a few months ago i saw a preview for the movie "temple grandin." it's the true story of an autistic woman raised in the 50's & 60's who pushed through the struggles & hard stuff that goes along with autism & she accomplished great things in her life. i've heard rave reviews from some friends of mine who know that this topic is of interest to me & tonight i finally got to watch it myself.
i couldn't wait to get brooke to bed tonight so that i could make a bag of popcorn, grab some tissues & plop under my fluffy, red couch blankie and watch this movie about an amazing woman. i do love a movie based in truth.
i will be the first to admit that until the past few years, i've never understood autism at all. i'd heard of it & felt sorry for the parents of kids who had it. i could picture kids flapping their hands or rocking with their faces screwed up. i could only picture a severe disability in a child & nothing more. i never gave a thought to their lives as adults or what it must be like to be them.
about 3 years ago i met a lady at a park & brooke had a really good time playing with her son. he's close to her age & the mom told me that he's been diagnosed as being on the autism spectrum.
a month or two later, i went to a neighborhood block party at a friends' house & brooke spent most of her time playing with a little boy who i was told at the end of the night has asperger's syndrome. i'd never heard of that before.
shortly after that i watched a season of america's next top model & there was a girl on there who, for some reason i couldn't figure out, kept reminding me of brooke. they looked nothing alike, and the girl was about 20 while my kid was 5, but i kept thinking that she was like a grown up brooke. at some point in the season, the girl told her roomates that she has asperger's syndrome.
i went to the school box store where loads of educational supplies & books are sold & there, sitting on a shelf where it didn't belong, was a huge book with the words "ASPERGER'S SYNDROME" in bold on the cover. i picked it up because it occurred to me that since it kept popping up, maybe i needed to learn something about it. i started flipping through it & came across a section that said something along the lines of, "if you're the parent of an aspie child, these are probably things you deal with regularly..." i stood there reading in that store while brooke played with a train set & started bawling my eyes out. it was all i could do to even continue standing up because i felt like someone was writing the story of my life. how could it be possible that my beautiful, perfect, articulate girl could be defective? surely she wasn't one of these sort-of autistic kids the book was talking about. she didn't flap or rock. she spoke clearly; better than clearly, actually!
i went home & started doing some online research. there were definitely some similarities between brooke & the aspie kids i was reading about. i felt confused & sad and... i don't even know what all i felt because my emotions were all swirling like a snow storm inside me. i cried a lot because i felt like if i came to the conclusion that brooke has asperger's syndrome, i was calling her broken. defective. and yet i couldn't stop reading. i started observing her even more closely over the next months & mentally tallying up all the ways that she could be aspie & all the ways that she couldn't. some days i was convinced that she had it & other days it seemed like sheer foolishness to even consider such a preposterous thing.
during the past couple years, i've gone through cycles where i dig myself into the topic full force & can hardly think of anything else. then i have to take a period of stepping away from it so that i can simply absorb & observe. i've learned that it looks different in girls than it does in boys. that might be why it's been only more recently that girls have started to be diagnosed regularly. i've learned that it can be hard to get a diagnosis because many pediatricians are extremely ignorant on the topic. i asked brooke's pediatrician about the topic at her 6 yr old check-up & he basically told me that there's no way she could have it because she's well spoken & isn't a math or science whiz. he said this after asking me no questions about her or her schooling at all & only spending about 5 minutes with her during her check-up. (this was the first time we'd seen this particular doctor) he clearly knew far less about the subject than i did & didn't care to spend the time pursuing the subject. i decided then that i didn't need a diagnosis because there aren't any medications & behavioral therapy is the main plan of action for a kid who is diagnosed. she's not in a school because i teach her at home & i can do the therapy myself.
i was reading look me in the eye last year & it's written by a man who is an aspie. in it he tells his life story & it's great example of a success story. brooke saw me reading it & since there's a funny picture of a boy on the cover, she asked me what it was about. i told her that it's about a guy who has asperger's. she giggled at the name & then asked what it is. i gave a brief explanation & she thought about it & then asked for more. that's pretty unusual since she rarely pays attention to what i'm reading. i told her some more things & she kept asking for even more information. then after she was quiet for a few minutes she said, "that stuff sounds like me. do you think i might be an aspie?" she asked if we could leave the playground & go home to google it so she could learn more.
