It's very, very hard to explain Janey's talking to anyone who hasn't heard her, and even people who have heard her, but only occasionally or in certain settings, don't really get a complete view of how she talks. I tried today to write down everything she said. I missed a lot, but I captured a bit. Her speech is divided into I'd say 4 categories. One is actually talking, to ask for something or give or get information (mostly the asking). One is direct echolalia, something repeated right after she hears it, usually exactly, but sometimes a little altered. One is delayed echolalia, a phrase or saying from a video or something she's heard someone say a lot. And the fourth isn't really talking, but spontaneous singing. The fourth could be considered part of the delayed echolalia, but it seems different to me. Here's some examples---
First, the actual talking
I want you to get me soda
I want tuna
I want mayonnaise
Oatmeal.
I want pizza.
That's it, for a whole day. I'm sure there must have been a little more, but not much. You can see it's all food requests. There weren't reversed pronouns today, and it was mostly full sentences, but not exactly a huge amount of conversation.
Next, the direct echolalia
Do you remember that now?
Oh, Janey, chimpanzee!
Go Patriots! (the Patriots play a big game today!)
But you don't open the oven. That's too naughty.
Mostly just repeated, but the oven one had the "that's too naughty" added on by her.
Now, the big one---delayed echolalia
A storybook? And you call that a present? (from Beauty and the Beast Enchanted Christmas)
Well, I'm not going anywhere. I'm exhausted. It's best that I say here, in case they come back (Kipper)
Who is eating my cake? It's Arnold! (Kipper again)
Don't hit! Don't hit her! That's very naughty! (I'm not sure when I said that, but I am pretty sure I did)
Do I look weird? Not weird at all. But you look kind of different, in a cool way (Yo Gabba Gabba)
Do you happen to know whose bowl you're eating? MINE! (from a sing-a-long video, spoken part)
So mostly videos, with the no hitting thrown in. That could be a video too, I'm thinking, but I don't recognize it.
Then the singing
"Stand by Me"
"Waltzing Matilda"
"There's a Hole in the Bucket"
"You're a Grand Old Flag"
"Eensy Weensy Spider"
The singing is usually the whole first verse of a song, sometimes more, right in tune and nice and loud.
So....some days Janey talks a lot, but she never says a lot that's actually communication. Once in a while, the delayed echolalia could be cut and paste type talking, saying something she wants to say. That might have been the case with the "I'm exhausted" today, or the hitting being naughty, but usually, it seems more like random playbacks of phrases stored in her head.
There's a lot that Janey's speech almost never has. She almost never answers questions, at least without a ton of prompting, and then they are only fact type questions like "What's your name?" or "What shape is that?" She almost never just talks about things, like commenting on the cats, or snow, or what she is doing. She never has conversational volleys, where we talk back and forth. If you took away the singing and different types of echolalia, her talking would basically be her asking for food, videos and once in a while, things like a bath or crayons.
I've read lots of times that it's promising when autistic kids have echolalia, that it's a good sign that they will speech more in the future. But Janey is eight, and I don't think she's improving. If I read back on old blog entries here, I think it could be argued she's talking real language less overall. It's frustrating. I wish there were more literature out there about echolalia. Why do some kids with autism have it and some not? Does it have a meaning? How should I respond to it? I'd love a book about echolalia, or at least a lengthy article! More than anything, I'd like a book specifically about Janey. I've said that before. The handbook to her, her speaking and rest of her, doesn't exist. Or else I'm writing it, and I don't feel up to it, some days.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Sunday, January 20, 2013
Friday, January 18, 2013
Growing out of autism?
This article is one of many that have been in the news lately about a study showing that some children grow out of autism, lose the diagnosis. It's a study in the early stages, as they haven't yet talked about what was done differently, if anything, with those children, or some ways the children might have been different from other autistic kids from the start. But it certainly caught my interest. In some ways, my life is a laboratory for that study. My older son was originally diagnosed as autistic, and now is in no way autistic. And Janey, of course, is severely autistic and I am pretty sure always will be.
You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this. The study only accepted diagnoses from experts in autism. Both my kids were diagnosed by fairly well known leaders in the field, so that counts. But there are huge difference between them, and were from the start.
The big, big, big difference is cognitive ability. Janey is intellectually disabled. There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed. She didn't walk until she was 2. Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids. She even was/is delayed in physical ways---she didn't get teeth until after her first birthday. William was never cognitively delayed. He spoke at an incredibly early age, and he was obviously quite a bright kid from the start. I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.
Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't. It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey. We may have used that to react differently to him. I don't think so, but it's possible. Janey blindsided us at age 3. She has early intervention, but it was only for her walking delays. It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.
The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert. I think he had a collection of traits that made him appear autistic. Part of that is just personality. It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz. He's a hard worker, and he gets very involved in what he loves doing. That showed up early. He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things! And as you grow up, having the ability to get very into things isn't bad. It is what makes experts, professors. It's probably what has resulted in most all great inventions and steps forward in history. I think autism is something that shouldn't in some ways be diagnosed until around age 7. Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment. They should. But do they have to be called autism that early? By the time a child is 7 or 8, it will be obvious who is autistic and who isn't. Janey is autistic. There is zero doubt there. William isn't. There is zero doubt there too.
The other message I want to put out there is that I didn't do anything magical to make William not autistic. I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that. I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life. He was the one that changed. I didn't make him change. That sends me a message about Janey. I am doing the best I can for her, but I don't think there is some magical key that will unlock her.
I look forward very much to following this study as more information comes out.
You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this. The study only accepted diagnoses from experts in autism. Both my kids were diagnosed by fairly well known leaders in the field, so that counts. But there are huge difference between them, and were from the start.
The big, big, big difference is cognitive ability. Janey is intellectually disabled. There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed. She didn't walk until she was 2. Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids. She even was/is delayed in physical ways---she didn't get teeth until after her first birthday. William was never cognitively delayed. He spoke at an incredibly early age, and he was obviously quite a bright kid from the start. I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.
Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't. It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey. We may have used that to react differently to him. I don't think so, but it's possible. Janey blindsided us at age 3. She has early intervention, but it was only for her walking delays. It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.
The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert. I think he had a collection of traits that made him appear autistic. Part of that is just personality. It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz. He's a hard worker, and he gets very involved in what he loves doing. That showed up early. He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things! And as you grow up, having the ability to get very into things isn't bad. It is what makes experts, professors. It's probably what has resulted in most all great inventions and steps forward in history. I think autism is something that shouldn't in some ways be diagnosed until around age 7. Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment. They should. But do they have to be called autism that early? By the time a child is 7 or 8, it will be obvious who is autistic and who isn't. Janey is autistic. There is zero doubt there. William isn't. There is zero doubt there too.
The other message I want to put out there is that I didn't do anything magical to make William not autistic. I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that. I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life. He was the one that changed. I didn't make him change. That sends me a message about Janey. I am doing the best I can for her, but I don't think there is some magical key that will unlock her.
I look forward very much to following this study as more information comes out.
Thursday, January 17, 2013
Hitting A Wall
Yesterday, I hit a mental wall. I took Janey to school, came home, did the usual bit---housework, on-line work, packing things, etc. It got back to be about 2 in the afternoon, and I started thinking about picking up Janey at school. It was rainy/snowy and messy out. I was bone tired. Most of all, I was thinking about the day before, with the CVS screaming incident and Janey going quite frankly insane in the car. And I felt a feeling that I've felt a few times before with being her mother. I was hitting the wall. I could not picture going out to drive in the slush and dark, picking her up and not knowing if it was going to be another ride through Hades. I felt like I just literally could barely move. I sat there, feeling shaky and dizzy. And then I called Tony, because I am a very lucky wife. I told him how I felt, and thankfully, his work is a little flexible, although always intense. He said he could come home an hour early to get the car and go get Janey, if the next day he could go into work 2 hours early, and I said fine. Then I collapsed into bed, and just lay there, trying to work up the energy to keep the day going.
I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation. That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler. I am closer to 50 than 40. Most days, I push through it, because that's what all mothers do. You don't really have a choice. And it's your responsibility. I chose to have Janey, and she is my child to take care of. But some days, I hit that wall. I wonder if I can do it. It's a useless wonder. I am going to do it, whether I can or not.
But I think about what used to happen, in the past. In the bad old days, which I in no way want to go back to. But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people. Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time. I would do anything, including give up my own life, to have Janey not live a life like that. I am eternally glad we live today and not then. But I do think, like many things, the pendulum has swung in the totally opposite direction. Now, so so many parents are routinely doing what was previously considered not possible. They are caring for disabled children at home, and in many cases, they are getting almost no help doing so. I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program. But I know far from everyone has that. And even with that, I am exhausted. Tony is exhausted. The boys are exhausted. We can never take our eyes off Janey. Never. We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down. We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat. And we are all tired. Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.
