Nixi's IEP was lousy. Frankly, I don't even feel like talking about it. Childhood Onset Schizophrenia is such an unknown and so uncommon that I couldn't and didn't expect a lot from her IEP team. Was disappointed to see a lot of gaps in reporting of symptoms, though, other than blatant ones Nixi doesn't share her symptoms with school staff. That's a HUGE problem and should be one of her IEP goals. I was so kind of out of it and on auto pilot that I dropped the ball in a lot of ways during the meeting so will need to add some addendums.
Safi's birthday party went really well. She had a blast and was an absolute princess. It was a killer end to a great week that started off with World Autism Awareness day. We dressed in blue, as did our amazing friends and Safi was so excited she ran into school without her bookbag and lunch sack. I love that that day is so special to her, literally on par with her birthday. She felt so special and so proud to be a person living with Autism. That's when it hit me. She's gotta feel that way every day, not just one day a year and I have to find a way to make that happen. Clearly, its do-able....I just gotta do it.
We hit the mountains Sunday with Emily and crew to take another stab at going to the snow. WE MADE IT! That's about the extent of the success. Literally within two minutes Nixi flipped out because her feet were sinking into the inches of fluffy, untouched snow..panicking and screaming there on out every time her foot sunk in snow...so, when she walked. Follow that with Safi thinking that sledding should be just like TV, you sit on a sled and it moves, and it was a gnarly hour. Why an hour? Because Safi literally screamed at the top of her lungs in anger, frustration, and general angst for at least 50 min of that hour. Then, I had to physically place her in the car where she proceeded to threaten to punch me in the face and go live somewhere else. The moment we pulled away, meltdown stopped. It was exactly as it was when Safi was a toddler and would get overstimulated at her various therapies or on outings....she'd fight me into the car then the minute the engine started she'd calm and almost instantly regulate. Now, I knew keeping it mellow the day after the party was a good idea. It was a spur of the moment plan to go to the snow and it seemed somewhat mellow because we were going somewhere private and it would just be us and Em's crew. In retrospect...bad idea. But I think I want to keep trying because one of these days it may just not be a bad idea and I'll never know if I don't push things here and there. Nonetheless, a miserable but simultaneously triumphant day...we made it all the way to real snow with no vomit, Safi slid on a sled and felt pride for about 30 seconds, and Nixi made a "tiny snowball." Exhausted.
I will write my love letters to Safi and to Autism at the end of the month....I'm gonna put my kids to bed and take a bath tonight!
Sarah
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