Labels: Ain’t Nothing Wrong With Being Special

I saw a post on Facebook the other day with a picture of a young boy, and the words, “I have a disability. I need love. I need to play. I need friends. I need an education. My needs aren’t ‘SPECIAL.'”  It originally came from the Wyoming Governor’s Council on Developmental Disabilities, and on their main page, the group describes their “I’m Not Special” campaign, relating use of the word, “Special” to the use of the r-word, citing that many in the DD/ID community are offended by the term “special”.  The page goes on to say, “The label of ‘special’ in reference to a person with a disability does not convey equality. Expectations for success should not be underestimated to accommodate the ‘special’ label that is associated with people with disabilities.”

A picture of a rubber duck wearing a nametag, ...

Feel free to chime in below, but here are my thoughts.  The “I’m not special” campaign??  Are you kidding me?  Yes, THAT’S what I want to tell my son.  “YOU are NOT special, suck it up.  You are just like everyone else, and I expect you to do the same as everyone else with no support.  Stop using your autism as an excuse.”  That’s what the name of that campaign says to me.  Here’s what’s true: one of the tenets of special education, and educational law in this country is that you need to throw out the word “equal” and replace it with the word “equitable”.  Because the reality is that some people need more help, than others, and some kids cost the school district more than others – they need to have equal access to the curriculum, so the school has to take an equitable approach to ensure that.

And for the record, I don’t like the word “disability”, but I haven’t formed a task-force and anti-disability campaign.  My son has plenty of abilities, and has deficits in certain other areas, but he is not dis-abled.

The truth of this is that our kids with special needs do have special needs.  They are not typical children who can bathe/dress/feed themselves, or pay attention in class themselves, or do homework by themselves.  My child needs supports to be able to show us his abilities in certain areas.  He is able, but needs some help.  He is special, much like any child is.  And he is equal in worth to anyone else.  He can be all of those things – they are not mutually exclusive.

I also saw this pretty neat news story on Facebook.  That little girl’s flute sounds the same as all the other flutes, but it works differently, thanks to the special design of Mr. Woody.  Her flute is not less, but it is special.

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It’s Just A Word

Still using the "r-word"?  Find yourself a dictionary...

Still using the “r-word”? Find yourself a dictionary…

Recently, the r-word has reared its ugly head again in my purview.  Several weeks ago, I was on Pinterest, and saw a pin with this “joke”: “Sometimes your knight in shining armor is just a retard in tin foil”.  Hilarious, right?  No.  Not funny in the least.  And I usually don’t jump on people on that site, because I don’t know them from Adam, and don’t want to get into it with strangers.  In my experience, that can get a little scary.

But I noticed that several others were posting comments to the pin that took exception to it, so I chimed in.  And a couple of people responded to me, jumping all over me to “get a grip”, “life isn’t always nice”, “people are too damn touchy today”, “get over it”, “cool your beans” and plenty of expletives.  Now let me explain that my comment was in no way heated — it was: “Just because it doesn’t hurt you, doesn’t mean it doesn’t hurt someone else.”  But I was told to “cool (my) beans” and “get a grip”!

One person responded specifically to me, and in her response, said this: “If the word hurts you, it is because you allowed it to. I am overweight, if I cried every time I heard the word fat, I would be a constant mess.”

So, it’s OK for people to use derogatory language, because I’m supposed to be stronger, and those on this planet with Down’s Syndrome, Autism, Cognitive Impairments, and Intellectual and Developmental Disabilities are just supposed to be stronger, and “get over it”, if the word “retard” hurts them?

Another commenter said this: “Oh goodness it’s a word for crying out loud! I have a cousin with Down syndrome and a cousin with autism and not a single person in my family over reacts over the word ‘retard’ you know why, because we don’t use that word to describe them so why the hell should it be offensive, do you actually sit there and call your mentally disabled children retarded? No? Then get over it!!!”

So, because I don’t use that word to describe my son, it shouldn’t be offensive to me??

Um… What???

