Mar 24, 2011

A Question of Worth

Hi everyone, I am breaking out of my self-imposed silence with something of worth.

If you have ever wanted to catch just a glimpse of what Kathy and I have been beating our heads against for the last 10 years or so, go over to this link and watch the trailer for the movie.

I wish I could embed, but there isn't an option, so please click over and look.

Mar 5, 2011

We Have Reached The End Of Our Broadcast Day

So I guess you have noticed that I have not posted much lately, and what I have been putting up has been pretty much pure crap.

Truth be told, I have not felt much like digging deep into any particular subject, nor have I had the time to really collect my thoughts or even string more than a few sentences together.

There are just too many things pulling at me from all different directions right now:
  • Work has been so busy that I actually have been doing weekends and a lot of extra hours, which I always swore I wouldn't get sucked into.
  • While working from home has been nice in so far as I am able to help out a lot, my personnel relationships with friends has gone by the wayside.  There has also been the tendency for my wife to abuse it a bit by scheduling lots of stuff in the middle of the day.
  • Skyler has simply been kicking our ass.  I wrote awhile back about how he seems to have given up a bit on trying to work with us and the school.  That hasn't gotten any better.  He is only happy when he is doing exactly what he wants to do, and then he perseverates on one thing until he takes himself up to the point of a seizure.
I know that probably sounds meaningless and whiny to a lot of folks out there. But honestly I am just worn down by taking care of Skyler and keeping my fingers in all the holes in the dike. It has come to the point where I read about what other people are doing, be it a vacation, a new job, or even just seeing a concert or movie, and I think to myself  "Yeah, that is what my life was supposed to be like".

I also don't feel like I can really vent here, because I don't want to hurt any feelings or make people worry. So I am going to kind of close up shop for awhile here.  I will still pop in to read and comment here and there, and maybe I will get recharged and come back.  I might even start up a different place, I really don't know now.

Until then, thanks for all the comments and emails and bloggy love.  You folks have been great.

Mar 2, 2011

Repost: Everyone uses the word, what's your problem

This is from 2009, but I wanted to re-post it because today is "Spread the word to end the word" day.
Every time I hear somebody refer to Skyler as "retard" I die a little more inside.

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)