Janey woke this morning at six, which is a pretty typical time for her. She's been sleeping better lately, or I should say she's in a good sleeping phase, as that goes back and forth. She woke up cheerful and singing, which is the case about half the days, and is more the case if she wakes up after having crawled into bed with Tony and me during the night, and one of us is still in bed. I think she has a fear of being alone. She got up and right away started her morning list of wants "Strawberry milk, please! Toast and butter, please! I want bacon! I want oatmeal!" Breakfast is her big meal, and she ate most all of those!
After eating, Janey wanted some videos, and I put them on, and changed them at her will. She is less into Netflix lately, probably because we were having some kind of problem with the remote for a while, and it wasn't responding to her button pushes, which made her very upset. So now she is relaying on good old fashioned VHSs, which don't fail her much! After a bit of watching, she fell back asleep, which is another new pattern for her. It makes it a little tricky getting her ready for school. I put it off until the last possible moment, but she is still very annoyed when I wake her to get dressed.
Dressing goes fairly well, and hair brushing relatively well. Janey doesn't care for her hair being brushed at all, but she now tolerates. I say most days "I'm going to be extra gentle today" and if I skip it, she's say "EXTRA GENTLE!" and remind me. I got her teeth brushed and her coat on and we got out the door. However, Janey suddenly ran back in and got a book she'd been into lately---a Wo Wo Wubsey book called "A Tale of Tails" I asked her if she wanted to take it in the car, and she excitedly jumped, happy I'd figured her out.
The ride to school was great, as it's Christmas music season! We listened to a Boston Pops singalong of modern Christmas songs, which ended with a big doing of "Jingle Bells" Janey was clapping and smiling and laughing, and I loved seeing it. She was so thrilled just to hear the songs she knows, and appreciative of the arrangement. I love seeing her enjoy music!
When we got to school, Janey insisted on bringing the book in with us. That made me very happy. It's recent she's falling in love with certain books, and I couldn't be more thrilled. I have used the methods I used with the boys over the years to try to get her to become book obsessed---having many, many books around the house, always dropping everything if she wants to be read to, leaving books she might like where she'll find them on her own, instead of trying to force her to listen to them, and not treating books like they were made of glass---letting them be as freely used as toys would be (A million thanks to Mary O'Grady Leonhardt, whose book Keeping Kids Reading has inspired me so much so many times---she reads this blog, and it's to me like having one of my idols read it!) These methods seem to be finally paying off with Janey, and she's developing a huge attachment to some books, and wanting them read over and over. With the recently discovery she can at least read some, this means even more to me.
Janey walked into the school with a smile, holding her book. One of the sweet girls from her class saw her and walked down with us to her room, and Janey entered the classroom as happy as could be, book in hand, ready for her day.
On my drive home, for some reason I started thinking about progress. On the outside, it might seem like Janey hasn't made a lot of progress over the years. If you went strictly by test results, by speech, by graphing charts, it would look like she hasn't. She still doesn't talk much. She still couldn't pass a test requiring basic preschool skills like knowing shapes and colors and letters. She isn't fully toilet trained. She doesn't dress herself well. She requires watching every second. She is still very, very autistic.
However, thinking about the morning, I realized that there is actually a lot of progress that has been made, in less tangible ways. From sleep getting a little better, to her tolerating things like hair brushing, to her letting me know she wanted the book with us, to her love of music being ever more shared with others, to her happy entry into the school and her smile at her friend, to just being more consistent, more predictable, more present---the days are easier than they used to be. She is still very tough. If you compared her to other kids her age---well, that would be depressing. She is still intellectually disabled. However, through her own maturing and our own increasing ability to understand her, she is progressing. She's making significant progress, in ways that can be felt more than quantified. An ordinary morning, broken down, is a series of little moments of progress. You go, Janey!
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label breakfast. Show all posts
Showing posts with label breakfast. Show all posts
Tuesday, December 3, 2013
Friday, October 5, 2012
It's the middle of the night
This middle of the night post is brought to you by Janey having woken up at 3:30am.
I have to be fair---most of the time, Janey sleeps fairly well. I'd say 6 nights out of 7, she goes to bed at around 8pm, sleeps through the night and wakes up at 6am, when the rest of us do. We are not a late night family, and that schedule works well for all of us. However, the 7th night is pretty tough. I know there's a lot of autistic kids, and non-autistic kids too, with bigger sleep problems, but being awake in the middle of the night doesn't do much for your sense of perspective that way.
When Janey has a rough night, it follows the same pattern almost every time. I can barely remember a time she had trouble getting to sleep. The 8pm or a bit earlier bedtime is almost completely consistent (knock on wood). But on the rough nights, she wakes up around 2 or 3am. She is wide awake, and she wants the day to start. There is absolutely no keeping her down. She seems to feel it's morning, and the rest of us are slackers. She wants to start the morning routine---have some breakfast custom made for her, watch her TV shows, maybe go outside, sing or scream loudly---all that fun.
