I noticed the other day that there is a little clickable place at the top of my blog that says "Next blog" and being the curious type that I am, I clicked it. I don't know how they pick which blog is next, but it was fun to do---it took me to what seemed like a random other blog, and I kept doing the same thing with each blog and looked at all kinds of blogs. I think they each somehow loosely connected to the one before, as I got into a string of them about jewelry making somehow, so used the back button and tried again, and got different blogs. It was an enjoyable use of an hour. And I got some ideas about ways I should spice up this blog, or at least make it fit more in the family blog mode....
Put lots more recipes on, with pictures, and emphasize how I cook about 20 meals ahead and freeze them, and make my own flour and salt.
Talk a lot about my "dh", dear husband, and about how I married my best friend (I thought that was still illegal in most states?)
Mention much more often than I do about how blessed I am.
Take the kids on a lot more vacations and take a lot more pictures of them while on those vacations. Especially, I need to take them to Disney World.
Be relentlessly positive. Always look at everything as being on the way up.
Homeschool.
Put little apps on that show exactly what age my kids are, and how close it is to Christmas.
Don't have teenagers. None of the best blogs have kids older than 7 or so.
Start exercising, and write a lot about it. Keep a running log. Talk about how good I feel after a long run.
Shun junk food.
Get some jazzier background.
In general, don't be such a downer all the time.
I'm being sarcastic a bit, of course. And not all the blogs were like that. But I did feel like I'm not with the program in some ways, but then, I've felt like that my whole life. It's only in the last 5 years or so that I've been able to say to myself those two great little words and mean them..."Who cares?" Who cares if I don't have a house in the suburbs, kids in youth sports and a model's body? Who cares if my kids have never been in a plane and never set foot on Disney property? Who cares if none of us are totally mainstream people? Of course, some days I do care, but more often, I've reached the point where I don't care. I want my family to be happy, and to be decent, kind, thoughtful people. I think my boys are on their way, and I will do all I can to guide Janey in that direction. So, who care about the rest?
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Tuesday, March 29, 2011
Sunday, March 27, 2011
Fun for almost everyone
I went to a camp fair yesterday at Janey's school. It was fun to look at the booths for the camps, and talk to camp people about all the fantastic sounding programs. Only problem----none of them would work for Janey, or even accept her. There were a few there for kids with special needs, which I knew she was too young for right now, but I wanted to see about the future. Both of them (one directly, one indirectly) let me know they can't handle lower functioning autistic kids. One of them has a 4 to 1 ratio, the other one, an overnight camp, said that the kids have to be able to follow a basic routine. I can understand how camps would not be able to deal with her. I am not really angry about it, just thinking. In many ways, autism breeds autism. "Regular" kids have endless chances to socialize, to be with other kids, to explore their interests. I could have a "regular" kids signed up for an activity, lesson, camp, etc, every day of the week. I wouldn't, but I could. But for Janey, there is almost nothing. I think the general public doesn't understand this. They see fundraisers for autism, talk about autism, and don't realize that most of that is for specific approaches to autism, for research or for higher function kids. There is not much out there for autistic kids of Janey's level to actually enjoy, to just hang out, and to give the parents a little break. I've looked. I am so lucky to have her in school where she is. If we could afford the afterschool, she's be very welcome there. Until a few years ago, children that were registered with DMR (Department of Mental Retardation) could go to afterschool for free. No more, and we can't swing it. So we have the school day, and I feel lucky to have it. Word is that the summer programs with the Boston schools are being enhanced, and I got a form on Friday to indicate if I was interested in extended year for Janey. YES! But I am not holding my breath, I've learned to never believe it until I see it, not that everyone involved isn't trying hard, but there are so many layers of bureaucracy.
In talking to the camp people, I was also hit with the misconceptions about autism, mainly assuming kids are higher functioning than they are. I think this is different than the past. In the past, people pictured autism as a child in the corner spinning plates. That was probably because it was rarer to diagnose it then, and so those were the children that actually got diagnosed. Now, it's swung the other way. Aspergers is considered a form of autism, and so many kids are also diagnosed as high-functioning autism. There is a BIG BIG BIG difference between Aspergers and autism. I feel qualified to say that, having been a parent to both (at least by diagnosis, in some ways I am very skeptical of the whole Aspergers diagnosis in many cases, not all, but that's another story). Maybe it's not this way for everyone, but I can say for myself, autism is about a million times harder, especially combined with mental retardation. And there are about a million times less opportunities for autism and recreation.
I am not sure how this could be solved. It's a matter of money, I am sure. Janey would really need one on one supervision at any camp or classes, and that is very expensive. I am enough of a believer in self-sufficiency to feel in a way it's not anyone else's job to provide for Janey, just ours. But that leaves the isolation that breeds more isolation. It leads to the feeling that I talked about once in a book review. The only people who should have a low-functioning autistic child are people with lots of money, only the one child and endless time. Others just can't do all they should. Of course, I'm being sarcastic, because you don't get to choose. I am lucky to be living in this time and place. I'm not blamed for Janey's autism, I can send her to school, things could be far worse. But on my less Pollyanna-like days, I think about how they could be far better, too.
