Today was the day I think of as the first day of summer---the first day of the first full week without school. I will be totally honest and say it's a day I dread. I've never, ever liked summer much. I don't like the heat or the lack of routine. With Janey, a summer day can feel endless. I am very grateful for summer school, which starts in two weeks. But today---it was a long day. Janey screamed a lot, cried a lot, just was very out of sorts. I felt out of ideas for the whole summer by nine in the morning.
Tonight, looking back on today, I realized something interesting. Janey knew what the day was. She knew it was the start of summer. I realized that because of what she asked for. First thing in the morning, she wanted to walk to the "ice cream store". That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat. We did that. A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?" She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine. Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?" Again, something we did very often last summer---walked to the train station to meet Tony as he came home. We haven't done it since last summer. Lastly, she then asked "Get Chinese rice?' Yet another thing from last summer---having Tony bring home Chinese food often.
I don't know how it made me feel that Janey remembered all that. It made me feel sort of guilty, that her summer memories are of such mundane things. It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken. It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.
I wish I could do more with Janey in the summer. But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger. There are splash parks around, but they are filled with toddlers and preschoolers. Janey is the size of an adult, and unpredictable around younger kids. There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school. Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't. The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly. So, much of the time, we stay home.
With that being said, I am hugely looking forward to later this week. We are taking a trip! Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on) I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools. We are going to keep everything as low key as possible. I still am not sure how it will go with Janey, but I hope well. She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!) So wish us luck in making some new summer memories for Janey. I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Showing posts with label library. Show all posts
Showing posts with label library. Show all posts
Monday, June 27, 2016
Wednesday, March 4, 2015
How Little Closed Doors Add Up
A while ago, I read this article about an IKEA playground---how a mother wasn't allowed to go in to the playground with her autistic 9 year old, so he wasn't able to play there. My reaction at first was "Well, that's not much of a big deal. That's their rules" Then I got thinking about it, more and more, over the last few weeks. Although that particular incident might not be a big deal, little closed doors like that one add up. They add up into a world where so many, many places are closed to Janey and others like her.
Most of these closed doors are not formally forbidden to Janey, of course. They are public places that legally, she's free to go. However, because of her behavior and because I don't want to intrude on other people and their rights to use public places, I just can't take Janey to them. For example, after our trip to the library, I realized that it was not a place for Janey, especially not with small children around. Trips to playgrounds or to splash parks are not really possible, because Janey is bigger than most of the kids there and prone to lashing out at the little ones. Restaurants are out of the question, for the most part. I would not ever attempt a plane, or a longer train or bus ride, because Janey would scream at many points during the ride. Church doesn't work---others can't quietly worship with a screamer in their midst, and Sunday schools or childcare aren't staffed by those able to handle Janey. We can't go to movies or plays or concerts, because others pay to be there and it's not fair if they can't hear what they paid to hear. If you start to think about this list, there are very few places we can take Janey.
I don't like the above list, but I can understand it. I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!) Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.
What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs. I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children. The program had a 1 to 4 ratio of caregivers to children. That made it, in essence, closed to Janey. She needs a 1 on 1 ratio. The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.
A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital. When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room. Right down the hall, there was a room chock filled with toys, books, games and the like. We were not allowed in that room. It was for the SICK children, the PHYSICALLY sick children, not the children like Janey. I even offered to take her there in the middle of the night, when other children would not be there. I would never, ever have gone there and put a little sick toddler in jeopardy. I only wanted Janey to be able to play there if no-one else was there. But that was not permitted.
Janey's old school, the inclusion school, was in so many ways a dream school. It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room. It was filled with people that had known Janey since she was born. I loved her school. And then---it too was closed to her. I understand the reasons---I understand the reasons for everything I've written about here. But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.
What can be done? I'm dreaming here. In many ways, maybe nothing can be done. Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is. However, I will dream. I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families. If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on. Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go. My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided. And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.
Life isn't fair. That old chestnut mothers tell their children is very true. Everyone has closed doors, and I accept that. But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle. There are no easy answers to this problem.
I don't like the above list, but I can understand it. I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!) Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.
