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Thursday, September 29, 2011

Fold the Sparkly Bracelet

One of the mysteries of Janey is her speech. I am always trying to figure out what makes it work and not work. She has never completely lost speech, although she came close after her big regression, where for months she only said "I want a baba". But her speech comes and goes. It is not on a steady upward path. There were times in the past when she talked a lot more than now, and times when she talked less. Lately, her usual speech is a request of 1-3 words. I'd say 80% of what she says starts with "I want a ...." or just plain the name of what she wants---"Kipper", "Chocolate Bunny", "Ketchup". Then there's the echolalia, which is long, long sentences from her vidoes, which sometimes relate to what is going on. The other day, after a severe diaper incident, she said "I'm terribly, terribly sorry". A line from Angelina Ballerina, but I didn't mind it.

One thing I've been noticing a lot lately is her inability to retrieve the right words. When she wants to say something that she doesn't have in her mind as a script, she very often doesn't know the words to use, and substitutes others. A few recent examples----I put ponytails in her hair, which she has decided she doesn't like. She started pulling at the elastics and screaming, and then looked at me and said "Bracelet! Bracelet!" I figured out she meant elastic---and that she probably got the name from seeing me sometimes put them around my wrist before putting them on her or on me. Creative, but it would confuse people who didn't get the reference. Then, that same day later, I told her we could get a donut after school. She was excited. I asked her what kind she wanted, chocolate or plain, and she said "Sparkly!" I knew what she meant---one with sprinkles. I actually loved that! We went and I got her a strawberry frosted with sprinkles, and the look on her face was priceless. She seemed so thrilled to be understood. It made me a little sad thinking of all the things she can't explain that she wants. The next day, we were in the bathroom and the window there was open a bit, which she doesn't like at all. She pointed to it and said "Fold! Fold!" which I figured out meant "Close it!" But why fold, which seems like a less common word to me than close? I don't know. Today, in the same situation, she said "Turn it off!" I said "You want me to CLOSE IT?" saying the close and it in a long way, to emphasize them, but that doesn't seem to be how she learns words. Just now, as I was writing this, she came over and said "Take off the bracelet", this time meaning a clip that was in her hair. Maybe bracelet just means any adornment? I think linguists could have a lot of fun trying to figure out just how the language section of her brain works.

Tuesday, September 27, 2011

The Night Siege

It's one in the morning. Janey wakes up, and as always, comes to me. She wakes me up and says "Baby Einstein!". I say "It's nighttime now. We don't watch videos at night. We sleep at night. Snuggle down next to me and let's sleep". Janey says again, in a louder voice "BABY EINSTEIN". I repeat my lines. Janey kicks me. I tell her to stop and go to sleep. Variations of this repeat for a while, then she wakes up Tony. He says what I have said. We both lay down with her between us. She kicks up both, screams "I WANT BABY EINSTEIN!". She tries a little variation, by doing what is so often done to her, modeling the correct response "I say...YES!" We repeat tiredly the lines about it being nighttime, time to go to sleep. We then try ignoring. That only makes her more determined to get her point across. Several times she attempts to get up and put on the DVD herself. We bring her back to bed. It is now 2:30am. Tony has to get up for work at 4:30. I have to drive Freddy to the bus at 6. We both are at the point where tired doesn't even begin to describe it. Janey is wide awake, with the one thought in her mind. We look at each other, and wordlessly, Tony gets up and puts on Baby Einstein. Janey delightedly watches it for a few minutes, and then goes to sleep. She sleeps until 6:30, when she gets back up and asks for, yes indeed, Baby Einstein.