In talking to the camp people, I was also hit with the misconceptions about autism, mainly assuming kids are higher functioning than they are. I think this is different than the past. In the past, people pictured autism as a child in the corner spinning plates. That was probably because it was rarer to diagnose it then, and so those were the children that actually got diagnosed. Now, it's swung the other way. Aspergers is considered a form of autism, and so many kids are also diagnosed as high-functioning autism. There is a BIG BIG BIG difference between Aspergers and autism. I feel qualified to say that, having been a parent to both (at least by diagnosis, in some ways I am very skeptical of the whole Aspergers diagnosis in many cases, not all, but that's another story). Maybe it's not this way for everyone, but I can say for myself, autism is about a million times harder, especially combined with mental retardation. And there are about a million times less opportunities for autism and recreation.
I am not sure how this could be solved. It's a matter of money, I am sure. Janey would really need one on one supervision at any camp or classes, and that is very expensive. I am enough of a believer in self-sufficiency to feel in a way it's not anyone else's job to provide for Janey, just ours. But that leaves the isolation that breeds more isolation. It leads to the feeling that I talked about once in a book review. The only people who should have a low-functioning autistic child are people with lots of money, only the one child and endless time. Others just can't do all they should. Of course, I'm being sarcastic, because you don't get to choose. I am lucky to be living in this time and place. I'm not blamed for Janey's autism, I can send her to school, things could be far worse. But on my less Pollyanna-like days, I think about how they could be far better, too.
Tuesday, March 22, 2011
Videos
Like it or not, Janey watches a lot of videos. I don't like it, but I also recognize it's a very common thing for autistic kids to like to do, and I can see why in a way. They are completely predictable---she knows what will be said and what will happen. They are a low pressure way to learn language and social situations---no-one is questioning her or pointing out lessons. And they entertain her, in a way that toys don't. It frustrates me that it's so much harder to get her interested in a book than a video, but I can see why, from her perspective. I read the books a little differently each time. I won't read the book over and over and over. The pictures don't move. I think much of why I don't like the videos is my own vision of what I want my kids to like. I always had visions of myself as the mother of kids who read constantly, who loved to play with creative blocks and dolls and could entertain themselves for hours with a book of mazes. Hah. My boys were not big TV watchers and still aren't (Freddy barely ever watches TV) but they weren't into what I wanted them to be into, and neither is Janey. William at Janey's age drew pictures of trains all day, and set up his Brio train tracks. Freddy, then as now, played computer and video games. Both of them are great students, so I guess whatever harm was done by them not wanting to read all day wasn't too severe. But I still have the dream image of what I want my kids to like.
That being said, Janey learns more from the videos than almost any source. She has four current favorites. First, Kipper. Kipper is a fantastic British series about a dog and his friends. It's very low key, low graphics, easy to follow, simple stories, nice music. In many way, perfect for a child with autism. A newer favorite is Pingu. If you have Netflix, check out Pingu! It's claymation, about a penguin, and the talking is Charlie Brown Grownup style---a nonsense language. But you can tell exactly what the characters are saying anyway. I think Janey loves it that the people aren't talking in a way she has to try to understand---she can just focus on the neat moviemaking and the little stories. She also loves The Cat in the Hat Knows a Lot About That. We watch it also on Netflix, and there are only 4 episodes so far (with 2 parts to each, so 8 stories). Janey only likes 2 of the episodes, so we have gotten to know those VERY well. They are science related, although I don't think she notices that. But the Cat talks in rhyme and there is a lot of repetition, which she seems to greatly enjoy. The last favorite of hers is a mystery to me. It's Angelina Ballerina. It doesn't have any of the traits that I would think would make her like it---it's talk-heavy, with storylines that are very big on social situations, like getting in fights with friends. The graphics are busy. But go figure---she loves it, and quotes it a lot. Maybe that's a good sign---maybe it's her way of trying to figure out what's going on with the girls around her. She tends to bring up lines from it when she's upset, like a line Angelina says about lying. The characters overemphasize emotions, and that might draw her in---there's no doubt if someone is upset or angry or happy.
I try hard to get Janey to watch other things, and she does occasionally---a few singing Sesame Street videos, a Pooh song video, a Disney Princess sing-a-long---you see the theme there.
And of course I keep pushing books. I read to her every minute she will tolerate. She likes nursery rhymes best, and I have collected many, many books of those. Some day, I am determined, books will come first! She's my last hope for a kid like that!
That being said, Janey learns more from the videos than almost any source. She has four current favorites. First, Kipper. Kipper is a fantastic British series about a dog and his friends. It's very low key, low graphics, easy to follow, simple stories, nice music. In many way, perfect for a child with autism. A newer favorite is Pingu. If you have Netflix, check out Pingu! It's claymation, about a penguin, and the talking is Charlie Brown Grownup style---a nonsense language. But you can tell exactly what the characters are saying anyway. I think Janey loves it that the people aren't talking in a way she has to try to understand---she can just focus on the neat moviemaking and the little stories. She also loves The Cat in the Hat Knows a Lot About That. We watch it also on Netflix, and there are only 4 episodes so far (with 2 parts to each, so 8 stories). Janey only likes 2 of the episodes, so we have gotten to know those VERY well. They are science related, although I don't think she notices that. But the Cat talks in rhyme and there is a lot of repetition, which she seems to greatly enjoy. The last favorite of hers is a mystery to me. It's Angelina Ballerina. It doesn't have any of the traits that I would think would make her like it---it's talk-heavy, with storylines that are very big on social situations, like getting in fights with friends. The graphics are busy. But go figure---she loves it, and quotes it a lot. Maybe that's a good sign---maybe it's her way of trying to figure out what's going on with the girls around her. She tends to bring up lines from it when she's upset, like a line Angelina says about lying. The characters overemphasize emotions, and that might draw her in---there's no doubt if someone is upset or angry or happy.