What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs. I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children. The program had a 1 to 4 ratio of caregivers to children. That made it, in essence, closed to Janey. She needs a 1 on 1 ratio. The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.
A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital. When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room. Right down the hall, there was a room chock filled with toys, books, games and the like. We were not allowed in that room. It was for the SICK children, the PHYSICALLY sick children, not the children like Janey. I even offered to take her there in the middle of the night, when other children would not be there. I would never, ever have gone there and put a little sick toddler in jeopardy. I only wanted Janey to be able to play there if no-one else was there. But that was not permitted.
Janey's old school, the inclusion school, was in so many ways a dream school. It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room. It was filled with people that had known Janey since she was born. I loved her school. And then---it too was closed to her. I understand the reasons---I understand the reasons for everything I've written about here. But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.
What can be done? I'm dreaming here. In many ways, maybe nothing can be done. Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is. However, I will dream. I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families. If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on. Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go. My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided. And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.
Life isn't fair. That old chestnut mothers tell their children is very true. Everyone has closed doors, and I accept that. But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle. There are no easy answers to this problem.
Wednesday, February 4, 2015
A trip to the library
As many of you who have joined the Facebook page "Rarer in Girls", which is a companion to this blog, already know (and as an aside, if you would like to join, you are welcome, if you'd like breaking Janey news but much more importantly, some great discussions with terrific people!), Janey did something very cool yesterday. She found my pocketbook, took out my wallet and located my library card, which she brought to me and said "Want to go to the library?" That was a surprise to me on many fronts. She had never before expressed an interest in the library, but more, I had NO idea she knew what a library card was or what mine looked like. I was truly stunned. And happy---I love the library! So I told her we would go after school today.
However, that plan got moved up in the day, due to Janey's bus never showing up. This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus. We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!) And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again. I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)
So---we went to the library around noon. Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her. It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.
After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room. I kind of knew that Janey's picture of the library was not accurate. I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun. She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch. But I figured we'd see what she thought.
Janey very briefly looked at the picture book section. I told her she could pick out any books she wanted to take home, but she had no interest in that. Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms. When I saw that, I screamed "STOP!" I didn't use a library voice. Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code. I felt like saying to them "I was once you. I used only gentle tones. I explained everything carefully to my children. I would have sat down with you and made friends and arranged a playgroup. However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms" Instead I just said "She is autistic and a little unpredictable" They all smiled an inclusive smile and we went on our way.
The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books. She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf. Then she went back to the picture book section and I again said she could pick a book. Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist. I hissed out "LET GO NOW" and she didn't, but I got out of the grip. I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go! We'll try again another time!" The librarian was very sweet and offered Janey a sticker, which she took. I checked out our books and we blew that joint as quickly as possible.
So...what's the lesson here? Partly, that I probably should not have attempted the library alone with Janey. She easily could have hit the baby or seriously hurt me. But in a way, I'm still glad I did. I need to get Janey out there, to have her be part of the community as much as I can. It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.
The whole deal does illustrate why giving Janey a "normal" life is so hard. There is so, so little I can do safely with her any more. It is why inclusion, in so many meanings of the word, is challenged by a child like Janey. And it's why parents like myself, and there are lots of us, so very much need help.
However, that plan got moved up in the day, due to Janey's bus never showing up. This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus. We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!) And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again. I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)So---we went to the library around noon. Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her. It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room. I kind of knew that Janey's picture of the library was not accurate. I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun. She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch. But I figured we'd see what she thought.
Janey very briefly looked at the picture book section. I told her she could pick out any books she wanted to take home, but she had no interest in that. Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms. When I saw that, I screamed "STOP!" I didn't use a library voice. Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code. I felt like saying to them "I was once you. I used only gentle tones. I explained everything carefully to my children. I would have sat down with you and made friends and arranged a playgroup. However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms" Instead I just said "She is autistic and a little unpredictable" They all smiled an inclusive smile and we went on our way.
The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books. She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf. Then she went back to the picture book section and I again said she could pick a book. Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist. I hissed out "LET GO NOW" and she didn't, but I got out of the grip. I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go! We'll try again another time!" The librarian was very sweet and offered Janey a sticker, which she took. I checked out our books and we blew that joint as quickly as possible.
