Things Janey loves to eat
Juice from the pickle jar
Spaghetti sauce
Boiled greens
Cheddar cheese---must be freshly cut from a big block
Cherry tomatoes
Onions with the skin on
Movies Janey likes
Home
The Spongebob Movie
Coco
The Little Mermaid 2
Hercules
Care Bears---Journey to Joke-a-Lot
Janey's biggest talents
Remembering tunes and lyrics of songs
Smiling in a way that lights up a room
Her sense of humor
Her beauty inside and out
The special way she has of uniquely connecting to each person she loves
The most frustrating things about Janey
When she screams and we can't figure out why
That she isn't fully toilet trained
When she bites her arm
How upset she gets when one time out of a hundred, we insist on watching our own TV shows
Her utter lack of patience
Janey's favorite things to do
Car rides
Showers
Dancing
Snuggling
Eating
Rearranging furniture
Rearranging cats
The toughest parts of being Janey's parent
The need to absolutely constantly be on alert
The tiredness when she doesn't sleep
Cleaning up difficult messes
The very loud screaming
Over ten years of the same TV shows
The best parts of life with Janey
Seeing her happy
How often she makes us laugh with her
The many, many times she surprises us with what she says and does
The wonderful people I've met that I wouldn't know if I didn't have her
How she brings our family together
Janey's favorite music
The Beatles
Toby Keith
Christmas music
Black Sabbath
Meat Loaf
Weird Al
The Ventures
Nursery rhymes
Show tunes
Janey's most said phrases
"Snuggle on Mama's bed?"
"Want to take a shower?"
"Go for a car ride?"
"Want to go away?"
"Go to the ice cream store?"
Things Janey hates
Hair brushing
Coming home after a car ride
People saying "just a minute!"
Cats that keep coming back after they are rearranged
Being out of cheese
Things I think Janey could do if I could figure out how to unlock the keys
Read
Use remotes
Access much of her vocabulary
Consistently use the bathroom
Sleep on a regular schedule
My biggest fears regarding Janey
That someone will hurt her when I'm not there to protect her
That she get sick and not be able to tell me what is wrong
That she will somehow get lost
That when I someday die, she won't understand why I left her
That when I am gone, she will not be taken care of
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label hair. Show all posts
Showing posts with label hair. Show all posts
Tuesday, July 10, 2018
Tuesday, February 6, 2018
Every Morning is a Triumph
I just got Janey on the bus, at 6:15 am. As I walked in the house, I was beating myself up a bit. Her hair wasn't as I'd like it, she had sneaked some onion and garlic chips and her breath betrayed that, she had on two different gloves, her hastily picked clothes were not the greatest look for her...it was not my finest early morning parenting day. But then I defiantly told myself---NO. Getting her on that bus at that hour was a triumph. It was the kind of triumph all you parents of other kids like Janey have every day.
It was a triumph Janey got a full night's sleep, and woke up without protest. Sleep is not something any of us take for granted.
It was a triumph that I got Janey dressed. I felt guilty thinking how I should be insisting on her dressing herself more in the mornings. But doing so would necessitate getting up about an hour earlier. We are on a very tight schedule every morning, and I'll take her cooperation over her independence when it comes to quick dressing any day.
It was a triumph I did her hair at all. I know there are a few tangles. I hate that. But as I worked to brush them out, Janey screamed and had the look in her eyes that let me know that if I kept going, there was no way on earth we'd be getting on that bus. So I resolved to brush them out before bed tonight, and I did my unskillful braid hairdo, and we called it good enough.
It was a triumph I brushed Janey's teeth well---twice. She allows a thorough brushing without complaining. The second thorough brushing came after she found the chips while I rushed to get dressed myself. I think she might still have a little onion and garlic breath, but so be it. I am glad Janey eats breakfast at school, but a little chip appetizer isn't a huge deal.
It was a triumph that Janey left the house with a coat, a hat, a scarf and gloves. The gloves were two totally different gloves, both right hand ones. They are approximately the 30th pair of gloves she's had this winter. She doesn't keep track of things like gloves or scarves. If I were to buy her a matching set every time an old set disappeared, our entire budget would be spent on gloves and scarves. So finding two to put on is a win, a triumph.
It was a triumph we were on the sidewalk two minutes before the bus arrived, and Janey was happy. I had to grab my phone at the last minute so I could put on the SpongeBob songs she currently needs while waiting. If the connection had been down or if I hadn't been able to immediately locate my phone, we would have had a problem, to say the least.
It was a triumph she got on the bus on her own, and sat in a different seat than usual, as I saw the aide tell her to. She is like Sheldon on "The Big Bang Theory"---she doesn't care for being made to sit in the wrong place. But she did, without protest.
It is a triumph that she is off to school.
I think those who teach kids with autism understand the triumphs that every successful morning include. To anyone else out there who might not, when you see Janey, hair not looking perfect, gloves unmatched, hint of chips on her face, when you see that, keep in mind the triumphs it took to get through the morning. To the other parents like myself---here's a coffee toast to you. May you have many, many small triumphs today.
It was a triumph Janey got a full night's sleep, and woke up without protest. Sleep is not something any of us take for granted.
It was a triumph that I got Janey dressed. I felt guilty thinking how I should be insisting on her dressing herself more in the mornings. But doing so would necessitate getting up about an hour earlier. We are on a very tight schedule every morning, and I'll take her cooperation over her independence when it comes to quick dressing any day.
It was a triumph I did her hair at all. I know there are a few tangles. I hate that. But as I worked to brush them out, Janey screamed and had the look in her eyes that let me know that if I kept going, there was no way on earth we'd be getting on that bus. So I resolved to brush them out before bed tonight, and I did my unskillful braid hairdo, and we called it good enough.