I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families. Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging. And mental health care absolutely needs to be as available as physical health care. No parent should have to beg to have someone help them handle their child when they are in crisis.
For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again. There's no getting around that, and it's scary.
I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation. That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler. I am closer to 50 than 40. Most days, I push through it, because that's what all mothers do. You don't really have a choice. And it's your responsibility. I chose to have Janey, and she is my child to take care of. But some days, I hit that wall. I wonder if I can do it. It's a useless wonder. I am going to do it, whether I can or not.
But I think about what used to happen, in the past. In the bad old days, which I in no way want to go back to. But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people. Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time. I would do anything, including give up my own life, to have Janey not live a life like that. I am eternally glad we live today and not then. But I do think, like many things, the pendulum has swung in the totally opposite direction. Now, so so many parents are routinely doing what was previously considered not possible. They are caring for disabled children at home, and in many cases, they are getting almost no help doing so. I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program. But I know far from everyone has that. And even with that, I am exhausted. Tony is exhausted. The boys are exhausted. We can never take our eyes off Janey. Never. We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down. We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat. And we are all tired. Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.
I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families. Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging. And mental health care absolutely needs to be as available as physical health care. No parent should have to beg to have someone help them handle their child when they are in crisis.
For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again. There's no getting around that, and it's scary.
Tuesday, January 15, 2013
CVS Hell
Janey is happy right now, watching TV and cheerful. Which is amazing, considering our ride home from afterschool today. The great high school student that often is with Janey at afterschool reported she had a good day, but started crying just before I got there, which is not uncommon. I think she knows when it's around time for me to be there, and if I'm not there right when her mind tells her I should be, she freaks out. She was crying hysterically all the way to the car. I told her I had chips for her, which made her settle for a minute, until she saw they were cheapo Lays BBQ chips, not the Pringles Salt and Vinegar that I am SUPPOSED to have for the ride home. She pushed the chips away and screamed "CHIPS PLEASE!" It wasn't really the chips, I know, but that didn't help. She screamed the first 10 minutes in the car at an unbelievable volume and in an unbelievable tone. I was just barely able to drive. She stayed in her seat belt, but writhed around so much I thought of a new fear, that she could unbuckle and jump into the front and cause an accident. I made a decision---we would stop at the CVS for the chips she wanted.
I tried to use it as a bribe. I told Janey "They don't allow loud screaming at the CVS. You need to take a deep breath and calm down if you want to get chips" She tried. She really tried, but there was just no calming down. She was too far gone. I drove into the CVS parking lot and sat there a minute, trying to decide what to do. Janey would cause a scene. There was no avoiding it. I hate being in a scene, hate being the center of attention. But I needed to get home. I knew the chips would buy me 20 minutes of quiet driving, not fearing for my life and hers. So I took the deep breath instead and took her into the store.
It was as much hell as I thought it would be. Janey was screaming the unearthly scream the whole time. To add a little more of a bizarre twist, she also occasionally screamed out a phrase I have no idea where she learned "Ashes to Ashes! Dust to Dust!" I haven't taken her to any funerals lately, and I can't imagine any of her kids' videos feature that exact phrase, but who knows? It added just the little touch of seeming possessed that made the whole thing that much more fun. Every eye on the crowded store was on us.
I decided somehow, through the screaming and the stares, to just pretend Janey and I were alone in the world, and to do whatever I could to get us through the store and keep her calm. I held her hand, talked to her in a low voice saying things like "I know how scary it is to feel the way you do. Mama loves you. You are being a good girl. Let's get the chips. Let's get in line. I am right here with you" I was far more patient and loving sounding than I felt right then, but I figured I could control my part of the show, and the gawkers didn't need to see a crazed mother too. I was hoping against hope someone would take pity and let us go ahead of them in line, but no such luck. The woman ahead of me seemed to go as slowly as she possibly could, while repeatedly glaring at me to let me know how much she was being disturbed. When I finally got to the counter, the cashier asked for my CVS card, and I said as cheerily as I could "I have one, but I can't get it right now!" Yeah---because if I started searching for it, my daughter would escape and run screaming around your store, lady. I handed her cash and got out of there.
In the car, as I expected, Janey ate the chips and I made it home. She had a few more crying spells, but overall, she's over it.
