Adrian was looking for attention tonight.  Standing on the furniture, trying to steal Grandma’s glasses, taking my pens and doing what ever else he could think of to get me to pay attention to him.  Dad’s been gone for a few days for work and without my tag team partner, I was feeling kinda tired and ready for a break.

I turned to our Dynavox V to try to distract him from getting attention in negative ways.  With our surprise success the other day, I went into the keyboard screen to see if he’d type something for me.  I wasn’t prepared for what he did.

He typed

H

and then thought - hard.  It was as though you could see the wheels in his head turning.  He stared off into space, looking for that word in his mind’s eye.  He continued…

HAU 

By this time he started to close his eyes and squint.  He was just thinking so hard!  He tentatively finished…

HAUO

and hesitated before he slowly asked the machine to say it.  He knew it was wrong but couldn’t figure it out.  I had no idea what he was attempting to say and told him so.  He went to his computer and I watched to look for clues.  He went to the Clubhouse Mickey webpage. Suddenly, it dawned on me…. HOUSE!

I asked him to come back and I showed him how to spell house.  I was so pleased at that point I couldn’t have fathomed that it wasn’t over yet.  He continued…

HOUSE OF MOUSE

He finished the rest of the title without hesitation or help.  And I sat there in shock for a minute.  Then I ran and got the House of Mouse - Villians DVD and put it on for him

What an amazing thing words are…. and what an amazing son I’ve got

My husband came upstairs the other day and said,

“Adrian just typed out Beauty and the Beast and Aladdin without looking at anything with those words on it.”

These are two of his favorite movies and he accesses them on his computer by sight reading them.  So I wasn’t shocked to hear he’d used them.  But then I thought about it. 

He typed them without looking at anything else and spelled them correctly. 

First, this means that not only can he learn to sight read words - he can learn to reproduce them.  And if he can reproduce them, he can learn to use them.  There’s a whole lot of hope in that statement and if you’re not the parent of a non-verbal child you may have missed it. 

While being able to use programmed vocabulary is great, it still limits what he can say.  The ultimate goal is to teach him to read and write so he can type his own spontaneous, unique messages - to be able to say what ever he wants to say, whenever he wants to say it. 

So what did we do next?  I opened Adrian’s keyboard page on his Dynavox V.  And he began typing…

LUNE

Lune?  I couldn’t figure out what he meant.  He thought for a second, went into his ‘time for’ page and looked there, then when back to the keyboard screen and typed…

LUNCH

He could have just hit the lunch button but he didn’t.  He typed it.  Could it be that he really recognizes the power of all those letters?  This is one exciting development

It’s finally time for camp!  I’m not sure who’s more excited about it. 

Adrian loves being outside, all the movement involved in the day, the swings, the swimming and the relaxed atmosphere.  He’s working the the same teacher and support staff so he is comfortable with the people he’s with all day and many of the same kids he knows from school attend camp also.

I love that it starts a half hour later and is 15 minutes closer than school.  I could go for this schedule year round.  The drive is far more pleasant and taking Adrian is so much easier cause he’s just so happy to go. 

Yup, Adrian and I agree… we wish the summer were longer!

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!

Verbal manners are one thing we’ve always tried to teach Adrian.  He’s pretty regular about asking for things using a verbal approximation, the sign or the button for please.  But thank you is always required a prompt. 

Until the other day.  For the first time, Adrian thanked me for making his drink.  Without a prompt.  Without so much as a glance in his direction.  He looked me straight in the eye and signed, “Thank you.”

Now I’m the grateful one

Adrian let go the Dynavox last week and let it crash to the floor.

The good news: We got it working again.  I backed up all his pages.

The bad news: Two days later, while sitting calming on a desk it gave out.  “No Operating System Found”  Not good.

So it’s packed up and ready to ship to Dynavox so they can repair it.  I’m far more calm about the whole affair this time than I was last time we had a malfunction.  Dynavox handed it all beautifully last time and I have faith they’ll do the same this time as well.

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.

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.

Last week Grandma flew in and I took Adrian with me to get her at the airport.  While we drove I explained where we were going and why.  He was very happy about it and used his device to say, “I want to go - Grandma”   Upon arriving at the airport he waited patiently with me.  When Grandma arrived, he pointed towards the gates.  He used his device to tell us ‘Airplane - take off.’  Apparently he was hoping to take a trip himself. 

This past week I had the opportunity to participate in a presentation at the NY Governor’s Expo on Assistive Technology.  With my Mother-In-Law in town, my husband and I were able to spend the day there.

We saw a lot of the devices and technologies I’d heard or seen online.  It was cool.  But I can’t tell you how my heart sunk each time we asked about pricing.  Most responded, “Medicaid Standard.” 

Medicaid standard.  Yes, they’ll charge every penny that Medicaid will pay for it. 

My heart goes out to all the kids and families who are still waiting for the government to push that Medicaid paperwork from desk to desk, still waiting for their appointment with someone who can evaluate their child for assitive technology, still waiting for teachers and speech therapists and pediatricians and school districts to contribute their approval, still waiting for the device to arrive, ….still waiting to get a voice.