Now from Janey's point of view, as best as I can figure it. Janey wakes up. It is dark, and she isn't next to Mama. She gets up to go to Mama. In her mind, the Baby Einstein video is playing. But she needs to see it, to refresh her memory of some certain part, to tickle her brain, to scratch the mental itch which is bothering her. She doesn't have distraction techniques. When she wants Baby Einstein, she wants only that. She uses her words, as she has been taught, to tell Mama what she wants. Mama doesn't answer right. Mama must not get how important this is. She asks again. Mama again is saying no. Mama must not understand the question. She will tell Mama how to answer "I say...YES!" Mama laughs a little at that, and still says no. She decides Daddy might be the one to ask. He says no too. Meanwhile that need to see Baby Einstein is getting worse and worse. Mama and Daddy keep talking about dark, and sleep, and tired. Those words don't mean much. They are missing the essential point, that Baby Einstein must be watched. They tell her to sleep. But it's impossible to sleep. Time goes by---some hazy amount of time, and finally they see the light and put on the DVD. Janey sees what she needs to see. Her mind is quieted. She goes to sleep.

What lessons are learned here? I have very little idea. I've learned, over and over and over, that regular parenting techniques don't work on autistic kids, usually. They don't want to please you. They don't always feel tired in the night. They don't have the ability to shut off thoughts, or replace them with other thoughts. Often, there is a voice in my head telling me the "right" thing to do. "Don't give in to her! You need to stand firm!". But there is my body, saying I must sleep at all costs, Tony needs to get sleep before he goes driving on 128 at 5am. WE HAVE TO SLEEP. What good did the hour and a half siege do? No good. Janey didn't learn a lesson. Other times, when it was perhaps the weekend and we needed to get to sleep less, we've outlasted her. It has taken sometimes up to 6 hours. And she sleeps for a few hours, wakes and is in a terrible mood, and wants the same thing she wanted when she went to sleep.

And we have other kids, and jobs, and other parts of our lives. What I think of collectively as "The Books" and "The Experts" might say we should never have given in. But those books and experts always seem to deal in isolation---there is only the autistic child. There is no need to sleep, no older kids that need rides or forms signed or attention. No jobs. They also assume autistic minds are like regular minds in some core ways that I don't think they are. Janey doesn't seem to learn from the past as other kids do. She was not thinking "Gee, they don't seem very happy I woke them up. They aren't putting on my video. I should just go to sleep and not try this again". She is thinking one thing, and one thing only "BABY EINSTEIN".

And so another day in a half dream state, barely awake. Janey, as always seems to be the case, is bright and awake and shows no effects of lack of sleep. And so we go on.

Thursday, September 22, 2011

An eye-opening experience

Yesterday, when I took Janey to school, I saw a tour bus parked outside the school. I thought perhaps some class was going on a field trip, although it seemed kind of early in the year for that. As I was waiting with Janey outside the school, I saw what was up. A big crowd of people with nametags were also waiting outside the school. They were speaking what I think to be a Nordic language, as they all looked pretty Nordic. They had tags on that said "Harvard Graduate School of Education" I figured out (I'm pretty quick on the uptake!) that they were there for a tour of the school.

The time while I waited with them all right next to Janey and me was a little surreal. I think I understand how zoo animals feel now! I'm not saying that in a mean way or saying I minded them being there at all, because I didn't, but it did feel a good deal like the kids were on display, based on how many of the people were taking pictures, and waving as you would to a animal in a cage, without talking to the kids (although they might not have spoken English). Janey was putting on a good show for them, being very autistic acting, and they watched her as well as some children who use wheelchairs or walkers, and some kids with Down Syndrome and various other special needs.

The reason I talk about this is that the whole experience made me realize anew how unusual Janey's school is. The fact that people would come from other countries to see it (and that has happened other times, just not quite so big a crowd) makes me see that what is happening at the Henderson School isn't happening a lot of places. It's true inclusion. I think a lot of schools say they have inclusion, but they are more like the school I looked at briefly for Janey, where the principal asked me anxiously "Does she follow classroom routines?" They don't take EVERYONE. They take kids who will fit in fairly well, the easy kids. Janey's school takes everyone, everyone that can get in, that is. And they take their brothers and sisters, too, so the children aren't isolated.

