This first feature is by Karensomethingorother at Ow, my angst on Blogger.
Karen's words and passion are moving, amazing. . .and will change you. Her wit, wisdom and whimsy are all wrapped up in her huge heart ((she sings damn well, too)). She is amazing. . .and so is her story featured here. I'm honored to have her as our first 2012 feature here on IamthatIam.
The Spectrum is a Sneaky Bastard
You know, given enough time, I think we can get used to anything. This means, that the initial shock, and trauma that sometimes comes with new and abrupt change can not sustain itself.
Say, for example, you find out someone you love is sick--scary sick--you will have all the appropriate bodily responses: heightened adrenaline, racing pulse, night sweats, full-on anxiety attacks, inability to eat, shaking limbs, etc., but over time you will probably become accustomed to this new reality.
So, remember when this Autism business came into your life? Well, it was already in your life before you had a name for it, or a diagnosis. You just didn't know it yet. How did you feel that first time somebody took you aside for a confidential chat about your child, trying to sound reasonable, regretful and soothing all at the same time, and said what you never wanted to hear: that your child was "different" from other children. That your child was in his/her own, new, "defective" category. That your child has an AUTISM SPECTRUM DISORDER.
Now, before you get angry at me, when I use the word "defective," we all know that this isn't so. It's an emotional INITIAL response to finding out you have a new, HUGE thing to deal with. You know it's huge: Jenny McCarthy was suddenly out there on all the magazines and on tv as an AUTISM WARRIOR and suddenly thousands and thousands of mothers are there behind her crying out about VACCINATIONS, and DIET and WHEAT and GLUTEN and CASEIN in the diets, and there are those stories about BISPHENOL-A and my god! My child drank his milk from bottles made with BISPHENOL-A and suddenly...
and suddenly
there was this AUTISM TRAIN and you felt panicky because you needed to get on that train but how did you get on that train when it was already so full, and moving so fast?
And you googled. And you read. And you were in that section of the library reading the Autism books and feeling so alone. And you cried at night, because suddenly you saw your son/daughter's WHOLE LIFE ahead of them, and you saw them without friends. And you saw them unmarried. And you saw them living with you their whole lives. Sometimes this was okay, because damn it, you will protect them FOREVER, and you will, but you always thought there should come a time when your children become old enough to start, happily, their own lives, and maybe this will never be.
You read about vitamins, and nutrition, and you printed sheets off the internet, about how your little guy needs MAGNESIUM but how will I get magnesium in him! All these dietary reports say that MAGNESIUM is one of the key minerals autistic children are lacking in...
But in the meantime, you have to get some sort of SERVICES for your kid, but all you do is get in line. Waiting list after waiting list for IBI services and respite services, and oh, have you applied for the DISABILITY TAX BENEFIT? Wait? Wait? My son is NOT disabled?? He's smart, and he's wonderful and all of his parts work!
You are overwhelmed.
Then, the days pass by, and the months, and the years. Your child becomes more reasonable as he gets older. The massive weekend tantrums have all but stopped. Your IEP meetings go by smoothly with nothing new to report. The teachers all like your little guy. They all know his "quirks".
Everyone in the whole school seems to know that he's sensitive to noise. No biggie. He just waits in the hall while they get the TV ready for a dvd, in case there's that initial staticky hiss. If there's feedback on the microphone during the assembly, it doesn't make him dissolve into panicky tears any longer. He simply covers his ears. No big whoop.
The morning bell is no longer so terrifying your kid is gagging as he gets closer and closer to the school, so worried about that noise that he's on the verge of vomiting right there in front of the playground.
Those obsessions at home? The way you have to talk about Willy Wonka's chocolate factory all the time, and where you can obtain Wonka bars and why human hands should never touch the chocolate river? Well, that's just the way it is. You have those kinds of conversations and you have plenty of "normal" conversations about things that are funny, things that are interesting, art you like, music you like, that kid who mouthed off to the teacher.
And things pass by nice and easy for a long time. It's smooth sailing for a long time. Those fights that are on the weekend? Well, haven't there always been fights on the weekend? Isn't that normal?
You begin to imagine that your son has "outgrown" nearly all of his Spectrum stuff. He doesn't look any different from any other kid. Hell, he doesn't even look like that Autistic kid who's in the upper grades. He's got a great sense of humour. He makes eye contact all the time. So, he's got a little bit of anxiety. So what! He's like everyone else now! He even hugs you, and tells you he loves you, and you read stories together at bedtime, and he's even been helping his little sister pick up her toys lately!
But, then every once in a while, you get a little message from the teacher: he's just starting to play with the other kids! Isn't that great? He's still copying kids in class. We're trying to explain to them that he's not making fun of them, and that some people think differently than others. He's been hostile all week and just not himself. Oh, is this because we moved the desks around and he no longer sits beside his cousin?
And then, you want to go out for an impromptu walk down in the tourist section. It's cold but you've all been cooped up for too long. Everyone's excited. Your daughter has already peed, brushed her teeth, and is putting on her winter gear without complaint. But your son...he's freaking out. He's wailing, begging, screaming, calling you an IDIOT. He shrieks; "I HATE YOU!" He smacks you, hits you, punches you, bites you. You're having a moment with your finger an inch away from his nose. You know that finger--it's the MOM FINGER, the DON'T YOU EVER finger. You're still using calm tones but you're saying; "don't. you. ever. bite. anyone. in. your. family. again."
Finally it's all over, and ten minutes later, he's getting his winter stuff on, and the look on his face is heart breaking. It tells you that he would never ever choose to be so volatile, so upset, so angry, so abusive. It's pain and anguish and regret, and that great early-young-man's desperate attempt to suppress emotions. So, hug him and tell him that you are still going to help him find a way to express emotions better, and that you always love him, and you are not mad at him.
He gets into the car feeling fine. You get into the car feeling like you've been steam-rolled.
So all this made me think: f*ck you, Autism. I keep fooling myself into thinking you'd disappeared.
Sneaky bastard.
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