I try hard to get Janey to watch other things, and she does occasionally---a few singing Sesame Street videos, a Pooh song video, a Disney Princess sing-a-long---you see the theme there.
And of course I keep pushing books. I read to her every minute she will tolerate. She likes nursery rhymes best, and I have collected many, many books of those. Some day, I am determined, books will come first! She's my last hope for a kid like that!
Saturday, March 19, 2011
Little steps
Yesterday a few things happened that made me feel encouraged, and I thought I'd write about them, since I don't want to have the reputation of the most depressing blog there is! Mostly I just have that reputation with my son Freddy, who has started reading this and whose main critique is that I am too downbeat (and also made typos sometimes).
One of them was only encouraging in retrospect. The boys were going to a friend's house for a sleepover birthday party. The friend's mother is a close friend of mine, and I decided we'd all take the ride to drop them off, and I could get a little time in with the friend. Janey was in a good mood, and she was excited to be going in the care with everyone. She was dancing around and said "We can go! We can go!" which is a line from The Cat in the Hat. About half way through the half hour ride, though, she got upset. We were on the highway and stuck a little, but I don't know if that was it. She started crying, then screaming. Then totally breaking down, Janey style. By the time we got there, she was in full screaming hysterically mode. It was like last spring all over again. I tried to stay a minute or two, but no-one could even hear themselves talk, and it was distressing to everyone to see Janey that way. We gave up, said goodbye to the boys and went home.
So what was encouraging? It was that I knew I could handle it. I knew I could calm Janey down in time, and so did Tony. We both felt relief once we were in the car. We knew the tricks that would get her under control---we knew that once we had her out of the situation that was upsetting her, she would be okay. She screamed all the way home, but in the middle of the crying stopped now and then to say what she wanted "I need snuggle on Mama's bed! I need water with ice! I need a straw box!" We both told her we would be home soon and she could have all those things, and her crying was different---it was a crying because she was upset she wasn't home yet, but not a crying that seemed desperate and never-ending. And when we got home, it took her a few minutes to calm down, but she did. We snuggled, she had her water and juice, all was okay.
It felt a bit like a turning point to me. Neither Tony or I got the feeling we used to get, the feeling that this was simply not possible to handle. We were troubled by the crying, but not overwhelmed. We knew that we could handle it. It's a little triumph, but I'll take it.
The other little step was during the day, when Janey was at school. Tony and I were walking around the upscale outdoor mall near us, in the great weather. We can't actually buy much there, but it's fun to play rich people for a while and look around. We went into the fancy toy store, where even basics cost twice as much as they would at your everyday ToysRus. I was poking around, and realized I was seeing many things I thought Janey would enjoy. Even a short time ago, I would go to a toy store and get depressed as there would be nothing Janey would like at all. But this time, there were actually things I wish I had the money for! There were several of the stuffed cats she loves so much, by BlaBla. They were $35, which is beyond what I am willing to pay for a stuffed toy, but she loves the 3 I bought at a store closing sale long ago. We have been playing with them non-stop--mainly it's me singing to them and giving them "here we go to Boston" rides on my lap, while she watched, but she loves it. I saw some square big magnets I thought she's have fun with, some playground balls that she'd like, a few toys meant for babies but that she'd have sensory fun with---it felt nice. It made me see she has made some baby steps lately. She is reaching out a tiny bit from herself.
One of them was only encouraging in retrospect. The boys were going to a friend's house for a sleepover birthday party. The friend's mother is a close friend of mine, and I decided we'd all take the ride to drop them off, and I could get a little time in with the friend. Janey was in a good mood, and she was excited to be going in the care with everyone. She was dancing around and said "We can go! We can go!" which is a line from The Cat in the Hat. About half way through the half hour ride, though, she got upset. We were on the highway and stuck a little, but I don't know if that was it. She started crying, then screaming. Then totally breaking down, Janey style. By the time we got there, she was in full screaming hysterically mode. It was like last spring all over again. I tried to stay a minute or two, but no-one could even hear themselves talk, and it was distressing to everyone to see Janey that way. We gave up, said goodbye to the boys and went home.
So what was encouraging? It was that I knew I could handle it. I knew I could calm Janey down in time, and so did Tony. We both felt relief once we were in the car. We knew the tricks that would get her under control---we knew that once we had her out of the situation that was upsetting her, she would be okay. She screamed all the way home, but in the middle of the crying stopped now and then to say what she wanted "I need snuggle on Mama's bed! I need water with ice! I need a straw box!" We both told her we would be home soon and she could have all those things, and her crying was different---it was a crying because she was upset she wasn't home yet, but not a crying that seemed desperate and never-ending. And when we got home, it took her a few minutes to calm down, but she did. We snuggled, she had her water and juice, all was okay.
It felt a bit like a turning point to me. Neither Tony or I got the feeling we used to get, the feeling that this was simply not possible to handle. We were troubled by the crying, but not overwhelmed. We knew that we could handle it. It's a little triumph, but I'll take it.
