Sunday, September 2, 2012

super aspie

i've been thinking about this aspergers thing again. actually, i've been thinking about it for the past 6 years, but as brooke gets older, my perspective changes.

i've been trying to decide if i consider her to be "special needs." i've never had a real need to qualify her in that kind of way because she's never been in day care or school. nothing more organized than sunday school or gymnastics class for the most part.

to me, she seems completely "normal" and functional much of the time. when we're home, which we are the vast majority of the time, she's happy and content and generally busy doing things by herself during her free time. we've developed routines to help her deal with the things in life that she hates or doesn't understand and we don't see many freakouts anymore.

when we went on the cruise a couple weeks ago, i was filling out registration forms ahead of time for the carnival camp. it was to allow brooke to do activities on the ship with some other kids and to give chris and i the chance to do something without her. there was a separate form to fill out if your child is "special needs." i hesitated and then didn't fill it out. she'd done so well at camp in ny the previous month that i thought maybe we wouldn't need to tell anyone on the ship that there's anything different about her. i thought maybe she could just be treated like every other kid and be fine rather than being treated with special concern or condescension.

i was wrong. i ended up having to fill out the form after all once an incident in the child care room popped up, resulting in her screaming and crying and insisting that she was never stepping foot back in that stupid place again. a couple days later she was reluctantly willing to try again in order to see a kids only magic show. as she walked sullenly away from me at the entrance, i quietly spoke to the woman in charge of check-in and said, "brooke is.... slightly autistic... and..." but before i could go any further, she said, "the whole staff is aware of brooke and we know ALL about her and her needs."

i swallowed the giant lump in my throat and all the words that wanted to spew out. i resisted the urge to slap her or thank her or snatch brooke right back out of that room. i clenched my teeth and i walked away. i sat on a bench a few feet away where i could see brooke through the window for the whole hour she was in there because she wasn't even willing to go in unless i promised to stay right in that spot. while i sat there, i held back tears. thinking or saying the word "autism" in reference to her makes my heart ache and my eyes leak. i rebel against it.

i want so much for her to like life. i want her to have all the chances to experience everything good and fun. i want her to be treated like all the other kids, but when she is, the result is all too often a fiasco. i want her to feel like she fits in.

but much of the time, she doesn't.

recently i've had some conversations with family members about her having aspergers. i think it's hard to understand. i don't for a moment feel like brooke is broken or defective or disabled. i don't feel like she needs to be "cured" if such a thing was even possible. she is just wired differently in a world where most people are wired more similarly.

i've been trying to think of a way to describe it to someone who hasn't done the research and doesn't want the long answer. i haven't found anything i'm fully satisfied with, but the best thing i can compare it to is being left handed. in a world dominated by righties, there are challenges for those rare lefties. they aren't sick or defective or in need of correction, but they need special scissors and they hold their papers differently. sometimes they'll bang elbows with their rightie neighbors, but if a little bit of care and planning is taken, the differences can be comfortably accommodated without a lot of undo attention.

that's what i try to do in brooke's life. i try to do that bit of planning and accommodating in advance so that things can flow smoothly. i'm trying to teach her how to explain herself and her differences to people in a clear and concise way so that they can understand her unique needs and still respect her as a whole, interesting, articulate little human. i'm also teaching her that just because someone is older than her, it doesn't mean they're right. i think it's really important for her to believe in herself and her own knowledge and opinions because there are so many ignorant, judgmental, rude people, adults included, in the world. she needs to trust that she's okay even if someone tells her she's not.

it seems to be working so far. she considers aspergers to be her own personal superpower. she embraces her differences and feels sorry for those of us who don't see the world from her fabulously interesting perspective. i hope she'll always feel that way about herself, no matter what she encounters in her life. 

19 comments:

  1. Labels are hard. Autism, Aspergers, it's all very hard to come to terms with. I have my own struggle with recently being "labeled" with Borderline Personality Disorder. There's so much stigma attached to certain labels. But we can't let them define us. They are just a part of us who make us who we are.

    You have a very special girl, and on good days, I like to think I'm a special girl too.

    Love you and your kiddo. xoxoxoxox.

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    1. you are a special girl, jo. and maybe it's not a borderline personality disorder so much as a personality distinction. you are your own flavor and it's a good flavor.
      i like to consider that brooke's autAstic, not autistic. it feels better to my soul.

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    2. Maybe Fantistic? :) I like your thinking.

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  2. What a beautiful perspective you have given Brooke! You are an amazing mother.

