I'm awake in the middle of the night, so I figured I'd take advantage of my time and do a post, rather than my usual word game frenzy.
How was the summer? Well, better than others. Mostly I credit that to "Summertime School". It was a huge, huge help to have a block in the middle of the day where Janey was cared for and active, and I could relax, catch up on work and have time with the boys. The school wasn't perfect--the facilities, as I have written, were not good at all, and I don't think there was enough support in terms of things like the kids having places to play outside or equipment for the classroom. But Janey was happy and safe. The teacher and aides cared for her, and the fellow students were a good mix. Three of them were kids from Janey's regular class, which provides nice continuity. It was air-conditioned, and Janey has happy to go each day. The experience is an illustration of how HUGELY helpful respite and support are. Although it worked out to only about 4 hours a day, it made all the difference in terms of how the days went.
In terms of progress, it's mixed. Lately we are seeing some good talking bits---nothing huge, nothing that we'd probably even notice if it were not Janey. But little things. The other day, I was making idle conversation with Janey as I do all the time, and said "Are you looking at Polly (the cat)?" and she said, just as easy as pie, "Yes". That was huge. She doesn't answer like that. It was great to hear. And that same day, she said "Freddy! I need a blanket!" I've never heard her call for someone's attention like that before she spoke to them. She's also added a few words onto her standard phrases. Instead of just saying "I want salsa" or anything else, she says "I want salsa NOW!" I guess she got tired of us slowpokes. However, behavior-wise, it's been tough at times. The whole getting into things problem is much worse. Janey is taller, and more determined. We have had to bungee cord closed almost everything in the house, and still, she finds ways to get into things. The other day, it was tea bags---she ripped them open and threw the tea around. She loves to pour a glass of liquid all the over the floor. When she is in a mood, she will take whatever food is offered her and toss it on the ground and step on it. And we have had several, well, pull-up content disasters lately. Nothing seems to work to stop this kind of behavior. I have no idea how to stop it. I try filling the house with sensory things she can play with instead, we try time out, we try reasoning, we try ignoring, we have resorted to yelling at times----nothing has the slightest impact. And she is so fast. We never, ever leave her alone in a room, but she dashes into the next room and does her best pretty much instantly. I think she plans it out.
Her birthday, turning 7, was hard for me, harder this year than I remember. Every year she gets older is hard, because it's another year she's behind. But I have to celebrate her birthdays, too. She is so beautiful, so perfect in so many ways. She has her own personality, she is her own special place in the family. As long as I don't compare, as long as she is just Janey, not someone to be held up against other 7 year olds, I can take it. I can be proud of her. I love her without reservations, without limits. I just hope we can find a place for her in the world outside.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Friday, August 26, 2011
Saturday, August 13, 2011
Article I liked
I just read this article
http://childrenshospitalblog.org/our-patients-stories-recognizing-miracles-in-everyday-life/#more-13865
and really liked it. It said well something I've thought about a lot lately. I would really like to know exactly what is going on with Janey. Does she have more than autism? Why is it so hard for her to learn, even in ways other autistic kids seem to be able to learn? And I don't to know this to look for a miracle cure---I want to learn it to be able to plan, and understand. I want to know what to look for in the future, what kind of education would be best for her, what kind of care she will need for the rest of her life. Someone telling me that would like a wonderful thing, not a miracle, but a wonderful thing.
It's been interesting watching Janey this summer in "summertime school", as we call it. And a little sad, but not all sad. For the first time, she is in a class with all kids with special needs. I don't know what all of their special needs are, but it's obviously she is behind all of them. They are connected, they do puzzles and draw pictures and even write. They know me, and screaming "There is Jane's mother!" Whereas Jane, although she is happy and well cared for and loved there, isn't learning, because she just doesn't learn well. If not totally directed, she stands around, lately spending a great deal of time looking at her hands. At home, most all of her speech now is quotes from "Angelina Ballerina". She often seems less connected than she used to be even. She just sits quietly. She is happy most of the time, but an unconnected happy.