But does inclusion work? I am not always sure. I do feel sure it's a model that should be aimed for, but I am not always sure how it works for Janey specifically, or for the other kids in her classes. Janey is upset a good deal of the time---crying, making sad noises, being loud in her unhappiness. This is I am sure hard for any classroom teacher. She also has a very tough time learning academic things. I'm basing that on this being her 5th year in school, and I can't name much of anything she's learned, academically. She's learned social skills, she's been loved and cared for and has made progress in ways that can't be measured, but she hasn't learned letters or numbers or writing or colors too well, or reading or math or science. Is this because of inclusion---because she is always in a classroom that is moving too fast for her, that is full of talk she doesn't understand? Would she do better if the other kids were at her level? Her classes have always had a special ed teacher in them, who modifies the curriculum for her, but she is not their only student, and the other 4 or 5 kids they help have significant needs too. It's a question I just can't answer. I haven't had a lot of luck teaching Janey skills at home either. She learns some things very easily. She knows each of her DVDs and tapes by sight, she's figured out pretty much how to navigate the complicated series of buttons and remotes we have, she knows the name of every type of food she's ever had, including things like cabbage, she learns songs easily---but she doesn't seem able at this point to learn to write letters, or recognize them.

Aside from that, yesterday reminded me how lucky I am. To have Janey in a school that is internationally known---just pretty much by chance, because we live in the right city and the right zone and Freddy got in there by lottery years ago---that's luck.

Sunday, September 18, 2011

Start of the year

Start of the school year, that is, which seems like the start of the year for students and parents. And how's it going? Pretty well, for Janey. I feel like a grinch when I say to people that the beginning of the year always goes well for her, as if I am waiting for it to stop going well, and I'm not. I hope it goes well all year long. Janey is in 1st grade, in a great classroom with wonderful teachers. She has a desk. The desks are pushed into tables, and she is right there in the thick of it. She seems very, very excited in the mornings before school, and is cheerful when I pick her up, if tired. The surprising thing at the beginning of the year was her hugging spree. She isn't much of a hugger, but I think she was truly happy to see people she knew from other years. The best was when she hugged her friend Michael, who is in 5th grade and who she has known since she was a baby. It was totally spontaneous---we were just standing there before school and she went over and hugged him. His mother and I both got misty-eyed, I think. She hugged several teachers and therapists, too, and said to her PT therapist "I want to ride the bike" which is something they do together.

At home, she's been fairly happy too, but in a not-sleeping-so-well phase. The last few nights have been okay, so hopefully it's ending. I think the start of the year had her so hyped up she was waking in the night excited about it, and staying up for hours. It's the hardest thing. You can deal with almost anything, if you get sleep.

Her reaction to the year starting was making me think about her traits that have nothing to do with autism. She is like her brothers in her liking of school. They would recoil in horror if I ever breathed the words "Home Schooling". They want to be out there, seeing people and part of the crowd, and Janey does too. She likes the routine. She's not shy. Her brothers aren't either. It still makes me marvel, and wonder where they get it. I don't think that is part of the autism---it's part of her underlying personality. I like seeing it come through.

Wednesday, September 7, 2011

One of those days

Yesterday was most certainly one of those days. It was one of the longest days I've had with Janey. She started the day off with a diaper incident, which required a huge cleaning job. Then assorted battles over keeping her clothes on, keeping her out of the fridge, keeping her from creating her own interesting food combinations like ketchup on grapes, keeping her for another new hobby of eating cardboard and paper---you know, lots of your basic fun. Then another diaper incident. By that point we'd had two baths. We kept things lively with a third diaper incident shortly after that, followed by another bath, at which point I bribed William with an offer of take-out for dinner to watch her for an hour because I'd been up since 4 and needed a nap. Then back up, at wit's end, took her outside to play with water for a while, which would have been fun had it not started pouring at that point. We stayed outside for a while in that, but finally it was too much water fun even for us. Back in, Tony got home around 5 and thank goodness took her out for a while as he got William school supplies. He came home with the promised take-out, and we settled down for a fun family night of watching our DVD set of "The Middle", a show we are all enjoying, that is, except Janey. She decided in the middle of it she wanted to watch Hello Kitty. We almost always give in, because once she decides something like that, it's no fun to keep watching what you are watching anyway. But we were all tired, and in need of humor, and decided to just say no. Well, she didn't take to that well. She first just threw quite a few standard fits---screaming as loud as possible, getting in our faces with barred teeth, etc. We resisted. Then she went for the DVD player. I was surprised she realized what we were watching was a DVD---that smart girl. And surprised she knew which was the eject button. She ejected the DVD, and SHE was surprised when we put it right back in and found our place and kept watching. She decided to go raid the fridge, which was bungee corded shut and she couldn't open it, so she contented herself with opening it the inch that she could, and slamming it back shut, for about 10 minutes. We had put the DVD on such a loud setting that we were still able to hear through all this. When she got tired of banging, she went back to screaming, at one point hollering "THIS IS NO FUN AT ALL!" which is a line from The Cat in the Hat. Finally, the show was over. We put on her Hello Kitty, which of course she had no real interest in. And that was that.

