Dynavox V Returns and Family Leaves

Our Dynavox V came back from repairs in record time. :)  Thank you, Dynavox!

And even without it, we managed to survive 9 family members coming to visit in the same week.  Adrian tends to look for attention when we have people over.  He tried everything from stealing my grandfather’s cane to pinching the baby.  It was good to see everyone but I’m glad things are back to ‘normal’ around here.

Next week Adrian goes back to the summer camp he loves so much.  We can’t wait!

From Being Weary to Seeing Clearly

Adrian’s been out of control for about 3 weeks now.  It’s been a rough. We think hormones are partly to blame. It’s been severe enough that we made the appointment to speak with the doctor about options.  He’s very unhappy and his compulsive behaviors are preventing him from enjoying the things he usually finds calming and relaxing. 

I was feeling awful weary from it all this afternoon when I picked Adrian up from school.  Then, through the mirror, I watched as Zee and Adrian played.  They shared a few cookies, they laughed and giggled.  They played games where only the two of them understood the rules.  Adrian’s communication device lay lifeless on the seat next to me, defeated by the blow Adrian gave it when he threw it through the air earlier today. Just another in the long line of things he’s broken in the past few weeks.

But these two brothers didn’t need words.  They played and laughed and understood one another perfectly.  They put their foreheads together and giggled at one another. It was a sight to behold and brought tears to my eyes. 

See, despite the shattered window, broken baskets, cracked cabinets, the destroyed faucet and the constant slamming of doors and drawers… despite all the difficulties of the past few weeks, I was reminded that it’s really not all bad.  Adrian is part of our family and we love him.  The essence of Adrian is still in there, even when it’s hidden by a storm of rage and sadness.

Hopefully we can find a way to help him through this rough spot.  But regardless what lies ahead, I won’t soon forget the image of brotherly love or the reminder about how lucky we are to have him.

Window Wake Up Call

When you have a child with autism, you spend a lot of time focusing on getting through the day.  The bigger picture is sometimes harder to see.

A few days ago Adrian put his fist through a window.  It was a wake up call for my husband and I.  Looking back, we can see that over the past few weeks, things have been increasingly difficult.  He’s been frustrated, angry and upset more often.  His obsessive/compulsive behaviors have become more pronounced and more difficult to deal with. 

We’ve decided it’s time to meet with the doctor and discuss what options we might have in helping Adrian to deal with the hormonal surge that we think is making it much more difficult for him to control himself.

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.

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. 

Look At Me

I’ve been adding small things here and there to Adrian’s device including a number key pad and a lunch room page.  But I think the most important changes have been to a page called ‘My Phrases’.   I’ve racked my brain trying to think of all the things Adrian might say at school to express his feelings to the staff.  With his pinching behaviors being the central focus of some members of his team, it’s important that we get Adrian to express himself in different ways as soon as possible.

I’ve programmed buttons to say positive things like

• yes
• ok
• me too
• one more time 

He can express negative ideas with phrases like

• I don’t like it
• I don’t know
• no more
• I’m finished
• Later

He can ask for help, say it’s too loud, say that he needs a break or that he needs his headphones.  I also included

• Be quiet!
• I don’t want to do any more
• Stop!
• Leave me alone

But showing him all the options available to him, his favorite button was the one that says, “Look at me!”   He just pressed it over and over and then joyfully stared at me staring at him. Who doesn’t love being the center of attention?

Home and School Journals

It started when Adrian’s speech therapist last year had the brilliant idea to program a button that would make a comment about something that happened during Adrian’s school day.  She felt he’d enjoy communicating with us at home about what took place at school.  We were only able to use it once, but I think she was on to something.

I knew I wanted to do something similar with Adrian’s classroom this year but having the staff simply type in a message for him seemed to be missing the point.  I realized that we could easily combine the ‘what happened at school today’ button with the goal of having him type words. 

I explained the idea to the classroom staff last week and they were all on board.  Early this week I began our ‘Home Journal’.   I created a notebook and placed removable PECS inside that would allow us to create sentences about things that were going on at home. 

This week we had lots of things to write about.  Grandma is here to visit and we just had a birthday party for Adrian’s twin sisters.  In the notebook I put icons and/or words for Grandma, sisters, I, me, we, cake, party, eat, ate, come, came, visit, dance, my, is, was, had, has, a and for.  I asked Adrian to look and see what he wanted to talk about.  He choose Grandma, sisters, cake, visit and dance.  Using these topics I helped him put together sentences.  We lined up the PECS/words to say:   “My sisters had a party. I ate cake.”

We read through the sentences on the table first and then I asked him to type them.  He did.  He seemed pretty pleased with his work as it was read back to him.  Encouraged by our success, I formed another sentence for him to type: “Grandma came for a visit.”

Again, we read through the sentence on the table and then he typed it and had his Dynavox say it.  Although he seemed to be happy about the result, I could tell he’d had enough for now so I decided to skip the ‘dance’ icon he’d picked out.  (Grandma had been dancing with him and I think that’s probably why he picked it.)

Fast forward to today.  I told the teacher about the messages we’d created.  I don’t know how Adrian reacted to being able to play them for his teachers.  But she did mention that Adrian was VERY resistant to typing out his message in the ’School Journal’.  He was so upset about doing it that he spit on the aide who was working with him. 

I’m disappointed that he reacted this way at school when he’d participated willingly here at home.   I know the teachers wonder if he’s just trying to get out of work.  I can’t say their concern isn’t valid.  Adrian’s done things like that in the past.  Still, I wonder, can you force communication?  Is the point here coercion or connection?

I don’t want Adrian to think of writing, typing or communicating negatively.  I want him to see these things as useful, purposeful, desirable and even fun.  From where I sit now, forcing him to type under these circumstances is less than productive - it’s counterproductive. 

I think we may have to put the school journal on hold for a bit until Adrian and his team can figure out how to communicate and work together under mutually agreeable terms.

Taking A Step Back

I’ve been contemplating the meeting with Adrian’s team last week.  As I suspected, Adrian’s pinching habit is causing major problems.  I know a lot of it is caused by Adrian’s inability to communicate effectively.  After considering the problem for a bit, I’ve decided to take a step back.

I sometimes wish I could simply ‘download’ my knowledge of Adrian to his new teachers.  There’s so much in his history that I know would change how they look at him.  I did provide some of that history at the meeting.   But there’s no way to tell it all.

As frustrating as that is, it does have an upside.  There are two advantages I see in giving them some information and letting them figure out the rest.

1. They might try something new.  Without a prescribed solution, they’ve already tried some new things to control his pinching behaviors.  You never know when they might find something through trial and error than works better than what we were already doing.
2. The process of figuring him out builds their relationship with him.  If I could tell them everything there is to know about Adrian, they wouldn’t ever need to ‘get to know’ him.  It’s the nitty gritty stuff that helps build a unique relationship between Adrian and his teachers.

So having given the classroom team history and hints, I’m going to leave them to figure out how best to deal with Adrian’s aggressive behaviors at school.  Hopefully within a few weeks they will understand Adrian better, have developed relationships with him and will have found some strategies that help them.