I decided tonight to write a song. Wanna hear it?
The emotions of my pre-teen go up and down,
Up and down, up and down.
The emotions of my pre-teen go up and down,
All day long.
The words that she repeats are, "I want no,"
"I want no, I want no,"
The words that she repeats are, "I want no,"
All day long.
The door to her room gets slammed and shut,
Slammed and shut, slammed and shut.
The door to her room gets slammed and shut,
When she gets mad.
When she doesn't get her way she screams, "Wah, wah, wah!"
"Wah, wah, wah, wah, wah, wah!"
When she doesn't get her way she screams, "Wah, wah, wah!"
All day long.
The people who don't know her just stop and stare,
Stop and stare, Stop and stare,
The people who don't know her just stop and stare,
When she has a meltdown.
The mommy smiles at her and says, "I love you,"
"I love you, I love you"
The daddy smiles at her and says, "I love you, too"
She is loved so much.
I bet you all could sing along to that tune with me. Vicki's no different than any other child, but Vicki's so different from every other child. Some times I look at her and I see a one year old who still explores objects with her mouth. Then I see a two or three year old who is just having a meltdown because they were told they can't have that piece of candy. Other times I look at Vicki and see a five year old who is testing boundaries and pushing buttons, seeing what they can get away with. Then I see a seven year old who is tickled pink with herself for doing something independently and having a job to do, being a helper. Then I blink and see an awkward teenager, trying to understand her changing body and emotions and reflection in the mirror. Then I see a twenty year old, just about taller than me, with an elegant dress on for an upcoming wedding that she is in. She takes my breath away. But you know what is hard for me to see? It's hard for me to just plain see that 9 year old that is standing in front of me. I can't even fathom how she must feel living it.
I want to share 3 things that happened tonight that clearly demonstrates that I know nothing about the inner workings of a child's mind...especially my child's mind on autism. That's an odd way to state it, but .... do you remember that public service announcement years ago... with a frying pan and an egg? 'This is your brain. This is your brain on drugs. Any questions?' I think there should be a new PSA for autism. "This is your brain. This is your brain on autism. Any questions?" But I don't see a frying pan with an egg for this one, I see a starry, starry sky and then I see bunches of beautiful fireworks going off in all directions, making the most beautiful patterns and sounds, but still scaring the crap out of me when those loud boomers get put off.
OK. Back to my 3 examples from tonight.
1. Vicki loves going on walks. And we've incorporated that into her day, so the girls that work with Vicki take her on a nice walk afterschool to enjoy the weather, get some great exercise, and just have fun. Vicki loves going on walks. But something has happened over the past month and I hate that I am terrified to take her on a walk now, especially if I am by myself with her. At some point in the walk she just shuts down and sits down. And when Vicki sits down and makes up her mind, there is no getting her to get up. And it's scary when it's on the side of the road. We don't want to hurt ourselves getting her up, and we definitely don't want to hurt Vicki. So what do we do? What do you do when nothing is motivating her to get up? When there is no reinforcer at all that will make her budge? How long can you 'wait her out?' I can't just drive the van up to her and bribe her to get in it. Anyway... we were having such a good day today, we thought we'd try again to walk. And Ally went with us on our walk. Layse black cat even went with us on our walk. And it was all good and happy and then. Boom. She sits down. After much discussion and thinking and first-thenning and trying to figure out how to get her moving again, I finally walked home with Ally and Vicki and her therapist stayed there. I didn't want to get the van. So we took Layse home and Ally got her baby stroller and some mini m & m's just in case... Well, Ally ended up eating the m & m's. And Vicki thought that Layse black cat riding in a stroller was amusing. Maybe in Vicki's mind she just decided she didn't want to sit anymore. Whatever the antecendent was, we'll take it. Oh yeah. Vicki pushed the baby stroller with Layse in it up the hill (of course the stroller was so short that she had to bend over to push... and half way through, I think her back was sore, so Ally pushed. :) And we made it home. What a feeling... seriously, we made it. Without the van, without my husband... the 4 of us conquered a walk today. And it felt great. However, I am already stressing about our next walk....
2. Vicki loves her visual schedule. Usually she has 'homework' to do afterschool. She's got her little homework square velcroed onto her schedule. And I neglected to take homework off her schedule when I saw there was nothing in her backpack. So when we got to 'homework', we said 'no homework today' and took it off. Seriously, what kid wouldn't like that? Well, Vicki. She was not happy. At all. But she worked through it after dumping out a big box of her reading books. Which she did pick up, very grudgingly. Where do kids learn those looks they give you?!? :) You know.. the, 'I want to squish you like a bug, I despise you' look? That's not in Vicki's emotion program. :)
3. Oh my gosh, oh my gosh... Vicki is amazing. I seriously am baffled with her memory. And I know that we have only touched the tip of the iceberg with her. She is brilliant. She was telling me about her day again tonight... and was talking about ABC coloring... (love those color wonder books!!! Seriously, I should buy stock in them!) Anyway, she said, 'A-red. B-yellow, C-blue, D-brown....' and went through the whole alphabet naming different colors for each letter. It had me curious. It wasn't in rainbow order which it usually is when she talks about colors... I got out her color wonder ABC book, and she was right. Every one of them. That's the color she colored the letter. How can she remember that? Now she has only colored up through 'O' I wonder if the rest that she listed is what she has chosen and will color them when she gets to it? Vicki gives me goosebumps at least 2x a day. Wow.
So, that's it for me tonight. This mommy on the computer is very tired, very tired, very tired.... :)
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