Feb 10, 2008

Answers to questions part 3

Hey you guys are great! Thanks for all of the thoughtful questions and comments, keep them coming!

Grant mentioned he wants to hang out with Skyler and watch Robin Mead. Dude, that's my job, no horning in on the action! It is kind of fun to watch Skylers reaction to some girls, he gets all red in his face and ears when he really finds someone attractive. He reaches out to touch their hair, what a little guy...

Pezda, I hope the info I sent you off list helps, you can always give me another shout if you have more questions.

HL, who knows quite a bit about the world of special needs asks:

Have you programmed dirty words into his Dynavox?

The answer is no, just because he would use them all of the time and it would probably get us into even more trouble than we already are with the school district.

You know what is funny though, he compensates in ways for lack of language. There was a unit on Geology he had in 6th grade, and we put in all of the terms he needed for the class into his Dynavox. One of the Geology terms is cleavage, guess what he keeps going back to on his Dynavox?

He also asks I'm assuming in Sky's case it's more of a fine motor control issue, no? He can think and mentate fine, right? His body just gives him all sorts of flack about coordinating all the little bits he needs for speech.

Exactly BO, he knows what he wants to say, but he has limited control over his arm, and it is worse when he is tired or fatigued. He knows that he has a limited amount of energy to spend on communication, so he shortcuts a lot of stuff. School wants complete sentences to prove to them he can really communicate, but he leaves out lots of word because we understand most of the time anyway, and it is less effort for him to get it all out.

BO asks the 64,000 dollar question with:

What'bout faith n' religion? How has this whole CP biz affected you & your fambly? It seems to me that there's 2 basic reactions: either people assume that God is trying to teach your something, OR that there IS no God because what kindly being would burden ANYONE, especially a child, with such a disorder??

I'll tell you what BO, my faith wasn't all that solid before Skyler was born! My mom tried to raise me Catholic like she was, and I tried for her sake. But I just saw so many things I didn't agree with, like a woman couldn't be a Priest. Why not? Don't they believe as strongly as a man in God? And I never felt sitting in church like I was better for it. As a matter of fact there were several people sitting beside me that I know were complete ass-hats and yet carried themselves like the were apostles or something.

So there were already too many questions for me in organized faith, and then when Skyler was born with all of these complications after we had done absolutely everything right that we could, well, I guess you could say I developed my own religion. I decided that I was going to try and be as kind as I could to everyone, and treat all others like I wanted to be treated.

I have mentioned before that I have asked a lot, why was he born this way? What did I do that was so bad that a God would punish me by causing a young boy to suffer? What did Skyler do? He couldn't have done anything, unless you believe in the whole reincarnation thing.

And that kind of sums up my view on religion, even though I don't do as well as I should, I keep trying.

Lots of other nice comments for you all, I really do appreciate the nice words. Keep questions coming, like I said, nothing is off limits and nobody judges you around here for being honest in an inquiry!

Oh yeah, one other question came in from Suze:

Can we throw farting into the mix?

Damn straight we can, as well as all the digestive elements! One of the side effects of Skylers recent surgery is that he is a lot less constipated. Why, we don't know. Biut we used to have to give him an enema at least twice a week. Now he is pretty regular. There are good and bad points to this, good that he is regular and thing work normally, bad now that I can no longer kind of "control" when we have to change a stinky diaper!


  1. Excellent posts. You and your family are terrific for doing this. Makes a lot more people aware....me especially!

    One more question - does Skyler have a hard time eating? Can he feed himself or does he have trouble doing it? Good eater or picky eater?

  2. Cleavage. Heh heh, heh.

  3. You at least have to program "That's Hot" into his dynavox. I mean, come on!!! How much fun would he have with that~!

    What is Skylar's favorite thing to do?
    Does he have friends that he hangs out with?
    Can he sneak beer in his chair into a movie theater for me?