"Mama, I don't LIKE it!" My JBean wasn't happy. Although this is not that uncommon, it was still a concern. The Nutcracker was coming up, and she is due to perform.
Last year, she was a flower. "I liked being a flower mama. Flowers are graceful, and princess-y. It was a pretty dance." This year, they are lambs. She is less-than-thrilled.
"I hate the Lamb Dance! It's stupid. The costume is silly, I look like a little kid." I figured reminding her that is indeed what she is? Not so helpful.
Early on, I told her she didn't have to dance if she didn't want to. The Stage Mother? I am the furthest thing from that person. You won't see me pushing my children against their will. I have a theory about extra-curricular activities: if it isn't fun, what's the point? This may be because I was, if not born with two left feet, in possession of them now. Dancing well is hard for me, and I don't have autism. Still, if I were to try to dance, with actual choreography, you would think I was having a seizure of some sort.
I have given her every opportunity to bow out gracefully. She won't be a prima ballerina; she is still in the first-level class. All of her friends have pretty much moved up a level. She just isn't ready. As a parent, my heart hurts just a little bit for her. I worry as she gets older, girls will make fun of her. But she won't quit. She assures me that she wants to dance. And she does. She just doesn't love this dance. Still, she is trying, and that's all we can ask. To me, that in itself is a victory.
Now I am looking for a triumph over the fear I have for her. The great, white-hot worry that wakes me at night. I think of the time that is coming, soon, or not-so-soon, when the girls look at her and laugh. When they look at her, whispering behind their hands. When it hits her just how behind she is, and that without 10,000 hours, she just isn't going to get those dance solos that she may be wanting. She will be tried, and found less than adequate. And though we cannot keep our children from pain, it is still a very difficult thing to watch. A lump in my throat and tears pricking my eyes, I wait.
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
I don't usually post more than once a day, but my friend califmom found this and I HAD to share it with you. What having Asperger's is like, from the kids themselves who have it. AMAZING video.
The embedding is iffy, so if you can't see this, PLEASE go watch it here:
What Asperger's Is Like
"Life. slightly dark, cheaper than candy, and half as sweet."
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