Now, did I do the right thing? I don't know. To an outsider, it might look like I was giving in to Janey. But I don't think I was. She was upset, but not really about the chips. The chips were just a part of the routine that wasn't met, and a tool to calm her down. I needed to get home safely, and that wasn't going to happen unless I did something, so I did.
I can understand why people stare at Janey when she is acting the way she does. I can't really blame them. But I wish they would just catch my eye and smile, or at least not be quite so open with the staring. I would think they would realize that I don't enjoy going in the store and disturbing their evenings. I'd rather, quite frankly, do almost anything else on earth. But Janey is a human being, one who, despite her sometimes very tough behavior, is part of the world, the community. Figuring out how to make that work is not easy sometimes.
I tried to use it as a bribe. I told Janey "They don't allow loud screaming at the CVS. You need to take a deep breath and calm down if you want to get chips" She tried. She really tried, but there was just no calming down. She was too far gone. I drove into the CVS parking lot and sat there a minute, trying to decide what to do. Janey would cause a scene. There was no avoiding it. I hate being in a scene, hate being the center of attention. But I needed to get home. I knew the chips would buy me 20 minutes of quiet driving, not fearing for my life and hers. So I took the deep breath instead and took her into the store.
It was as much hell as I thought it would be. Janey was screaming the unearthly scream the whole time. To add a little more of a bizarre twist, she also occasionally screamed out a phrase I have no idea where she learned "Ashes to Ashes! Dust to Dust!" I haven't taken her to any funerals lately, and I can't imagine any of her kids' videos feature that exact phrase, but who knows? It added just the little touch of seeming possessed that made the whole thing that much more fun. Every eye on the crowded store was on us.
I decided somehow, through the screaming and the stares, to just pretend Janey and I were alone in the world, and to do whatever I could to get us through the store and keep her calm. I held her hand, talked to her in a low voice saying things like "I know how scary it is to feel the way you do. Mama loves you. You are being a good girl. Let's get the chips. Let's get in line. I am right here with you" I was far more patient and loving sounding than I felt right then, but I figured I could control my part of the show, and the gawkers didn't need to see a crazed mother too. I was hoping against hope someone would take pity and let us go ahead of them in line, but no such luck. The woman ahead of me seemed to go as slowly as she possibly could, while repeatedly glaring at me to let me know how much she was being disturbed. When I finally got to the counter, the cashier asked for my CVS card, and I said as cheerily as I could "I have one, but I can't get it right now!" Yeah---because if I started searching for it, my daughter would escape and run screaming around your store, lady. I handed her cash and got out of there.
In the car, as I expected, Janey ate the chips and I made it home. She had a few more crying spells, but overall, she's over it.
Now, did I do the right thing? I don't know. To an outsider, it might look like I was giving in to Janey. But I don't think I was. She was upset, but not really about the chips. The chips were just a part of the routine that wasn't met, and a tool to calm her down. I needed to get home safely, and that wasn't going to happen unless I did something, so I did.
I can understand why people stare at Janey when she is acting the way she does. I can't really blame them. But I wish they would just catch my eye and smile, or at least not be quite so open with the staring. I would think they would realize that I don't enjoy going in the store and disturbing their evenings. I'd rather, quite frankly, do almost anything else on earth. But Janey is a human being, one who, despite her sometimes very tough behavior, is part of the world, the community. Figuring out how to make that work is not easy sometimes.
My fantasy wish list
Janey seems to be over whatever was happening this weekend, the horrendous crying spell. We are recovering---Tony and I, and the boys, and most of all Janey. But it's left me thinking about our lives a lot, and especially---what would help? What would make it easier to be Janey, and to parent Janey, and to be a sibling to Janey? I had some ideas. These are not ideas anyone can make come true. They are more like fantasy ideas, but I wish they weren't.
The biggest idea, the biggest truly helpful thing---a drop-in center for respite. That is what I daydream about. I've written about it in the past (here). I dream of a center staffed with trained autism professionals, along with paraprofessionals and volunteers (many high schools now require volunteer hours, and this would be a great job for people interested in a career in special needs). You could pre-register there, and get assigned a certain number of hours, and be able to bring your child in with very minimal notice. This would in so many ways be more helpful than in home respite care. That's because what we crave most is a chance to just relax at home, maybe watch TV or a movie or cook or talk with the boys or even have a few minutes of adult time. We don't want to clean the house and pay for dinner out, which having in home respite would require. In fact, we do have in home respite---the boys. If they are available and we have money to pay them, they can always watch Janey, but it's too expensive for us to go out often, and it's not what we need. We need some time as a family to regroup from the incredibly tough job of parenting Janey. And she would benefit greatly from a change of scenery at times too. I picture a place with a sensory room, a fenced safe outdoor play area, autism friendly toys---not a place for learning or drilling or school, just a recreation place that the kids with autism would love and their parents would love even more.
