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Wednesday, January 21, 2015

"I don't want them labeled."

If I had a dollar for every time I heard this I could pay off my house, your house and probably have enough left over for a nice new car.  Honey, it's time we had some real talk.

I keep hearing this.  Hell, I've even said it myself.  The fact is, this isn't about YOU. It never was.  It hasn't been about you since the moment the doctor said "It's a boy! Or girl!". Sorry sunshine, I am all for a pity party for one from time to time.  This resisting a label thing, you're just keeping your head in the sand.  That's not helping your kid at all.  You think that label is going to hurt them? What do you think ignoring what is there is going to do? 

I'm not going to beat around the bush with this.  Your kid already HAS a label.  The weird one.  The troublemaker.  The quirky one.  The "What's with that kid?" one. Why not get them the correct one?  More importantly, get them the correct supports in place for success.

The label is a necessary evil.  I know being practical is about as much fun as watching paint dry but it is what it is.  You think you will get an insurance company to pay up for some sort of nondescript help?  I can't even get them to pay past thirty for speech therapy and my kid has the label of autism! Plus, I get the added fun bonus of having my yearly conversation with them of "Why yes, I will still be taking him to speech therapy and paying out of pocket.  He's still very much autistic!  He didn't magically recover from his severe expressive and receptive communication troubles just because we hit the limit. Go figure!"

And school Fries, sorry, you are definitely going to need them there. No one is handing out IEP's all willy nilly for kicks.  You want that free and appropriate education that the law entitles your child to receiving, you have to get the label.  You just do.  You want to get the best possible tailor made education for your kid, you best accept that label you are so afraid of calling them.

I get it. I really do. I was in denial for years.  I didn't want to see what was right in front of my face.  Once I started accepting it, well, I got used to it.  It's not a case of getting better.  You just start finding your kid's own groove.  I started following the tour guide that autism sent to me.  Yes, there are frequent stops for "window fries" and I know more about trains than I ever thought possible. I started to get a bit more fluent in his own language while teaching him my own. I saw past the label.

In other words, I got the eff over myself.

Everyone wants what's best for their kid.  Maybe it's autism. Maybe it's something else.  Whatever it is, let's not add resenting you as a parent to the mix.

18 comments:

  1. I am totally with you on this!! My one fear was always that my kid would get the wrong label only because sometimes the wrong label brings the wrong help. But that is a whole other kettle of fish! Thanks for a great piece!

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  2. Agreed - Labels can be scary - I much preferred it when my son was just 'slow to start talking' vs having "Childhood Apraxia of Speech". But once you accept what you're dealing with, it's much more clear how to treat it.

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  3. Thank you for saying it perfectly! With 3 boys on the spectrum (french fry lovers too) we have our collection of labels. They are much more than any label or diagnosis, and we love them for their awseomeness. Great piece!

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  4. I see this everyday with children that have dyslexia. I am forced to say "reading disorder" as if it makes any difference. The kiddos are so GLAD that their "problem" has a name!!

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    2. I can see why they would be glad! I would think there would be some comfort in that, especially for a learning disability.

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  5. Amen. Amen. Amen. Educating my kid's classmates and giving them a reason for his behaviors is the one thing I will never regret. My son is never bullied. Ever. http://quirks-and-chaos.blogspot.com/2012/05/privacy-hiding-diagnosis-or-hiding-from.html

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  6. If only people would realize how much more help their kids are entitled to, but only AFTER the label. Well said, Mama Fry.

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  7. So I guess by the time we my kiddo was diagnosed, I didn't even consider the label had issues or was even a debate. My only thoughts were, "gee, this explains EVERYTHING" and "now we can truly give him what he needs to live in his own skin in this crazy world." Then in talking to a parent, I heard about the label issue. I guess I don't think that way because I didn't make sense to me at all. If he were blind or had diabetes no one would talk about labels.

    What surprised me more is than labels is that parents not sharing with their kids the diagnosis because they didn't want their kid to feel labeled. My kiddo knew he wasn't like other kids, but thought it was because he was inherently bad and a broken person. The "label" gave him the tool to change the way he thought about himself and as a teen, the language to articulate to others why he has certain reactions and behaviors most people don't. For him, it is empowering and healing. Seeing him use that label to navigate his world is quite amazing. And part of growing is learning that people are more than the labels...

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    1. With you all the way. Especially about telling your child about his/her label.

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  8. Totally agree with this and always have. It was extended family that was so leery about labels. There is a big difference between awareness and labels.

    Carrie, I had the same experience with my son - when he told me he thought he was stupid, we told him about his diagnosis, which we had just received 6 weeks before. Knowledge is power!

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  9. The way I look at this depends on what someone is talking about when they say "label." I DO want my son "labeled" as having autism spectrum disorder (his official diagnosis), so that like you said, he can have all the supports that he is entitled to. When I think of him "being labeled" though, I think of it more like this:
    I'm afraid that when his teachers talk about him they'll say, "You know, Brandon...the autistic one." That's the "labeling" I fear. But I'm right there with you, sister! I got the diagnosis for my son less than two weeks after he turned 2...as soon as he was old enough to be diagnosed. I was ready to hit the ground runner for whatever he needed!

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  10. You Rock! You should know this! I enjoy your writings and feel a bit of a kindred spirit with you. Not in a weird or creepy way, just in a "oh you get in the same way I do" way. My son is amazing and I appreciate being able to see some of your post that make me laugh. Thank you for your blog. I have shared it on my FB because it is "real" and helps with the day-to-day sometimes. If we lived near, I'm sure we would be friends. At the very least we could share a basket of fries!

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  11. I am an autistic flutist and proud to be who I am. Labels are just a way of applying language to our defining traits.

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  12. Our major issue with appropriate labels at our school is that we've been completely honest with them, and they've used it against us. So now we're teetering on whether or not to share the additional labels we've gathered for our son since the autism one (mood disorder, bipolar). When you have a school that makes EVERYTHING hard, sometimes you just don't want to give them more ammunition. Hell, I've always been the TMI type - probably oversharing everything with everyone. But when our school used confidential information that we shared willingly with them to discipline our child, well, I clammed up like a mafia murder witness. And now I don't want to share anything that isn't absolutely necessary. Sucks.

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