Shabby Miss Jenn

Sunday, March 13, 2011

What's So Special About Being "Special"?--Day 2 Part 2

As usual, I'm a little behind on posting. Life is crazy though. Back to the inclusion conference...

The first session after lunch started out a bit rough. I decided to go to the session entitled Conflict Resolution Skills Leading to More Effective Parent-Professional Collaboration.  I thought it would be a great way to for both parents and professionals to try to understand where each party is coming from. I should have known it would be a complete waste of time when the 29 year veteran teacher next to me got irritated when I asked her if she could scoot over one seat so that Kelly could sit down. From that point on, the lady did.not.shut.up!!!!

SIDEBAR--For the record, teachers can be the rudest audience! And I'm allowed to say that because, up until last year, I was a teacher:-) For those professionals reading, if you really don't want to go to a conference and listen, stay at work. I understand it's a day--or three--out of the classroom, but if you're going to be closed minded and talk throughout sessions, please just stay at work. Or better yet, take a personal day and let your district use their precious funds for something else.  And to the teachers that do want to take information back, we parents REALLY appreciate you. We did meet a few amazing professionals! Sorry.  Just had to get that off my chest.--RANT OVER

Needless to say, I didn't gain much from those two hours. The presenter actually had some good information, but others in the room chose to ramble about their own personal beliefs/stories, so I think things went in a different direction than what was intended. The presenter was from an organization called CADRE, which is The National Center on Dispute Resolution in Special Education. Basically, an organization that tries to mediate between school and family in an effort to stay away from due process. The main point was that both parties really need to collaborate together to meet the needs of the child. We need to separate the people involved from the problem. Each party (school and parent) is going to take a position, but in order to effectively come to an agreement, you need to know what interests and reasons are driving that position. Ask questions. Powerful, open ended questions. Delve deeper into what's really going on. Personally, I think the biggest mistake we all make is assuming we know the reasons behind the positions. If there is open dialogue, there is less room for assumptions.

The last session of the day challenged my thinking in ways I didn't expect. The name of the session was Politically Correct or Just Common Sense? I'm against the use of the "R" word. I stand up for Wade and push for what I think is best. I'm educated--to a degree--in special ed law. If I don't know the answers, I know where to look and who to go to. And considering I was at an inclusion conference, I totally believe in inclusion. During this session Laura Buckner, an absolutely fabulous person and mom to a son who has a disability, really convicted me of the language I use and the way I describe Wade to others.

People First Language--the idea of putting the person before their disability--is something I've embraced over the past couple of years. It comes pretty easily to me now. For instance, instead of saying, "That boy is autistic," you would say, "That boy has autism." Just a slight difference in the wording can make a huge impact. A person is so much more than their disability. By saying "autistic" instead of "has autism" almost implies that the person isn't capable of doing/being anything else except "autistic"!  In fact, a couple of days before leaving for this conference, the vet called to tell me that my dog is diabetic. I thought to myself, "No she's not. She HAS diabetes." It's become so ingrained in my language that I find myself cringing whenever someone doesn't use People First Language, especially when they're referring to their own child.

The use of the "R" word--retard--is also something else that I feel strongly about. I understand that it is a medical term to describe a delay. However, when the word is being used in a derogatory manner, I find HUGE issue. By saying a situation is retarded or by calling someone acting goofy a retard, you're essentially ridiculing someone who has an intellectual disability. I realize the majority of the people using the word mean absolutely nothing by it. But when you have a child with a disability, the word hits a little close to home. Words hurt. Period. As far as it being seen as just being politically correct? Well, when a group of people who "are" that word stand up to say it's wrong and that they would like to see the word disappear, then it goes way beyond political correctness. The people who are hurt the most--the people who have a disability--are asking for us to stop using the word. It's the same thing with the word "gay" or the "N" word. A group of people who "are" that word stood up and demanded that the language change. Not out of political correctness, but out of respect.

When I tell people about Wade or describe him to others, I typically mention that he has cerebral palsy. Not because this defines him, but I think it will help answer questions about him when they see he doesn't walk or talk or doesn't do other things a typical three year old does. I tend to focus on the things he can't do when talking about him. After the session I really had to do some soul searching about this one. The biggest reason I can come up with is because of my own insecurities. I feel like if I tell people he has cerebral palsy up front, then we avoid any embarrassing situations. If I tell people he has cerebral palsy, I don't have to explain why he can't respond to their greeting. If I tell people he has cerebral palsy, I don't have to step out of my comfort zone. But if I continue telling everyone he has cerebral palsy as a basic introduction, I'm skipping over the most wonderful and amazing and cheerful and energetic and happy-go-lucky little boy I've ever met. I'm still working on it, but this session has definitely challenged me to find a way to describe Wade in a positive light, leaving out everything he "can't" do.

Then we get to the word "special". There has always been a little part of me that has cringed when saying my son has "special needs". I've never really been able to describe why, but "special" just seems kind of belittling to me. But, I've used the term because everyone else does. What else am I supposed to say? Well, Laura let us all know that she doesn't like it either. Through her I finally got a grasp on why I dislike the term so much. Basically, it invokes pity. Almost every time I tell someone that Wade has special needs, in response I get, "I'm sorry." Or, "God gave him to you because you're the perfect mom." Or, "You're so strong." Or, "It takes a special person to raise a child with special needs." Or the best yet, "I could never do that." Never do what??? Raise your own child to the best of your ability??? Really??? But it's in those statements that I know what people are really saying. "Glad it's you and not me." Along with all of those comments comes the sad look. The look of pity. So really, what's so special about being "special"? I don't want to be special. I don't want to be an outsider. I don't want to be looked at differently. I don't want to be put up on a pedestal. And I sure has hell don't want anyone to view Wade as "special". He has a disability. That's it. Because like Laura said, being "special" at age 20 just isn't as cute as it is at age 2.



BlessedMommy said...

Beautiful post. You're a wonderful mom and are doing a wonderful job educating people. :)

Neysa (Anchors)

Leslie said...

Great post!

Kelly in TX said...

Great informative post! And convicting on several levels! :)


Our Child Care Home said...

Beautiful <3

Holly said...

I posted a tweet the other day and then cringed after I sent it off.

"my special needs daughter" it said.

Daughter who has a disability would have been better.

I've read the book and man does it change the way you think. Habits are hard to get out of, but I'm working on it.

Thanks for the reminder...

Sandra said...

Amen, Sister!!!

Amanda said...

Love this. <3 Beautiful post.

dale said...

Fantastic post and it is really forced me to read again and again.