Tuesday, November 13, 2012

What Tomorrow May Bring

If you're like me, you make extensive efforts to predict what is going to happen next in your life. Which means, that since you're not a successful psychic or, you know, God, you would be wrong almost all the time.

Having a child with PWS has made this abundantly clear. We can't predict the future with any of our kids, but even more so for Dean, we don't know what great things he can accomplish tomorrow.

Today, in a very calculated, slow voice, Dean said, "Ah wan bipab." He was saying, "I want iPad." He LOVES his iPad and will do a lot just to get to play with it. Including saying three "words" without prompting, no matter how unintelligible those words might have been to others around him. Usually he can't even say *one* word without prompting.

The seemingly ordinary things can become extraordinary in the blink of an eye. Believe.


Gwyn said...

Ali, this is just awesome and I am smiling from ear to ear! You sure he wasn't asking for his Bipap!?!! Have you connected with other parents with children on cpap and bipaps? Ellie is on O2 and it is getting SO hard to keep the cannula in her nose!

Ali Foley Shenk said...

Gwyn, haha! That would be the day. :) No, he was pointing to the iPad, so I knew that was what he was talking about. :)

I feel you on the O2! Dean used to be on it and it was crazy trying to get him to keep it on. I used to sleep in his bed with him to keep it on and basically all it meant was that I didn't sleep all night! It was crazy. So she's just on it at night?

Giulia said...

Good job Dean :-)

Ali, why not combining words and pictures/gestures... Like that, even if Dean's words are not clearly understandable to everyone, he can make himself understand by the world :D

Don't be afraid of Dean's not being able to talk, because pictures/gestures... instead helps to talk. Exactly like being bilingual by birth does not prevent a child to learn how to talk.

And for the Bipap, why would not you write a story about this machine ? A story you read every night, before going to bed.
If it helps, good. If it does not help Dean right now, it cannot harm him either.
You can even ask to the three boys together to write the story with you.
Of course, they don't know to write yet, but they can draw. Therefore, they can illustrate the story.
You can even involve your husband if you feel like involving him.
A great family project, right ?