Saturday, January 27, 2007

Commentary: Bumper Stickers

There was once a Peanuts cartoon that said, "A bumper sticker is not a philosophy." However, there are an awful lot of autism bumper stickers swirling around now. I thought I'd share some thoughts about them.

1. The Puzzle Ribbon. The Puzzle ribbon is starting to be problematic. Many autistic adults are asserting that they do not want to be a "puzzle to be solved." That seems to miss the point, but perhaps that's just my own interpretation of the puzzle peice motif. We are all puzzles. The Autistic Puzzle is multi-colored because of the idea of "spectrum." However, as most know, puzzles with peices that are so different can either be a peice of cake to put together- or terribly, terribly hard. Getting life to come together for an autistic person can be far more of a challenge than with a "neurotypical" person. It is also extremely recognizable, so I hope we keep it.

2. "This is a cat. It is not a defective dog. It is very happy being a cat." I like this idea, but it is a little off. The point is that an autistic person is not a defective neurotypical person. I'm good with that. However, we live in a world run by dogs, designed for dogs, and where the primary way of getting what one needs is by wagging your tail when you are happy, and growling when you are upset. If you wag when you are upset, and growl/purr when you are happy, you probably are not going to get any milk in this world. I like the idea of not needing to be "cured" or made into a dog, though.

3. "Autism: It's not like you think." Love it. Have one to put on my bumper as soon as spring arrives.

4. "If at first you don't succeed, perserverate." Although I understand the humor in this, I am not sure the giggle at one of real issues of autism is something I want spread around. This is only good for meetings with ASD people and parents. Ditto for "It's a Stimmy Day."

5. "I'm not a brat. I have autism!" Joey's original preschool teacher, Miss Angie, once noted about Joey's unusual behaviors: " It really doesn't matter why he is doing these things. IF a behavior is unacceptable, it;s unacceptable, and needs to be changed." I will return to the story of the Mom Afraid of the Mouse, where she's standing, screaming int eh kitchen, waving a knife around. The story was told on the blog I got it from to demonstrate how behaviors seen as "unacceptable" in autistic people are seen as "acceptable" with neurotypical people. However, I must say that I disagree. The mom screaming over a mouse in the kitchen is still unacceptable behavior. That's why we find it funny. Here is a normally acceptable human being acting in a strange and unacceptable way. She really needs to learn not to freak out when a mouse scampers over her floor.
On the other hand, I do get weary of people coming up to me in stores and telling me to discipline my kid, or give me dirty looks if he happens to squeal, or get excited, or perserverate. Its like asking a parent to tell their wheel-chair bound kid to just get up and walk already. I can't imagine being a parent of a child who really loses it in stores, and dealing with people while trying to deal with a real meltdown. Sheesh, people, mind your own business. Even parents of brats are probably doing the best they can.

6. "Yes, my son has autism. No, he's not like Rainman." I'd like to have a set od business-size cards that say this. It would save time.

7. "Always Unique Totally Interesting Sometimes Mysterious." I know some autistic adults don't like the "mysterious" part of this, but I think I'd like to wear this t-shirt without the first letters lined up. Its perfect.

8. "Fair is not everyone getting the same thing, or what they want. Fair is when each student gets what they need." I wish every single person who worked in education really understood this. Our school OT effectively denied us summer services last year by saying that the school system couldn't do more for Joey than for the normal kids. I'm cool with that. But I thought that teh point was the school was giving each kid a fair shot at being an independant, socially responsible human being. They don't all make it. So... why doesn't my kid get to have this opportunity?

9. "What? Is my autism showing?" See #4 and #5.

10. "I'm just like everyone else... only different." We should all have this on our bumpers.

11. "If 1 in 166 children in this country were being kidnapped, we;d have a national emergency. We do. Autism." Ok, this one kinda gets my craw. I don't like the idea of comparing Joey to a child who has been kidnapped. Now, I'll say that when we started, we were definitely "losing" Joey. On the other hand, autism is not being "kidnapped." Joey is Joey. He has autism. We can manage to teach him to get along in a non-autistic world, but he is who he is. However, I think the point of the emergency is very much pertinent. Kids who need to get along in the world need services, they need help, they need attention. Most of them are not getting it, and many are beign actively denied due to ignorance and inaction. It is shameful. If 1 in 166 kids were being born with cerebral palsy, you bet someone would be getting off their butt and making things move and shake.

12. "Welcome to Holland. Come on, I'll show you around." This is great for therapists and parents who know the ropes and have moved past the grieving and the shock and come to the realization that this isn't the end of the world. Just the end of the world as you thought it ought to have been.

13. "Autism is a difference, not a disease." Dont show this one to your insurance company.

14." My communication skills are fine. It's not my fault you don't speak my language." Excuse me? We're not trying to speak English while in Holland here. These kids need to be supported and communicate functionally. Discouraging services is not the answer.

15. "Stop trying to fix me. I'm not broken." Then you don't need a personal assistant. I understand this one should be filed under the "this is a cat" and other anti-cure slogans, but this one really rubs me wrong. Its one of those suggestions that these people do not need help and support, do not need therapy, do not need special education. I know it is probably intended to move away from looking for a pill or a shot or a diet to "cure" the autism, but the tone comes across really, really wrong to me. Joey is not currently able to function in a regular environment at an independent level. Therefore, I need to do something.