This is another area where this is no parenting guidebook that works. If a child is eight, all advice centers around reasoning with them. You are supposed to be able to firmly say "It's night now. Go to sleep." and then if they don't, telling them they have to at least stay in their room and leave you alone so you can sleep. That is not possible with Janey. She can't be left alone---ever ever ever. If she's awake, we have to be awake. The fact we want to sleep has no impact on her. She doesn't do things to make us happy. She's not going to think "Gee, it just isn't fair I should keep my parents awake all night" She isn't influenced by our disapproval, or even our anger. She is like a one year old, but with one big difference---you can't put her in a crib.
So what do we do? For a while, we still try to keep her down. We try to keep her in bed. We point out it's dark out, and it's still sleeping time. Ha. That's a good one. She continuously gets up, flips on the lights (that's always fun when you're dozing off), checks if the fridge is bungee-corded shut or not, checks the doors to see if she might be able to pay her uncle upstairs a little night visit, tries to get the TV set up for her shows...and of course we are up by then. And we resort to TV. We put on one of her favorite shows, and get on the couch and try to rest while she watches it. We can't go to sleep, because she can't be unsupervised, but we can rest a little. And hopefully, she gets into the show. More often, she decides after a little while she wants a different show, or some strawberry milk, or "snuggle on Mama's bed" (which would seem hopeful, but it never results in sleeping)
The funny thing is that this night wakefulness never bothers her the next day. People say "oh, I bet she'll nap!" but she doesn't. She never seems the slightest bit tired from being up at night. We are, of course. While she's at school, after a night like tonight, I often nap. Lovely, wonderful naps. I love them, but I hate them, because they use up the limited time I have to myself.
And so, here we are. Janey is watching Kipper. I am fending off her requests for strawberry milk, and fending off the overwhelming urge to sleep. Luckily, it's getting closer to 5, when I often get up anyway. And so we go on.
I have to be fair---most of the time, Janey sleeps fairly well. I'd say 6 nights out of 7, she goes to bed at around 8pm, sleeps through the night and wakes up at 6am, when the rest of us do. We are not a late night family, and that schedule works well for all of us. However, the 7th night is pretty tough. I know there's a lot of autistic kids, and non-autistic kids too, with bigger sleep problems, but being awake in the middle of the night doesn't do much for your sense of perspective that way.
When Janey has a rough night, it follows the same pattern almost every time. I can barely remember a time she had trouble getting to sleep. The 8pm or a bit earlier bedtime is almost completely consistent (knock on wood). But on the rough nights, she wakes up around 2 or 3am. She is wide awake, and she wants the day to start. There is absolutely no keeping her down. She seems to feel it's morning, and the rest of us are slackers. She wants to start the morning routine---have some breakfast custom made for her, watch her TV shows, maybe go outside, sing or scream loudly---all that fun.
This is another area where this is no parenting guidebook that works. If a child is eight, all advice centers around reasoning with them. You are supposed to be able to firmly say "It's night now. Go to sleep." and then if they don't, telling them they have to at least stay in their room and leave you alone so you can sleep. That is not possible with Janey. She can't be left alone---ever ever ever. If she's awake, we have to be awake. The fact we want to sleep has no impact on her. She doesn't do things to make us happy. She's not going to think "Gee, it just isn't fair I should keep my parents awake all night" She isn't influenced by our disapproval, or even our anger. She is like a one year old, but with one big difference---you can't put her in a crib.
So what do we do? For a while, we still try to keep her down. We try to keep her in bed. We point out it's dark out, and it's still sleeping time. Ha. That's a good one. She continuously gets up, flips on the lights (that's always fun when you're dozing off), checks if the fridge is bungee-corded shut or not, checks the doors to see if she might be able to pay her uncle upstairs a little night visit, tries to get the TV set up for her shows...and of course we are up by then. And we resort to TV. We put on one of her favorite shows, and get on the couch and try to rest while she watches it. We can't go to sleep, because she can't be unsupervised, but we can rest a little. And hopefully, she gets into the show. More often, she decides after a little while she wants a different show, or some strawberry milk, or "snuggle on Mama's bed" (which would seem hopeful, but it never results in sleeping)
The funny thing is that this night wakefulness never bothers her the next day. People say "oh, I bet she'll nap!" but she doesn't. She never seems the slightest bit tired from being up at night. We are, of course. While she's at school, after a night like tonight, I often nap. Lovely, wonderful naps. I love them, but I hate them, because they use up the limited time I have to myself.
And so, here we are. Janey is watching Kipper. I am fending off her requests for strawberry milk, and fending off the overwhelming urge to sleep. Luckily, it's getting closer to 5, when I often get up anyway. And so we go on.
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