Thursday, March 12, 2009

The Way I See It, You Have Two Choices...

Tonight I was reading one of my favorite blogs (you can find it in my blogroll down right), Attack of the Redneck Mommy. Her post was lamenting the fact that people can be so rude when it comes to how they handle kids with special needs. Her frustration is that her son comes across as different and people don't know how to act around him. They say insensitive things. They gawk, and they generally make asses of themselves. It can be hard to explain to her older children. Especially when people are trying to be funny. I couldn't shake her post, and it started my wheels turning.

My oldest daughter is 14. One of the favorite expressions among her peers is "That's so retarded!" She has tried to explain to them why it's not acceptable, but it falls on deaf ears. Her friends don't see anything wrong with it. When I hear it, I also say something. I die a little every time I hear it. The first time my son used it, I almost had a stroke. It's not okay. The definition of retarded is an a IQ of less than 70. My children are not retarded. My kids have at least an average, possibly higher than average IQ. But my kids have autism. And I understand the lurch of a mother's heart when she opens her email to find pictures that are masquerading as humor staring at her, poised to wound her.

It's the heart I had when I saw Napoleon Dynamite. (I include a clip in case you live under a rock and never saw this awful movie). I have no idea if the title character was supposed to have had autism. I just know I squirmed uncomfortably while watching. I didn't see the humor in watching those poor socially-inept boys as we were supposed to laugh at them. It felt way too close to home. My mother's heart was breaking, and I wanted to kick somebody's butt, hard. I understand empathy while watching movies that deal with teen situations. Sure, we were all awkward at times back then, some more than others. Even the cheerleaders had bad hair days. But I drew the line at watching a film that made fun of kids who seemed oblivious to their social standing and how badly they stuck out. What could possibly make this funny? Watching how clueless they were? Glad it wasn't you? It felt cruel to sit and laugh at their behavior. Why?

Because you just can't tell by looking at someone what their normal is.

When I take my kids out, they look normal. No, really, they do. They are pretty cute, two wear braces, one is too young, but, sadly, due to her lousy gene pool and my recessed jawline (autism AND braces?) she will eventually need them, too.

Remember, I live in the land of the Beautiful People and have, upon more than one occasion, had a talent scout walk up to my family on the way through Nordstrom and invite us to an agent meeting. I am always told how adorable and well-mannered they are... and have I ever considered getting them into acting? And I think "Yeah, sure, they are well-mannered now, but wait until the 7 year old wants a drink of water, or the lights are too bright or she is just ready to go HOME. Wait until the 10 year old gets fixated on the latest whatjamacallit that he absolutely HAS to have, and can he borrow $10 (which I never loan him, but hope springs eternal.) Just wait until my 14 yr old is trying to find shoes and can't find one single, solitary pair that looks or feels right in the entire three-story mall. Wait for the meltdowns. They are coming." Or not...

Because they look just like every other fresh-scrubbed talent hopeful, the reactions when my children fall apart are always the same: surprise. Embarrassed glances, a titter here or there. Because, when the dam breaks, our cup runneth over. And the judgment is always the same, I can see it in their eyes. (And no, I am not particularly sensitive to it, but I do a bit of mind-reading, so I can tell) It MUST be the parenting!" That's right, if I would only discipline my brood, that would stop it. I can almost hear the thoughts in my head:

I mean really! How can she possibly let him go on and on about that video game? Asking over and over again? Doesn't she enforce limits? Doesn't no, mean no? It is her fault he is like that, what an absolutely disagreeable little boy, haranguing his mama like that!
What is WRONG with that little girl, she won't stop whining! She looks old enough to be patient, what is that mother teaching? And it's shameful the way that father is carrying her, rather than making her walk on her own instead of collapsing in a heap on the floor! Why, in my day...
It all comes from giving children too much power and too many choices!
(Someone actually did say that to me!)

Understand, we are often on the way out when this kind of thing starts, but it's still the same thing. Why can't you control your child?

I suppose at that point, I have a choice. I can explain to the kind strangers who really just want the best for my children that there is autism present in our family, and thank you very much for your understanding and consideration, I am dealing with it. Then I can also explain, when faced with their blank looks, that there are different levels of autism and no my children don't check out mentally or stack blocks in the shape of the Eiffel Tower, they just respond to situations with less control than most kids sometimes.

I could say that.

Or I could mentally tell them to piss off and walk away with as much pride and aplomb as I can muster.

Guess which I do more often?