So...what's the lesson here? Partly, that I probably should not have attempted the library alone with Janey. She easily could have hit the baby or seriously hurt me. But in a way, I'm still glad I did. I need to get Janey out there, to have her be part of the community as much as I can. It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.
The whole deal does illustrate why giving Janey a "normal" life is so hard. There is so, so little I can do safely with her any more. It is why inclusion, in so many meanings of the word, is challenged by a child like Janey. And it's why parents like myself, and there are lots of us, so very much need help.
Friday, August 2, 2013
Small Triumphs
I won't lie---the last week has been a tough one. Janey has been crying a great deal, and has starting with the biting of her arm again, and added a new fun one in---scratching herself badly. I cut her nails short, and at summertime school, they are keeping a jacket on her all the time for the arm biting (they have AC) but the crying---it's tough. We really don't know what's up. It's probably just one of those swings Janey has at times---a bad few weeks, a good few weeks, a great few weeks, a hellish few weeks---and we are never sure why.
But today, there were a few small triumphs, in the middle of a day of screaming and crying.
The first was a good library trip. Last time at the library, which I wrote about, Janey had a fit. Today, after picking her up at school, I told her right away we were going to the library, but I was going to just get books at the desk this time, no walking into the stacks. I also told her if she could be a good girl in the library, we'd get a treat at the CVS, whatever she wanted (the CVS is next to the library). Janey cried most of the way to the library, so I wasn't hopeful. But once we got in there, she truly held it together and didn't cry at all, and stayed with me and was perfect. So off to the CVS we went. I was thinking that one nice thing about Janey vs. "normal" 8 year olds is that I CAN tell her she can get whatever she wants at the store, because she won't decide that what she wants is all the toys, or a hugely expensive odd thing like an "as seen on TV" wonder knife or something. She walked right in to the store to the area where the chips are, and for the first time I remember, didn't immediately grab the thing she wanted. She stood and looked at all the chips for quite a while, and then picked a bag of sour cream and onion ones. I felt like she really understood the whole deal---the behaving at the library, the treat and even the picking out of the treat. It felt nice.
When we got home, I had some packing of books I'd sold that I very much needed to do. I put on The Goofy Movie for Janey, her current favorite, but after watching it a bit, I turned to see she was out of sight. I was in the middle of taping something, and actually finished the taping---a risky 20 seconds or so---and then went to find Janey. I found her in the bathroom, and I started looking right away for her usual mischief---toilet paper all over, toothpaste squeezed out, her trying to take a bath with clothes on---but inside, she saw she was wiping herself, after very, very successfully using the big girl potty for what sometimes becomes a huge mess. I was thrilled. She has never used the big potty for that on her own before---we've caught her about to go a few times and taken her there, but this was all her. She got a big high five (after hand washing).
Even though most every moment not described here consisted of crying, I decided to take a risk and go to the post office with her, as I had things that very much needed mailing. I told her that if she could be good at the post office, we'd get a doughnut. That was probably too much for today. She cried most of the time at the post office, even though it was very quick there and the clerk knows her well and was very sweet to her. When we got out, she looked at me with tears in her eyes and said "David Donald Do? Dreamed a dozen donuts and a duck dog too?" which is a quote from Dr. Seuss's ABCs. I got her the doughnut, mostly for understanding what she was supposed to be doing and what the reward was, which is a step forward.
I have been trying, in one of my many tries at a new way of thinking or a new strategy, to see the crying as just a background thing---not something that has to be fixed or dealt with right away. A few times today, I told Janey to try hard to calm down, and then walked away to give her a minute or two to do so. That goes against so much of what is my instinct, but it seemed like she was trying. I praised her a lot for even a minute of non-crying.
Maybe I'm able to see the good in today because it's the weekend, Tony is home for a few days to help, and Janey is going to the respite house for 6 hours tomorrow. I'm going to keep trying to pick out the good from even the tougher days.
But today, there were a few small triumphs, in the middle of a day of screaming and crying.