The other little step was during the day, when Janey was at school. Tony and I were walking around the upscale outdoor mall near us, in the great weather. We can't actually buy much there, but it's fun to play rich people for a while and look around. We went into the fancy toy store, where even basics cost twice as much as they would at your everyday ToysRus. I was poking around, and realized I was seeing many things I thought Janey would enjoy. Even a short time ago, I would go to a toy store and get depressed as there would be nothing Janey would like at all. But this time, there were actually things I wish I had the money for! There were several of the stuffed cats she loves so much, by BlaBla. They were $35, which is beyond what I am willing to pay for a stuffed toy, but she loves the 3 I bought at a store closing sale long ago. We have been playing with them non-stop--mainly it's me singing to them and giving them "here we go to Boston" rides on my lap, while she watched, but she loves it. I saw some square big magnets I thought she's have fun with, some playground balls that she'd like, a few toys meant for babies but that she'd have sensory fun with---it felt nice. It made me see she has made some baby steps lately. She is reaching out a tiny bit from herself.
Friday, March 11, 2011
Some ideas and some depression
When Janey had her IEP meeting in December, I requested that she be evaluated by a technology specialist, to see if she would qualify for any kind of technological help in communicating. I had kind of hoped she might be able to get an iPad or something like that, which I had read was really helping some kids with autism, but I realized that it was unlikely she would be able to demonstrate that she could use one. We had a meeting Thursday to discuss the results of her evaluation, and as I expected, the evaluator didn't think Janey would be able to understand or use a multi-button device. She did think Janey would be helped by a single button recording device, that could be programmed to say something like "I need help!", and in fact Janey learned to use one very quickly while the woman was evaluating her. It's not that Janey can't say that phrase, but to get her to actually say it at appropriate times is extremely hard. The button can take away a step, make it less personal and easier, and can also lead to Janey saying the phrase verbally. So I was okay with that suggestion.
The evaluator was very good. She hadn't met Janey before, so came in with fresh eyes. That was eyeopening and to me, kind of depressing. She said what I know to be true, that we should keep in mind that Janey can't think or understand at nearly the level some of her talking makes it seem like, that just because she sometimes uses complete sentences doesn't mean she understands complete sentences, and that if we need to get a point across to her, we should state it very simply, or maybe use pictures. I don't think the pictures work for her, but maybe. I asked her the question I had been asking myself---how to I respond to repeated delayed echolalia? She actually had an answer, and a good one. She said to treat it like you would treat a baby babbling, because that's what it really is...playing with the sounds and intonations of language, even though it might sound like more sophisticated speech. So not so much respond to the actual words, but to the intent, which is to try to communicate. Make a guess at what she is trying to actually get across, and respond to that with short utterances and encouragement.
It was all good information and accurate sounding information, but it still of course depressed me a little. I think a lot of my hopeful feelings about Janey are at a low ebb lately. She doesn't seem very connected lately, she is crying more, she is more babyish---more affected seeming. She is continuing to do things like take off her seatbelt, she is peeing on the floor all the time, she is taking off her clothes all the time---and I am truly often feeling like she doesn't get what I mean at all when I try to stop her. Maybe because she isn't capable of understanding reasons or cause and effect. I lecture her for taking off her seatbelt, and she repeats back the right things, but she doesn't really make the connection----"seatbelt off equals Mama mad". And so if the urge strikes her again, she just does it again, as she does all her other things that are dangerous or destructive. I feel like I am waking up every day feeling a bit of a sense of dread. I love Janey so much, and I am so scared for her and her future.
The evaluator was very good. She hadn't met Janey before, so came in with fresh eyes. That was eyeopening and to me, kind of depressing. She said what I know to be true, that we should keep in mind that Janey can't think or understand at nearly the level some of her talking makes it seem like, that just because she sometimes uses complete sentences doesn't mean she understands complete sentences, and that if we need to get a point across to her, we should state it very simply, or maybe use pictures. I don't think the pictures work for her, but maybe. I asked her the question I had been asking myself---how to I respond to repeated delayed echolalia? She actually had an answer, and a good one. She said to treat it like you would treat a baby babbling, because that's what it really is...playing with the sounds and intonations of language, even though it might sound like more sophisticated speech. So not so much respond to the actual words, but to the intent, which is to try to communicate. Make a guess at what she is trying to actually get across, and respond to that with short utterances and encouragement.
It was all good information and accurate sounding information, but it still of course depressed me a little. I think a lot of my hopeful feelings about Janey are at a low ebb lately. She doesn't seem very connected lately, she is crying more, she is more babyish---more affected seeming. She is continuing to do things like take off her seatbelt, she is peeing on the floor all the time, she is taking off her clothes all the time---and I am truly often feeling like she doesn't get what I mean at all when I try to stop her. Maybe because she isn't capable of understanding reasons or cause and effect. I lecture her for taking off her seatbelt, and she repeats back the right things, but she doesn't really make the connection----"seatbelt off equals Mama mad". And so if the urge strikes her again, she just does it again, as she does all her other things that are dangerous or destructive. I feel like I am waking up every day feeling a bit of a sense of dread. I love Janey so much, and I am so scared for her and her future.
Wednesday, March 9, 2011
A day's worth of talking
I thought I would try to write down everything Janey said in my presence today, to illustrate what her talking is really like, and to save for myself to see if it changes over time. I'm not sure I got everything, but I got a good sample. I'll divide it into types...
Asking for things---
"I want Baby Einstein"
"I want Cat in the Hat"
"I want The Kangaroo Hop" (a song on a Pooh video)
"I want straw box. YES!" (she sometimes adds on the yes to illustrate how I should answer)
"Disney Sing-A-Long" (she leaves out the I Want a lot too)
"Goldfish"
"Chocolate Bunny"
"Toothbrush! I want Toothbrush!"
"I want go see Pino" (Pino is her uncle that lives upstairs)
Delayed echolalia----(most all of this was on the way home from school in the car, and most of these lines were from The Cat in the Hat Knows a Lot about That, a current favorite.)
