Janey's cats

These cats have been Janey's favorite toys for a long time. Today we made some doll clothes for them, with my usual slopping workmanship. It was a lot of fun for me---like so many things I do with Janey, I am not sure if she really cared less. But she loves having her picture taken, so she looked happy for the pictures anyway. The first picture shows her in her manic sort of laughing face we see a lot. She looks happy, but she is not really engaged, more just laughing to herself at her own inner jokes. She was singing a made up Scooby Do song (another thing like Sonic she has never actually seen, but she likes the sound of). The second picture shows her a lot more engaged, and actually looking at me, which is always nice. It's the elusive state I like to see but have a hard time getting from her---calm and engaged, not crying or manic or zoning out.

How to read a book to Janey

My vision of motherhood, before I had kids, involved a GREAT deal of reading books. I pictured us spending huge portions of each day with a big pile of books in front of us, reading them for hours, commenting on every picture, discussing them, having to go to the library all the time to get more, my kids learning to read very early and discussing my own childhood favorites with me...it was a lovely fantasy. And of course, it never happened. The boys somewhat tolerated being read to, but certainly not all day long. Neither of them read extra early. However, both read well now, and William at least reads for pleasure a lot, although it's almost all books about trains---but scholarly complicated ones!

Janey is a whole other challenge. I will go through how it is to read to her...

Step one...Pick out a book I think she will like, one we haven't read before. Start reading it.

Step two...Janey freaks out, grabs the book and throws it, cries, screams, bites the book, the couch, tries to bite me, has a fit for a long time.

At which point you would guess step 3 would be give up, but I can be a determined little cuss when I want to be. So I go on...

Step three....Since I really do think she will like this book in the long run and since I believe reading is probably about as important as breathing, I read the book out loud anyway, ignoring Janey's fit and yelling. I don't comment on anything, I don't editorialize, I just read it and get it read.

Step four...Leave the book lying around where Janey will see it.

Step five....Janey finds the book, brings it to me, and asks me to read it as if she loved it the first time.

But it doesn't end there, of course...

Step six...I try to read to the book to her. She listens for perhaps a page, then starts turning the pages rapidly and shuts the book.

Step seven....repeat steps 5 and six about 50 times over the next few days.

Step eight...at last, when Janey's comfort level with the book is high, I hang onto it hard and actually read the words of at least half of it, and comment on pictures.

Step nine...Janey "reads" the book to me many times, with my same tone, and comments herself a little on the pictures---not using the text words but her own stream of consciousness talk.

Step ten...the book falls apart from overuse, after having a few pages ripped out and the binding broken, and of course the dust jacket taken off and lost (that step was also followed by her brothers, they all hated dust jackets!)

Is it worth it? I think so. But I do still wish it were easier. What I've had a bit more success with is reading her non-picture books, like fairy tales from treasuries, so it's just the story, not the physical book or the pictures. I don't know what she gets from them, but she seems to be able to listen to them with less distress.

Someday I do hope and dream she will love books.

Janey loves the sunlight

Janey loves to be in patches of sunlight, and see how the lights and shadows look. Sometimes it bothers me as it brings up the image of many autistic kids looking at their hands and getting self-absorbed, but other times I try to just let her enjoy it. Streams of sunlight are pretty amazing, when you stop and let yourself enjoy them!

Happy moments but also asthma

Freddy's asthma has been acting up a little. He is the only one of the three that's never had an autism spectrum diagnosis, and not co-incidentally I am sure the only one I had a normal pregnancy with. He nursed for 2 1/2 years also. But despite all that, his physical health is much worse than William or Janey. They are both rarely sick and seem to have strong immune systems, but Freddy got sick all the time as a little guy, and now has fairly significant asthma. We learned to really take it more seriously this past summer when he wound up in the hospital for two nights with a terrible attack. Now he is on 2 daily medications and 2 more as needed. He needed them lately when his peak flow meter showed he wasn't moving air well, and he was coughing a lot. I kept him home from school for two days which made him very angry. He is very sociable and hates to be kept home. But he couldn't promise me he would take his medication every 4 hours at school, although it's there and he has blanket permission to use it, so I couldn't let him go. I think he doesn't like to be set apart by having to take it. I talked to his advisor about it yesterday and I think we have a handle on it, and his peak flow was better today. I have probably gone from not taking it all seriously enough to taking it too seriously, but that is what an extremely scary time in the hospital watching them trying to help him breath will do.