The first was a good library trip. Last time at the library, which I wrote about, Janey had a fit. Today, after picking her up at school, I told her right away we were going to the library, but I was going to just get books at the desk this time, no walking into the stacks. I also told her if she could be a good girl in the library, we'd get a treat at the CVS, whatever she wanted (the CVS is next to the library). Janey cried most of the way to the library, so I wasn't hopeful. But once we got in there, she truly held it together and didn't cry at all, and stayed with me and was perfect. So off to the CVS we went. I was thinking that one nice thing about Janey vs. "normal" 8 year olds is that I CAN tell her she can get whatever she wants at the store, because she won't decide that what she wants is all the toys, or a hugely expensive odd thing like an "as seen on TV" wonder knife or something. She walked right in to the store to the area where the chips are, and for the first time I remember, didn't immediately grab the thing she wanted. She stood and looked at all the chips for quite a while, and then picked a bag of sour cream and onion ones. I felt like she really understood the whole deal---the behaving at the library, the treat and even the picking out of the treat. It felt nice.
When we got home, I had some packing of books I'd sold that I very much needed to do. I put on The Goofy Movie for Janey, her current favorite, but after watching it a bit, I turned to see she was out of sight. I was in the middle of taping something, and actually finished the taping---a risky 20 seconds or so---and then went to find Janey. I found her in the bathroom, and I started looking right away for her usual mischief---toilet paper all over, toothpaste squeezed out, her trying to take a bath with clothes on---but inside, she saw she was wiping herself, after very, very successfully using the big girl potty for what sometimes becomes a huge mess. I was thrilled. She has never used the big potty for that on her own before---we've caught her about to go a few times and taken her there, but this was all her. She got a big high five (after hand washing).
Even though most every moment not described here consisted of crying, I decided to take a risk and go to the post office with her, as I had things that very much needed mailing. I told her that if she could be good at the post office, we'd get a doughnut. That was probably too much for today. She cried most of the time at the post office, even though it was very quick there and the clerk knows her well and was very sweet to her. When we got out, she looked at me with tears in her eyes and said "David Donald Do? Dreamed a dozen donuts and a duck dog too?" which is a quote from Dr. Seuss's ABCs. I got her the doughnut, mostly for understanding what she was supposed to be doing and what the reward was, which is a step forward.
I have been trying, in one of my many tries at a new way of thinking or a new strategy, to see the crying as just a background thing---not something that has to be fixed or dealt with right away. A few times today, I told Janey to try hard to calm down, and then walked away to give her a minute or two to do so. That goes against so much of what is my instinct, but it seemed like she was trying. I praised her a lot for even a minute of non-crying.
Maybe I'm able to see the good in today because it's the weekend, Tony is home for a few days to help, and Janey is going to the respite house for 6 hours tomorrow. I'm going to keep trying to pick out the good from even the tougher days.
Wednesday, July 24, 2013
The Storms and the Calm
Janey is having a rough night tonight. Every half hour or so, she is screaming, that deafening scream that is fairly new, that is the alternative to the daylong crying it seems to have mostly replaced. The crying was sad, but the screaming is angry, furious, and we are never sure why.
Much of the summer has been terrific so far. Janey is talking better than ever, although we hold our breath about that, because her talking ebbs and flows. But she is saying many more complete sentences---where she used to say something like "purple!" now she'll say "I want some purple ice cream, please!" or if I say "Maybe we'll go to the grocery store after school" she'll say "After school we might go to the store!" turning what I said around a little. These kinds of sentences are still rare, but not shockingly rare any more, at least over the last month. The other day, Tony said "We'll have to try to find Uncle Pino at the store" and Janey said "I know where she is!" mixing up the pronoun, but delightfully responsive! This morning, she looked around for William, who is in Maine for a few days, and said "Worms! Where are you?" (Worms being a nickname I sometimes call William) It was great, both that she noticed he was gone and that she verbally expressed that.
However, the storms come on suddenly and severely. We can be having a perfectly good day, and suddenly, Janey screams, bites her arm and gets hysterical. It's scary. It was like what Mother Nature did yesterday as I was driving to pick up Janey at school---an amazing heavy rain came on and within minutes, the streets were flooded and I was fearing for my life. An hour later, there was barely evidence anything had happened. That's Janey.
