.  Like bringing you a candy bar for him to open, or pointing your hand towards the computer, or getting his shoes on and trying to 'throw' your hand at the keys up on the shelf.

We used to have a program on our iPad to try to help with this, but that program never worked so well.  For one thing, it was really complicated for him to use -- you had to go through several screens to get to the thing he wanted. If he wanted Cheese Puffs, say, he would have to open the program, then tap "I Want" then "Something To Eat" then "Cheese Puffs."  That's a lot of work for a cheese puff that is in the cupboard right above where the iPad charges.  Plus, if Mr Bunches was using the iPad, the program was unavailable.

Also, the iPad broke when Mr Bunches got frustrated one day and tossed it on the ground.  He got a lecture, and we had to buy a new tablet that wouldn't support the program, which wasn't that good anyway and cost a LOT of money.  The program, called "Proloquo2Go" costs $249.99. 

(That's a side not about autism and other special-needs -isms: things marketed to parents of those kids are almost ALWAYS overpriced. I suspect it's because of the guilt parents feel. A teacher says "Get this Proloquo program and Mr F will learn to communicate," and then you see it's $250 bucks, and you think WOW! but then you think I have to get it or I'm a horrible parent who is going to hell."  Consider this site, which sells 'teethers' for autistic kids. Mr F likes to chew things, and we buy him teething toys to help with that.  That site's "cool" teethers cost $12.99 and up, including an AMAZING $15.99 for silicone bracelets.

Regular baby teething toys -- not marketed as being somehow "cool" and appropriate for special needs kids -- start at $2.96 on Amazon. And you can get a pack of 24 silicone bracelets with inspirational sayings for $6.25.)

So rather than shell out another $250 for a program that wouldn't work well and which wouldn't always be available, we started taking pictures of the things Mr F likes, or which we think he might like.  $15 at the Dollar Store and a couple of hours of printing and gluing later, we had the "I Want" board, featuring such activities as "Go For A Ride In The Big Car."

So far, it has not caught on very well with Mr F, who naturally prefers the old way of doing things.  But we're working on it.

One of the things we keep doing is expanding it; our next task is to take pictures of the playgrounds we take them to, so he can pick a playground if he wants to go play somewhere.  We've got to add "bubbles" to the pictures because sometimes he gets in the mood to have me blow soap bubbles for him -- like yesterday when he watched me do it and popped them for thirty minutes.

At first, I looked at the pictures we had and got sad, because as the headline said, Mr F's world was severely circumscribed by what pictures were available: if he couldn't find a picture to say it and couldn't find a way to pantomime it for us, he couldn't do it.  We take him for rides, for example, and we have several different routes we take, that go by the Capitol or through farms or just around the neighborhood.  Mr Bunches knows how to ask for a particular ride.  Mr F does not.  So he's just stuck with what we choose for him, until we figure out a way to label the rides in a way that he can use.

He's getting more creative at telling us he doesn't like something.  If we put a movie on the TV that he doesn't like, he'll try to turn the TV off, and if he can't do that, he'll go stand behind the TV so he doesn't have to see it (the TV is up against a wall, so that's a bit tricky, which is probably the point: we move quick to change it rather than risk him knocking over the TV.)

After a while, though, I felt less sad for him, because the more pictures we put up, the greater his horizons will be.  Most of us take for granted our ability to communicate what we want, or need.  It's really daunting to realize that Mr F (who gets easily frustrated and we suspect that this is part of it) can't communicate even 1/100th of the things he might want to do in a day.

Try this:

Picture everything you did yesterday.  Now imagine you are an 8-year-old.  What things would you have needed help with, and what things would you have had to ask someone to let you do or do for you?

Now imagine asking for them without using a single word.  How would you do it?

When I think of the sheer number of things Mr F seems to like doing or might want to try -- go play in the yard, go for a walk, get french fries at Dairy Queen instead of McDonald's, find a particular book, go to swim in the lake or the pool or the other pool on the far side of town... -- it seems an almost impossible task to take a representative picture of them all, but, then, it seems worse not to try.

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