16. "The next person who says autism is like a trip to Holland gets a mouthful of wooden shoe." Excuse me, but whoever wote this did not read the peice. It is not about being autistic. It is about being a parent of a disabled child, when all your friends have normal kids. It's about sitting in a room full of moms talking about how they just had a sleepover with 15 kids at their house, when my kid hasn't yet made a friend. Its about parents telling you about their kids' first word when your kid is deaf, or their first step when your kid is confined to a wheelchair. It's about the playdates you aren't invited to, the schools your kid can't go to, the life events your kid may never have. It's also about the miracle of Joey's first time coming up the stairs from having ABA and calling me "Mommy." The joy of watching Joey touch a drum. The absolute shock of having him turn to me and say, "I like the music!" It's about moving beyond shock, anger, fear, disappointment, and grief, and living the life you have rather than the one you thought you ought to have had, or the one everyone else seems to be having. It's about supporting the child and accepting the child as s/he is, and not trying to get that child to be a person you thought s/he should have been. It's about coming to terms with what society deems "normal", and what you actually have, and realizing that you have a treasure, too.
So I hate this sticker. It just communicates to me people who are too wrapped up int themselves to understand that raising an autistic child (or any disabled child) is not like raising a "typical" one, and it can be frustrating, isolating, and frightening, and parents need some support and understanding, too. It looks to me like the reaction of a spoiled rotten brat to something that doesn't even pertain to them. It dismisses the sacrifices parents make to raise and care for their autistic children- often well into adulthood.

17. "My kid has autism, alright? Now get out of my way!" I don't get this one. Somehow, not understanding this makes me feel better. Obviously this is a problem I have not had to face.

18. "Spock was not Vulcan. He was autistic, with pointy ears." I always remember the beginning of the Star Trek movie where the re-generated Spock is regaining memories and the computer is testing him. He is answering questions at a frantic pace without breaking a sweat, when it asks him, "How do you feel?" He can't answer the question. His human mother has to explain to him that the computer knows he is half-human, and so has emotions, even though he has been trained in the Vulcan way. This is important. Don't just train your autistic children to respond to academic skills. They also need social skills, need to be able to understnad emotion, need to be able to connect to the world. Education professionals often forget this, since their screening paperwork doesn't account for it.

19. "We all have challeneges. What makes you 'special'"? Another one that should be on every bumper.

20. "Autism is a disorder, not a disease." I like this one because it concedes that autism is not normal, and requires services and support, while turning aside the "cure" thing. My child is not just "different." Joey is currently disabled. He cannot be cured, but he can be helped.

21. "Inclusion works when teachers believe all children can learn." Teaching is a tough job- when it is done right. Keeping track of all those learning styles and needs- wow! Unfortunately, most classrooms are not set up for inclusion. Either you get it the way the teacher hands it out today, or you're screwed.

22. "My kid was poisoed by mercury in vaccines, but everyone calls it autism." I'd like to make a sticker that reads, "My kid was NOT poisoned by vaccines. He's still autistic. Now what?"

23. "Oops. Wrong Planet." I giggle at this one, because it's another one I think I ought to be wearing myself.

24. "When life gives you lemons... you'd better not be talking about your kid that way." I am sure this is a reference to some essay on accepting being a parent of a disabled child, but I have no idea what essay. However, I definitely have to agree- my life may not be "as expected", but Joey ain't a lemon.

25. "I am not a puzzle, I am a person." We're all puzzles. We're all people, too.

Playing with the band

Joey loves music. Mom got him some drumsticks, and he's been going crazy (in a good way). He seems to have an OK sense of beat and time. I took him over to the church this evening. They have a casual contemporary service on Saturday nights, with a little band. When I took him last week to be baptized (long story), he really loved the music. He danced in the aisles, strumming his tummy liek a guitar or pretending to drum, and impressed everyone when they stopped and he'd say "Very good!" Then the band leader started ending songs with "Amen!" so Joey started saying "Amen!" as soon as a song ended. Everyone thought that was incredibly cute. Well, its a church after all. What's cuter than a four-year-old enjoying being at church and joining into "Amen" at the end of a song?

Anyway, he loved it so much I took him tonight. We sat up in the front pew so he could get a good long look at the instruments, and one of the percussionists came over and started handing him instruments to play, like shakers and spoonsets. Joey was THRILLED. He did a really nice job, especially with the spoons. I haven't seen him that happy in ages!

So often when people interact with Joey, and start to get the clue that something is not-quite-right, we get a curious reaction- usually something akin to a dirty look, or a scowl, or a pushing-away that is really very hurtful. It was just nice to see people react to Joey in a way that appreciated who he is, and welcomed him. Nobody there wanted to try to change him, or ask him to be quiet, or stop him from being a four-year-old in love with music. Yes, that band has a new #1 fan.


Monday, January 22, 2007

Snow! Snow! Snow!

Well, we finally got some. The boys are thrilled. They also have discovered that mom doesn't need to be mother-henning them all the time, all the time- it can be fun to be outside in the snow, with no mom (especially if mom is baking cookies for when boys get too cold and wet to stay outside!) It was very strange to be in teh house by myself for a whole twenty minutes. I spent most it looking out the door making sure the guys were safe.

Sunday school is getting interesting. The lady who runs the preschool wants to put together a little plan for dealing with Joey. I tried sending in a letter- especially since the Sunday school teachers insist on shoo-ing me out the door- but in bad weeks (and we've benhaving a really bad week), tey need to actually READ that letter. :P I'm glad to have a meeting this Sunday, because then no one has to read, they'll be informed (with a witness).

Really, if Joey could just have an attendant, he could go anywhere and be in a regular class. No-one will do that, though- "he's in too good a shape."