I am working on figuring out a cause for these storms. Sometimes, I have a good idea. After school today, I took Janey into the library. We have a usual routine there---we pick up the books I have held at the desk. I order books online to come to my branch library, and Janey knows that routine. This time, however, there was a book I wanted that I knew was in the stack there, so Janey and I walked into the dark and a tiny bit creepy stacks to get it. She was okay at first, but when we got back to the desk to then get the held books, she lost it. I had messed everything up. She screamed her piercing scream, and I was glad that we were in a place we've been often before, so at least the workers, if not particularly sympathetic, at least knew Janey and had seen her in such action a few times before. I did my patter, saying to Janey "We did something different, didn't we? Mama should have told you ahead of time we were going to do that" and Janey screamed "Mama SHOULD HAVE TOLD YOU!" I am not sure if that was echolalia or her true feelings, but I should have. Other times, though, I have no idea what caused the storm. I try to work like a detective, and sometimes do come up with a theory. I've figured out any mention of dogs, even if the dogs aren't shown, sets her off. She is truly terrified of them, and hearing a distant bark, one I might not even much notice, can be a problem. Sometimes, though, even my best guesses and detection come up with nothing. I figure Janey is thinking about or remembering something upsetting at those times, or has something stuck in her head, or has a pain someplace, or who knows what.
I feel like we are in a transitional period with Janey. I am seeing her mature a lot this summer, but maturing doesn't necessarily being getting more mainstream. It means she is becoming more aware of the world, and that might be a very tough thing for a girl that sees she doesn't quite fit in it, a girl with fears and thoughts and routines and ideas that are hard for her to express. I think we are in for a lot of flash floods, hopefully often followed by the brightness of a world after the storm.
Much of the summer has been terrific so far. Janey is talking better than ever, although we hold our breath about that, because her talking ebbs and flows. But she is saying many more complete sentences---where she used to say something like "purple!" now she'll say "I want some purple ice cream, please!" or if I say "Maybe we'll go to the grocery store after school" she'll say "After school we might go to the store!" turning what I said around a little. These kinds of sentences are still rare, but not shockingly rare any more, at least over the last month. The other day, Tony said "We'll have to try to find Uncle Pino at the store" and Janey said "I know where she is!" mixing up the pronoun, but delightfully responsive! This morning, she looked around for William, who is in Maine for a few days, and said "Worms! Where are you?" (Worms being a nickname I sometimes call William) It was great, both that she noticed he was gone and that she verbally expressed that.
However, the storms come on suddenly and severely. We can be having a perfectly good day, and suddenly, Janey screams, bites her arm and gets hysterical. It's scary. It was like what Mother Nature did yesterday as I was driving to pick up Janey at school---an amazing heavy rain came on and within minutes, the streets were flooded and I was fearing for my life. An hour later, there was barely evidence anything had happened. That's Janey.
I am working on figuring out a cause for these storms. Sometimes, I have a good idea. After school today, I took Janey into the library. We have a usual routine there---we pick up the books I have held at the desk. I order books online to come to my branch library, and Janey knows that routine. This time, however, there was a book I wanted that I knew was in the stack there, so Janey and I walked into the dark and a tiny bit creepy stacks to get it. She was okay at first, but when we got back to the desk to then get the held books, she lost it. I had messed everything up. She screamed her piercing scream, and I was glad that we were in a place we've been often before, so at least the workers, if not particularly sympathetic, at least knew Janey and had seen her in such action a few times before. I did my patter, saying to Janey "We did something different, didn't we? Mama should have told you ahead of time we were going to do that" and Janey screamed "Mama SHOULD HAVE TOLD YOU!" I am not sure if that was echolalia or her true feelings, but I should have. Other times, though, I have no idea what caused the storm. I try to work like a detective, and sometimes do come up with a theory. I've figured out any mention of dogs, even if the dogs aren't shown, sets her off. She is truly terrified of them, and hearing a distant bark, one I might not even much notice, can be a problem. Sometimes, though, even my best guesses and detection come up with nothing. I figure Janey is thinking about or remembering something upsetting at those times, or has something stuck in her head, or has a pain someplace, or who knows what.