It was a triumph I brushed Janey's teeth well---twice. She allows a thorough brushing without complaining. The second thorough brushing came after she found the chips while I rushed to get dressed myself. I think she might still have a little onion and garlic breath, but so be it. I am glad Janey eats breakfast at school, but a little chip appetizer isn't a huge deal.It was a triumph that Janey left the house with a coat, a hat, a scarf and gloves. The gloves were two totally different gloves, both right hand ones. They are approximately the 30th pair of gloves she's had this winter. She doesn't keep track of things like gloves or scarves. If I were to buy her a matching set every time an old set disappeared, our entire budget would be spent on gloves and scarves. So finding two to put on is a win, a triumph.
It was a triumph we were on the sidewalk two minutes before the bus arrived, and Janey was happy. I had to grab my phone at the last minute so I could put on the SpongeBob songs she currently needs while waiting. If the connection had been down or if I hadn't been able to immediately locate my phone, we would have had a problem, to say the least.
It was a triumph she got on the bus on her own, and sat in a different seat than usual, as I saw the aide tell her to. She is like Sheldon on "The Big Bang Theory"---she doesn't care for being made to sit in the wrong place. But she did, without protest.
It is a triumph that she is off to school.
I think those who teach kids with autism understand the triumphs that every successful morning include. To anyone else out there who might not, when you see Janey, hair not looking perfect, gloves unmatched, hint of chips on her face, when you see that, keep in mind the triumphs it took to get through the morning. To the other parents like myself---here's a coffee toast to you. May you have many, many small triumphs today.
Friday, October 28, 2016
Thank you, Janey, for being such a cool kid
Last night, Janey, Daddy and I had the probably ill-conceived idea of ordering Thai take-out from a town four towns over, on a rainy and traffic-filled evening. You were up for it, because you are always up for a ride in the car. You were excited just to be going someplace with your parents. That's not something every twelve year old girl would be, my sweetie.
I did your hair while Daddy ordered. I put it in strange Pippi Longstocking braids, because it's so thick and curly that braids stand out to the side. Then I clipped them together on top. It looked very elegant on you, Janey, but then again, you always look beautiful. I told you how lovely you looked, and you admired yourself in the mirror. You aren't going through that stage a lot of girls do, where you put yourself down. You know you are beautiful. I love that about you.
In the car, we got caught in traffic. But you didn't care, because we were listening to music. I was using my Slacker Radio app to find many, many versions of "King of the Road", a song you love and I love and my parents loved growing up and in fact a lot of people growing up liked, because it mentions Bangor, Maine, and not many songs growing up ever seemed to know Maine existed. You don't love it for that. You love it for the beat, the rhythm, the pacing, whatever it is that makes you able to pick out great songs and enjoy them. When the versions I played strayed too far from the original, you said "Music, please, music!" letting me know that I wasn't playing Music with a capital M. You know what you like, and you have great taste. You mostly like the Roger Miller version and the Randy Travis one, and those are the best, I agree.
On the way back, we played another song you love---"If I Were a Rich Man" from Fiddler on the Roof. There, I found a version by a woman with a Cyrillic name, a jazzy version without words, instead just repeating the "dabba dabba dabba do" type scat to the tune all the way through. It's something I would have never listened to, but you loved it and asked for it over and over. By the third time, I liked it pretty well too, and so did Daddy. You aren't influenced by anyone else. You like what you like, and that is great. We all moved to the beat in the car, driving in the dark and rain, our own little world.
At home, you tried all the Thai food, because you always try everything. You are an adventurous eater, far more than I am. We watched "Family Feud" on the old game show channel, and you didn't object or cry for your own shows. I think you're even getting to like Richard Dawson. Without us really noticing, you are gradually allowing Daddy and me to do the things we enjoy more and more. You are growing up.
When you were tired, you said "Snuggle on Mama's bed?" which is what you say every night. Mama's bed is actually your bed, but we know what you mean. I lay down with you as you played a little iPad and then fell asleep. It was your usual bedtime, around seven. You sleep when you are tired, and you are usually a good sleeper. Daddy and I stayed awake about another hour, and then we went to sleep too. You're a morning person, like your father and William.
Janey, I know it's very unlikely you'll read this. You can't read, and if I read it to you, I don't know if you'd understand most of it or not. And that doesn't matter. That doesn't make you less interesting, or beautiful, or opinionated, or cool. I won't pretend it is always easy helping you live the best life you can. It is hard, a lot of times. I won't lie and say I don't wish sometimes life would be easier for you, or for us. But you are one incredible kid. I love you, Janey.
I did your hair while Daddy ordered. I put it in strange Pippi Longstocking braids, because it's so thick and curly that braids stand out to the side. Then I clipped them together on top. It looked very elegant on you, Janey, but then again, you always look beautiful. I told you how lovely you looked, and you admired yourself in the mirror. You aren't going through that stage a lot of girls do, where you put yourself down. You know you are beautiful. I love that about you.
In the car, we got caught in traffic. But you didn't care, because we were listening to music. I was using my Slacker Radio app to find many, many versions of "King of the Road", a song you love and I love and my parents loved growing up and in fact a lot of people growing up liked, because it mentions Bangor, Maine, and not many songs growing up ever seemed to know Maine existed. You don't love it for that. You love it for the beat, the rhythm, the pacing, whatever it is that makes you able to pick out great songs and enjoy them. When the versions I played strayed too far from the original, you said "Music, please, music!" letting me know that I wasn't playing Music with a capital M. You know what you like, and you have great taste. You mostly like the Roger Miller version and the Randy Travis one, and those are the best, I agree.
On the way back, we played another song you love---"If I Were a Rich Man" from Fiddler on the Roof. There, I found a version by a woman with a Cyrillic name, a jazzy version without words, instead just repeating the "dabba dabba dabba do" type scat to the tune all the way through. It's something I would have never listened to, but you loved it and asked for it over and over. By the third time, I liked it pretty well too, and so did Daddy. You aren't influenced by anyone else. You like what you like, and that is great. We all moved to the beat in the car, driving in the dark and rain, our own little world.