"With no chance of relief"
"It's me, the Cat in the Hat!"
"We just need an idea"
"I can't hear ANYTHING"
"Not MY kind of food"
"I can hear the bats" (this one was after an ambulance went by, and at first I thought it was in reference to that, but then she said it about 40 more times on the way home)
"Looking for rabbit droppings" (I have no idea where this one came from!)
Lines she has learned, but used properly
"I don't like it" (this was in the hall in the morning at school, when it was loud. I told one of her teachers that she said this, and they told me it was something they had worked on yesterday, saying that when she didn't like something. I was happy with that one)
regular echolalia
"I'm proud of you" (when I said that, because I was proud she said "I don't like it"!)
"Do you want cheese?"
"You are being pretty silly"
"Hippity hop out of the car"
(these are all right after I said the same thing, repeated back in the same tone)
Maybe original speech
"The disk is white" (this was interesting---she asked for Disney Sing-a-long, which I put on, but then said that, and brought me a Baby Einstein disk, which was indeed white. It's pretty rare for her to say something like that)
Overall, a pretty good representative sampling of how she talks. Mostly, she asks for food or videos, or repeats lines from books, videos, things we say, etc. The Cat in the Hat things she said on the way home were all said many, many times during the 25 minute drive, and always in the same tone and with the same emphasis. I was encouraged by the "I don't like it" and "The disk is white" today. I'm struck by how very little she says, if any, passes along information or asks for information. Or asks for anything abstract, although she does often say "I want snuggle in Mama's bed" when she's upset.
I never know how to reply to the delayed echolalia. Should I ignore it, as it's not really useful speech? Should I say it back to her? Should I act like it's a serious comment or question? I do that a lot, like when she said "I can't hear ANYTHING!", I say "Is it too noisy in here? Are the sounds too quiet? Why can't you hear?" as if I thought she was really commenting on her hearing---just to try (in vain) to spark conversation. Or should I try to figure out why she's saying that particular thing at that particular time, and work with that, as when she said "I can hear the bats"? I think that was originally sparked by the odd sounding ambulance, which was making an odd hollow sound---maybe it sounded like the bats did on her show. I asked her that "Did something make you think about bats and how they sound?" but of course got no reply. I get a little frustrated with the endless phrases, because I don't know what the best way to respond is, how to work on turning them into useful speech.
I do know how lucky I am that Janey talks at all, and I am very, very grateful for that. I know other girls with autism function overall at a lot higher level than her, and don't speak, and I keep that in mind every time I hear her voice.
Asking for things---
"I want Baby Einstein"
"I want Cat in the Hat"
"I want The Kangaroo Hop" (a song on a Pooh video)
"I want straw box. YES!" (she sometimes adds on the yes to illustrate how I should answer)
"Disney Sing-A-Long" (she leaves out the I Want a lot too)
"Goldfish"
"Chocolate Bunny"
"Toothbrush! I want Toothbrush!"
"I want go see Pino" (Pino is her uncle that lives upstairs)
Delayed echolalia----(most all of this was on the way home from school in the car, and most of these lines were from The Cat in the Hat Knows a Lot about That, a current favorite.)
"With no chance of relief"
"It's me, the Cat in the Hat!"
"We just need an idea"
"I can't hear ANYTHING"
"Not MY kind of food"
"I can hear the bats" (this one was after an ambulance went by, and at first I thought it was in reference to that, but then she said it about 40 more times on the way home)
"Looking for rabbit droppings" (I have no idea where this one came from!)
Lines she has learned, but used properly
"I don't like it" (this was in the hall in the morning at school, when it was loud. I told one of her teachers that she said this, and they told me it was something they had worked on yesterday, saying that when she didn't like something. I was happy with that one)
regular echolalia
"I'm proud of you" (when I said that, because I was proud she said "I don't like it"!)
"Do you want cheese?"
"You are being pretty silly"
"Hippity hop out of the car"
(these are all right after I said the same thing, repeated back in the same tone)
Maybe original speech
"The disk is white" (this was interesting---she asked for Disney Sing-a-long, which I put on, but then said that, and brought me a Baby Einstein disk, which was indeed white. It's pretty rare for her to say something like that)
Overall, a pretty good representative sampling of how she talks. Mostly, she asks for food or videos, or repeats lines from books, videos, things we say, etc. The Cat in the Hat things she said on the way home were all said many, many times during the 25 minute drive, and always in the same tone and with the same emphasis. I was encouraged by the "I don't like it" and "The disk is white" today. I'm struck by how very little she says, if any, passes along information or asks for information. Or asks for anything abstract, although she does often say "I want snuggle in Mama's bed" when she's upset.
I never know how to reply to the delayed echolalia. Should I ignore it, as it's not really useful speech? Should I say it back to her? Should I act like it's a serious comment or question? I do that a lot, like when she said "I can't hear ANYTHING!", I say "Is it too noisy in here? Are the sounds too quiet? Why can't you hear?" as if I thought she was really commenting on her hearing---just to try (in vain) to spark conversation. Or should I try to figure out why she's saying that particular thing at that particular time, and work with that, as when she said "I can hear the bats"? I think that was originally sparked by the odd sounding ambulance, which was making an odd hollow sound---maybe it sounded like the bats did on her show. I asked her that "Did something make you think about bats and how they sound?" but of course got no reply. I get a little frustrated with the endless phrases, because I don't know what the best way to respond is, how to work on turning them into useful speech.
