Ok, so turns out I didn't have strep....I had Roseola. In short; viral, causes high fever for several days then a horrible rash for a few days.
Feeling much better now. Mom cancelled my programming until mid-week so we could all just take it easy.
We got a chance to take dad to the park and play in the water fountains, that was really cool and also really special. See, when we go to the park one kid always seems to single Saf out and pick on her. A couple of weekends ago we went to the park and a little boy picked on Saf bad. She was playing in the fountains and she thought she was playing with the boy. When Saf plays with other kids she does a lot of motor imitation, meaning she copies their physical movements(check out the video). Its her way of engaging them because she wants so desperately to play but doesn't know how to spontaneously engage...typical of autism. She didn't realize the boy was being mean to her, splashing her and eventually spitting water in her face(check out the video). The first time was confusing for Saf. She knew she didn't like it, but she wasn't sure if it was a game. So, she kept "playing" with him and he spit water in her face twice more. She got really upset and afraid and wanted to leave. Mom intervened each time, but the little boy wasn't deterred and his mom was too busy reading to care. Either way, after that day Saf has been afraid to go to the fountains, particularly if there are boys playing in them. People with autism have a tendency to overgeneralize stuff. Saf is sadly no exception. So, at this point all boys in the fountain are bad...and she seems a little cautious of them in the park playground, too. Also, sadly, Saf generally has a really hard time reading strangers and doesn't usually know when they are being mean to her...another hallmark of autistic spectrum disorders. The great news was that the incident with the boy was the first time Saf has realized someone was being mean and asked to leave. Usually, kids bully her and she just gives up the toy or whatever it is the kids want and retreats. This was a huge milestone for Saf. The bummer for all of us is that we really like the fountains and want to help her not be afraid. So, dad ran through the fountains with her and she did great..........until a boy came to play (check out the video). So, at this point, the fountains seem sorta ok as long as there's no boys. We'll keep working on it. Saf's favorite thing in the world is the water fountains...the water is her music and boy can she dance and sing!
I had speech up at the therapy center and that was a little weird. I met my new speech therapist and it seems that her, along with my new case manager, don't think I need speech therapy because I have so many words (37 now!). Mom got a little frustrated. Its great that I have a lot of words....but I also have apraxia and low muscle tone. Nobody can say what that will mean for the future in terms of my intelligibility. So, mom wants help building up my tone and stuff. They gave her a hand-out. Ironically, its a hand-out written by my old speech therapist. I don't understand why they don't seem to want to help me. They agree I need help and have these issues, but they just don't seem to know what to do about it. So, I guess they'll wait and see and hopefully my speech turns out ok. Ridiculous. They also kind of acted weird about Saf. The case manager kept talking to her and moving stuff and doing all of the things that make using the therapy room moot....as they mess with Saf big time. So, eventually, Saf had a breakdown. They acted kind of shocked and wanted to know what treatment she was getting. It was really kind of rude. Saf didn't even have a meltdown, she just cried...no head banging, no nothing. You'd think these people have never seen a kid on the spectrum. Super bummer because that place has always been our solace. We go again this week, if its the same kind of stuff we'll stop going. There will be no point and it will be just another thing we need that gets taken away from us.
Saf had a fun day at school. She struggled in the beginning, as this was on the heels of the weird day up at the therapy center, but she pulled it together and just did great.
I don't understand why life is so hard. I wonder what it would be like to wake up in the morning and just feel totally ok. I wonder what it would be like to just run into situations with a smile and excitement instead of a tummy ache and anxiety. I know my sister wonders these things, too. I got no other way to say, it sucks. Having to fight every day to be happy and to feel ok is the pits and its not fair.
Ok, pity party over! Looking forward to a great week ahead and wishing you all a great one as well.
Peace
Nixi
Here's video of Saf doing motor imitation...see the boy wipe water from his face and Saf mirror his actions, also notice that the boy is already trying to intimidate her and she has no idea what's happening...........
Horrifically, mom caught the first spit on video....
This is from our visit this week....notice Saf's having a great time until a boy enters the fountains and she heads for the hills with mom in hot pursuit...
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