At home, you tried all the Thai food, because you always try everything. You are an adventurous eater, far more than I am. We watched "Family Feud" on the old game show channel, and you didn't object or cry for your own shows. I think you're even getting to like Richard Dawson. Without us really noticing, you are gradually allowing Daddy and me to do the things we enjoy more and more. You are growing up.
When you were tired, you said "Snuggle on Mama's bed?" which is what you say every night. Mama's bed is actually your bed, but we know what you mean. I lay down with you as you played a little iPad and then fell asleep. It was your usual bedtime, around seven. You sleep when you are tired, and you are usually a good sleeper. Daddy and I stayed awake about another hour, and then we went to sleep too. You're a morning person, like your father and William.
Janey, I know it's very unlikely you'll read this. You can't read, and if I read it to you, I don't know if you'd understand most of it or not. And that doesn't matter. That doesn't make you less interesting, or beautiful, or opinionated, or cool. I won't pretend it is always easy helping you live the best life you can. It is hard, a lot of times. I won't lie and say I don't wish sometimes life would be easier for you, or for us. But you are one incredible kid. I love you, Janey.
Sunday, June 12, 2016
The Janey of today
On my Facebook feed today, a picture from three years ago came up, which I re-shared, a picture of Janey looking at herself in the reflection of the John Hancock building. I love that picture. I think it's my favorite of all the pictures I've taken of Janey. It struck me a lot today, looking at it, how much Janey has changed in the time since it was taken.The Janey of today is a very different girl than the Janey of three years ago. She even looks a lot different. When she was in the hospital a year ago, her hair got so hopelessly tangled we ended up cutting it short. When it grew back, it came in very curly, like her brothers' hair, although up until that point it had been pretty straight. It also was darker in color, more of a light brown than blonde. She is also a lot taller and a lot more mature looking. She looks much older than her 11 years, not younger than her years as she did as a little girl.
It goes a lot further than looks, though. Especially over the last year, Janey is far calmer than she used to be. Her outbursts and screaming spells still happen, but less than before, by far. She hasn't had a day in a while, knock on wood, where she cried all day. Those days used to be fairly common.
However, there are parts of the differences in Janey that are less positive. A big one is speech. She talks less than I think she ever has, except for when she was two, before her regression. It's extremely rare to hear a complete sentence from her any more. Most of her speech is single words now and then, or short well-used phrases "Cuddle on Mama's bed! Want cheese! Socks on! Want shower!" I read old blog posts and sometimes it's very hard reading what she used to say. Her talking has always ebbed and flowed, but this low ebb has lasted a while.
In general, Janey is more introverted than she used to be. The other day, I realized she had barely interacted with us all day. She watched YouTube on her iPad, or videos on TV. She takes car rides with us, and listens to music and looks out the window. Hours can go by when she doesn't ask for anything or need anything. At first, this was a bit of a break. At times, it still is. But something feels lost. I feel sometimes like her personality is slipping away a bit.
Who is Janey today? She's a beauty, if I might say so myself. She's a lover of music, as much as ever. Out of the blue she'll ask for a song she hasn't heard in ages, or will start singing it. She's a great user of computers, at least in terms of opening YouTube, picking videos, switching between them and knowing which ones to put on to make the other she wants show up in the suggested list. She's a great eater of good food, much more than I am. She asks for "soup", which is kale with olive oil and hot sauce, all the time. She's, most of the time, a pretty good sleeper. She loves a good ride to anywhere or no-where.
Janey is also, though, a person with very, very little speech. She is someone who has almost no traditional academic skills. She can't read, write, do math, name her shapes or colors---although I know she knows much more than she can show, what she can show is very little. She's someone who is unable to tell us things we need to know for her basic safety---if she hurts, if something upsets her when she isn't with us (or often even when she IS with us). She will not be capable of living on her own, ever, unless a miracle happens. She will not hold a job. No matter how you look at it, no matter how much we accept her as she is, and we do, no matter how much we love her, and we love her beyond all words, she is extremely disabled.
What are my hopes for the Janey of today, and of tomorrow? I hope we are able to care for her at home for a very long time. I hope she is always treated with dignity and kindness. I hope she is able to enjoy life, to do the things that bring her pleasure. I hope when we are gone, the world is ready for her. I hope by that time, there is a place for her, a place she can live her life to its fullest. I hope she is always as happy as she was that day she saw herself reflected, a beautiful person inside and out.
Wednesday, April 13, 2016
Mostly just pictures!
I took a bunch of pictures of Janey tonight, and thought I'd share them in a mostly just pictures post! We have a routine with taking pictures which she loves. I pretend to tickle her (she doesn't like to be actually tickled, but she loves me to say "tickle-tickle!" with my hands in tickle position), and then I take a picture, to get a smile! Not that I only want smiling pictures of her, but I love seeing her smile.
Here's Janey playing with kinetic sand, a wonderful present from a dear friend. It's the first toy in years Janey has had an interest in, and she loves it.
Smiling in the sunlight
I love to see my Janey happy.
Another big smile!
My shadow taking her picture! Janey has the blessing or curse to have the family hair, thick and very curly. Her brothers both have it too, as do assorted members of my family (not me!) It changed when she was about 7 from being straight and very blond to being ash blond and curly.
Janey pointing! She doesn't point a lot, except at herself as a way of saying "I want that", so this was a lucky shot. She was wanting Tony to hurry up and come down to the driveway to take her for a car ride.
Sunday, December 20, 2015
A wonderful day
Once in a while, everything aligns and there comes a day like yesterday, a wonderful day for Janey and for us.
