A little piece of heaven

Nathan can now turn on the TV and change the channel!

The dynavox has IR sensors, so I program it to function like a remote, so Nathan can turn on the TV and change the channel, turn up and down the volume, etc.  I wish I could’ve captured his face when he figured out he could do such a thing!  Can you imagine how amazing he must feel, to have some control over the world around him?

This is a new game we started with him.  I programmed several pages with 2 big flash cards.  One was an object that I know he knows, the other is an object that he is pretty neutral about.    I wanted to be able to say, Nathan show me ball and for him to pick it right away and move on.  But it quickly became obvious that it wouldn’t work that way.

Nathan wanted to just look at the pictures and click on them to make them speak.  So the wonderful Ronna figured out how to teach him how to play “the game”.  She first gave him time to look and click on both pictures.  Then she asked her to use his voice to let her know he was ready.  As soon as he made any sound, she would ask him to show her one of the pictures.  If he got it right, we both cheered and he got a sticker.  If he got it wrong we asked him to try again.  Once he got 5 stickers we played with the bubble gun, which he loves.  So he then had the incentive of collecting more stickers. He LOVED the game!

Although I know with absolute certainty that he knows what a car is, he didn’t always get the answer right.  But I also know without a doubt that when he got the answer wrong it wasn’t because he didn’t know which one was the car, but because he wanted to do something else.  He is wilfull.  So a big part of our challenge is motivating him so he “complies” with our “games”.  He is simply not the child to choose car because I ask him to choose car.   He is his mother’s son after all 😉

So the wonderful Ronna figured out how to make it fun for him and by the end of the hour he was about 50% more accurate.  Which is why I LOVE Ronna, and why using the Dynavox has its own process and methodology, and why someone skilled has to be the one working with him.

We also added a “Talk” button to the page, which he would click on and a pop up would appear over the page with 6 buttons.  Each button had a relevant comment about the page.

On a page we had a picture of him at Disneyland.  He loved that picture and clicked on it over and over and over again.  Finally we added to the talk page a comment that said “I love it there, when can we go?”  After we added that he kept hitting the disneyland button and saying I love it there, when can we go, over and over again.

Also, one of the pages had a picture of scissors.  Ronna kept asking him over and over to choose the other one (a motorcycle).  But he kept hitting scissors, then he’d go to “talk” then he’d hit, “I don’t know”.  Finally we realized he was saying “I don’t know what scissors are”.  So I went and got scissors and we started cutting with him.  He loved it and asked to play with it again!

I LOVE this talker, it’s giving Nathan control over his life and most importantly, a VOICE.

Nathan is doing much better. He is healing. We never did get in to see the doctor because he started feeling and acting better. My diagnosis: cold with severe food allergy. We cleaned up his diet and things improved, and now we’re using our typical repertoire of homeopathics and vitamin C to get him all healed up.

Owen and I are firm believers that Nathan feels better and heals faster is life goes on as normal. So unless he is seriously ill, we continue to take him out and about, we send him to school, etc. The joy and entertainment of these activities I believe take his mind off his misery and help him recover quickly.

So we sent him to horse therapy yesterday and music class today. He LOVED them both!

Guess who’s now riding the horse all by himself?? Yes, you guessed right.

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Although he still doesn’t have much control and requires almost a max assist, his horse therapist believed he was ready to ride alone, and for her to remove some support and give him more control. So far it’s much more work for him but he seems to really enjoy riding.

When he got on the horse yesterday he was just so tight, his adductors and arms were incredibly rigid. Mrs Becky worked hard on getting him to hold the saddle and hold himself so that his arms would relax. The child I got back after 30 minutes on the horse felt like a different child – his arms finally lowered and relaxed, his hips were wide open, and his muscle tone felt so much better all over.

I am begging and pleading them to give him more time. I think if we can get Nathan on that horse at least 3 times a week we’d see him getting stronger. They told me they’d get back to me soon. I hope I hope I hope!

Oh and while Nathan rode, Belle had a photoshot modeling one of the dresses that Great Grandma Celia made for her!

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Today we went to music class with both kids. Both of them love it so much – Nathan much more than Belle. He LIGHTS UP when he sees the place and beams through the whole class. And cries when they start singing the good bye song because he doesn’t want it to end.

Another SN mom told me about this program – so I thought I’d pass it on. It’s called Kindermusik. They have classes all over. It’s a WONDERFUL program and great for both of the kids….plus it’s something they can do together!

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Oh and here’s a video of Nathan in music therapy this week before Lucas barked and scared him:

I know this doesn’t seem like much of an achievement but for Nathan it’s an inchstone, his arms are so spastic and dystonic, his hands too, that it’s incredibly hard for him to use them at all. So for him to be able to have both his hands open and to strum the guitar up and down takes a LOT! Oh the joy of inchstones.

It’s hard to imagine that the dynavox and buzz lightyear can fit together in one sentence. But they do.

This is how:

I’m loving this device more and more every day!