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Tuesday, March 31, 2009

I'm Joining In To...

Today I get to sit in on an IEP meeting and listen to the school psychologist tell me the results of all the testing indicate my daughter's IQ score falls in the range for mild mental retardation.

It isn't something new. While she's never had an IQ test done before, and no one has "officially" diagnosed Kayla with MR, it is pretty much par for the course with a Down syndrome diagnosis. I expected those results - I knew her IQ wasn't going to be in the 'average' (100) range.

Knowing that, and accepting that, doesn't mean it makes it easier to hear. It's still hard knowing your child is being labeled that way, but we deal with it and move on and realize a number doesn't give a true reflection of what she knows, who she is, what she's capable of, and what her personality is. It doesn't mean (as my husband pointed out to me) that she's not going to stop learning. It's still hard though.

But what is harder to hear is the negative connotation that is now associated with MR. The way the word has been taken so far out of context. The way the word is used casually as a put-down. The way the word is used about people and things when meaning "stupid" or "ugly." It's hard to hear "That was so retarded" and "He's so retarded" "I just did x,y,z, gosh I'm so retarded." It's so easy to replace the word "retarded" in those instances with another "r" word that is so much more appropriate - "ridiculous" - it's easy enough to say "That was ridiculous!" One small change in a word used can make a huge difference.

Because words? They do hurt. They do matter.

That's why I'm joining in...

What It's All About
Spread the Word to End the Word is raising the consciousness of society about the dehumanizing and hurtful effects of the R-word and encourage people to pledge to stop using it. America is being asked to declare their support for more respectful and inclusive language, specifically that referring to those with intellectual disabilities.

Here are just a few of the events that are being planned all over:
- American University, Beirut, Lebanon: Soeren Palumbo's R-word speech played hourly; movie "The Loretta Claiborne Story"; posters, pictures, online R-word signups.
- All high schools in Delaware: All 40,000 students will be asked to sign pledge boards in their schools.
- Tower Hill School, Newark, NJ: Spread the Word day as culmination of a week of exploring disabilities
- Fort Worth Independent School District: Lunch-time rallies, video shows, student testimonials and R-word pledge boards
- University of Kansas: Sign pledge boards
- Western Michigan University: See posters, sign pledge boards, talk with committed volunteers and Special Olympics athletes.
- University of Nebraska: Sign the pledge board, talk about why you support the campaign, get stickers, buttons and bracelets
- Princeton University: Sign the R-word pledge, see big-screen displays of Special Olympics and R-word videos.
- Slippery Rock University: Sign pledge boards, get buttons, bracelets and stickers for free, buy T-shirts

Won't you take a moment to sign the pledge too?

post signature


chelle said...

Good luck at the meeting. I agree the "r" word is not nice and can easily be substituted.

Mom24 said...

Good luck. You are very right, an IQ does not really tell about the person. Kayla is much, much more than any number. (((Hugs)))

Chrystal said...

"...she's not going to stop learning."

I love that. *tears*

Little Miss E said...

I think we start to see our children as they are, "normal" for them. When we hear someone compare them to what everyone ELSE consideres normal, it hurts us all over again because we don't see Down syndrome. We don't see MR. We just see a child that has strenghts and weaknesses, like any other child.

Anne and Whitney: Up, Down and All Around said...

I haven't had to sit in on any IEPs for Whitney yet, but I can just imagine how hard it is to hear someone else talk about your child, especially when they are evaluating their IQ - even though you "know" to expect developmental delays it doesn't make it "easy"! I think that is an awesome way to look at things, "...she's not going to stop learning" - thanks for the great perspective!
I hope it is alright, I posted a link to this blog entry on our blog today. I think you had a lot of great things to say :)
Best of luck at the IEP meeting!

The Girls' Mommy said...

I'm thinking about you with your meeting! That one can be emotionally draining. At least we only have to do it every three years.

Nancy M. said...

Kayla is so much smarter than what they may label her learning ability as!

I know several young children whose use the "r" word way to often, just as you described. I have been trying to correct them when they say it. I hope to get them to stop eventually.

Sunny said...

I loved this post. I had no idea there were so many events going on around the country.

Barb said...

When I think of Kayla, no labels enter my mind at all, Michelle. I just think of her as a really happy and adorable little girl. I agree with you - people need to stop and think before they use words in such a way that they're hurtful. And our own president needs to stop and think before he makes a joke about the Special Olympics. People just don't think.

I agree with all your comments - Kayla is infinitely more than a number or a label.

Stephanie said...

I have to admit that I am one of those people who don't always think before I use the "r" word but from now on, I will try my best, for Kayla, to replace the "r" word with something less hurtful and more appropriate.

Thank you for helping me realize.

Anonymous said...

Good luck. You are so right about the "r" word. I think people need to stop and think before they say anything.They don't need to use that word at all. i also agree with you on the iq test. that doesn't tell you who kayla is. I think kayla is a very smart girl. She does know and understand a lot. Anyone can tell by your videos.I just wouldn't let the iq test get to you at all.
oh, I spoke to eric simmons and he wanted me to tell you hello. I did tell him about your blog.
love ya,

Bailey's Leaf said...

I'm so sorry. I'm sorry that people have such an abuse for a word that I would prefer not to exist anyhow.

And Kayla? She is her own little being learning at her own pace and doing her own thing. You have her out in mainstream schooling doing all the things that all kids her age do. She does the best of her ability. The kids love her and she is teaching them valuable lessons. She's teaching them (among other things) that just because someone has a disability doesn't mean that they "can't" but they "can" maybe in a different way than others. She may not take the path most traveled to the way that she learns, but she is showing others that there are other ways of doing things. She is showing others how to broaden their horizons and to give consideration to different methods of teaching. Not every child in every class learns the same way or the same speed.