The first special treat of the day was seeing Janey see her brother William. William is a junior in college, and Tony went to pick him up and bring him home from Christmas while Janey was asleep last night. First thing in the morning, we took her into his room. It took her a minute to register she was really seeing him, but once she did, she was thrilled. She hugged him, over and over and over, backing up after each hug to look at him with a huge smile and total delight.
Soon, it was time to dress Janey up for the next treat of the day. A friend very, very kindly gave us tickets to see an autism-friendly performance of The Urban Nutcracker, an updated version of the classic ballet. I didn't tell Janey about it until it was time to get dressed. The part she might have been most excited to hear was that my friend Maryellen was going with us---one of her favorite people in the world. I dressed Janey up in a dress with a sparkly skirt, and tried to manage her hair---it's at a hugely awkward inbetween stage while we wait for it to grow out. She looked pretty anyway!
Janey was extremely cheerful as we drove to the city and parked to walk to the show. She seems to love the city, the lights and excitement and bustle. We need to take her there more. We got to the show near starting time, and Janey happily sat down to wait. When the curtain opened, it was to a dancing, stomping, drumming number. She was overcome! She almost exploded with happiness and excitement. She also did something I haven't seen her do out of happiness before---bite her arm. She didn't bite it hard enough to hurt, but more it seemed almost as a way to keep from screaming with excitement. I've read recently that sometimes things like arm biting are comforting to kids with autism, and this was one time it seemed that way, a bit.
 |
| My happy, sweet girl |
Autism friendly performances (at least the two we've been to!) are a great idea. It's wonderful to be able to relax and know that I don't have to worry about Janey's behavior. She needs frequent breaks, even when she's watching something she loved, and we got up and took her out several times. When she came back, she was happy to watch for a while, including at one point for about 20 minutes. There was a scene with "real" snow" falling on the stage, and Janey said "It's snowing!" I loved watching her face as she watched the show.
The most special part was during the intermission, when a little boy came up to Janey and said "Hi, Janey!" It turned out he's in a classroom next to hers at school. Her reaction was incredible! She was THRILLED to see him. They held hands for a long, long time, smiling at each other with huge smiles and laughing. They even had a little conversation, something that sounded like it was taught by ABA---he said "How are you?" and she said "I am fine!" Then later he said "What's your name?" although he obviously knew her name! She didn't answer that, but seemed to love to be asked. I was in tears watching them interact. It was by far the most I've ever seen Janey interact with a child her age. It felt like that rarely seen thing---a Christmas miracle.
After the show, we had a quick meal, along with Maryellen. The whole time (and indeed the whole day), Janey was happy. At one point, Maryellen and I said with amazement how we would not have dreamt that a day like this would have been possible a year ago.
We went after that to pick up Freddy from the bus, also coming home from college. Janey was very happy to see him too. On the way home, she said to him "Want to play your game?" by which she meant, we figured out, a game where Freddy chases her and says "I'm gonna get you!" I was really struck by Janey calling it a game, knowing that it's something associated with Freddy that they do for fun together. We've never called it a game, and it's cool she understands what that word means enough to use it there.
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| Freddy, Janey and William |
The rest of the day was terrific, too---having all the kids at home, joking around, and Janey in the midst of it, happy and laughing. It was a day I want to remember always, and reflect back on when days aren't as bright. It's my Christmas present, one of the best ones I've ever gotten.
Friday, September 12, 2014
A Tale of Two Afternoons
Janey gets home from school this year at about 2:30. This is far earlier than other years, when she went to after-school. I looked into after-school for her this year, and talked to the director, who seemed great, but it would only last until 4:15, and has no transportation. That would mean I'd have to pick her up, as Tony would not be home yet, and driving out into Boston traffic at that time is not something I want to do. So for now, Janey has the afternoon at home.
Mid to late afternoon has always been the toughest time of day for Janey. I think she gets tired by then, due to her poor sleeping, but she doesn't nap. She has used up her day's reserves of holding it together. Daddy isn't home yet, and I am tired too. If she hasn't eaten well, she's hungry. Her medication is wearing off. There's tons of reasons, and they all combine to make around 3-5 pm the most likely time of the day for meltdowns.
Monday, Janey got off the bus ready to explode. She ran to her bed and flung herself onto it, something that looks like a teenager to me and almost makes me laugh, if it wasn't usually the start of trouble. I went over to her and did my afternoon bit "I'm so happy to see you home! I missed you a million! How is my sweetie? How was school?" As usual, she doesn't respond. Her pull-up was very wet, and so I started to change her. When it came time to put another pull-up back on, she threw a fit. She ripped the new pull-up. If any of you have priced pull-ups for kids 8-14, you know they cost close to a dollar each. So we discourage ripping. I said "You don't have to wear a pull-up right now, but you have to wear some pants" Janey decided she didn't want to. She let me know this by starting to scream and grabbing my hair and pulling as hard as she could. It took all my strength to get away from her.
I'll spare you all the details of the screaming, hair pulling and flinging about of things from that afternoon. Suffice to say it was one of the longest two hours of my life. When Tony got home, I was beyond discouraged and tired. Janey was screamed out. She looked burnt out, glassy-eyed. So did I.
The next afternoon, I got her off the bus and braced myself. She didn't look at me as she walked in. She went straight for her computer, and started watching You-Tube videos. On impulse, I said "I'll be here reading if you need me". She didn't. For the next few hours, we barely interacted. A few times, she went to get a snack and needed help cutting cheese or opening a jar, and I helped her, but we barely talked. The house was quiet. About an hour into the afternoon, she came over to me and said in a fast and odd voice, one I hadn't heard before from her, "Need a new pull-up" I changed her as quickly as I could, without comment. She gave me a look I won't forget soon---a look that said what she couldn't say in words---that she was thinking of the day before and glad we were doing this day differently. When Tony got home, prepared to see us both as shells of ourselves, he was amazed we both looked rested and happy.