Another thing that would be helpful---a time machine. I wish for this because I feel like right now, we are in the infancy of understanding autism. The epidemic, if there is one, has just started in the past 10 years or so. We are at the stage I imagine is like the early stages of any new illness on the scene. People are desperate, people all have theories, and everyone is well meaning, but no-one completely knows the best practices to follow. No matter what you do, there is something else you aren't doing, and you always wonder if that other thing is what you SHOULD be doing. I wish I could go forward 50 years, just for a day or so, and see what has been learned about autism. What treatments have stood the test of time? Then I could come back and go forward confidently with what I've learned. Or maybe I'll learn nothing has shown to help. Then I could just relax and concentrate on giving Janey the best life I can with what we already have.
The next wish is one that is similar to almost anyone's wishes---unlimited money! I wish I had enough money for a new house, one with a room that could be made into Janey's own sensory room, one with a big backyard, totally fenced, so Janey could run around all she wanted, one with an indoor pool (I'm dreaming big here!). I wish I could take those great catalogs full of autism friend supplies that are hugely overpriced, and just order anything that caught my eye. I wish I had money to fly all the mothers I've met here for a long weekend in a luxury hotel, where we could laugh and eat fancy food and drink fancy drinks and regroup and relax. I wish I would not have to worry about every cent, or our lousy health plan. I wish I could buy Janey anything that might help her without ever thinking twice.
My last fantasy wish---mind reading. I wish more than anything I could go inside Janey's mind, and see what it was like. I wish I could know what she is feeling when she cries all day, or when she manically repeats lines from videos, or when she obsesses over certain foods, or when she loves a piece of music, or hates it. I wish I knew how her perception of the world is different than mine, and how I could modify her surrounds to work with that. I wish I knew how much she understands of what she hears. I wish I could be her, just for a little while, so I could be a better mother to her.
There are so many things I don't have to wish for, because I already have them---a great school for Janey, a wonderful husband and siblings for her, her good health---all of that. I know I am lucky in so many ways. But for Janey, I still have so much I wish for.
The biggest idea, the biggest truly helpful thing---a drop-in center for respite. That is what I daydream about. I've written about it in the past (here). I dream of a center staffed with trained autism professionals, along with paraprofessionals and volunteers (many high schools now require volunteer hours, and this would be a great job for people interested in a career in special needs). You could pre-register there, and get assigned a certain number of hours, and be able to bring your child in with very minimal notice. This would in so many ways be more helpful than in home respite care. That's because what we crave most is a chance to just relax at home, maybe watch TV or a movie or cook or talk with the boys or even have a few minutes of adult time. We don't want to clean the house and pay for dinner out, which having in home respite would require. In fact, we do have in home respite---the boys. If they are available and we have money to pay them, they can always watch Janey, but it's too expensive for us to go out often, and it's not what we need. We need some time as a family to regroup from the incredibly tough job of parenting Janey. And she would benefit greatly from a change of scenery at times too. I picture a place with a sensory room, a fenced safe outdoor play area, autism friendly toys---not a place for learning or drilling or school, just a recreation place that the kids with autism would love and their parents would love even more.
Another thing that would be helpful---a time machine. I wish for this because I feel like right now, we are in the infancy of understanding autism. The epidemic, if there is one, has just started in the past 10 years or so. We are at the stage I imagine is like the early stages of any new illness on the scene. People are desperate, people all have theories, and everyone is well meaning, but no-one completely knows the best practices to follow. No matter what you do, there is something else you aren't doing, and you always wonder if that other thing is what you SHOULD be doing. I wish I could go forward 50 years, just for a day or so, and see what has been learned about autism. What treatments have stood the test of time? Then I could come back and go forward confidently with what I've learned. Or maybe I'll learn nothing has shown to help. Then I could just relax and concentrate on giving Janey the best life I can with what we already have.
