Utter Autism

November 30, 2007

Drink Decisions

A few weeks ago the new speech therapist (who we love) approached me about changing the food page.  She’d noticed that it spoke “I want to eat juice”  and suggested that we provide separate eat and drink buttons so he could piece together a more appropriate sentence.

I’m a little embarrassed to say that my first reaction wasn’t to thank her for her observation and suggestion.  I’m a thinker and I reacted by thinking – out loud.  I must remember in the future to thank then think.

Anyway, I told her that juice was all that Adrian drank.  So it seemed to me, at the time, that an extra button for this one option would be unnecessary. 

But then I got home and thought some more.  I realized that despite the fact that Adrian actually drank a variety of beverages, we called them all juice.  It all began years ago when all we had was approximated sign language and a limited number of vocalizations.  He could sign juice and make a vocal approximation for it so everything he drank was just called juice.  Lemonade, iced tea, fruit punch, orange drink, koolaid….. it was all juice because that’s what he could say.

But now he’s not limited by his sign vocabulary.  He’s not limited to the few sounds he can make reliably.  Now he’s got endless options….. or could if we give them to him.

So the I added every kind of beverage Adrian might consider having to the food pages…. along with a drink button.  Now he can, and does, tell us “I want to drink lemonade” or “I want to drink koolaid.”  For the first time, he’s got drink options.

I’m glad we’ve got folks looking at my programming from a different perspective.  I don’t know how many years it would have taken me to realize my mistake.

Goodbye, Robin

Filed under: school — Carol @ 5:33 pm

We had to say goodbye to Robin today. 

It was clear early on that Adrian really enjoyed working with her.  She’s one of those people who just has a gift for working with these kids.  She’s got great instincts and a wonderful demeanor. We’re really sad to see her go.

Still, we wish her lots of luck in her new job.

Thanks for everything, Robin!

November 19, 2007

Music Page


 This is Adrian’s new page for music class.  It took me a good week contemplating all the vocabulary that the music teacher wanted him to have available.  Each of the buttons here opens a box in the center where he can choose from attributes like small or big, red or orange, circle or square, on or under, fast or slow, two or four, loud or quiet.  I tried to include words like ‘a’, ‘the’, ‘I want’, and ‘play’ so he can form complete sentences like “I want to play the big, red drum” or “I want two blue shakers.”

When I’d finished the page, I realized that having these attributes all together might be helpful in other areas as well.  For instance, while playing with the blocks he could ask for “Three small, red blocks” While playing with the doll house he could direct a play partner to “Put the small doll on the bed in the house”   It would allow him to communicate during play in a way that he’s never been able to. 

I’m going to start on the page while I wait for the teacher to give me a list of toys and activities to include.  Back to programming!

November 18, 2007

Back to School… Again

I went to visit Adrian’s classroom last week.  I saw first hand why it’s been such a rough start to the school year.  I kept him home for about a week until we could schedule a meeting to develop a new behavior management plan.  That meeting was yesterday so he’s back to school … again.

I’ve hesitated to write much about our difficulties these past few months.  I hate to sound accusatory, even if I’m not naming names.  But yesterday at the meeting, the school admitted they’d not made this transition as smooth as it could have been.  Knowing they see things the same way, I feel a bit more free about discussing our experiences.

It’s not difficult to see why this new team has had such a rough time.   They were left without proper support for far too long.  The school year started without the classroom being fully staffed.  One of the team members missing was the speech therapist, a key person when you’re dealing with non-verbal kids.  The staff has clearly not been trained in basic sign language or assistive technology.  They did not receive proper instruction in the token reward system Adrian uses or the heavy work schedule that should have been implemented on day one.  A packet of information from Adrian’s old team never made it to the hands of the current teacher so she didn’t have the benefit of those two years of experience with Adrian.  The behavior management plan from last year was not implemented and the new one wasn’t drawn up as soon as they realized there were problems.

The result was a very frustrating couple of months for Adrian and the classroom staff as well.  Without the support a speech therapist in the classroom, they were missing vital opportunities to communicate with Adrian, increasing his frustration level and sparking his aggressive behaviors.  Without regular treadmill and heavy work schedule, he was simply not getting what his body needs to be able to function.   On top of all of this, they increased the amount of time they expected him to sit in a group.  It’s really no wonder that he ended up in the saferoom – yes, that padded room where they isolate the out of control child.

Yup.  It was bad.

But we had the meeting yesterday and hopefully Adrian returns to school with a better prepared team.  They’ve been trained on the treadmill use, the heavy work schedule and proper use of the token reward system.  The speech team is now involved, providing Adrian with his 1:1 speech therapy and giving the classroom support until someone is hired for the position. The behavior management team has, I feel, a better understanding of the issues (they escorted me on my visit so I was able to share my observations with them) and the new behavior management plan should be officially in place within a few days. 

I feel better knowing that the school finally recognizes the severity of the problem and have taken action.  They’ve switched our social worker (who’s also the official parent/school liaison) to someone who seems to understand us much better.  The speech therapist that will be working with Adrian is great too.  They’ve agreed to notify me anytime the saferoom is used, which if they follow the behavior management plan and use the proactive strategies we discussed, should be rare to never.

So things are under control for now.  I think everything will work out if they’re able to follow through with everything we talked about. Already Adrian seems happier and calmer about school.

November 8, 2007

He Lit Up My Life

We go through stages with Adrian’s obsessions and compulsions.  For a while it was lights.  He either wanted them on or off and simply could not accept that they be otherwise.  It’s been a while since we’ve fought that battle so I was surprised this morning when he insisted that all the lights be off.

He turned them off. I turned them on and told him we needed them.  He turned them off again.  I turned them on and he started to get upset with me.  After a few go-arounds and an obvious increase in his frustration level (and the pinching that goes with it), I brought his device to the kitchen table.

I went into a screen that had options to say “Turn the lights on.” and “Turn the lights off.”  I pushed each to make sure he understood the function of each and then asked him which he wanted. 

He immediately went from being frustrated and upset with me to laughing and giggling.  As if the emotional aboutface wasn’t enough to surprise me, he then pushed the button for “Turn the lights on.” and, while continuing to laugh, went to turn all the lights on for me.  

I continue to be amazed at just how powerful communication is. 

November 3, 2007

I Want to Go Home!

I’ve been making a real push lately to make Adrian’s device available to him every time we get in the car.  I tried a few different locations including the seat next to him and in a holder made for a portable DVD player.  In the end, I decided to hook it to the back of the headrest in front of his seat with a bungee cord. 

We’ve had a difficult start to the school year so I guess I shouldn’t have been surprised that on the way to school Adrian repeated the phrase “I want to go home” over and over.  I’m glad that at least now he has a way to express it.

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