Janey started screaming tonight within seconds of getting off the school bus. Before she was even in the house, the screams had reached a level of intensity that is near impossible to describe. Imagine the loudest, most intense scream you've ever heard. Imagine a horror movie scream overdone by about 200%. Imagine the most intense noise you can imagine a person making. Then double any of those. That's Janey scream at its worse.
We got her in the house, and through her yells she asked for cheese, which we got for her. Within a short time, she seemed calmed down. Tony needed to go get William at work, and Janey wanted to go. I went along, just in case. We got her a Happy Meal. All seemed okay until about half way home. And then the screaming started again.
In a car, the scream is next to impossible to deal with. Tony wanted to roll down the windows, but I said we shouldn't. If someone in a neighborhood car heard her, they would be excused in thinking she was hurt in some horrible way. But with the windows up, the sound echoes around and makes driving hellish. However, you just want to get home as quickly as possible. It's never easy to decide what to do. We decided on ignoring the screams, as much as we could. For a minute that seemed to work. She calmed down enough to ask to hear "The Ant Go Marching" on the iPod. We handed it to her playing that, and she listened for maybe half a minute, and then resumed the screaming. I started my patter, partly to calm myself and Tony and William, telling her we soon would be home, we would lie down on the bed, I would sing to her if she wanted, she could rest, she could have a nice cold drink, everything would be okay....I talk in a sing-songy calm voice that often seems to quiet her. It did a little, enough to get us home.
At home, walking in, the screaming started again. I am thankful every day for having neighbors that understand Janey. I can't imagine living in a neighborhood like some I've heard of, with neighbors without sympathy. We got her inside, I lay down with her on the bed, I did my talking, and she calmed. She is now eating like crazy---often something she does after a scream, even when she has already eaten a lot, as was the case today.
The screaming is near unbearable. It drives us into a state that doesn't feel like living. It feels like surviving, just barely. Yesterday, Sunday, also featured a huge amount of screaming, and it drove me to email the special ed coordinator for Janey to see if I could change my mind and have her go to summer school, even though I previously had been quite convinced I wanted to try not having her go this summer. But I know if every day was a screaming day during the summer, I would not make it.
I have no cheerful conclusion here. I can say SOMETIMES it seems like the screaming spells are shorter, but they are more intense than ever. They drain every inch of enthusiasm I have, every bit of hopefulness and energy. I am sure they do the same for Janey. And yet, we can't prevent them. We can't predict them. We can't consistently help them. We can only live through them. That's as positive as I'm going to get tonight.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label iPod. Show all posts
Showing posts with label iPod. Show all posts
Monday, June 2, 2014
Tuesday, March 25, 2014
All In An Hour
This morning, the hour spent from when we left the house for school until when I dropped Janey at her room demonstrated so many of the joys and challenges of life with her that I thought I'd write about it.
Janey left the house for school with enthusiasm, as she almost always does. Transitions are not as hard for her as they are for a lot of kids with autism. She has a lot of energy, a lot of eagerness to get moving---we often joke how much she is like her father, and unlike the boys and me. She is restless. So she generally bounds down the steps, ready for the day to start.
In the car, we always listen to music from my iPod. Some days I ask her what she'd like to hear, and some days I just put it on random. If she doesn't like the songs, she never hesitates to let me know what she'd like to hear instead. Music prompts more communication in her than anything else. Today, I went with random, and she approved of the songs that came up. The first one was "Surfin' Safari" by the Beach Boys, and she liked it so much it almost was TOO much---she was frantically bouncing along and waving her arms and yelling in delight. I was worried we were about to cross the line into the over-excited state that sometimes turns dark fast. But luckily, the next song was a change of place, but one she liked too---"I'm Beginning to See the Light". She likes great tunes with a big band sound, and that fit the bill. We followed that with "I'm The Only Hell My Mama Ever Raised", by Johnny Paycheck, a favorite of mine that she liked fairly well, and a few songs later, we were at school. It was a good ride, as the morning almost always is. The car music time is probably my favorite time with Janey. We are doing something we both enjoy, and it's a wonderful kind of shared happiness.
Once we had parked at the school, I started my patter---my talk to get Janey ready for the day. The main emphasis today was that it wasn't an exercise day. Three days a week, Janey goes to a program called BOKS before school, a music and exercise program, and she loves it. Last week, on Friday when there was also no exercise, when she realized we were going in the "wrong" door, the door we go in for non-exercise days, she freaked out. So I wanted to prepare her today. I rambled about that, and my everyday spiel about how we don't cross the street until the walk sign comes on, and how we might have to wait for the bell to ring before class, and anything else I think will help her prepare for the day and keep her calm.