The next wish is one that is similar to almost anyone's wishes---unlimited money! I wish I had enough money for a new house, one with a room that could be made into Janey's own sensory room, one with a big backyard, totally fenced, so Janey could run around all she wanted, one with an indoor pool (I'm dreaming big here!). I wish I could take those great catalogs full of autism friend supplies that are hugely overpriced, and just order anything that caught my eye. I wish I had money to fly all the mothers I've met here for a long weekend in a luxury hotel, where we could laugh and eat fancy food and drink fancy drinks and regroup and relax. I wish I would not have to worry about every cent, or our lousy health plan. I wish I could buy Janey anything that might help her without ever thinking twice.
My last fantasy wish---mind reading. I wish more than anything I could go inside Janey's mind, and see what it was like. I wish I could know what she is feeling when she cries all day, or when she manically repeats lines from videos, or when she obsesses over certain foods, or when she loves a piece of music, or hates it. I wish I knew how her perception of the world is different than mine, and how I could modify her surrounds to work with that. I wish I knew how much she understands of what she hears. I wish I could be her, just for a little while, so I could be a better mother to her.
There are so many things I don't have to wish for, because I already have them---a great school for Janey, a wonderful husband and siblings for her, her good health---all of that. I know I am lucky in so many ways. But for Janey, I still have so much I wish for.
Sunday, January 13, 2013
Better today, but what happened?
Janey is better today, thank goodness. I don't know if we could have taken another day, although of course we would have, because we have no choice. But it was a tough, tough, tough, tough couple of days. Today there is some crying, but no-where near constant, and some long happy times in between. Tony is actually able to watch the Patriots in relative peace while Janey watches a YouTube episode of Mickey Mouse Clubhouse. I hope tomorrow is okay at school. If she had still been like she was yesterday, I would have kept her home, although I'm sure people at school would have said I should send her, but I can't. It would be like sending a very sick child to school, although the acute illness was mental, not physical. But today she is mostly just Janey, never easy but her regular self.
So what happened? Who knows? The theories people have told me through comments are great. I love getting ideas like that. I think the biggest contenders are 1---a cognitive jump that resulted in some brain jumblings and anxiety 2---a low level illness of some kind that she couldn't explain to us, and that didn't have enough obvious outside symptoms for us to see 3---too much chocolate at some point, or other food with caffeine. Maybe she snuck coffee at home or school 4---something small setting her off to start with, and then the crying feeding on itself, and just not being able to get stopped by her.
And what made it better? Again, who knows? Today Tony took her out a few times, which we did yesterday too, but also it was warm enough today so she could run around some in the driveway. She need that time outside, more than most anyone I know. He took her to the grocery store and let her pick out what she wanted to eat, which was pistachio nuts. It seemed like after she ate a bunch of those, things turned around. I looked them up and saw they have lots of B6, copper and manganese, whatever that is, so maybe she needed those nutrients and somehow knew what to pick. Maybe her mind finished processing whatever was bothering it. A bit ago, she said "I'm still happy when I'm crying" We think that's a quote from Yo Gabba Gabba somehow, but she uses quotes to say what she wants, sometimes, and maybe she was trying to tell us she needed the crying for some reason. Again, probably not, but you just don't know with her.
Janey grabbed my camera again today, and when I went to check my pictures, I found a few surprise self-portraits! The first picture is one of those, and the second is one I took of her just now, watching her show and pulling at her eye---two of her favorite activities.
The Grinch shirt is my little piece of Bad Autism Mother dressing. She was being grinch-like, so I put on her grinch shirt. Hey, I'm not saint. Let's hope tomorrow she can wear a cheery, sparkly, happy shirt. Please!
So what happened? Who knows? The theories people have told me through comments are great. I love getting ideas like that. I think the biggest contenders are 1---a cognitive jump that resulted in some brain jumblings and anxiety 2---a low level illness of some kind that she couldn't explain to us, and that didn't have enough obvious outside symptoms for us to see 3---too much chocolate at some point, or other food with caffeine. Maybe she snuck coffee at home or school 4---something small setting her off to start with, and then the crying feeding on itself, and just not being able to get stopped by her.
And what made it better? Again, who knows? Today Tony took her out a few times, which we did yesterday too, but also it was warm enough today so she could run around some in the driveway. She need that time outside, more than most anyone I know. He took her to the grocery store and let her pick out what she wanted to eat, which was pistachio nuts. It seemed like after she ate a bunch of those, things turned around. I looked them up and saw they have lots of B6, copper and manganese, whatever that is, so maybe she needed those nutrients and somehow knew what to pick. Maybe her mind finished processing whatever was bothering it. A bit ago, she said "I'm still happy when I'm crying" We think that's a quote from Yo Gabba Gabba somehow, but she uses quotes to say what she wants, sometimes, and maybe she was trying to tell us she needed the crying for some reason. Again, probably not, but you just don't know with her.