So what's the message? I don't know for sure. Whenever I think I've figured something out with Janey, I realize I haven't, so I'm reluctant to draw many conclusions. But on Wednesday and Thursday, I took the same approach. I kept things as quiet and low key as I could. I interacted with Janey only when she requested it. And we had great afternoons.
I keep thinking back to how I often greet Janey. I do what I did for years with the boys. I overact. I truly am happy to see them after school, and I want them to know that. I shower them with attention. I think the boys liked that. But the boys are different people than Janey. Maybe it took me until now to really understand that isn't what Janey wants. She has had an intense day at school, and she wants what a lot of kids want---to kick back, do her own thing and have her mother stay cool. Every kid is different. What Janey wants or needs, regardless of her autism, is not what William and Freddy want or need. So for now, I'm going to back off in the afternoons. No more dramatic greetings or smothering attention. I will play it cool, and we'll see how that goes.
Mid to late afternoon has always been the toughest time of day for Janey. I think she gets tired by then, due to her poor sleeping, but she doesn't nap. She has used up her day's reserves of holding it together. Daddy isn't home yet, and I am tired too. If she hasn't eaten well, she's hungry. Her medication is wearing off. There's tons of reasons, and they all combine to make around 3-5 pm the most likely time of the day for meltdowns.
Monday, Janey got off the bus ready to explode. She ran to her bed and flung herself onto it, something that looks like a teenager to me and almost makes me laugh, if it wasn't usually the start of trouble. I went over to her and did my afternoon bit "I'm so happy to see you home! I missed you a million! How is my sweetie? How was school?" As usual, she doesn't respond. Her pull-up was very wet, and so I started to change her. When it came time to put another pull-up back on, she threw a fit. She ripped the new pull-up. If any of you have priced pull-ups for kids 8-14, you know they cost close to a dollar each. So we discourage ripping. I said "You don't have to wear a pull-up right now, but you have to wear some pants" Janey decided she didn't want to. She let me know this by starting to scream and grabbing my hair and pulling as hard as she could. It took all my strength to get away from her.
I'll spare you all the details of the screaming, hair pulling and flinging about of things from that afternoon. Suffice to say it was one of the longest two hours of my life. When Tony got home, I was beyond discouraged and tired. Janey was screamed out. She looked burnt out, glassy-eyed. So did I.
The next afternoon, I got her off the bus and braced myself. She didn't look at me as she walked in. She went straight for her computer, and started watching You-Tube videos. On impulse, I said "I'll be here reading if you need me". She didn't. For the next few hours, we barely interacted. A few times, she went to get a snack and needed help cutting cheese or opening a jar, and I helped her, but we barely talked. The house was quiet. About an hour into the afternoon, she came over to me and said in a fast and odd voice, one I hadn't heard before from her, "Need a new pull-up" I changed her as quickly as I could, without comment. She gave me a look I won't forget soon---a look that said what she couldn't say in words---that she was thinking of the day before and glad we were doing this day differently. When Tony got home, prepared to see us both as shells of ourselves, he was amazed we both looked rested and happy.
So what's the message? I don't know for sure. Whenever I think I've figured something out with Janey, I realize I haven't, so I'm reluctant to draw many conclusions. But on Wednesday and Thursday, I took the same approach. I kept things as quiet and low key as I could. I interacted with Janey only when she requested it. And we had great afternoons.
I keep thinking back to how I often greet Janey. I do what I did for years with the boys. I overact. I truly am happy to see them after school, and I want them to know that. I shower them with attention. I think the boys liked that. But the boys are different people than Janey. Maybe it took me until now to really understand that isn't what Janey wants. She has had an intense day at school, and she wants what a lot of kids want---to kick back, do her own thing and have her mother stay cool. Every kid is different. What Janey wants or needs, regardless of her autism, is not what William and Freddy want or need. So for now, I'm going to back off in the afternoons. No more dramatic greetings or smothering attention. I will play it cool, and we'll see how that goes.
Saturday, May 10, 2014
Group hug end to a great week
Janey's new school has a half day on Fridays. For now, I am going to take her to her old school for the second half of that day. She got home on the bus about 12:45, and off we went. I must say---one thing I don't miss AT ALL is the drive! I got very used to it over the years, but it only took a week of the bus for me to get NOT used to it! But it was always worth it to arrive at our destination, and Friday was no exception. Janey did look confused at first when she saw where we were---like she was thinking "Hey! I am going to the new school now! Why are we here at the old school?" but it only took her a minute to get very happy she was there. We went down to her old classroom, where her classmates were waiting to see her.
And then---a movie moment. One of those moments that you can't script, one that will stay in my mind forever and ever. Almost every kid in Janey's old class got up from their seats and ran over and hugged Janey. It was a huge, amazing group hug. Many kids were saying "Janey! We miss you!" Janey had a second of looking overwhelmed, and then she smiled---a calm, happy smile, like she was just getting her due! Wow. That was wonderful.
Michelle, Janey's ABA therapist who works with her in her new school and also did at her old school (and still works with other kids there) told me the kids ask about Janey every day and want to see pictures and hear about what she is doing. That's great to hear. It was also great to hear all she had to tell me about the new school---stories like how Janey noticed the para in the room had a pickle in her lunch, and started asking every day for a pickle, so now the para brings her one too, how wonderful the gym teachers are and how much Janey loves gym, how they work on life skills like brushing hair and teeth (several days I noticed Janey came home with her hair more skillfully done that I did it in the morning), how another girl in the class sometimes looks to Janey to see what she is doing, and then does what she does (it was great thinking of Janey maybe being a bit of a leader like that!)---so many good stories. And Janey, the little sneak, is evidently using the POTTY at school---something she won't do at home and wouldn't do at her old school. I don't think she realizes we all communicate!