Kayla? She's doing a great job and I'm sure having a fun time while she is there.

Thanks for helping her to teach others that the pesky r- word really is ridiculous!

Tina said...

I *hate, hate, hate* that word. I heard someone in the grocery store say it tonight and it made my skin crawl.

Nana of 7 said...

I was more than happy to join. My daughter will be 34 this year and I had to sit in on my share of IEPs. It never get's easy. I've always hated that word, but moreso when my daughter realized what that word meant and that more than not it was used in a meanful way.

Your little girl is precious and she's special. One of God's littlest angels. She'll learn, just in her own time. They told me my daughter would never learn. She was classed as "trainable". Well, she went to and graduated from public school. I had to fight the school board to get her in, but it was so worth it. And she's still learning. Just goes to show you how much they know.

Christina said...

((((HUGS)))) I agree with everything you said.

much more than a mom said...

Good luck tomorrow, Michelle. As a teacher, I hate iep meetings with a passion. I hate the numbers and the "talking behind their backs" and everything but they are necessary for funding etc and to keep everyone on the same page. Just get through it, and don't think about it again until the next one.

I posted the r-word site on my facebook and will forward to my former employer, where I had the pleasure of working with several people with down syndrome.

Mike said...

Your love for Kayla, and hers to you—always amazes me. You don't need test scores to know that.


Twitter: AboutParenting

Anonymous said...

IQ test so young? I am fascinated to learn what other states do for services and such. We have never been subjected to an IQ test! As a human services professional I am kind of surprised since IQ tests are pretty archaic. They are pretty narrow in terms of what they measure. I'm always more interested in the developmental evals myself. I hope you have a good team for your IEP!Do you have a designated case manager person who can support you? It's no fun to feel like you're sitting and they are talking about your child! Be assertive and get all of the last words in!!! Go girl!

Julie said...

I become more and more sensitive to that word everyday. For the most part my really close friends and family would never use it, but I have had some other friends and acquaintences that have used it in my presence and I cringe. Honestly I think in my mind when it is happening, "Wow I really don't know this person anymore". I mean how insensitive. It shouldn't be used anyway, but when it is someone you know, who knows you have MR child. Just, Wow!!! People need to think more. I have posted this here before in regards to the Obama comment. Why are we so careful to not use certain racest words or words that are not considered nice against homosexuals but still it is okay to use this word. Blows my mind.

Beck said...

Excellent, thought-provoking post, Michelle. I think it's very important that people understand how much that word, used so carelessly, can really, really hurt vulnerable people.

Amy said...

Michelle, every year we have a group of young adults come from Shepard's to visit our church. Shepard's is in Wisconsin and all ages of people with DS or MR or people that have had accidents that have caused severe brain injuries live. Shepard's trains them how to be independent and some even go to college! I'm not telling you this so you will send Kayla there, but to encourage you.

Some of them play instruments or sing. And so many of them quote Bible verses. One right after another after another. And they also tell us what they mean and how that verse has helped them in life.

It is one of my favorite nights at church because they are such an inspiration to me. They love the Lord so much and want to serve Him in every way possible!

And yes, it is an ugly word. I was ashamed of our president on Jay Leno.

Praying for your dear hubby always and for you guys too! How soon until you get to see him?

Kathleen Marie said...

What a great post on a subject that needs to be addressed often. I have a niece who is below the 100% range in IQ. She does not have DS... But seems to have all the signs of Fetal Alcohol Syndrom although my sister has never mentioned it. My niece like many children with MR continues to grow learn... She is a blessing!

Theresa said...

I'm just going to email you with my comments or else we would have a book here!

wendy said...

Just remember the one thing my husband said to me as we drove from MUSC after just learning our ur son was diagnosed with PDD-NOS (Basically he is on the autism spectrum but doesn't really fit any one type, little of this little of that-they really couldn't find a label for him, so they gave him this one)..."He is still the same child we came with this morning." An IQ test is just a number and by no means a direct or complete assessment of the whole child. I have been a teacher for 16 years. It just breaks my soul every meeting I sit in about my child. I feel your pain. Just look at your beautiful daughter, God made her that way for a reason and one day you will know what her purpose was. I often struggle with this too. You just want to stand up and scream at them to look at all the wonderful things she can do and focus on the positive! She is special and God made her that way don't let them make you feel that their is anything wrong with her. She will learn her way and do the things that are right for her not them! I wish you the best with this. Just know you are not alone. I hope and pray each day that one day the world will realize it's okay to be different. Bless you! I am sorry for writing you a book. I guess I needed to vent too.

Ellen said...

WELL SAID, Michelle. I will sign that pledge.

Type (little) a said...

I'd sign the pledge, because I'm guilty of using the word in the derogatory sense, even though I know it can be hurtful.

Of course Kayla won't stop learning! It makes me sad that the powers that be (in this case the school system) can't just let her be Kayla H., not Kayla H, who has Down Syndrome and mild MR. It's a shame that we're all soup cans in need of labels.

Hugs to you and Kayla.

Shannon @ Gabi's World said...

Very nicely put, Michelle!

Bonita said...

I gladly pledged, Michelle.

Beth said...

Kayla is a beautiful little girl with such a wonderful spirit and their "numbers" don't define who she is or who what she can do when she grows up. I have a brother who was labeled as a child as being mentally challenged and today he is a grown man who holds down a full time job, pays his own bills and can fully take care of himself. My heart goes out to you and your husband and I'm sending hugs and prayers your way.

Jill said...

I remember when my girlfriend told me her daughter with DS was retarded... I was fairly caught off guard to hear her say that - and more particularly the "r" word.

And sitting in on an IEP? Wow...