I do know how lucky I am that Janey talks at all, and I am very, very grateful for that. I know other girls with autism function overall at a lot higher level than her, and don't speak, and I keep that in mind every time I hear her voice.
Saturday, March 5, 2011
Losing my religion
This is a post I probably shouldn't write, but I will anyway, because it's on my mind so much lately.
Before Janey was born, actually when Freddy was still a baby, I started going to a church right near our house, The First Congregational Church of Hyde Park. I loved it there---I loved the minister, Jackson Smith, the building, the organ music, the hymns, the people. It was a very, very small congregation, and got smaller and smaller and smaller as time went on. When Janey was about 2, it closed and the church building was sold. Jackson died a few years after that. His funeral marks the last time I was in a church.
Even before the church closed, we had stopped going regularly, or going as a family. Janey was not yet full blown autistic then, but already at 2, she could in no way be at church without completely disrupting the service and making it completely impossible for us to get anything out of it. The church was too small to have a nursery, but even if it had one, I am pretty sure they couldn't have handled Janey even then. So either Tony or I went, or a lot of times, neither of us. It was sad for me, but I thought of it as temporary.
However, it wasn't. We tried another church a year or so after ours closed, and it was easily apparent that there was no way it was ever going to work. Janey can't be cared for by anyone without experience with autism, and she cannot be in church with us. It isn't a matter of her being fussy---she will SCREAM, run around, get completely hysterical. It's not fair to anyone there. There are too many noises that upset her, too much quietness, hard seats---who knows what, but it would be impossible. I read a book recently about a woman with an autistic son---the woman's father is a well known religious figure, and even she was never able to take her son to church or find a church that would work. That made me feel a little better. Churches are not set up to deal with autism, at least in a way that would allow the boys to go and allow Tony and me to listen to a sermon together.
I was never very strong in whatever faith I had. When I was going to church all the time, I felt very comforted by it, but I was never sure if that was God or just the ritual. Now, I am less and less and less sure I believe at all. I would not call myself an atheist. I haven't lost all belief, or hope for belief. I have tremendous respect for anyone who does have faith. I wish I did. But I don't think I do. Part of this is the question that everyone asks---why does God allow bad things to happen? Why is Janey autistic? What is the reason for that? It's a lot easier for me to think there IS no reason, or no plan, than to think it's part of a plan. I have a wonderful friend who tells me that often, God's plan isn't ever revealed to us. I respect that opinion, but I don't know if I believe that. Or if I do believe it, I am not sure if I liked it. Why would God make a plan that involves making a 6 year old girl autistic and retarded? And that is a mild sad thing compared to many other things I can't understand God doing---cruelty to children and animals, wars, children born with horrible diseases that will result in their death, and just all the meanness and horribleness out there?
I do differentiate between faith and church. My faith is not dependent on having a church to go to. But it would help. I think there is a huge unfilled need for churches that could welcome families with an autistic child. It would mean the world to have a church to go to that would have childcare for autistic children, and that would even find a way to include them. Janey could learn hymns. She could learn to repeat Bible verses. She could just feel the love that a good church can give. I have a dream of us all going to church on Christmas Eve. Janey loves the carols so much. I think whether she understood the Christmas story or not, it would make Christmas mean something to her. But I don't think this is going to happen. I've asked around, done internet searches, even had my mother's minister research churches in the Boston area, all in vain, to try to find a church that might be interested in working with us. Almost all churches would welcome us, but I want a church that would embrace us, that would take good care of Janey while we were at a service, that would love her. I want this, selfishly, even though I am not sure I believe in what churches are there for.
Before Janey was born, actually when Freddy was still a baby, I started going to a church right near our house, The First Congregational Church of Hyde Park. I loved it there---I loved the minister, Jackson Smith, the building, the organ music, the hymns, the people. It was a very, very small congregation, and got smaller and smaller and smaller as time went on. When Janey was about 2, it closed and the church building was sold. Jackson died a few years after that. His funeral marks the last time I was in a church.
Even before the church closed, we had stopped going regularly, or going as a family. Janey was not yet full blown autistic then, but already at 2, she could in no way be at church without completely disrupting the service and making it completely impossible for us to get anything out of it. The church was too small to have a nursery, but even if it had one, I am pretty sure they couldn't have handled Janey even then. So either Tony or I went, or a lot of times, neither of us. It was sad for me, but I thought of it as temporary.
However, it wasn't. We tried another church a year or so after ours closed, and it was easily apparent that there was no way it was ever going to work. Janey can't be cared for by anyone without experience with autism, and she cannot be in church with us. It isn't a matter of her being fussy---she will SCREAM, run around, get completely hysterical. It's not fair to anyone there. There are too many noises that upset her, too much quietness, hard seats---who knows what, but it would be impossible. I read a book recently about a woman with an autistic son---the woman's father is a well known religious figure, and even she was never able to take her son to church or find a church that would work. That made me feel a little better. Churches are not set up to deal with autism, at least in a way that would allow the boys to go and allow Tony and me to listen to a sermon together.