Last week was really a terrific week. Janey went happily on the bus like a pro, I got almost all good reports, we had the triumphant return with the hug---it was terrific. This weekend is seeing a return to some cranky behaviors, and some poor sleeping, which I hope is just the weekend change of routine and not the start of a tougher spell, but we'll always have last week!
Thanks to all of you for your support, here and on my Facebook page. In my extreme nervousness about how all this would go, it was a lifesaver to have a place to post updates and share my happiness and concerns. It amazes me every day that there are people out there all over the country and world that care about Janey and our family. Please know how much it means to me.
And then---a movie moment. One of those moments that you can't script, one that will stay in my mind forever and ever. Almost every kid in Janey's old class got up from their seats and ran over and hugged Janey. It was a huge, amazing group hug. Many kids were saying "Janey! We miss you!" Janey had a second of looking overwhelmed, and then she smiled---a calm, happy smile, like she was just getting her due! Wow. That was wonderful.
Michelle, Janey's ABA therapist who works with her in her new school and also did at her old school (and still works with other kids there) told me the kids ask about Janey every day and want to see pictures and hear about what she is doing. That's great to hear. It was also great to hear all she had to tell me about the new school---stories like how Janey noticed the para in the room had a pickle in her lunch, and started asking every day for a pickle, so now the para brings her one too, how wonderful the gym teachers are and how much Janey loves gym, how they work on life skills like brushing hair and teeth (several days I noticed Janey came home with her hair more skillfully done that I did it in the morning), how another girl in the class sometimes looks to Janey to see what she is doing, and then does what she does (it was great thinking of Janey maybe being a bit of a leader like that!)---so many good stories. And Janey, the little sneak, is evidently using the POTTY at school---something she won't do at home and wouldn't do at her old school. I don't think she realizes we all communicate!
Last week was really a terrific week. Janey went happily on the bus like a pro, I got almost all good reports, we had the triumphant return with the hug---it was terrific. This weekend is seeing a return to some cranky behaviors, and some poor sleeping, which I hope is just the weekend change of routine and not the start of a tougher spell, but we'll always have last week!
Thanks to all of you for your support, here and on my Facebook page. In my extreme nervousness about how all this would go, it was a lifesaver to have a place to post updates and share my happiness and concerns. It amazes me every day that there are people out there all over the country and world that care about Janey and our family. Please know how much it means to me.
Tuesday, December 3, 2013
One morning with Janey (and thoughts about progress)
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!
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!
Monday, September 23, 2013
Routines...Once again, I was clueless
If Janey ever does learn to talk well, I imagine one of the first things she'll have to say to me is "Why did it take you so darn long to figure out basic things about me?" I don't know if Janey's personality is showing itself more strongly lately, or if I'm just paying more attention, or what, but this week, I am realizing that Janey really does like routines.
You are probably saying to yourself "Is this woman clueless or what? Her daughter is autistic! Don't all autistic kids like routines?" Well, probably most of them do. But with Janey, it's not always easy to tell. Her problems with communication often leave us completely not aware what she is upset about. The problem is complicated by the fact that Janey has a fantastic memory for small details. That results in routines that are in her head, but that we would have no earthly way of knowing about or following, because she can't tell us about them, and we haven't even noticed they WERE routines. Another barrier to me figuring this out---Janey is not at all bothered by new situations. I guess, thinking about it, that makes sense. Brand new situations don't HAVE a routine. This explains something that always confused me---why the early weeks of school have always been among Janey's best weeks of the year. I always thought it was that she was very happy to get back to school, and that's some of it, but it's also that she hasn't yet got the school year routines carved in stone, being in a new classroom and all, so it's not as disturbing if someone doesn't follow them.
A great example of how I'm slowly figuring this out----this weekend, I was getting Janey dressed to go shopping with Tony. We did the pullup, the clothes, washing off her feet (as she somehow attracts dirt to her feet like a magnet) and washing hands and face. I decided to skip brushing hair. Her hair looked okay, and she hates it being brushed. Her long hair is one thing I'm probably very selfish about. I don't want her to have short hair. I love her long hair, and I think she likes it too. But brushing is a battle. However, Janey balked at the door, went back in and grabbed the hairbrush and handed it to me. I had skipped part of the routine. I thought maybe because she was ASKING for her hair brushed, she'd be happier about it, but she wasn't---she screamed for it just the same. But screaming or not, she felt it needed to be done.
Another example---one of the first times we took Janey to a neighborhood where my favorite thrift store is, Tony took William and her to a restaurant near it. It was a rare attempt at restaurant eating, and by reports, not that successful. She has some fries, but quickly got restless and they had to take most of the food home. However, now every single time to go to the neighborhood and walk past the restaurant, she tries to pull us in there, open or not. Somehow, that got processed as a routine, but I am quite sure if we did take her, she wouldn't like it any better than the first time.
I am sure there are hundreds of other routines I'm not aware I'm supposed to be following. I think a lot of Janey's random screams and fits are because someone is not doing what they are supposed to be doing. Once in a while, she can silently correct things, like how she often moves my arms or legs when we are reading or snuggling, so they are in the right positions, or how she finds a bag we once got of small red cocktail type straws that have become the only acceptable straw for chocolate milk. But so many things are out of her control. It's not that I would do them all, if I knew them, but if she could talk more and understand more, I could explain to her why we couldn't. I could avoid the situations that would set up the need for a routine to be followed. I would not be as surprised by her screams if I knew I wasn't doing what she thought I should. For now, I will have to just do the best I can, with my memory that is not nearly as sharp as hers.
And now, for a bonus, a picture from Janey at school today! It doesn't really have to do with the routines, but I love it anyway, and it shows how she is included and happy at school, working on a science experiment. Thanks, Amy!