It made me realize how rarely we completely say no to her. It just isn't worth the bother, most of the time. There are so few things she knows how to ask for, and we have so many things that we can do for entertainment, that it seems fair to usually let her have the ones she can ask for, and we just do something else. But this time, we all very much needed some family laughter, and we just decided, without discussion, that we were going to get it. Was it worth it? Probably not. I can't say we got much out of that last episode we watched. But I have two children besides Janey. Sometimes, I think it's important for them to see they can get their way, too. 99 times out of 100, they are giving it to Janey, because they are older and they are not autistic. But they are still kids, for a while more, and this time, it was their turn, and our turn. And I wish life wasn't like this most all the time in our house. I'm worn out. I'm more than worn out.

Thursday, September 1, 2011


I love toy stores, and I love getting interesting toys for my kids. However, I've found over the years that the toys I like to get are not always the toys the kids like to play with. I've bought about a million blocks since I've been a parent, and they have barely been touched. I've bought several beginner baby video game type systems for Janey, all of which overwhelm her. I've gotten her many dolls, most of which end up as chew toys. William was the easiest to buy for---anything Thomas the Tank Engine or Brio got heavy, heavy use. Freddy always preferred electronic entertainment. Janey---well, it's very hard to get her interested in a toy at all.

What has worked? The best kind of toys for her seem to be what are called fidget toys. They are ones you can hold and move around in your hands---things like squshy balls, Tangles, stress balls, textured baby type toys, things like that. She also likes musical toys---ones with buttons to push to play music. She has always been interested in Play-Doh, and I'd very much love to get her everything Play-Doh that exists, but she eats it, always. Yesterday was a little bit of a breakthrough in that she found some I had hidden and actually played with it for about 15 minutes without putting it in her mouth at all, so maybe that is getting better. She rolled it into a log and a ball, making me very happy. Lately also she likes pouring water or beans or something from one container into another.

The thing that's hard to do is not think age-appropriate, but much lower than her chronological ages. It's so tempting to me to get her things I would like her to like, like Polly Pockets or Barbies or dollhouses. I have to tell myself that she might like them some day, maybe even into her teens or twenties, but right now, the best kind of toy for her is probably aimed at about a 1 year old, and there are lots of neat toys out there for that age.

I've searched a lot for web resources for autistic kids and toys. As I often find, most are aimed at higher functioning kids than Janey. Lots of Thomas, lots of games that she would in no way understand. It seems like someone recommends a toy for autistic kids, and then that just gets copied by everyone, whether most autistic kids would like it or not. I'd love it if there were a site just for lower functioning kids with autism, with toys they can't choke on, that will actually hold their interest. I see some great things sometimes in school or therapy catalogs, but they are priced for those kind of budgets, not mine. Another cool thing I'd like is if some autism agency would lend good toys, like a toy library for autism. I'd be happy to pay a monthly fee to have access to some of the great toys I can't afford. It would be another of those services that would help people like Janey much, much more than another grant for research.

Meanwhile, I'll just continue limping along getting the occasional toy that's a hit with her. I think toys are a huge, huge part of childhood, and it's one of my biggest frustrations about autism parenting---that there is so little to give her that will engage and interest her.