T, who is tired of explaining and just not going to do it anymore

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12 sent chocolate:

Kelly said...

Although my son is not formally diagnosed with anything he struggles with fitting in and general social skills...being a licensed clinical social worker and a mom I feel, really feel, that ugh in the pit of your stomach when you witness others judging you and your child.

Anonymous said...

Your children are blessed!

I was 35 before I even learned what was "wrong with me". Turns out there is nothing wrong with me that a little communication and understanding from others won't alleviate.

People think you have "misbehaving kids"? My step-son once called me "Psycho B*tch from Hell" after witnessing one of my (royally infrequent) boinking out sessions.

No matter how aware of it I am, it can happen and it usually happens when I feel like the world is spinning out of control. Kids have less control.

Nevermind the NTs, if your kids can control their boinking even sometimes, then you're doing a great job!

Hang in there, woman. Being an Aspie is difficult at the best of times, being the Mom of Aspies must take someone really special.

S'cuse me while I go call my Mom.


ginabad said...

This was the best dang post I've read today! Other parents DON'T get it, other people don't get it. Like my friend who is a know-it-all-mom, who has crusaded for years about why don't I do this or that with daughter with Down syndrome. Finally she admitted, "I guess I really don't get raising a child with a learning disability." (of course she keeps forgetting that)

You've given me hope for both of my girls (Zoe is 3 with autism). To believe that it could be possible for Zoe to sit in a regular class one day is good.

And don't even get me started on the R word.

Anonymous said...

Amen and Amen. What is it about having children with disabilities who "look normal", that leads all onlookers to assume that it must just be bad parenting?? I HATE that kind of judgmental attitude. Now that my kids are older, they don't elicit near the surprised looks that they used to, but I remember practically looking at the ceiling so as not to see the eyerolls and smirks on people's faces around me. It was just safer for EVERYONE that way...

MrsDesperate said...

I so relate, hate that strangers and friends, even family, think they have the right to judge us. At least with one pretty cruisy, well-adjusted child it is easier to show that it's not just our parenting. It's just that one needs a lot more help and understanding. Sometimes feel like wearing a t-shirt - No he's not just being naughty and I'm not a bad parent! For all that, he's a great kid and I wouldn't swap him (or his sister) for the world. They both have their challenges and have helped me become a better person.

Anonymous said...

i read redneck mommy's blog post too - LOVED it and she was spot on - as are you. My daughter at 13 still looks 'normal' but bc she is no longer 'little' her "odd" behavior, drooling, big back brace (scoliosis) and other squeaks, squeals and stims REALLY stand out. I think it's easier in some ways when your child clearly has a disability bc then people don't just assume your child is poorly behaved or you are too 'permissive.' but, it has its down side that many people are too fearful to approach you or your child. i was on the playground once w/ all 4 kids and a group of 8 year old girls were screaming about my 13 year old daughter "AHHH , stay away from her she's CRAAAAAZZZZY" and laughing. i walked right up to them and read them the riot act. They were pretty humiliated. it was really their parents i wanted to speak to... it all starts w/ the parents - kids aren't expected to know better on their own.

thanks for such a great post!

Recent blog post: Humbly, "It"

Anonymous said...

Thanks so much for taking the time to comment, pepperfire! I really appreciate your perspective. More than you know.

Anonymous said...

Thank you so much for this post! My daughter is 2 1/2 and undiagnosed and I have felt all the same things you mention. The older she gets, the more obvious her difference are becoming and I feel the way people look at her and I. It gets very frustrating. Glad to know we're not alone!

Anonymous said...

jayewalking, you might want to consider getting her diagnosed, especially at such a young age. There are all sorts of early-intervention programs out there designed to make great improvements. It was too late for my kids in that regard, since they were both diagnosed later. But the younger a child is, the better they can do. Thanks for stopping by and hope to see you again!

Anonymous said...

thanks for commenting, Dr. Mom. It is amazing how many people out there do things without realizing they are hurting others. I don't think the are malicious, they just don't have a personal connection, so it seems harmless. Yes, it definitely starts with the parents, but that takes involvement in the kids' lives with their friends...not all parents do that.

Anonymous said...

Bronnie, I hear you! I have grown more through parenting my children than with any thing else I have ever done. It certainly stretches you in ways you wouldn't expect.

Anonymous said...

ginabad, there is ALWAYS hope, and don't ever let anyone tell you differently! It is good that you are educating your friends. Keep the faith!

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