When we got in, we were early, so we did have to wait in the hall for the start of the day bell to ring. The drive to school takes anywhere from 15 minutes, on a truly record dream traffic and lights day, to an hour, when conditions hit a perfect storm of wrong. Today was a quicker ride, but it's impossible for me to time the drive so we always get there right at the same time, which Janey would prefer. At first, she seemed okay in the hall, but after a minute or two, she screamed---that piercing, earth-shattering scream that she has perfected. It always amazes me how little affected the other kids seem to be by her screaming. I guess they are used to it. It's more often adults that are around that look worried, and I don't blame them. It's quite a scream. After screaming, she started to sing the last song from the car, "Red River Valley" This seems like a calming technique she uses, so I sang along. I've long since lost any shyness I might have had about singing in public. After a bit, a girl from Janey's class came around, one of the very sweet girls who are so good to her, and that brought on a smile. The principal also stopped by Janey, and played a clapping game with her, and let Janey admire her shoes. I had a wistful feeling, although I'm trying not to think much about, but I gave in and thought how much I will miss the school if and when we move Janey.
Then the bell rang, and we were off to class. Janey held hands with her friend, and the friend sang a made-up song to Janey---"Janey is smiling, Janey is smiling, I like it when Janey is smiling!" It's amazing how kids instinctively get what works with Janey---singing and movement. Janey was so happy with her friend that I stood outside the door of her room and didn't even peek in as they walked in together. I felt feeling happy, overall, but also thinking a lot about that big scream, and wishing that Janey had an easier time learning in an inclusion environment. Overall, though, it was a good morning, and a fairly typical morning lately. Some parts of raising Janey are getting easier, gradually. We are figuring her out, and she is figuring us out. There are more hours that are overall good than tough, and that is hopeful.
Janey left the house for school with enthusiasm, as she almost always does. Transitions are not as hard for her as they are for a lot of kids with autism. She has a lot of energy, a lot of eagerness to get moving---we often joke how much she is like her father, and unlike the boys and me. She is restless. So she generally bounds down the steps, ready for the day to start.
In the car, we always listen to music from my iPod. Some days I ask her what she'd like to hear, and some days I just put it on random. If she doesn't like the songs, she never hesitates to let me know what she'd like to hear instead. Music prompts more communication in her than anything else. Today, I went with random, and she approved of the songs that came up. The first one was "Surfin' Safari" by the Beach Boys, and she liked it so much it almost was TOO much---she was frantically bouncing along and waving her arms and yelling in delight. I was worried we were about to cross the line into the over-excited state that sometimes turns dark fast. But luckily, the next song was a change of place, but one she liked too---"I'm Beginning to See the Light". She likes great tunes with a big band sound, and that fit the bill. We followed that with "I'm The Only Hell My Mama Ever Raised", by Johnny Paycheck, a favorite of mine that she liked fairly well, and a few songs later, we were at school. It was a good ride, as the morning almost always is. The car music time is probably my favorite time with Janey. We are doing something we both enjoy, and it's a wonderful kind of shared happiness.
Once we had parked at the school, I started my patter---my talk to get Janey ready for the day. The main emphasis today was that it wasn't an exercise day. Three days a week, Janey goes to a program called BOKS before school, a music and exercise program, and she loves it. Last week, on Friday when there was also no exercise, when she realized we were going in the "wrong" door, the door we go in for non-exercise days, she freaked out. So I wanted to prepare her today. I rambled about that, and my everyday spiel about how we don't cross the street until the walk sign comes on, and how we might have to wait for the bell to ring before class, and anything else I think will help her prepare for the day and keep her calm.
When we got in, we were early, so we did have to wait in the hall for the start of the day bell to ring. The drive to school takes anywhere from 15 minutes, on a truly record dream traffic and lights day, to an hour, when conditions hit a perfect storm of wrong. Today was a quicker ride, but it's impossible for me to time the drive so we always get there right at the same time, which Janey would prefer. At first, she seemed okay in the hall, but after a minute or two, she screamed---that piercing, earth-shattering scream that she has perfected. It always amazes me how little affected the other kids seem to be by her screaming. I guess they are used to it. It's more often adults that are around that look worried, and I don't blame them. It's quite a scream. After screaming, she started to sing the last song from the car, "Red River Valley" This seems like a calming technique she uses, so I sang along. I've long since lost any shyness I might have had about singing in public. After a bit, a girl from Janey's class came around, one of the very sweet girls who are so good to her, and that brought on a smile. The principal also stopped by Janey, and played a clapping game with her, and let Janey admire her shoes. I had a wistful feeling, although I'm trying not to think much about, but I gave in and thought how much I will miss the school if and when we move Janey.