I feel like we are in a transitional period with Janey. I am seeing her mature a lot this summer, but maturing doesn't necessarily being getting more mainstream. It means she is becoming more aware of the world, and that might be a very tough thing for a girl that sees she doesn't quite fit in it, a girl with fears and thoughts and routines and ideas that are hard for her to express. I think we are in for a lot of flash floods, hopefully often followed by the brightness of a world after the storm.
Wednesday, January 2, 2013
My imaginary trip into Janey's mind
I try all the time to figure out what Janey's mind must be thinking, to get a better idea what it would feel like to be her. Lately, I've been using analogies of a library or a computer to try to get her unique way of thinking.
The library first----I picture myself walking into the library that is Janey's mind. The first thing I notice is how many books there are. There are books with lines from pretty much every video she's seen, every song she's heard, every conversation she's been present for. There are books all over. So, I try to look up a subject I want to read more about, and notice that there is next to no cataloging system. No computer guides, no card catalogs, no librarians at the desk to guide me. There is maybe a very general guide up on the wall to the rough area the books I might need are, but that's all. So I wander at random, hoping to find what I need. Frustrated, I mutter out loud "Where's the books about kings?" Suddenly, a pile of books appear before me. They all contain information on kings---there's one about We Three Kings, one about King Friday, one about the King of Joke-a-Lot, one about Burger King. None of them might have what I'm exactly looking for, but I can recite a lot of lyrics, or suddenly get hungry for onion rings, or request a video out of the blue. While I'm trying to figure out what to do next, there's a noise I don't expect. Maybe it's a fire alarm, or a truck outside, or a crackling paper far away, but I hear it, and it distracts me from any more looking. It's very distressing, not being able to find what I want, and I give up and cry.
Or the computer. Janey's mind is a computer with a huge hard drive. It's crammed full of hard info---as much raw information as any 8 year old would have, and more than many. However, there are several problems. The processing speed of the computer, the ability to connect and manipulate and interpret the data, is hugely slow. It's like a 286 motherboard with a 1TB hard drive. There is also only the most minimal of search engines. It works like the old ads for Bing search used to, in making fun of Google---you search for "cat", and get all cat information from anywhere "The Cat in the Hat!" "Cats at my house!" "The Cat that Looked at the Queen" "Cattails!" It's also very hard to add certain kinds of information to the computer. It has trouble storing pictures, much preferring audio files. The greatest strength of this computer, though, is its music files. They play more smoothly than almost anything else. The computer freezes up often when you try to do too much at once, and needs rebooting. And programs that work one day might not the next, depending on what subroutines are running. The computer is prone to viruses---if you type in commands in a harsh tone, or let it run too long, or vary the power, it just won't work.
These are guesses. I don't know if either of these analogies are anything like Janey's mind, but I think they might be. I use them to try to figure out how best to help Janey. The crucial thing both mind models need is a better working search engine. I need to figure out how to let Janey access what she knows. I need also to minimize noise or viruses or anything that will slow down her systems. I need to let her make use of the areas that she has in excess---to help her use her auditory memory and musical memory to help find information, and I need to find a way to help her increase her visual skills. I need to try, slowly and gently, to do some construction and organizing at the library or some upgrading with the computer, to help her still be the same Janey I love, but to build on what she already has.
The library first----I picture myself walking into the library that is Janey's mind. The first thing I notice is how many books there are. There are books with lines from pretty much every video she's seen, every song she's heard, every conversation she's been present for. There are books all over. So, I try to look up a subject I want to read more about, and notice that there is next to no cataloging system. No computer guides, no card catalogs, no librarians at the desk to guide me. There is maybe a very general guide up on the wall to the rough area the books I might need are, but that's all. So I wander at random, hoping to find what I need. Frustrated, I mutter out loud "Where's the books about kings?" Suddenly, a pile of books appear before me. They all contain information on kings---there's one about We Three Kings, one about King Friday, one about the King of Joke-a-Lot, one about Burger King. None of them might have what I'm exactly looking for, but I can recite a lot of lyrics, or suddenly get hungry for onion rings, or request a video out of the blue. While I'm trying to figure out what to do next, there's a noise I don't expect. Maybe it's a fire alarm, or a truck outside, or a crackling paper far away, but I hear it, and it distracts me from any more looking. It's very distressing, not being able to find what I want, and I give up and cry.