But yesterday felt happy too. Janey had a show at school, their school does a very lot of music shows starting with the littlest kids. I didn't want to take Freddy out, so Tony came home to take her to school and see the show. My happy moment was dressing her up for it. It was somehow one of those moments where parenting is exactly how you once pictured it. I put her in a jumper dress and a turtleneck and tights and cute shoes, and her hair is long and with no bangs, back in a pony tail, and she looked so wonderful. She was in a very happy mood, and just the last week or so she seems to have changed from a toddler type to a little girl. I couldn't stop looking at her and crying a little. In some ways this is all my dream life, having a sweet little girl and two interesting and fun and smart boys and just watching them grow. I have to let myself forget all the not good parts sometimes and just be grateful for what I have.

Why is autism so polarizing?

This morning I was trying to look up methods of teaching autistic kids to read. It was so frustrating, as everything that I found was connected to one fanatical school of thought or another---how to teach using ABA, how to teach while eating a special diet (what does that have to do with reading?), how to teach through floor time...what if you just want to teach them to read, and you don't follow one of the strict regiments? Then I thought of looking at homeschooling autistic kids, not that I am thinking of that---with Janey's love to school, that would be cruel! All I could find about that was other fanatic sites about how much better homeschooling is, and how your child being autistic shouldn't keep you from homeschooling and how the system tries to force you to send your kids to school---nothing about HOW TO TEACH THEM. There must be research or methods out there of teaching a child with autism things like colors and shapes and numbers. Or I am starting to wonder---is there? Is everyone so focused on "curing" the autism and getting credit for that, that no-one just accepts---okay, they are autistic, and now how can we help them learn what they need to know? That is how I feel. I don't think Janey is going to suddenly become non-autistic. I've accepted that. So where do we go from here? How do I help her learn? Is anyone going to help her learn?

Janey's brothers

I was thinking a lot today about how Janey's autism affects her brothers. They are playing Guitar Hero right now, that they got for Christmas. Something about the game completely sets off Janey, and so they have barely played it. They love it, and I know they'd be playing it all the time if she didn't hate it so. A lot of what we do is guided by what upsets her and what doesn't. They don't complain much, they probably can't remember that well what it was like before it was that way, and William especially is very understanding of Janey. Freddy played SO well with her yesterday, and got her talking like she very rarely does. They don't object much to watching her while I do housework now and then. They are good brothers, but it can't be that easy for them at times. And we don't hesitate to say to them that someday it's possible they will be the ones to take care of her totally. I know a lot of people say they don't want their kids to feel that way, but I think family has to think that way, and it doesn't hurt kids to know there are some things we just do because we are family. Carrie's boyfriend Joe is such a wonderful example. I do think I need to keep trying to make sure they each have some time with Tony and me doing things they enjoy without Janey around at times, and that we all need to find things the whole family enjoys we can do WITH her around.

Home today, ups and downs

Mostly things lately have felt positive with Janey. I managed to contact someone about a big autism study at MGH, and will most likely be part of it, which will result in Janey (and the boys) getting some very good evaluations. Janey has been talking a lot. One day especially on the way to school she impressed me. She said "There's the Dunkin Donuts!" (which is right across the street but which she has never commented on before). Then a bit later "The ice cream place is gone!" Actually, they had a new sign so they looked quite different, but were still there! I told her that, and she said "The ice cream place is OPEN!". Then I pointed out the Chinese place, and she said "The Chinese restaurant is OPEN!" I hadn't said restaurant, so I was happy with that! For years she has been totally quiet on the ride to Dorchester, so it was wonderful to hear her talk.