in the course of my learning about autism & asperger's syndrome, i've finally come to understand that it's not a stamp of defectiveness. there are varying degrees of autism & the aspies are at the end of the spectrum where they have the highest level of "normalcy". i've gotten over the idea that it's a shameful thing or something to be tucked away like a dirty family secret. it's not something to be embarrassed about. people who are autistic, at any point on the spectrum, are absolutely as valuable as everyone else. they all have struggles & challenges as well as strengths & talents. if it weren't for the people on the spectrum, i think that we wouldn't have many of the things in the world that benefit all of us, because they're inventors & designers & creators. they think outside the box & excel at their areas of interest. they're artistic & smart & funny.
i think the movie "temple grandin" is a fabulous example of someone being autistic & leading a wonderfully productive life. it shows very clearly how difficult life is for people who have it, but there's a line in there, spoken by the mom that keeps ringing loudly in my head - "she's different, but equal."
so there it is. we have no diagnosis, but there's something fabulously interesting & unique about my sweet girl. she's difficult & exasperating & hilarious all in one adorable package. whether or not she has asperger's syndrome, i think i will always remember that line & how fitting it seems in relation to brooke. she's different, but equal.
Sherilin, it is my honor to have your family as friend. I know we don't hang much because of our varying schedules and such, but the times we do hang, it is always worth the few moments we have to laugh and learn and be together. I'm so glad you took the time to watch Temple Grandin. I learned that we all have a choice to take the bull by the horns and to not let anything (even the thing that makes us different) keep us from accomplishing great things in this beautiful life we've been given.
ReplyDeleteThat beautiful, articulate, exasperating, hilarious girl of yours, aspie or not, is going to make a mark on the world. And her beautiful, articulate, exasperating, hilarious mother will get a big chunk of the credit. I love you both.
ReplyDeleteOne of my boys displayed many characteristics of Aspergers. I literally drove myself insane. He was assessed by a team and they said that he was "fine" and that I was transferring many of my OCD tendencies, etc to him... Your daughter sounds like she is highly creative and very intelligent. I think you have no worries.
ReplyDeleteWhy don't comments have "like" buttons, like the ones that are on facebook? I would "like" your mom's comment!
ReplyDeletewow! i dont know a lot about those but it does open your eyes when you read about stuff that pretty much describes your kid to a t. from a mom with a crazy kid... to another mom with a crazy kid (lol) let me just say this: no matter what they may have, or dont have, we are raising them to be themselves, therefore they will differ from most other kids automatically. i think you are doing a fantastic job. if she does have as or autism then you are so well prepared. i have never stopped to think that mine could or would have anything. i just take him as a boy with a great imagination! i think this of any kid who is different than the "cookie cutter" kids i see in my family or even out in public. last weekend he had his first homecoming dance. he wanted to spike his hair. i so had my doubts about letting him but then i thought screw it! if this is the worse he is going to do, then people will just have to accept him and get over it! he has been picked on since kindergarten (if you remember) and ive never been able to stop it... well last weekend, he was the hit of the ball! i was astonished! all the kids who picked on him before were hanging out with him and are now talking to him at school! i think by just letting your kid be your kid and have a mind of her own, you are making her the most spectacular kid! youre an awesome mom and just take it all one day at a time! =)
ReplyDeleteginger, i'm really glad to have you for a friend as well. rare though our meetings are. i've learned a lot from the time i've spent with you.
ReplyDeletemom, thanks. you get big chunks of credit for us as well. =)
missy, interesting that the docs blamed you for your kid's ocd. have things gotten better as he's gotten older?
carrie, i wish there was a like button on here too.
billie, i agree that we don't need the labels if there's nothing that's going to change if they are or aren't diagnosed. for myself, i think it helps me to better understand her quirks when i can read a book that explains why she thinks or reacts how she does. it makes me feel less tense about the really hard things when i know there's a reason for them & it's not a matter of bad behavior or lacking of parenting skills.