Or the computer. Janey's mind is a computer with a huge hard drive. It's crammed full of hard info---as much raw information as any 8 year old would have, and more than many. However, there are several problems. The processing speed of the computer, the ability to connect and manipulate and interpret the data, is hugely slow. It's like a 286 motherboard with a 1TB hard drive. There is also only the most minimal of search engines. It works like the old ads for Bing search used to, in making fun of Google---you search for "cat", and get all cat information from anywhere "The Cat in the Hat!" "Cats at my house!" "The Cat that Looked at the Queen" "Cattails!" It's also very hard to add certain kinds of information to the computer. It has trouble storing pictures, much preferring audio files. The greatest strength of this computer, though, is its music files. They play more smoothly than almost anything else. The computer freezes up often when you try to do too much at once, and needs rebooting. And programs that work one day might not the next, depending on what subroutines are running. The computer is prone to viruses---if you type in commands in a harsh tone, or let it run too long, or vary the power, it just won't work.
These are guesses. I don't know if either of these analogies are anything like Janey's mind, but I think they might be. I use them to try to figure out how best to help Janey. The crucial thing both mind models need is a better working search engine. I need to figure out how to let Janey access what she knows. I need also to minimize noise or viruses or anything that will slow down her systems. I need to let her make use of the areas that she has in excess---to help her use her auditory memory and musical memory to help find information, and I need to find a way to help her increase her visual skills. I need to try, slowly and gently, to do some construction and organizing at the library or some upgrading with the computer, to help her still be the same Janey I love, but to build on what she already has.
Wednesday, September 10, 2008
School and talking
The start of the school year is going incredibly smoothly for Janey---it's making me knock on wood and hold my breath all the time. She is eager to get into the room and happy when she comes out. Today she was so happy she was almost giddy. I haven't heard much from her teachers yet, and no news is good news I usually feel.
Her talking was interesting today too. At one point she said something along the lines of "I have 20 dollars. Go to McDonalds, chicken nuggets and fries" I guess she has heard us enough times tell the boys they can get McDonalds if they have their own money! Tonight she was patting the cat Schemer and said "I love Schemer dog. Don't die"
The mornings are long sometimes before she goes to school. I get frustrated as almost any activity I try with her gets her crying and upset. I feel guilty if I don't try to do anything with her, but she's happier if I don't. I tried a big sticker project, and reading books, and playing Wonder Pets and lots more, but she either just likes to walk around the house talking to herself or she likes hanging off me crying or laughing. I should go someplace in the car each day, just to kill the time, but I feel like that's not too interactive. I should take her to things like library times, but she runs off and screams and ruins it for every other kid. Should I just not care if she does this, as she has a right to be there too? I can't do that. I don't think she's getting much from things when she is running and crying, and I sure aren't, and why should the other kids not get anything from it either? It is so hard to know what's best to do. I feel guilty day and night about everything.
Her talking was interesting today too. At one point she said something along the lines of "I have 20 dollars. Go to McDonalds, chicken nuggets and fries" I guess she has heard us enough times tell the boys they can get McDonalds if they have their own money! Tonight she was patting the cat Schemer and said "I love Schemer dog. Don't die"
The mornings are long sometimes before she goes to school. I get frustrated as almost any activity I try with her gets her crying and upset. I feel guilty if I don't try to do anything with her, but she's happier if I don't. I tried a big sticker project, and reading books, and playing Wonder Pets and lots more, but she either just likes to walk around the house talking to herself or she likes hanging off me crying or laughing. I should go someplace in the car each day, just to kill the time, but I feel like that's not too interactive. I should take her to things like library times, but she runs off and screams and ruins it for every other kid. Should I just not care if she does this, as she has a right to be there too? I can't do that. I don't think she's getting much from things when she is running and crying, and I sure aren't, and why should the other kids not get anything from it either? It is so hard to know what's best to do. I feel guilty day and night about everything.
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