Today I kept her home as it was so cold. It's been off and on. She explored her diaper which was dirty---that hasn't happened in a while. She also was getting obsessed with reading a book about The Three Little Kittens. I got out a book of fairy tales she got for Christmas and read a story while she screamed. By the end she had calmed down and was sort of listening, so I read another later with less screaming. I also played catch with her for a while, again, ignoring her protests until she calmed down. I guess I have to accept she is never going to WELCOME new or changes in activities, but she still needs them and likes them usually after a while. It's just hard to make myself do something which I know will make her cry. I've always been a sucker for crying. I overheard Freddy telling William when they were about 8 and 5 "Just cry about making cookies and you know Mama will make them if you cry!" Guilty as charged.

It is hard when she does bizarre things. Today I caught her taking dirty corn chips out of the trash and trying to eat them. She just doesn't catch on to things that you would not think you would have to explicitly teach, like that food in the trash is yucky. I always have to be on guard. But I have more hope most days she WILL learn.

Nights from H-E-Double Hockey Sticks

Janey's sleep used to be one of the easier things with her. Lately, however, she has taken to getting tired about 6pm, and extremely cranky, and nothing we can do can really keep her from going to bed that early. Then she wakes, around 11 or 12, and is totally awake for hours. We are early to bed people, but not that early, and if we go to sleep about 9 or 10, we get about 2 hours of sleep before she's up. And she isn't just up, she's either crying her eyes out or laughing hysterically or singing at the top of her lungs or requesting things "I want ice cream" "I want chips" "I want carrots". Our house is way too small, and we just don't sleep. Last night was so terrible. She was up from 10 to about 2. I got more sleep than Tony, as I slept from about 2-7, but he went to sleep about 8 and got 2 hours then, then slept from 2-4 when he has to get up. I don't know how he drives an hour to work, and I don't know how I take care of Janey. I am like a zombie today. She on the other hand is perfectly happy. Luckily she is in a TV mood, or I would be unable to cope. But it will all start over, as she does need the normal amount of sleep. She will fall asleep in the car on the way to school, or fall asleep about 5 tonight, and it all starts over. I am at a loss about what to do. It is like torture to keep her awake when she wants to sleep, and when she wants to be awake, any wishes we have to the contrary are of no interest to her. I have such fears of Tony falling asleep at the wheel on 128.

Janey singing

I've been trying today when Janey starts singing a song to resist the temptation to sing along, and just listen to how she sings. I think I always feel like I have to be in teach mode, and I should sing along to help her learn. But it was great today just listening. She sang her version of Hush Little Baby, with lines like "Sonic's gonna buy you a knockingbird" and "When that dying ring turns grass", instead of Papa's gonna buy you a mockingbird and When that diamond ring turns brass. She loves to sing Frosty the Snowman lately, and sings most of the words to that the conventional way, in rhythm and tune, even when it changes tempo with the Thumpity Thump Thump part.

Good times

I had some great times with Janey the past few days. I feel like we really were connecting, after feeling for a while like she liked everyone else better than Mama! The other night, Tony was working out with the ski machine, so I took her into the bathroom to keep her out of his way. There was a big My Little Pony in there, an oversized one. She showed an interest so I ran with it, and we gave the pony a bath and shampoo. Then we played with him (her?) for such a long time! Janey was really playing some nice pretend play and we both were having fun. She told me to kiss the pony, and actually held it up to my lips and said "MAH" like a kiss. Then today I was playing show tunes on the TV, one of the music channels, and they played "Let's Go Fly A Kite" She was in the sunlight and started to dance to it, her wonderful dancing which she must have gotten from her grandfather Amara as I sure can't dance and Tony doesn't much either. I got up and danced and sang with her, in the light, and it just felt like one of those perfect moments, like at the end of a movie or tv show when the music swells and you get that Happily Ever After moment. I have to remember moments like that. I love her so much just the way she is---she is an amazing girl---beautiful, creative, graceful, endless fascinating. Certainly challenging, but also just an amazing daughter.

