Feb 8, 2008

Answers to questions part 2

My sister Sandi, from Sandi's Zoo didn't have a question, but she knows everything that goes on with us so why should she? I love you lots sis, and hey - update that blog why don't you?

Chris from Radcliffs Random Midnight Thoughts left a couple of questions, and don't worry, there are no rude questions among us friends:

I'm intrigued by how Skyler communicates. How does that work?

Skyler uses a communications device called a Dynavox. It is a touch screen device that has pre-programmed pages and our own pages on it with buttons that are touched for speech. Each Button you touch causes the device to say the word or the letter that the button represents. It can also learn IR commands like a universal remote control for your TV, DVD, Tivo etc... Skylers system has about 200 different pages programmed into it, we have done a lot of work on it. He is not really able to carry on a conversation like we would, because it takes him so long to spell out a word or to build the parts of a sentence. But he can work most of the electronic devices in the house and can make his needs understood most of the time.

Are there financial resources available to help your family with this? I mean, my wife had to go for a ride in the shiny new ambulance a few weeks ago (she's fine now); they charged us $798 for a three-block ambulance trip. I can't imagine what it must cost for some of the specialized equipment for Skyler... Are there funds available? What organizations help out with this sort of thing?

To start with, about 20 years ago or so (I can't remember the exact date of the legislation) there was a law passed that changed insurance companies ability to deny you based upon pre-existing conditions. That means that when you went from one company to another, and changed insurance carriers, they could not tell you "Hey, he has CP already, we won't cover him". That pretty much saved our live. We guess that Skyler has cost about 1.5 to 2 million so far in hospital stays, surgeries, therapies, etc...

We signed up for a Medicaid wait list when he was a baby and got on it a few years ago, so things that insurance didn't cover can be submitted to them. Sometimes they help, sometimes they don't, but it is better than nothing. We have wound up paying for a ton of stuff out of pocket, and are in debt up to our eyeballs though... But you do what you have to do to try and make it work.



Pistols From Pistols at Dawn had a question that is a great one:

What's the most annoying thing people ask you about Skyler?

There are so many Pistols, where do I start? First of all, it is all in the person doing the asking. I have had people who have a genuine concern for Skyler, but just don't know the situation or the correct language ask me something like "Is he retarded?" and I don't take offense. Because you really can tell when there is a genuine interest or concern. Then I have had a person who is in special education say something completely offensive like"None of my kids understand anything I say anyway." She should know better...

That said, the most offensive thing that ever happened to us was in the grocery store when a lady brought her kids over to us all giddy and told them "Let's watch him and see what he can do!" Like he is trained monkey or something.

I about bitch-slapped her...


Becky from The Pop Eye emailed me off list (yikes, she found me!) to ask:

Skyler is a lovely and unique name. Is there any special inspiration for naming your son that or did you just like the way it sounded?

Like most parents we had the books for names and also several suggestion on names, my grandpa on moms side was Alphonse, thanks but no fucking way... And Kathy and I couldn't make a decision on a name. Then one day while reading the comics in the newspaper, we saw the kid birds name in the comic "Shoe" was Skyler. We both liked it, and it was unusual enough so there you are! After naming him that I looked it up and it comes from the Dutch name of Schyuler and it means "sheltering"

and she also asked:

What hot TV personality does Skyler think is the HOTTEST? :)

Skyler goes back and forth on his ladies, he never wants to devote his whole attention to just one you know... ;^) But his favorite local ones are Angie Austin from Channel 2 news and Kathy Sabine from Channel 9 news. He likes the weather girls the best! From a national perspective, he likes Robin Mead from CNN in the mornings, and Kate Snow from ABC.

Thanks you guys, these are great questions! Keep on coming, and remember that there is no subject off the table. Want to talk poop or erections?

15 comments:

  1. OH the lady that you wanted to bitch slap should have gotten that. F'in bitch!

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  2. I'd like to hang out with Skyler and watch Robin Meade sometime since doing it alone makes me feel a little creepy.

    Great that he has such loving parents and great you both have such a sweet kid.

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  3. Within months of getting insurance coverage I was diagnosed with ulcerative colitis, and shortly thereafter Type I diabetes. I cannot imagine how much I have cost our insurance companies over the years, and you can bet we won't be letting our coverage slip.

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  4. I will decline the poop & erection forum.

    I should have read through all three posts, prior to asking my question, but that is the beauty of me. Impatient and need to react immediately, when sitting quietly and reading a little more might answer my question. Hmph.

    I am appalled at the grocery store woman. And the fact that she has reproduced. It wasn't Britney, was it?

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  5. Oooh, oooh!! ::waving hands in th' air:: *I* wanna talk poop n' hardons!! I was a-sayin' to my autistic son just th' other day, "son, it's generally considered rude to yank your crank in mixed company."

    ::sigh:: I wish I had someone explain that to ME the other day!!

    I AM so totally pinching this idea. Next week! I've got silly shit ready to roll 4 th' weekend.

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  6. I just thought of something-- have you programmed dirty words into his Dynavox? I'm serious! Swear words are used for emphasis and I KNOW that as a human being surrounded by all that snow there's GOT to be times where he looks out the window and says to himself, "DAMMIT! IT'S SNOWING AGAIN!!" or words to that effect. Most parents either don't care or try to control their children's potty mouth, but YOU are in the unique position of REALLY controling his speech.

    In MY children's case they're still trying to figure out what communication IS-- they weren't born with that "language instinct", but 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.

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  7. Whoo!! I'm on a roll!! somebody stop me!!

    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??

    (you already can guess MY feelings, and I think I can guess yours, but I'm wondering if this whole CP biz has significantly changed you in any faithly way)

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  8. Teri: I really restrained myself on that one, why, I don't know...

    Grant: It's not creepy to watch the news alone. Now if you work up a little line of drool, well then that is a tad creepy!

    Pezda: I would enjoy hearing more about your battle with the health issues if you are ever inclined to share.

    TG: Too bad, I had hoped you would be a major contributer to the forum. It wasn't Britney, she had underwear on as I recall.

    HL: I will answer all in another post, you really are on a roll!

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  9. All little boys, CP or not-CP, have to be told that they can't yank their crank in public.

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  10. Kirby: And yet, still we do, still we do...

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  11. Skyler likes brains and beauty...you're raising him right!

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  12. Can we throw farting into the mix?

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  13. You deserve a Nobel Prize for having the self-control not to slap the shit out of that woman. I don't know if I'd have been able to not at least tell her what an asshole she was.

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  14. This is a great idea! Thanks for being so open.

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  15. An excellent series Mr. S. Dad, I'm enjoying it and admiring your restraint in the grocery store.

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