House of Shock

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

Exciting Development

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

Thanks

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

Packed Up

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.

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.

Our First Steps to Writing

I started with a whiteboard.  Adrian didn’t have a lot of hand strength and quickly gave up on writing with a pencil or crayon because it took too much pressure to make it write.  He enjoyed markers because they wrote with even the lightest touch.  A whiteboard let us erase errors easily and made the whole thing portable.

I had planned to use our collection of wooden, magnetic letters to be an example he could follow in forming the letters.  Instead we stumbled upon a highly motivating activity!  Adrian LOVED to write the letter and then place the magnetic letter on top.  A matching game of sorts.

I could form a word with the magnetic letters and he would eagerly write each letter and place the magnetic on top.  He aimed to make his letters about the same size so the magnet would match.

With this set up Adrian wrote words all the time.  He wrote ‘chase’ over and over again to play his favorite game.  He wrote ‘dance’ so he could have his turn dancing with mom in the kitchen. He wrote ‘cookie’ so he could eat his favorite treat.  In this way we increased the words Adrian could sight read and worked on his handwriting skills at the same time.  And best of all, he enjoyed it! :) 

 

Where I’ve been

I haven’t been here cause I’ve been busy being HERE  

Keeping the juice flowing….

Now that we’ve got our Dynavox V back from being serviced, we’ve been figuring out the best way to keep it powered throughout the day. 

The first change we made was a rather simple one.  We turned off the option to have the screen blackout after a few minutes of not being used.  This drove Adrian nuts and he would compulsively touch the screen just to have it come back up - so not a real power saver after all. 

Instead we’ve been using the ambient light sensor.  The program stays up all the time, which makes Adrian very happy and the device saves some juice by automatically adjusting the brightness of the screen to match the light in the room. 

At school we’ve found that the external battery is the best solution for giving the device that extra boost to get through the day.  The external battery itself is thin, lightweight and very easy to use.  You plug the device into it just as if it were the power cord itself….. only it’s still portable!  Adrian’s not tied to the walls, there’s no power cords to trip anyone up and if he needs to get up and go, he can.  The team at school is very happy with it.

And, finally, my insurance policy - the car charger.  Even with the external battery working so well for us, I’ve still pulled our car charger out a few times.   I’m getting so much better about remembering to bring the Dynavox V with us when we go out but on occasion I still forget to check the power or pack up the external battery.  I can’t tell you what a thrill it is when this silly little charger saves me from myself.  With as much time as we spend in the car, having this insurance policy right there next to my seat is simply priceless.

Power failures used to be a regular occurrence for us, but no more.  These accessories keep the juice flowing… and Adrian talking

Feeling Very Happy

Feelings were one of the first things we put in Adrian’s original PECS book.  He only ever used it when he was prompted to do so. 

We added it to his first device and now it’s on our Dynavox V as well.  For a long time he’d only use this if he was prompted.  But more recently I’ve seen him initiating conversations by telling us how he feels.  He used it at school one day to tell the staff he was feeling ‘a little sad’.  Then earlier this week we arrived at school and he immediately told me he was feeling ‘very happy’.  

For me it’s huge that he sees value in expressing to us how he’s feeling… and that he’s got the means to say it too!