You are probably saying to yourself "Is this woman clueless or what? Her daughter is autistic! Don't all autistic kids like routines?" Well, probably most of them do. But with Janey, it's not always easy to tell. Her problems with communication often leave us completely not aware what she is upset about. The problem is complicated by the fact that Janey has a fantastic memory for small details. That results in routines that are in her head, but that we would have no earthly way of knowing about or following, because she can't tell us about them, and we haven't even noticed they WERE routines. Another barrier to me figuring this out---Janey is not at all bothered by new situations. I guess, thinking about it, that makes sense. Brand new situations don't HAVE a routine. This explains something that always confused me---why the early weeks of school have always been among Janey's best weeks of the year. I always thought it was that she was very happy to get back to school, and that's some of it, but it's also that she hasn't yet got the school year routines carved in stone, being in a new classroom and all, so it's not as disturbing if someone doesn't follow them.
A great example of how I'm slowly figuring this out----this weekend, I was getting Janey dressed to go shopping with Tony. We did the pullup, the clothes, washing off her feet (as she somehow attracts dirt to her feet like a magnet) and washing hands and face. I decided to skip brushing hair. Her hair looked okay, and she hates it being brushed. Her long hair is one thing I'm probably very selfish about. I don't want her to have short hair. I love her long hair, and I think she likes it too. But brushing is a battle. However, Janey balked at the door, went back in and grabbed the hairbrush and handed it to me. I had skipped part of the routine. I thought maybe because she was ASKING for her hair brushed, she'd be happier about it, but she wasn't---she screamed for it just the same. But screaming or not, she felt it needed to be done.
Another example---one of the first times we took Janey to a neighborhood where my favorite thrift store is, Tony took William and her to a restaurant near it. It was a rare attempt at restaurant eating, and by reports, not that successful. She has some fries, but quickly got restless and they had to take most of the food home. However, now every single time to go to the neighborhood and walk past the restaurant, she tries to pull us in there, open or not. Somehow, that got processed as a routine, but I am quite sure if we did take her, she wouldn't like it any better than the first time.
I am sure there are hundreds of other routines I'm not aware I'm supposed to be following. I think a lot of Janey's random screams and fits are because someone is not doing what they are supposed to be doing. Once in a while, she can silently correct things, like how she often moves my arms or legs when we are reading or snuggling, so they are in the right positions, or how she finds a bag we once got of small red cocktail type straws that have become the only acceptable straw for chocolate milk. But so many things are out of her control. It's not that I would do them all, if I knew them, but if she could talk more and understand more, I could explain to her why we couldn't. I could avoid the situations that would set up the need for a routine to be followed. I would not be as surprised by her screams if I knew I wasn't doing what she thought I should. For now, I will have to just do the best I can, with my memory that is not nearly as sharp as hers.
And now, for a bonus, a picture from Janey at school today! It doesn't really have to do with the routines, but I love it anyway, and it shows how she is included and happy at school, working on a science experiment. Thanks, Amy!
Thursday, February 28, 2013
Janey's various looks---pictures!
Janey and Daddy eating at a friend's house. Her cheeks are like mine---they get red very easily!
Thursday, February 21, 2013
Two hours of morning
I wake at 6 am, or rather Janey wakes me up. That's nice and late compared to her standard waking time, and I am full of energy. I'm determined this day is going to be different than the rest of the vacation days. This day, I'm going to get a lot done---lots of dishes, laundry, and also lots of creative and educational activities with Janey. I look at my yesterday self with scorn---why do I get so lazy?
Now it's two hours later. Janey is watching PBS, for the moment, and I'm sitting here with my 3rd coffee trying hard to summon up the energy to do anything. As is often the case when I am overwhelmed like this, I turn to here, to this blog. Thank you, my dear readers, for listening!
What wore me out? Well, lots of things. A lot of it is just doing the standard morning things with Janey----getting her dressed, fed, her hair and teeth brushed. None of it is easy. She doesn't cooperate with the dressing---passively---she walks away in the middle or acts like she doesn't have any idea how to put legs in pant legs. She demands foods we don't have for breakfast, and settles for a half loaf of stale French bread, which she crumbles into thousands of pieces while eating it. She is eager to have her teeth brushed, one of her favorite things, but I somehow do it wrong, and she starts slapping me repeatedly, resulting in the useless time out on the couch. And hair brushing is always hell, as she screams like I am trying to kill her, but when I stop, she demands more brushing.
A few random times other than those, Janey is angry at me. She does her new behavior---suddenly and out of the blue attacking me, hitting me and looking furious. I hold her at arm's length, and she moves in with her head to headbutt my cheeks. It's truly a bit scary.
Finally, a little break. There is no cream for coffee, and William wants cream, so he offers to watch Janey while I walk to the convenience store. I tell you, that walk feels like a huge treat. I don't realize some days how isolated I get with Janey. Just being in a brightly lit store full of assorted foods feels strangely thrilling. I get the cream and some cat food, and wish the line was longer, as I listen with interest to the cashiers talking about how they don't get paid enough to train new employees. The conversations seems fascinating to me---an exotic piece of the world outside our House of Autism.
And now it's just past eight, and I'm about done for the day. Any energy I had is spent. I have 9 hours to go until Tony is home, so of course I'm going to have to keep going, but it's not the energetic, creative keep on going I wanted to have. It's the get-through-the-day-with-all-of-us-alive type energy. Once again.
Now it's two hours later. Janey is watching PBS, for the moment, and I'm sitting here with my 3rd coffee trying hard to summon up the energy to do anything. As is often the case when I am overwhelmed like this, I turn to here, to this blog. Thank you, my dear readers, for listening!
