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Sunday, January 24, 2010

School show, lessons learned

My daughter's school puts on a lot of shows---it's one of their trademarks. There was one on Friday. To be honest, I was kind of dreading it. I love the shows, but sometimes feel like the kids with special needs don't get as much out of them as the regular ed kids. I don't think Janey really knows what a show is, or gets that she is on stage. However, I felt like a few interesting concepts got formed in my mind watching this one.

Janey was happy on stage, but clueless. She didn't sing the song, although she probably knows them all, she didn't do the hand movements, she didn't really participate. A great high school student was with her, and encouraged her. She had a chair to sit in, although the other kids all stood. But she did cute things---she clapped when the audience clapped, she hugged the student at one point, she looked adorable up there. I noticed a lot of people in the big audience were watching her and laughing (nicely) when she did cute things. It made me think of diversity in a good way. Most of the rest of the kids were "with the program". They did as they were supposed to do. And it occured to me---is it really that bad that Janey didn't? She made people happy watching her, she was happy, she enjoyed herself. For someone like myself who hates to stand out, it was sort of inspiring in a strange way. She was herself, and she is always going to be herself.

Seeing the kids with Down Syndrome perform was wonderful. They did so well. I think inclusion is perfect for many kids with Down Syndrome, and I was struck as I often am how so many kids with that syndrome are just great kids. Not all of them, of course, because they are people and people vary, but many of them. And on a more low key note for myself, how very far ahead of Janey most of them are.

A lot of people told me how happy they were about seeing Janey. And she was a joy to see---so very beautiful, so happy in her own way. I have to admit I'd probably give it all up to see her be like so many of the kids in her class---academically bright, talking up a storm, futures so bright they have to wear shades---but still....Janey has her own things to offer.

Wednesday, January 6, 2010

Anyone out there?

Lately I have really been craving contact with other mothers (or fathers) of autistic girls. I have been searching for a support group in Massachusetts especially for parents of girls with autism, but none seems to exist, and I can find very little on-line either. They say 1 in 4 children with autism are girls, but I don't know where they all are. Information I do find seems to be about girls with Aspergers or high functioning autism, which is not like Janey. I think autism is different in girls, and it would be great to have someone to talk to about that. I really don't know who reads this blog, except people I have told about it. If you do, and would like to connect, please leave a comment, or if you would rather, email me at booksandclothes@gmail.com It would mean a lot to me.

Janey has been fairly cheery lately, but I have worries her talking is decreasing. Lately I only seem to hear requests type talking "I want Winnie the Pooh" "I want ice cream" and nothing else. And at times it seems like it's harder to understand her---she always spoke clearly in the past. I really don't know where to turn sometimes. I feel like it's a slow acting emergency---I can't take her to the emergency room and say "I'm losing her!" We are extremely tight with money, and so many things that would help cost money. I need to start calling clinics and hospitals and just make appointments, but I worry so about the co-pays and deductables.

I've been feeling frustrated with talking to Janey in the car and other times. It seems like I keep up a monologue all the time and I don't know if it does a bit of good. I don't know if she is processing anything I say. Should I just shut up and give her some peace and quiet? I talk constantly to her. It feels right to do that, and that is what I did with the boys, and they are quite the talkers and have great language skills. But does it just overwhelm her?

I hope 2010 is a good year, one where I get some answers and Janey makes some progress.