Feb 11, 2008

Even more Questions and Answers!

This is great, makes me think that there are actually people who care out there! :^)

Suze asks:

Does Skyler have a hard time eating? Can he feed himself or does he have trouble doing it? Good eater or picky eater?

Eating is tough for Skyler. I didn't know this until we got into the whole CP thing, but the reason he can't talk, has problems eating, drools, is because your mouth is the most complex muscle control group you have. Walking is a piece of cake compared to talking and swallowing because of the different muscle groups involved. You have jaw motion, tongue control, neck muscles, and finally you have to control breath. That is a lot going on!

Skyler can't feed himself, he just doesn't have good enough arm control, so we have been feeding him his whole life. He has to eat easy to chew stuff like pastas, mashed potatoes, and if we give him harder to chew stuff, it always has to be cut very small. He is kind of a picky eater, but since June of last year we have been supplementing his oral intake with formula through his G-Tube that goes directly into his stomach. His favorite food is Ice Cream!
Thanks Suze!

Leonesse chimes in with:

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?

Important questions get answered first, so his backpack on his wheelchair will hold exactly 7 beers (research is important in these matters). It never gets checked, so we are good to go!

His favorite thing to do is watch his DVDs he makes. He likes to make DVDs of people he sees on the news or Jeopardy that he think are funny.

Sadly, the few friends that Skyler has made through his life have moved on since getting into high school. There are some kids who hang with Skyler at school and are nice to him, but it is tough trying to be Skylers friend and still hang out with the "cool kids" in school. There is a lot of peer pressure once you get into the upper grades about not hanging out with "those kids", and it is pretty sad how much influence there is on kids. We have seen a kid that has known Skyler since grade school walk down the hall with his girlfriend and not even say hi, just because his girlfriend thinks Skyler is icky...

It's life, and you can't guard against you kid being hurt. But it tears a little bit of your heart out each time it happens.


  1. :::Skyler is icky...:::
    You have got to be kidding me...everytime I think there is hope for the human race.
    I hope Skyler knows he is much better off without someone who will let himself be influenced by a...a...sub-human like that. I'll send you a picture of my two girls, and you tell Skyler that they were very concerned about him when he was going through his surgery, asking me if there had been any updates and how he was doing. They still ask...
    Damn thoughtless teenagers...and the damn thoughless parents that raise them that way.

  2. That just tore my heart a bit, too. If only we could let high-school kids know that what is important to them now will be so trivial in just a few years — when they realize friendship means so much more.

  3. Anonymous6:29 PM

    Yeah, that last paragraph made me sad. Kids really can be so harsh. It's all about "being cool".

  4. and people wonder why Sartre said, "hell is other people"...

    here's a Question for Class Discussion: LONG TERM GOALS. What do you forsee in th' future? Adulthood? Work? Relationships?? What do you want and what does he want?

  5. I haven't checked in with you for awhile and find this Skylar Q & A feature simply terrific.

    I love it!

  6. Thanks Raven, and thank your girls for me!

    Beth and Suze: Everyone has to learn it themselves, and in their own time I guess.

    HL: Another great question! I have to think about this one and get back to you...

    Lady: Thank you so much, but why stay away? ;^)

  7. I have often heard it said that there is no crueler or more sadistic being than your average teen. I'm glad that there are at least some kids who will treat him like a human. I know how you feel to a certain degree. I have a son who is bipolar so all of his problems are on the inside. It still hurts to hear him called crazy or to see people in fear of him.

    Just tell Skylar to remember Stephen Hawking.

  8. I teared up a bit when I read how kids can be so cruel... "Skyler is icky"...unfortunately we have all been in that situation where we were the icky one, but none-the-less it doesn't make it less painful...You have a wonderful blog, a great sense of humor - and from what I can see from this side of my monitor, quite a great kid...please tell him his online friends say hello!