The morning with Janey

Morning started about 2am---Janey woke up ready to have fun. There is no getting her back to sleep when she gets like this---she is sort of manic. Tony and I took turns sleeping and trying to get her to sleep. She fell back asleep about 6:30, and slept until about 10. So I had a restful time which I needed after the short night. When she got up, I let her wake up gradually, as sudden wakings are not her thing. Once she was all the way up, I gave her breakfast. Then I tried to sneakily read her a book, by reading it "to myself", but she caught on and threw a fit. She hates to be read to. Then we played kitties for quite a while. Mostly this is her saying things about them "The kitties are awake", "The Kitties woke up". I did something that upset her, so it made Stripe Kitty upset, and I had to hold Stripe Kitty for a long time. Janey makes sure I am holding her right, with 2 hands. I do to kitty what I would do with Janey when she is upset---sing her songs, especially When You Walk Through the Storm, and pat her. I take this chance to talk to Kitty about things that might be upsetting Janey, and Janey does listen but who knows what gets through? Then I tried a show on Disney Channel, but that was not in Janey's plan so she threw another fit. TV off. Then we had lunch. Janey then noticed a boxed present from Christmas, a Calico Critters kitchen. It has been making her upset looking at it for days. I finally decided to just open it up, as it couldn't be worse than how upset just looking at the outside of the box was making her. She was not pleased, but paid attention as I took out all the adorable pieces. A dumb present from me, I guess, but it's the kind of thing I wish she liked, and she does like the fuzzy Critters, but not the furniture, I guess. She tried to eat the play toast, I think it's not that she thinks it's real but it's a way of showing how mad she is. After a while with me playing and her whimpering and watching, she started saying "I'm stuck! I'm stuck!" which means she is upset about something and it's stuck in her head. I put all the toys away. Now she is playing with some of the furniture I just put away. Often it's that way, I have to almost force her to try new things, and then later she likes them.

It makes me think reading this that it sounds like I am always trying to get her to do something she doesn't want to. But if I just let the day go except as she liked, it would either be (if it's a TV day) her watching TV for a long time, or more often, her repeating phrases and looking at her hands and crying. She is upset either way, so I do try to give her something new to do. It makes me so upset that I can't make her happy. I don't know what to do a lot of times. Now she is saying "Somebody stole my sock drawer! It was you! It was Ja-Cai (a boy in her class she talks about a lot"

Time to get ready for school, where she is almost always extremely happy.

Happy and Sad New Year

The new year has started off in such a mixed way. New Year's Day was great. Janey was at the best I've seen her in a LONG time. She was talking so much, playing pretend play all day with her cotton cats from Peru, making them hug, talking to me, being so engaged,using words I haven't heard her use in a year, asking for her Care Bears movie which she has had no interest in for a long long time---it was truly wonderful. When she has a day like that, I think it will last. I guess I am an optimist at heart, and I always think the good times will last and the bad times won't last long. It isn't always true. The next few days were awful. She was angry and upset all day, lashing out, trying to bite a lot, crying, etc. Yesterday Tony was up with her early, and I woke up to her having an extremely severe fit---and screaming "I'm NOT CRAZY!" I have no idea where she heard that word applied to her. It all started when Tony let her turn on the coffee maker. He had no idea why that set her off. Later, I broke my vow and tried to go to the Chinese buffet with all of us. She was okay for a while, eating french fries with ketchup, but then got upset and smashed her hands into the ketchup in a bowl, screamed so loud there was no question of keeping her in there. I took her out to the car and spent the end of yet another restaurant meal calming her in the car. Never again. But she started talking about the morning, and said "I broke the coffee maker! It made a sound! I'm sorry!" I think she thought the turning on sound was the sound of it breaking, and she was scared by it. I guess it's progress she did talk about what happened, but there are so many sounds out there and it's so hard to keep any of them from scaring her. It just goes on forever and ever.