If this is how she is, and this is how she is going to be, so be it. I can accept it. I really can. I've been looking at older kids at the summer school, and I see it's not a bad life. They seem happy. They are not aware of their limitations. They do their own thing, and seem to enjoy their own thing. It's okay. But what if there is something I should be doing---if I am not doing the right thing? I haven't felt that way for a while. Maybe it's because it's almost her birthday. Every year, her birthday gets a little more bittersweet. She is going to 7. Mentally, she's around 2. Maybe less in some areas, more in perhaps words she knows but doesn't use. She's not toilet trained, she talks very little except to ask for things in a basic way or quote videos. She more and more often makes odd noises when we are out, a kind of "awawawaw" noise that sets her apart. She still sometimes runs from me. The years are going by, and not much is changing. And I have probably, in some ways, reached the acceptance stage. She is who she is. If I were sure that was it, I'd be fine. But I'm not sure. What if I had always insisted on many hours a week of ABA, although I've never seen it do much for her? What if I worked with her myself all day every day, intensely? What if I believed Jenny McCarthy, and did what she said? (not going to happen) What if it's somehow my fault, for not doing enough? Or doing too much, or not doing what I was doing right? A million people could tell me it's not my fault, but I don't believe it, in the deepest part of myself.
http://childrenshospitalblog.org/our-patients-stories-recognizing-miracles-in-everyday-life/#more-13865
and really liked it. It said well something I've thought about a lot lately. I would really like to know exactly what is going on with Janey. Does she have more than autism? Why is it so hard for her to learn, even in ways other autistic kids seem to be able to learn? And I don't to know this to look for a miracle cure---I want to learn it to be able to plan, and understand. I want to know what to look for in the future, what kind of education would be best for her, what kind of care she will need for the rest of her life. Someone telling me that would like a wonderful thing, not a miracle, but a wonderful thing.
It's been interesting watching Janey this summer in "summertime school", as we call it. And a little sad, but not all sad. For the first time, she is in a class with all kids with special needs. I don't know what all of their special needs are, but it's obviously she is behind all of them. They are connected, they do puzzles and draw pictures and even write. They know me, and screaming "There is Jane's mother!" Whereas Jane, although she is happy and well cared for and loved there, isn't learning, because she just doesn't learn well. If not totally directed, she stands around, lately spending a great deal of time looking at her hands. At home, most all of her speech now is quotes from "Angelina Ballerina". She often seems less connected than she used to be even. She just sits quietly. She is happy most of the time, but an unconnected happy.
If this is how she is, and this is how she is going to be, so be it. I can accept it. I really can. I've been looking at older kids at the summer school, and I see it's not a bad life. They seem happy. They are not aware of their limitations. They do their own thing, and seem to enjoy their own thing. It's okay. But what if there is something I should be doing---if I am not doing the right thing? I haven't felt that way for a while. Maybe it's because it's almost her birthday. Every year, her birthday gets a little more bittersweet. She is going to 7. Mentally, she's around 2. Maybe less in some areas, more in perhaps words she knows but doesn't use. She's not toilet trained, she talks very little except to ask for things in a basic way or quote videos. She more and more often makes odd noises when we are out, a kind of "awawawaw" noise that sets her apart. She still sometimes runs from me. The years are going by, and not much is changing. And I have probably, in some ways, reached the acceptance stage. She is who she is. If I were sure that was it, I'd be fine. But I'm not sure. What if I had always insisted on many hours a week of ABA, although I've never seen it do much for her? What if I worked with her myself all day every day, intensely? What if I believed Jenny McCarthy, and did what she said? (not going to happen) What if it's somehow my fault, for not doing enough? Or doing too much, or not doing what I was doing right? A million people could tell me it's not my fault, but I don't believe it, in the deepest part of myself.
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