Thursday, October 8, 2009

Skyler's video resume

There are some wonderful people that have come into our lives as a result of having Skyler, and a couple of them we have met lately have come up with a wonderful idea. Katie and Andrew have started interviewing kids like Skyler, their family, friends, anybody who knows them and has been an influence in their lives. Then they take all of these interviews and focus on what the kid can do, distilling it down into a video resume.

They did one for Skyler that I think turned out very well, and I wanted to share it will all of you.
Let me describe the people in the video so you know who they are:
  • First person is Kathy, my wife and Skyler's mom.
  • Next guy with short black hair and soul patch is his speech therapist/technology guy, Brian.
  • Next person is Mindy, his Physical therapist with the long black hair.
  • Then comes Jenni, in the green top, who is his music therapist.
  • The guy with the glasses sitting in the office is Kevin, our old grade school principle and friend.
  • The guy up on the roof is Tom Mustin, the morning anchor for the CBS affiliate channel 4 news.
  • The guy with the ball-cap is Lonnie, his boss at Bayaud Industry
  • Of course Sky Dad makes an appearance or two...

Monday, September 14, 2009

Everyone else uses the word, what's your problem?

Our-kids is a group of over 1000 people who all are people who are in one way or another in the special needs community. Most of us are parents, but there are teachers, doctors, therapists, siblings, and some are the person with the diagnosis.

It is a worldwide community, but most are from the United States. We benefit from having an international membership, because it can be quite interesting to hear about viewpoints or medical procedures that are going on in other countries.

Over the years, I have had faceless names become close friends, engaged in discussions about body functions you wouldn’t mention to your doctor, and gained a valuable sounding board for advice and ideas. I have grown to care about a lot of these people, and their lives as much as some of my own friends.

There has been a conversation going on lately that is all about one word. In our community of special needs, it is the word that nobody speaks, much like nobody in the rest of the world wants to say nigger. Instead the rest of the world usually says the N word. With us, the one word is retarded.

With a lot of words that get thrown around, you can use it in a context that makes it OK. The N word gets used with regularity on the BET channel with comedians, and gets big laughs. In my own community of people that I have come to know that use chairs to get around, they sometimes throw around the word cripple with regularity. It’s not a word I would ever use, but hearing it in the context of guys on a wheelchair basketball team throwing at each other with glee, it seems alright.

I have always been a person who looks not so much at the word but at the use of it, or the person using it. I have had some people ask me questions about Skyler, that have wondered how he became crippled, or used other terms that I don’t care for. But when the intent behind the words is not malicious, and they really care, it is easy to excuse somebody for not being up on what language is proper. And believe me, I can spot sincerity in a person versus someone who should know better a mile away.

So what is it about the word retarded that bothers us so much? That has been the question going around, and I wanted to try and give you an idea of how much it hurts to hear it, and where I come from when I do.

All through Skylers life there has been a constant need to try and label him. Maybe that is the way the school system works, or how society is, I don’t really know. But there seems to be an issue with leaving a kid who is different from the rest without some sort of a label to put on them. We don’t do it with other kids, so what is the point? And yet, we are constantly fighting the perception that since he can’t talk, and is in a chair, he certainly must have some sort of delays “just like all of our other special kids”.

That right there is the key phrase, “all of our other special kids”.

Like a lot of other kids that face some sort of a challenge, Skyler went through school with an IEP. This stands for Individual Education Plan, and is laughingly un-individual. Any kids who doesn’t fit the typical mold, well they all go down the hall to special ed, with the rest of the retarded children. Because Skyler can’t gift you with clever or instant conversation, he must be retarded. Because Skyler can’t tolerate the level of noise in a particular room due to his sensory integration problems, when he starts to cry, it must be because he is retarded.

And what do you hear in the halls of the school every day? Retard, used over and over, with it’s never ending suffix to any word, -tard. It has become like anything –gate used because of Watergate. Don’t like a particular group of people, or have an issue with a segment of society? Just append tard to it and it become an instant and handy insult that everyone can enjoy. And does this present a problem with anyone, staff, teachers, anybody in society who is in a position of authority? In my experience, no. Because they probably use the word themselves.

So the question becomes what to do about it? Certainly there are a lot more pressing matters in the world going on, and gee Chris, aren’t you being a bit touchy? Yes, and probably yes. But on the second point, I would invite you to take that proverbial mile long walk in my shoes, then reflect on whether or not I might be touchy.

Because as this video by Soeren Palumbo points out so much better than I have been able to, I wonder why we take the most vulnerable segment of our society and make fun of them?

And if any of this has touched you in any way, or made you reconsider how to remove retarded from your lexicon, than I am glad I spent the time to try and get the point across. And if you feel that just one person less using the word won't make a difference, consider this next video by Bob Blue, called Courage. Bob was a middle school teacher as well as a singer and song writer, who came up with this song as a way to try and teach his kids about how just going along with the rest can't be used as an excuse.

Thank you so much for reading this, and don't worry, the silly stuff will return soon,
Chris (Sky-Dad)

Wednesday, June 3, 2009

Tuesday, May 19, 2009

Skylers Graduation Video!

I would like to share a video that Skyler and his speech therapist made for his graduation. It's 8 minutes, I hope you enjoy.

Thursday, January 15, 2009

Updated status on Skyler, with pictures

Hi all, we just got home from the hospital. They found two spots in Skylers stomach that have problems, one is an ulcer on his G-Tube spot, and the other is a "linear erosion" on the stomach wall. So we are going to go get some prescriptions filled for some medicine to give him for both. It is like a drinkable liquid "bandage" for the stomach, sounds pretty wild!

Skyler did very well with the whole thing, he is quite the trooper these days. Kathy is going to the pharmacy and I am taking care of him, but I wanted to check in and let you all know what's up.

Thanks again everyone, I really appreciate all of the nice comments and well wishes on and off the blog,