I was never very strong in whatever faith I had. When I was going to church all the time, I felt very comforted by it, but I was never sure if that was God or just the ritual. Now, I am less and less and less sure I believe at all. I would not call myself an atheist. I haven't lost all belief, or hope for belief. I have tremendous respect for anyone who does have faith. I wish I did. But I don't think I do. Part of this is the question that everyone asks---why does God allow bad things to happen? Why is Janey autistic? What is the reason for that? It's a lot easier for me to think there IS no reason, or no plan, than to think it's part of a plan. I have a wonderful friend who tells me that often, God's plan isn't ever revealed to us. I respect that opinion, but I don't know if I believe that. Or if I do believe it, I am not sure if I liked it. Why would God make a plan that involves making a 6 year old girl autistic and retarded? And that is a mild sad thing compared to many other things I can't understand God doing---cruelty to children and animals, wars, children born with horrible diseases that will result in their death, and just all the meanness and horribleness out there?
I do differentiate between faith and church. My faith is not dependent on having a church to go to. But it would help. I think there is a huge unfilled need for churches that could welcome families with an autistic child. It would mean the world to have a church to go to that would have childcare for autistic children, and that would even find a way to include them. Janey could learn hymns. She could learn to repeat Bible verses. She could just feel the love that a good church can give. I have a dream of us all going to church on Christmas Eve. Janey loves the carols so much. I think whether she understood the Christmas story or not, it would make Christmas mean something to her. But I don't think this is going to happen. I've asked around, done internet searches, even had my mother's minister research churches in the Boston area, all in vain, to try to find a church that might be interested in working with us. Almost all churches would welcome us, but I want a church that would embrace us, that would take good care of Janey while we were at a service, that would love her. I want this, selfishly, even though I am not sure I believe in what churches are there for.
Friday, March 4, 2011
Twin
I am reading "Twin" by Allen Shawn, a memoir about a man and his twin autistic sister, who lives away from home from age 8 on. As often is the case lately when I read books about autism, the main message is not what really gets me. It's a very well-written book, but is mostly about the author and his own feelings. What I am reading avidly for are the little glimpses about his sister and her development. And I always compare. I am always trying to see if Janey is functioning at a level above or below the autistic person in the book. This one especially interests me because it's about a girl. In many ways, she sounds a lot like Janey---she does a lot of echolalia, she doesn't answer questions, doesn't use pronouns well---but she's way ahead of Janey in a lot of ways. Or if I were a more positive person lately, I'd say she gives me a lot of hope for Janey, as she learns to read, do simple math, play the piano, etc.
The depression over Janey has hit me a lot the last week or so. Last night it got awful. It wasn't anything new, just the same old things---picking her up at school, asking her how her day way, what she did that day, all the questions I ask and never get answers for, her totally lack of interest in anyone or anything but her own immediate wants, how she once again took off her seat belt while we were driving, and I have no idea how to deal with that, although she'll parrot back "We NEVER NEVER take off our seat belt" and "That makes Mama angry--it's dan-gous" (dangerous), I don't think the words really mean a thing to her. Sometimes when I ask her what we never do in the car, she's say "Take off our shoes!" with just as much passion. And that is something I've asked her not to do, but not nearly as emphatically as the seat belt. I can't always pull right over---it's like she plans it and does it in the middle of dangerous intersections, which my ride to and from her school are full of. I just started feeling the whole hopelessness of it---the banging my head against the wall feeling that it will never change, I will never get my energy back and be able to do all I should, that it's just not fair. All useless emotions, but what I am feeling. So much for making this cheery for Freddy!
The depression over Janey has hit me a lot the last week or so. Last night it got awful. It wasn't anything new, just the same old things---picking her up at school, asking her how her day way, what she did that day, all the questions I ask and never get answers for, her totally lack of interest in anyone or anything but her own immediate wants, how she once again took off her seat belt while we were driving, and I have no idea how to deal with that, although she'll parrot back "We NEVER NEVER take off our seat belt" and "That makes Mama angry--it's dan-gous" (dangerous), I don't think the words really mean a thing to her. Sometimes when I ask her what we never do in the car, she's say "Take off our shoes!" with just as much passion. And that is something I've asked her not to do, but not nearly as emphatically as the seat belt. I can't always pull right over---it's like she plans it and does it in the middle of dangerous intersections, which my ride to and from her school are full of. I just started feeling the whole hopelessness of it---the banging my head against the wall feeling that it will never change, I will never get my energy back and be able to do all I should, that it's just not fair. All useless emotions, but what I am feeling. So much for making this cheery for Freddy!
Autism from a kid's eyes
Yesterday after school, a very sweet and cheery little boy that used to be in Janey's class said "Hi, Janey!" when he saw her, as he always does. And Janey, as she nearly always does, completely ignored him. And I, as I almost always do, stopped, said "Janey, can you say hi?" and waited, and then said hi for her. As we walked away, I heard him telling his father "Janey doesn't talk and she doesn't look at you. But you can talk to her and look at her, if you want to". I loved that. It is why I love her inclusion school. No-one most likely has ever sat down with him and taught him about autism and what it means, or told him how he should react to someone who doesn't give you any social feedback, but he knows.
Thursday, March 3, 2011
Not all depressing
This entry is for my son Freddy. He recently read a lot of this blog, and had two main comments---"It's all about autism!" and "It's very depressing!". Well, I am not going to do much about the first one---it's an autism blog, not a diary, and besides, all the topics that fill my high school and college diaries are kind of useless when you've been married a long time----boys I like, boys other girls like, girls I hate because boys I like like them instead of me, boys I used to like but now hate but actually secretly still like----you get the picture. No longer appropriate. But I can try to temper the depressive nature of my writing a little. So here's some good tidbits followed by depressing tidbits, and a promise to end on a good one!