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  3. I love this post.
    Yes we have found it challenging to explain Aspergers to family members and friends. The only people who really get it are those who work with people the same as our son.
    Having had our son in mainstream school before we home schooled, I know all too well of the difficulties an Aspie faces every day. There is no routine, way too much stimulation, and so much unpredictability. It's a nightmare for the poor kids.
    The only down side to that is that we need to make an effort to get him socialised.

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  4. Brooke is lucky to have such a patient, loving mother.

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  5. This post really wrenched at my heart Sherry, I'd have slapped that woman right the minute she said what she did if I had been you. Just because your daughter has aspergers doesn't mean that she's mentally defective or anything, I know so many people who have autism and they can function just fine and as time goes by and Brooke learns to adapt she will become one of them, I guarantee you. This post still really moved me though, maybe because sometimes in the past I've felt like her, I don't even know, just stay strong Sherry.

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    1. thank you, matthew. your comment was very sweet. and i hope you feel like you're just a lefty in a rightie world when you're facing hard stuff.

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  6. Oh, I totally teared up reading this! I'm so sorry that lady on the cruise ship was such an idiot. I had no idea how protective I would be over my son until he was born. Mama Bear is fierce, yo. I can only imagine how protective you feel you need to be. You're a wonderful mother and the reason Brooke is such a happy person.

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  7. I wish people in general could understand and accept others' differences as if they were simply a result of being a lefty. I wish when I said I suffer from depression and anxiety, that people could just shrug it off as something akin to being left handed. A part of me - not a bad part, just something that makes me a little different from others. Sigh...

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    1. i wish it could be like that too. we'd all have more peace and happiness if that were the case.

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  8. I can so relate... you have no idea. Oldest is undiagnosed officially, but I know he has Asbergers. Youngest is diagnosed within the ASD umbrella. Here's what I have learned. Youngest was diagnosed and it got him the understanding from people that he has needed to get him to where he is. He's had access to incredible teachers, therapists, etc. and he has developed into such an amazing person thus far. Oldest was never diagnosed simply because he can function in society. Yes, sometimes he feels like the odd man out. Sometimes I have to explain things he just doesn't get since he is so literal. And sometimes I have to step in and sever "friendships" before they become venomous. He knows he is different, even without the doctor sign off.

    In the end, they both have to deal with the real world. The real world which is often cruel and unforgiving. Label or not, it's their reality. The better they handle and accept this the easier their lives will be.

    Lastly, there should NEVER be shame in not being a cookie cutter kid. :)

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    1. i wouldn't want a cookie cutter kid. they seem rather bland when i look at them through my own lens of skewed perspective.
      brooke's never been diagnosed. we haven't had health ins on her for quite a few years, so she only sees a doctor when she's sick. i don't need a doc to tell me what she is though, i can see it very clearly. and i've also discovered in talking to some docs that i know more about the subject than they do. sad.

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  9. So many perspectives out there, Sherilin. Thank you for writing this -- for those of us without experience or knowledge in this area, your words may be all we have.

    Pearl

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  10. Brooke is lucky girl to have a mom like you in her fabulously interesting corner!

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  11. oh, this one had me hurting. I think the handedness is a great way to think of it. It is so hard for us mamas that just want everyone to understand and accept!

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  12. "she is just wired differently in a world where most people are wired more similarly". I'm going to have to keep that one in my little brain chest.

    Sherilin, I'm sorry it took me so long to read this, because you KNOW I'd relate to it. I've lived that "we're all aware of.." the autism thing so many times. Every time I think Jack will just fit right in with everyone else, there's that reminder.

    I think Jack's pretty happy the way he is too, luckily.

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  13. It is SO worth getting to know and understand an "Aspie". A neurotypical (average-wired brain) person may be confused and frustrated when they first meet or attempt to be-friend someone with Aspergers. But, with a small amount of patience and willingness to learn how we think and communicate, you will soon realize how valuable and rewarding having an Aspie friend can be. Aspie's are generally honest, loyal, highly intelligent, creative, extremely ethical, and very loving when you get to know them. My wife and I were told our 3-year old little boy was asperger 13 years ago. I wouldn't chnge ANYTHING aboout him! He is the sweetest, most intelligent, most interesting 16-year old young man I have ever met and I could not be more proud. I only wish people would get to know him BEFORE they pass their judgement on him. Those that do, love him almost as much as we do.

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don't let me be the only one doing the talking around here. spill your guts!