Saturday, July 26, 2008

On the word "retarded"

I have a confession to make, dear readers. I have been known to refer to events, activities, and even people as "retarded." I still do, occasionally, although I try to self-correct. I hear others do it, and sometimes I don't speak up. No one really MEANS any harm by it, but I know it still CAUSES harm, and I want to be sensitive.

Recently I have become enamored with "Dr. Horrible's Sing-Along Blog", which is a funny little 3-part video series about a lovable villain named Dr. Horrible and his misogynistic nemesis, Captain Hammer. Captain Hammer is funny because he is supposed to be a hero, yet he looks down on everyone and is very conceited. At one point he is singing a song about how everyone can be a hero (only not as cool as him) and one of the lines is, "If you're not a friggin' 'tard, you will prevail!"

When I heard that line, I laughed. But then I thought, "What if someone who really does have special needs hears that line? How would I explain to them why the line is funny? What is funny about saying a retarded person won't prevail?"

I am learning to be a communications professional. I know that the offhand slang ("friggin' 'tard" instead of "retarded") and the contrast between what a hero is supposed to be and how Captain Hammer is acting is probably what makes the line funny. I know that the writers of the song didn't MEAN any harm by the lyric...and yet, as I sit here thinking about it, I would rather inhale chili pepper than try to explain a statement like that to a person with special needs. It's so awkward to face the potential consequences of what you think is funny. And I know that jokes about "retards" are abundant, and no one MEANS any harm by telling them and laughing at them, all adds up to the perception that people with special needs are substandard. The more I read and see and hear, the more I realize that people with special needs are vital. They teach us so much. And I ache that some people would rather laugh than learn the lessons they have to teach us. And I ache that sometimes, "some people" means me. I don't want to put myself on a high and mighty pedestal of righteousness here, because I chuckle too. But I don't think I'll ever hear that line again without cringing a little.

Thursday, July 24, 2008

Finding Courage Through Sharing

National Fragile-X Awareness Day was July 22nd, and I didn't say anything. But then I took another look at the statistics. And I feel like I need to say something now.
I am usually not at all shy about telling people I am a carrier of the full mutation of Fragile-X. After all, I'm certainly not alone! And my thought is, if you think less of me for my genetic background, then you're not the kind of person I'd want to be chummy with anyway.
Although I have been very angry with Fragile X in the past, I am actually grateful for it now. I have been very blessed. I have some hard decisions to make further on down the road if I decide to have children of my own, but I still would not change anything. I feel like I can identify, in some small way, with the families who will walk through the door of my clinic.
My thoughts are not coming together well tonight...I'm pretty wiped out, and I need to study. But I wanted to be one more voice chiming up about FXS, to maybe reach one more person and tell them that life with FXS is not so bad.
In fact, it is beautiful.

Tuesday, July 15, 2008

And so what we have learned, applies to our lives today...

I have learned a lot from reading blogs written by Mommas of kids with special needs. I was reflecting on this as I went through my daily list of blogs today, and decided to write up some of what I've learned.
1. Down Syndrome is much more than mental retardation. I never realized all the medical problems that can accompany it.
2. Kids with a trach cannot smell or taste. Little Parker has weak lungs and can only go off of his trach tube for an hour every week. I can't imagine how overwhelming smells and tastes must be for him, and what it would be like to go through life without those senses.
3. Kids with g-tubes can have some major sensory issues once they are healthy enough to eat again. Michelle has posted some fantastic insights and tips about how to prepare kids to start eating via mouth again. I especially like her Eating Jar idea whereby her daughter Jacqui gets rewards for finishing all of her food and trying new foods.
4. I really need to get ahold of some Signing Time DVDs if the clinic at school doesn't have them. They break down walls for lots of kids.
5. As my Fluency professor told us, it really is all about the Benjamens. I have been appalled at the behavior of hospitals towards Parker and Rhett's families, calling and demanding large bills be paid out of pocket at that very moment while refusing to offer them any financial help. Let's think about this: medically fragile child, lots of surgeries, lots of doctor's visits and therapies, Mom staying home to watch after said child...probably not a 6 figure income here. Yet without these surgeries and doctor's visits and therapies, their children would not be alive. My supervisor for my observation hours told me that the most important thing is to provide a service for people who need it. End of story. Money is secondary to being able to communicate and eat and swallow without choking. No one should have to live in silence for want of a co-pay.
6. Always be on the lookout for communication opportunities. Sweet Maizie and her family communicate a lot through Webkinz, giving each other virtual gifts and sending each other messages. I never would've thought of Webkinz as a sort of augmentative communication, but it really works for her, and I enjoy reading about all the ways she finds to express herself.

I am really grateful to all of these families for giving me a glimpse into their has been the best resource I've found so far, and certainly the most entertaining and fufilling!

Wednesday, July 9, 2008


I swear I thought I updated this thing more recently. Gah. Anyways, I thought I would introduce you to a friend of mine who I hope will be friends with my young clients as well! This little guy is Gregarious, or Greg for short. I made him 2 years ago before I went to Ireland. My good friend Sophie was going to Greece, and I wasn't going to see her all summer. I made us both bears to take with us and photograph as we traveled. I had a lot of fun taking pictures of Greg in Ireland, and now I take him around with me whenever I go places and photograph him. When I started getting into speech-language pathology, I decided that I would bring Greg and his photos into the therapy room with me. I'm going to try him out this fall, if I get my supervisor's blessing. Children could describe Greg in his pictures, what he was doing and how he felt. They could sequence the pictures. They could tell their own Greg stories by looking at the pictures, and I could even make them bears to take on adventures themselves! This particular picture is of Greg in the preschool room in the student clinic. There are all kinds of super-neat toys in there. I hope I get a few preschoolers who won't get overloaded by that room so we can play. :)