What wore me out? Well, lots of things. A lot of it is just doing the standard morning things with Janey----getting her dressed, fed, her hair and teeth brushed. None of it is easy. She doesn't cooperate with the dressing---passively---she walks away in the middle or acts like she doesn't have any idea how to put legs in pant legs. She demands foods we don't have for breakfast, and settles for a half loaf of stale French bread, which she crumbles into thousands of pieces while eating it. She is eager to have her teeth brushed, one of her favorite things, but I somehow do it wrong, and she starts slapping me repeatedly, resulting in the useless time out on the couch. And hair brushing is always hell, as she screams like I am trying to kill her, but when I stop, she demands more brushing.
A few random times other than those, Janey is angry at me. She does her new behavior---suddenly and out of the blue attacking me, hitting me and looking furious. I hold her at arm's length, and she moves in with her head to headbutt my cheeks. It's truly a bit scary.
Finally, a little break. There is no cream for coffee, and William wants cream, so he offers to watch Janey while I walk to the convenience store. I tell you, that walk feels like a huge treat. I don't realize some days how isolated I get with Janey. Just being in a brightly lit store full of assorted foods feels strangely thrilling. I get the cream and some cat food, and wish the line was longer, as I listen with interest to the cashiers talking about how they don't get paid enough to train new employees. The conversations seems fascinating to me---an exotic piece of the world outside our House of Autism.
And now it's just past eight, and I'm about done for the day. Any energy I had is spent. I have 9 hours to go until Tony is home, so of course I'm going to have to keep going, but it's not the energetic, creative keep on going I wanted to have. It's the get-through-the-day-with-all-of-us-alive type energy. Once again.
Thursday, December 20, 2012
Dispatch from the middle of the night
It's 2:15am, and Janey is happily watching Count With Maisy. She has worked out her own new sleep schedule. It consists of going to sleep at the earlier possible opportunity, often 6:30pm. She then wakes around 1am, ready for a party. We do what we can to get her to sleep, but often give up and put on a video. She watches and jumps around and periodically makes demands for food, which we turn down, causing her to scream, but not the lengthy hours long scream, just a momentary scream. Around 2:30 or 3, she drifts back off, to wake again around 6:30am. It's some good times, I tells ya.
Part of the fun is the time from 5:30pm, when she gets home from afterschool, and 6:30, her new bedtime she's picked. That is an hour of non-stop crying and eating. She comes home in a mood and a half. Tony gives her dinner right away, and more dinner, and more dinner, and some after dinner treats and some dessert. She stops screaming long enough to eat and demand more to eat. Then she demands a snuggle with me, by which point we are ready to do anything to stop the crying. Then she goes to sleep.
This is actually an improvement over a few weeks ago, when she hadn't figured out yet she wanted to go to sleep that early. Then, she was screaming from when she got home until 8 or so. Then she was waking at 3 or so to stay up, demanding and angry.
Needless to say, Tony and I are often exhausted during the day. I feel for him, at work. He can't arrange his schedule to nap. I do---working all I can in the morning and early afternoon, and then collapsing for an hour or two.
I've realized lately that Janey has become more of a fan of routines, whether the routines are pleasant or not. For example, the other day I took out her barrettes. That is usually followed by brushing her hair, but I got distracted and it didn't that time. Janey hates her hair brushed, hates it very much. But after a few minutes went by and I hadn't brushed, she brought me the hairbrush and handed it to me. It was time to brush, like it or not, she seemed to be saying. So I did, and she screamed as usual. Then again I got distracted. She came over again after a bit, and said "Braid?" I hadn't fixed her hair, braided or ponytaled it or whatever, which she also doesn't like but which is the routine. And so I think the coming home, crying, sleeping early, waking in the night, has become the routine to follow. Last night in the car home, she even seemed to be planning it. She said, in a type of speech I've never heard from her before "I say 'I am ANGRY at you, Daddy!'" She never actually says that to him, just screams, but I guess she was planning the screaming.
So what do we do? History has showed we wait it out. That is all that seems to work. Christmas vacation is coming soon, and that will change the routines,and hopefully break this latest one. Until then, we are daytime zombies, evening objects of fury, middle of the night monitors. Life with Janey.
Part of the fun is the time from 5:30pm, when she gets home from afterschool, and 6:30, her new bedtime she's picked. That is an hour of non-stop crying and eating. She comes home in a mood and a half. Tony gives her dinner right away, and more dinner, and more dinner, and some after dinner treats and some dessert. She stops screaming long enough to eat and demand more to eat. Then she demands a snuggle with me, by which point we are ready to do anything to stop the crying. Then she goes to sleep.
This is actually an improvement over a few weeks ago, when she hadn't figured out yet she wanted to go to sleep that early. Then, she was screaming from when she got home until 8 or so. Then she was waking at 3 or so to stay up, demanding and angry.
Needless to say, Tony and I are often exhausted during the day. I feel for him, at work. He can't arrange his schedule to nap. I do---working all I can in the morning and early afternoon, and then collapsing for an hour or two.
I've realized lately that Janey has become more of a fan of routines, whether the routines are pleasant or not. For example, the other day I took out her barrettes. That is usually followed by brushing her hair, but I got distracted and it didn't that time. Janey hates her hair brushed, hates it very much. But after a few minutes went by and I hadn't brushed, she brought me the hairbrush and handed it to me. It was time to brush, like it or not, she seemed to be saying. So I did, and she screamed as usual. Then again I got distracted. She came over again after a bit, and said "Braid?" I hadn't fixed her hair, braided or ponytaled it or whatever, which she also doesn't like but which is the routine. And so I think the coming home, crying, sleeping early, waking in the night, has become the routine to follow. Last night in the car home, she even seemed to be planning it. She said, in a type of speech I've never heard from her before "I say 'I am ANGRY at you, Daddy!'" She never actually says that to him, just screams, but I guess she was planning the screaming.
So what do we do? History has showed we wait it out. That is all that seems to work. Christmas vacation is coming soon, and that will change the routines,and hopefully break this latest one. Until then, we are daytime zombies, evening objects of fury, middle of the night monitors. Life with Janey.
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