Then the bell rang, and we were off to class. Janey held hands with her friend, and the friend sang a made-up song to Janey---"Janey is smiling, Janey is smiling, I like it when Janey is smiling!" It's amazing how kids instinctively get what works with Janey---singing and movement. Janey was so happy with her friend that I stood outside the door of her room and didn't even peek in as they walked in together. I felt feeling happy, overall, but also thinking a lot about that big scream, and wishing that Janey had an easier time learning in an inclusion environment. Overall, though, it was a good morning, and a fairly typical morning lately. Some parts of raising Janey are getting easier, gradually. We are figuring her out, and she is figuring us out. There are more hours that are overall good than tough, and that is hopeful.
Thursday, May 2, 2013
A Good Stretch
Janey is continuing her good stretch. There were the two very tough weeks, vacation week and the week after, but by the end of the week after, things were starting to improve, and this week has been a great one---Janey happy, few meltdowns, good potty use, better sleep, and of course the tea party I wrote about. She's done a few other very sweet things, especially a few nights ago when she was "reading" a book about a bunny aloud---using a voice that was obviously like a teacher voice reading to a class. She said a set phrase (something like "Look! The bunny has big ears!") for each page, but she said it in the sweetest way. That was great.
What makes a stretch good like this? And what makes a stretch bad? If I knew that, I'd do whatever I could to use the knowledge to make all the stretches good. There's a few things I can guess at. One is routine---vacations are bad, bad news, usually. Janey can handle weekends, and has a sense I think of what two days are, and knows when it should be Monday, as she doesn't like long weekends, but she can't handle vacations. I'm so glad she has summer school---before that, the summers were very tough. Another factor, I'm coming to see, is weather. Good weather and time outside are vital for Janey. She needs that---the time to feel the fresh air, to have room to move. And a third is how the rest of us are doing. Janey picks up hugely on our emotions. Vacation week was extra bad this time around because we all were upset over the bombing and all the aftereffects. If we are tense, although Janey doesn't understand what we are tense about, she picks up on our mood. She is extremely sensitive to tones of voice especially. She can understand them, if not the words.
Another things we've been doing is leaving an iPod on the base that has speakers at all times, so Janey can go over there and play songs from her playlist when she feels like it. This often calms her right down---she goes through the songs until she finds the one she needs to hear, and listens to it intently. Anything like that that we can do to give her some control over what she sees and hears seems to be very important. Now, no matter what she asks for on TV, I usually set it to Netflix streaming and hand her the remote, so she can pick what she wants. I think one of the big steps forward in the past 6 months or so is her learning to use technology like that a bit better. When it's hard for you to talk, being able to pick what you want in such a way must feel wonderful.
Even if we go with all the things that usually make Janey happy, I know there will be more tough, crying times. Life as Janey is probably a very frustrating thing to live, often. She is growing up and I think, I guess, becoming more aware of what she can't do, maybe not consciously, but at some level. I can picture her wanting things she has no way on earth of explaining, and that would make me cry too. It's why I need to try so hard to figure her out, and why I need to do all I can to give her ways to control her life.
What makes a stretch good like this? And what makes a stretch bad? If I knew that, I'd do whatever I could to use the knowledge to make all the stretches good. There's a few things I can guess at. One is routine---vacations are bad, bad news, usually. Janey can handle weekends, and has a sense I think of what two days are, and knows when it should be Monday, as she doesn't like long weekends, but she can't handle vacations. I'm so glad she has summer school---before that, the summers were very tough. Another factor, I'm coming to see, is weather. Good weather and time outside are vital for Janey. She needs that---the time to feel the fresh air, to have room to move. And a third is how the rest of us are doing. Janey picks up hugely on our emotions. Vacation week was extra bad this time around because we all were upset over the bombing and all the aftereffects. If we are tense, although Janey doesn't understand what we are tense about, she picks up on our mood. She is extremely sensitive to tones of voice especially. She can understand them, if not the words.
Another things we've been doing is leaving an iPod on the base that has speakers at all times, so Janey can go over there and play songs from her playlist when she feels like it. This often calms her right down---she goes through the songs until she finds the one she needs to hear, and listens to it intently. Anything like that that we can do to give her some control over what she sees and hears seems to be very important. Now, no matter what she asks for on TV, I usually set it to Netflix streaming and hand her the remote, so she can pick what she wants. I think one of the big steps forward in the past 6 months or so is her learning to use technology like that a bit better. When it's hard for you to talk, being able to pick what you want in such a way must feel wonderful.
Even if we go with all the things that usually make Janey happy, I know there will be more tough, crying times. Life as Janey is probably a very frustrating thing to live, often. She is growing up and I think, I guess, becoming more aware of what she can't do, maybe not consciously, but at some level. I can picture her wanting things she has no way on earth of explaining, and that would make me cry too. It's why I need to try so hard to figure her out, and why I need to do all I can to give her ways to control her life.
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