Postcards from Autism Land

12 04 2008

Greetings from the land of everyone’s favourite developmental disorder! The signs proclaiming that we’re in Autism Land are all around. The pile of therapist reports on my desk, the slew of appointments on my calender and the phone calls I’ve been making and taking over the last few days. Ahhhh, and listen to that. The familiar sound of Roo yelling “Clean up the house! Clean up the house! Everybody clean up the house!” over and over again. No, she’s not doing housework. Unfortunately, because this place could sure use a clean up.  She’s pissed off because Neener is persistantly trying to  get her to play, but she doesn’t  know how to explain that she doesn’t want to, or why, and is frustrated by the asking. So, she starts shouting out the chorus of a Bear in the Big Blue House song. And now she’s spitting. And now she’s trying to bite a hole in her dress. And now she’s threatening to bite a hole in her sister. And here’s the part where I go intervene.

But the problem is, I’m not really sure what to do. How do I diffuse this type of situation? How do I teach Roo the skills she’ll need to get along with other people? How do I hold her to high expectations while making allowances for her challenges and needs? How do I parent her with respect and love in the crisis moments? How do I show her, and the rest of the world, how amazing she truly is? Hence the phone calls to a Behavior Communication Specialist, and the meetings with our social worker. I used to think only bad people had social workers. I used to think all kinds of things that were, in retrospect, totally wrong. If there is one thing I’ve learned during my adventures in Autism Land, it’s that I have a lot to learn.

We arrived in Autism Land via the Cerebral Palsy Expressway. Roo’s post-birth lung tear and the resulting oxygen deprivation-related brain injury left her with a mild hemiplegic CP, and for a long time, we figured her differences were all due to that. Or to being on a barbituate for seizures. Or to being an identical twin, with kinda weird parents. She had a  physical and social uniqueness, but Autism just wasn’t on the radar. She could talk a hole through an iron pot, she loved to hug and cuddle, and she seemed to have a great imagination. She just didn’t fit what we’d seen in those little  “Red flags of Autism” checklists, and she certainly didn’t fit popular media images of Autism: usually a boy, who can’t speak or show love, rocking in a corner banging his head on the wall, playing a Mozart piano piece that he’s only heard once. But slowly, as I learned the great fallacy of many assumptions about Autism, I realized where we were headed. A one way ticket to Autism Land. And that realization tossed many more of my assumptions right out the window. I had assumed that her meltdowns were just a phase she’d grow out of when she hit three or four, and that I would always be able to keep my cool. Instead the meltdowns escalated, and brought me to tears many times. I had assumed that I could use a verbal leash to keep her out of trouble. Instead, I have to hold her hand much of the time when we go out because she does not yet recognize dangerous situations, and won’t slow down or even turn her head in response to my most bloodcurdling screams. I had assumed that school would be a breeze because of her extraordinarily advanced reading skills and her darling, loving little smile. Instead, I am learning about social communication issues, hyperlexia, and I’ve had to defend her against a school principal who suggested that she was just aggressive, ill-tempered, and that she couldn’t function in a regular kindergarten classroom. At least, not at his school. I’ve learned that because of her special needs she will be judged, labeled and discriminated against, even by people who are supposed to help her. And I’ve learned that I will have to fight for her rights, and that I will have to seek out the tools I need to be the best mother, therapist and advocate I can be. I’m making a map of Autism Land, and I’m sending out postcards like this so that others will be more aware of the terrain we are travelling. *  

Autism is poorly understood by most people, and no wonder. It is a complicated thing. I am only beginning to understand how it affects Roo, and our family as a whole. I learn more every day. Like today, while flipping through five pages of recommendations from the Occupational Therapist, I learned that there is something I can do with Roo on a daily basis to help her develop life skills, strengthen her co-ordination and motor skills, and provide needed sensory input and stimulation. It’s called housework.  It suggestes that she regularly help wash dishes, fold clothes, sweep, and tidy up. And that it is good for her! Awesome. The next time I hear her yelling “Clean up the house!”, I’ll remove her from what ever is frustrating her and give her a good ol’ theraputic laundry basket. Autism Land doesn’t have to be messy all the time.

 

*P.S. My apologies to my sweet Mr. Blister. He is my partner, and he is learning and working right along side me; but I feel like the flow of the writing suffers if I use “us” ,”we” and “my husband and I” all the time. So, I’m using the royal “I” here. We’re on this journey together. 

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9 responses

12 04 2008
Heidi

My one true love in life is sports! One of my least favorite things to do is read. I am not proud of that it’s just the way it is. I absolutely adore all sports. Motocross, football, auto racing, and especially hockey. I have been a Montreal Canadien’s fan ever since I was a little kid. I wore my # 10 Guy Lafleur Jersey to school every day fom Grade 3 until I grew out of it…well ok I haven’t outgrown it yet. My point here is I was watching the Candiens play Boston in the playoffs on TV tonight, and happened upon your blog via Facebook(yet another vice in my life). I missed a complete 2nd period of one of the best games ever reading your posts…laughing out loud at your stories.
You need to get this published and let people read this stuff…it’s brilliant! PLease keep it up! Just Awesome! Thank you,
Heidi

12 04 2008
domesticblister

Heidi, ya big bitch, ya made me all misty eyed. Thanks for missing hockey to read me rambles.

13 04 2008
Nana

oh Amy I laugh and I cry at the same time. Whatever we can do.
These blogs are the best and everyone is reading them.

13 04 2008
domesticblister

Just keep doing what you are doing. Thank you for reading, laughing and crying.

13 04 2008
nanny patterson

nanny loves them babies!

13 04 2008
SAMS

ur like a modern day “Erma Bombeck”…my mother used to read us her funny & sometimes heart felt stories when i was a kid & ur stories remind me of hers while i was growing up….Nana got us girls at the office all hooked on ur blogs…we love them & always look forward to the next one…keep on doing what u do…u REALLY should get these published!!!!

13 04 2008
Wilda

More great stuff Amy. You’ve impressed Heidi , and that’s not easy to do!
I’ll be checking in every day.

15 04 2008
metro mama

Hi Amy,

I’m so glad I found you here. (It’s Julie from the drop-in by the way).

Here’s a couple of bloggers I know who write about autism, if you’re interested:

http://bubandpie.blogspot.com/
http://themousesnest.blogspot.com/

15 04 2008
domesticblister

Julie! Haven’t seen you in ages. Thanks for stopping by…and the funny thing is, I’ve heard the mane ‘metro mama’ mentioned in a few different blog-related circles in the past few months, and only now realized it’s you! i’ll be sure to check out those links. thx!

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