Figuring out what I wanna be when I grow up.
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Tuesday, January 3, 2012

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.

63 comments:

  1. Girl, sometimes you write from my heart.

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  2. What Lisa said.

    Funny how when they/you get older you swear, SWEAR you have things figured out. And then something like changing desks in the classroom make him melt like butter in Paula Dean's kitchen. Sigh.

    Autism I hate you...I however love my son to bits. Love him to bits. Just as I know you do. Hang in there hon.

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  3. Amazing Karen. You should submit it to a writing competition. Touched my heart :-)

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  4. Oh my goodness, Karen, this is such a brilliant post - honest and painful and wounded and loving and fierce. You write so wonderfully about your experiences. As you know, my trials and tribulations with my daughter's health/disability are of a different nature, but I can relate to much of what you say. I did all the fact-finding at the start, tried to find alternative treatments, etc etc, before realising the futility of it all. But even now that things are more settled and we are more accepting, the emotional rollercoaster still finds a way to churn your stomach from time to time.
    You do a great job of being a mum. How do I know? I read it right here. You may be overwhelmed, and steamrolled. But how you love him! You tell him so, and you help him. Every day. xxxxxxx

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  5. You nailed it.

    It takes me by surprise every. single. time. when the teacher points out something my son does that is completely atypical in her view but is just our version of normal in my view.

    And, yeah, just when you think you have things figured out, they change. I never really relax, even when things seem to be going well, because I'm always bracing myself for the next inevitable nightmare.

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  6. Very well said and wonderfully written. I have been there, done that. All of it. And, if it makes you feel any better I'm called an 'idiot' every day! Lots of finger wagging from me too!!

    xx Jazzy

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  7. YOU are AWESOMEWONDERFULAMAZING. JACK is FABULOUS. Autism SUCKS. Jenny McCarthy is Satan's own arsehole. Sarah xxx

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  8. Same here with I am over bipolar. A psychiatrist I know calls it "fantasies of escape and control."

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  9. yeah, thanks Lisa. Mission accomplished then :)

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  10. thanks Lizbeth. I know you're good friends with THE MELTDOWN too.

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  11. well maybe I'll take your advice, Michelle, and that is what I'll do. Thanks :)

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  12. Curtise, whether it's Autism or another issue we're dealing with, as Mothers it consumes our thoughts, so we can all relate. Muchas gracias for your kind words!

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  13. Grace, I love this:

    "It takes me by surprise every. single. time. when the teacher points out something my son does that is completely atypical in her view but is just our version of normal in my view. "

    That is exactly it. Anything becomes "normal" over time, so what is normal if normal is really just suggestive? Fuck popular opinion, I say.

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  14. jazzy, in a perverse way, it does make me feel better :) We work on the "idiot" thing all the time!!!!

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  15. Sarah, only you could come out with something so hilarious. Satan's own arsehole. I'm in love with you now.

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  16. Jeanne, that is very interesting. People who make finite conclusions will never be able to see infinite possibility. More's the pity for them.

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  17. Tears. I can relate to so much of this. Thank you for posting it. I'm so glad we met on Twitter!

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  18. sometimes i have the foolish audacity to start to think brooke has outgrown it or beat it or we were just wrong about the diagnosis. so often she seems so vibrant and funny and "normal" that i forget what's lurking right under the surface. i forget that the way i deal with things with her isn't the way most moms have to deal with their kids. since she's my only kid and we homeschool, i don't have much comparison, so it's easy to just think the way we live is the way other families live.
    then something happens and suddenly it's all back, right in my face and everyone else's who's around. and it's not outgrown or overcome. it's just that we've learned coping mechanisms to help process the stuff we've come to expect. it makes me thankful for how far we've come and that it isn't constantly being dealt with in such a loud, freaked out, angry way every day anymore.
    i love this post, kar. and i love you too.

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  19. Karen this is such a powerful post.

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  20. This comment has been removed by a blog administrator.

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  21. I am with everyone else on this one.

    And you can add this one later in life:

    When daughter/son's boyfriend/girlfriend dump them 2 days before new years, because:

    " I thought you were going to get better and you aren't. I can't fix you. I can't deal with you anymore"

    Wait til that one gets thrown up in their face........especially when the said daughter had an especially hard christmas, because of noise, confusion, excitement, lack of sleep, driving etc....that caused every dam symptom to reappear. Imagine thinking you were getting better only to find out you werent and then get dumped because of it.

    Ya, these invisible disabilities, whether autism , brain injury, learning disablities etc....... they really really suck......

    So sorry, karen.....but I can relate to some extent.

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  22. Sherilin: "i forget that the way i deal with things with her isn't the way most moms have to deal with their kids" Yes, that is so resonant with truth! That is exactly it. We live it all the time, so it is our "normal," and nobody fears normal.

    Then sometimes all it takes is an "ohmygod" look from someone else in the room, and you realise, damn, we're still HERE.
    Yeah, I love you too because I KNOW you get it.

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  23. oh fuck. Sista, I know! Boo boo boo.

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  24. Melissa, empathy is everything. Everything. And you are right--just like Curtise (pastcaring is her nick) said; it's not just Autism, it's the always-heartbreak of all the struggles of our children.

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  25. Please submit this story to any publication where this would be helpful to others. Please? No quips from me, no plays on words, no observation even that I could ever think of making. Simply a request to not leave this on your blog alone. It is too powerful to just move on to the next entry. So, please? As a friend?

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  26. i love that daniele dropped the f-bomb. she totally gets it too. you guys are 2 of my most favorite internet world people.