Good----Janey is singing more again. The school reported she learned a new song one day and sang it all day, and she is singing songs she heard a long, long time ago back---"Mr. Lonely", "The Pokemon Theme", "Always Look on the Bright Side of Life", "Who Let the Dogs Out?"---she might not have perfect taste, but she has perfect song recall.
Depressing----I am tired of the smell of urine. Janey is wearing underwear most of the time, not because she is trained, but because she only pees 1-2 times a day, and when she does, it soaks through any pull-up type diaper known to man, so underwear is cheaper and more comfortable for her. But every laundry load reeks of urine.
Good---I am feeling grateful for Janey being able to jump, skip, run, climb and overall be quite fit physically. She didn't walk until she was two, and there was a day we didn't know if she'd ever walk. I need to always remember how great it is that she can.
Depressing---Janey doesn't seem to be greeting people or saying hi to them or their names as much as she was at the beginning of the school year. For a while, I didn't have to be her voice when people said "hi". She seems back in her own world a bit more of the time.
Good---Janey eats so well! We went to a Korean buffet, and the server commented on how amazing it was that Janey ate things almost no kids her age will eat---lots of onions, carrots, spicy meat, lettuce, seafood---pretty much everything. She goes crazy at Indian buffets, too. I don't worry about her diet, and that was not the case with her brothers.
Depressing---Progress reports from school about her academics are so nice and cheerful, but the actual accomplishments don't change from year to year---Janey knows the letter A sometimes, can kind of trace circles and write lines, can count but not actually count things, can sometimes tell what her name is if she has two choices and one of them is a name that doesn't start with J---all the same from year to year pretty much, not for lack of good teaching or therapy, but because it just seems very hard for her to learn. I especially don't understand why she has so much trouble drawing or writing. She is good with her hands, goodness knows---she can open anything she wants opened---but she can't seem to write with a pencil well at all.
Good---Janey is happy much more of the time than a year ago. She is a cheerful girl. This week her older brother William is away, so I have to wake her up when I take Freddy to his bus and put her in the car half asleep. She never cries or complains as I bet a lot of kids would---she accepts the change in routine with good nature. Little things delight her, and she just seems to enjoy life much more of the time than she did.
Depressing---sometimes Janey laughs for hours for no reason. That bothers me almost more than the crying. It seems more insane, to be frank. It's like there's a joke she only can hear.
Good---Janey is noticing the cats for about the first time ever, and actually played a little with Polly, pulling a string for her.
Depressing---Janey rarely has any interest in toys, except ones with buttons that make a sound.
And here's the promised good ending....I was away for a night with a friend, and when I got back, Janey hugged me and said "You're my favorite person!" A quote from a Mary Poppins song, but she could have chosen any of hundreds of quotes for that moment, and she chose that one. I will remember that always. Janey, you and your brothers are MY favorite people!
Good----Janey is singing more again. The school reported she learned a new song one day and sang it all day, and she is singing songs she heard a long, long time ago back---"Mr. Lonely", "The Pokemon Theme", "Always Look on the Bright Side of Life", "Who Let the Dogs Out?"---she might not have perfect taste, but she has perfect song recall.
Depressing----I am tired of the smell of urine. Janey is wearing underwear most of the time, not because she is trained, but because she only pees 1-2 times a day, and when she does, it soaks through any pull-up type diaper known to man, so underwear is cheaper and more comfortable for her. But every laundry load reeks of urine.
Good---I am feeling grateful for Janey being able to jump, skip, run, climb and overall be quite fit physically. She didn't walk until she was two, and there was a day we didn't know if she'd ever walk. I need to always remember how great it is that she can.
Depressing---Janey doesn't seem to be greeting people or saying hi to them or their names as much as she was at the beginning of the school year. For a while, I didn't have to be her voice when people said "hi". She seems back in her own world a bit more of the time.
Good---Janey eats so well! We went to a Korean buffet, and the server commented on how amazing it was that Janey ate things almost no kids her age will eat---lots of onions, carrots, spicy meat, lettuce, seafood---pretty much everything. She goes crazy at Indian buffets, too. I don't worry about her diet, and that was not the case with her brothers.
Depressing---Progress reports from school about her academics are so nice and cheerful, but the actual accomplishments don't change from year to year---Janey knows the letter A sometimes, can kind of trace circles and write lines, can count but not actually count things, can sometimes tell what her name is if she has two choices and one of them is a name that doesn't start with J---all the same from year to year pretty much, not for lack of good teaching or therapy, but because it just seems very hard for her to learn. I especially don't understand why she has so much trouble drawing or writing. She is good with her hands, goodness knows---she can open anything she wants opened---but she can't seem to write with a pencil well at all.
Good---Janey is happy much more of the time than a year ago. She is a cheerful girl. This week her older brother William is away, so I have to wake her up when I take Freddy to his bus and put her in the car half asleep. She never cries or complains as I bet a lot of kids would---she accepts the change in routine with good nature. Little things delight her, and she just seems to enjoy life much more of the time than she did.
Depressing---sometimes Janey laughs for hours for no reason. That bothers me almost more than the crying. It seems more insane, to be frank. It's like there's a joke she only can hear.
Good---Janey is noticing the cats for about the first time ever, and actually played a little with Polly, pulling a string for her.
Depressing---Janey rarely has any interest in toys, except ones with buttons that make a sound.
And here's the promised good ending....I was away for a night with a friend, and when I got back, Janey hugged me and said "You're my favorite person!" A quote from a Mary Poppins song, but she could have chosen any of hundreds of quotes for that moment, and she chose that one. I will remember that always. Janey, you and your brothers are MY favorite people!
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