I think the people on the wrong side of this, those who accuse us of being the “word police”, need some stronger arguments, because theirs just make no sense.  I am not the word police.  But I will point out to you when a word you use is hurtful, because I believe people should be nice to each other – didn’t we all learn that in Kindergarten?  Because I’m going to give you the benefit of the doubt, that you just didn’t realize you were being mean.  If you dig your feet in, because you should be allowed to say whatever you want, you are correct.

You can say anything you want.  But that doesn’t mean you should.

If you agree, check out this awesome info-graphic about the word “gay”.  We should totally get one of these made for the r-word!

Celebrate and Have a Good Time

For a little over a year, I have been privileged enough to serve on the board of our local chapter of the ARC.  I got to meet regularly with a group of people committed to filling the needs of people of all ages with developmental disabilities in our community.  We have had no executive director, and the board ends up doing incredible amounts of work to make programs and events run without a hitch.  We have hosted run/walks, teen clubs, movie nights, speakers, and workshops, and have provided grants for training and respite to families in need.

The Boy made creative shapes with his tickets while waiting for the tin-can raffle to be done.

The Boy made creative shapes with his tickets while waiting for the tin-can raffle to be done.

Tonight, we celebrated with our annual membership meeting and dinner dance, and it was a great way to end my term as a board member.  The Boy and I got a little dressed up (after we ran to the store to replace the missing clip-on tie that threatened apocolypse a half-hour before the event), and ate and boogied the night away.  The Boy’s favorite part of this is always the tin-can raffle, largely because he wins just about everything he wants to win.  This year was no exception: he put tickets in for three prizes, and walked away with all of them – Lucky Boy!!  And of course, one of them was an “I love cats” mug – too much serendipity there…

My ticket art was much more boring, and I could only make a triangle.  The Boy said, "That's not even equilateral, Mom."

My ticket art was much more boring, and I could only make a triangle. The Boy said, “That’s not even equilateral, Mom.”

My favorite part is watching all of the kids and young adults dancing, laughing, and having a great time with friends.  They sure know how to party!  A few times, I caught a couple of kiddos posturing in the mirrors on the walls of the banquet hall, admiring themselves and how adult and dressed up they were.  If you want to be reminded about what’s really important in life, and have a great time doing it, these guileless and joyful folks are the ones to show you.

Autism and Puberty for Boys

The Boy is 11 now, and just within the past six months or so, he has been experiencing some significant changes to his body.  He is much more private about using the bathroom and taking a shower, and I’ve been fretting about just how to talk about this stuff with him.  I’m not really an expert on the boy process, you know?  I always learned about the girl stuff in school – go figure.  And with a mostly absent dad, and a fiance whose job it really isn’t anyway, it’s left to me to explain…

A friend mentioned that The American Girl company (that makes the dolls) has an excellent book on this subject, but alas, it’s for girls – go figure.  This left me to wonder was there anything out there for boys??

Then the other day, Autism Speaks (love them or hate them, they do have awesome resources!) posted on facebook about several resources for boys with autism going through puberty.  Amazing how some things just fall in your lap at the right times.  I ordered two of the books, Taking Care of Myself by Mary Wrobel and The Boys’ Guide to Growing Up by Terri Couwenhoven.

puberty books

Taking Care of Myself is more of a curriculum resource for teachers (primarily), focusing on hygiene and puberty.  It is for both boys and girls.  I am still working through it, and will do more of a full review later, but it seems to contain social story-based text that you can use in multiple formats for your child with autism.

The Boys’ Guide to Growing Up is a much shorter book, designed to be read to or with your son with a developmental disability.  It focuses on the internal and external effects of puberty: changes to the body, and changes in feelings.  It spends a lot of time discussing the difference between public and private, and what is OK to share publicly, and what is better done in private.  It only touches on hygiene. It is written at a third grade reading level so that more boys can access the information, and it is repetitive so that main ideas are reinforced.  It also has illustrations which are appropriate.

Neither of these books talks about sexuality or intercourse, which is just fine by me!

Hygiene is starting to be an issue with us, so I think using both of these books is going to be the best bet for us.  But with The Boys’ Guide to Growing Up, I feel like I can have a conversation now with The Boy about the changes he is beginning to experience, and feel less like an idiot.

I’ll keep you posted.