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  27. A lot of times I read your blog and laugh out loud. Sometimes, like today, I read it and think, 'Wow, this is one strong woman.'

    You keep truckin' along. You are clearly a wonderful mother, and a great writer. And I agree with the other comments about submitting this for publication - it's a powerful post.

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  28. I have the quiet moment after the meltdown where everything is peaceful for a few minutes where I think about the fact that my body grew this child. After particularly bad days, I recollect my pregnancy month by month and remind myself that I did everything right and I couldn't have done anything different.

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  29. Daniele, you must have snuck in there while I was replying! Yeah, I know you know too!

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  30. I will try Matt, I promise. I just have to find the place that wants it! Any suggestions before I head out into the vast world of the internets?

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  31. Thanks Sherilin. I enjoy dropping the f bomb, and I don't even mind so much in the comments, but I don't do it in my blogs where family might read. But in the comments section, it's no holds barred!

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  32. Thanks Vesta, I appreciate what you said. I will submit it, since you all think I should, I'm just not quite sure yet where to begin :)

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  33. I wish I had that assurance for myself Lisa. I think of a few key things in the pregnancy/birth and wonder if that had any impact on anything...

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  34. okay Matt, submitted to the CBC Canada Writes short non-fiction story contest.

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  35. how about submitting this to some parenting mags,todays parent, canadian family,parents,or to canadian living, something like that, they do publish readers articles, and this is really too good an article to be missed by all the people trying to do the best for their kids day after day.

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  36. Yay, Karen! and Yay, Paula! Ironic that the CBC is doing a series entitle, 'Chasing The Cure', dealing with the edge of complex health concerns.

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  37. thanks Paula. You're so smart. I knew you and Matt would have good ideas.

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  38. Ironic Matt, or TIMELY, WONDERFULLY TIMELY?

    Yay for both of you!

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  39. Karen - I don't talk much about the IEPs on the web, but here, I will say this: I love your work, your bravery, loyalty and honesty.

    This year I want to feature people on my blog, and spread via FB (I have waaaaay more people on there - close to 700).

    I am humbling asking if you will allow this post to be the first feature on IAMTHATIAM for 2012 and let it spread through FB and Twitter (1,400+ peeps). I have some Autism moms, too and would love for them to know about you, your work and let them find your coolness and your angst.

    This post rocks - and I'm happy to feature you again and again, too. You ARE a rock - I feel you - IEPs and more. : ) (((hugs))) ~ Christina

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  40. I LOVE this blog! We all need reminding sometimes that ASD is still a struggle everyday for the person who has it. A professional actually told me once that it gets better with age and I almost fell off my chair. She cited the example of a 40 year old with autism who we both knew. He couldnt work because when he tried, people were mean and bullied him and the demands of his work were outside of his comfort zone. If you said certain trigger words or phrases to him, he still went into a rage. People don't grow out of autism - they and the people around them just learn how to cope with it and manage the things that bother them.

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  41. Jenny McCarthy should stick to using her mouth for sucking c#*k and not misinforming people about autism and vaccines.

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  42. Christina, thank you. I think you're awesome, so I'm honoured. By all means. Just put me down as "karen somethingorother" :) I saw your post about the feature thing, and got all confused (secret dipstick here!) and figured I'd give it a second read when I got a chance, but, helpful girl that you are, you already did the brain work for me.

    Feature away. My bloated ego doesn't mind, heh heh.

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  43. Thanks Cat, great comment. I appreciate you weighing in as well.

    It's interesting that because certain little "things" will disappear and/or improve, we can misconstrue this as "healing" in a way. I was reminded that just a few years ago if someone said; "Hi Jack, how are you?" he'd answer "Hi, how are you?" and now he simply says "good."

    We all learn to live with and cope with who we are I guess.

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  44. Hi Anonymous, thanks for giving me a laugh! I almost blew my coffee on the computer screen, so, that's awesome! Come back any time!

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  45. Oh, honey, oh my god - I'm so sorry that you got kicked in the teeth.

    You're amazing.

    Also, I love anonymous SO HARD for that fucking Jenny McCarthy comment.

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  46. Sue, wasn't that comment HILARIOUS? I mean, I don't know what opinion I have about Jenny McCarthy--I was just pointing out that suddenly she was ALL OVER THE NEWS just when I started thinking about all this Autism stuff.

    Anonymous, however, is much less wish-washy than I. Lurv it.

    Thanks for your kind words!

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  47. And because you wrote this, other people don't have to feel alone like you did. That's a really good thing.

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  48. I do have a few moments I wonder about too but I have to ignore them or I'll drive myself crazy. ((hugs))

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  49. thanks dbs, that part is important to me.

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  50. true Lisa, because it's not like we can change the past anyway, right? Thanks :)

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  51. Yay Thanks, Karen!!! This is great, and you deserve all the ego love you can handle!

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  52. you're up sister - I put you on two blogs : )
    cuz I lurv you, too!

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  53. Thanks Christina, you fabulous woman, you :)

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  54. Perhaps a record number of comments? Another blogger I know, referred to this article. I believe her locale is pajamaramblings.blogspot.com

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  55. Really Matt? Thanks. I'll check this blog out.

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  56. You had me at the 7th paragraph...

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  57. Ha, thanks Kim--now I'll have to read that paragraph again!

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  58. Add me to the throngs that say you should try to get this published in print, too.

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  59. thank you Shalini. I will try. I'm not sure exactly how to go about it..but that's what GOOGLE is for!

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