Janey grabbed my camera again today, and when I went to check my pictures, I found a few surprise self-portraits! The first picture is one of those, and the second is one I took of her just now, watching her show and pulling at her eye---two of her favorite activities.
Saturday, January 12, 2013
No better, for now
I wish I could say Janey was doing better today with her crying, but she isn't. She's had a few okay moments, but in general, she's cried all day. We have no idea what is going on, and it's scary. I don't think she's sick, but we finally gave her some Tylenol in case, as I asked her where it hurt and she pointed a few different places. I think something sets her off, and then it feeds on itself---she's crying because she's been crying. If this goes on much longer, I don't know how we will handle it, or how she will.
We tried today---we took her out early to the thrift store she usually loves. She was okay in the car, and part of the time in the store, but then there was a little boy crying and that set her off crying too. Tony noted how their behavior was almost identical, although he was probably about 18 months old. They talked about the same amount, and their cries sounded the same. She cried a good deal of the ride home, and since then, it pretty much hasn't stopped.
Tony took the kids to the free flu shot clinic at the community center, as Boston has declared a flu emergency. He was prepared to leave if Janey couldn't take it, or they couldn't take her, although we did want her to get a flu shot, but it's most vital for Freddy, who has pretty significant asthma and some other health issues. Janey did start to scream her hysterical scream the minute they walked in, but for once it helped out. It was very obvious to the workers there that she had some major special needs, and they let Tony and the kids go to the front of the line. I always feel funny about anything that feels like special treatment, but there was no way she would have stood the hour or so the line would have taken, so it was what it took to get her a shot. Then Tony took the kids to a local chicken place to get take-out, but Janey was too hysterical and he had to leave and walk home with her, leaving Freddy to have to pay with his limited cash for the order they had already put in. We payed him back, of course, but it's just one more example of the siblings being affected and shortchanged by the screaming.
A minute ago, Tony called me from the car. He had taken Janey with him to take Freddy to a friend's house (which I am sure will be an extremely welcome time of respite for Fred) and he was talking to Freddy about how we are handling the crying. He said "We are having to divide and conquer to handle it" Then something amazing happened---Janey through her tears said very plainly, right away "Why does conquer mean, Daddy?" She has NEVER asked what anything meant before. She has extremely, extremely rarely ever asked a question for information, just asked for physical items. Tony and Freddy were both shocked. So maybe, maybe, she is undergoing some kind of mental leap, which is causing her anguish. We can hope it's something like that, but if it makes her this sad, I question whether it's even worth it. Would I trade her being a little bit more aware for being a lot less happy? I don't think so, although that might be hugely paternalistic of me.
It's been a rough weekend, and it's not even half way through. I am appealing to whatever deity still will give me a chance with my limited faith to help us here. Mostly, to help Janey, and ease whatever this horrible mental pain she's having is.
We tried today---we took her out early to the thrift store she usually loves. She was okay in the car, and part of the time in the store, but then there was a little boy crying and that set her off crying too. Tony noted how their behavior was almost identical, although he was probably about 18 months old. They talked about the same amount, and their cries sounded the same. She cried a good deal of the ride home, and since then, it pretty much hasn't stopped.
Tony took the kids to the free flu shot clinic at the community center, as Boston has declared a flu emergency. He was prepared to leave if Janey couldn't take it, or they couldn't take her, although we did want her to get a flu shot, but it's most vital for Freddy, who has pretty significant asthma and some other health issues. Janey did start to scream her hysterical scream the minute they walked in, but for once it helped out. It was very obvious to the workers there that she had some major special needs, and they let Tony and the kids go to the front of the line. I always feel funny about anything that feels like special treatment, but there was no way she would have stood the hour or so the line would have taken, so it was what it took to get her a shot. Then Tony took the kids to a local chicken place to get take-out, but Janey was too hysterical and he had to leave and walk home with her, leaving Freddy to have to pay with his limited cash for the order they had already put in. We payed him back, of course, but it's just one more example of the siblings being affected and shortchanged by the screaming.
A minute ago, Tony called me from the car. He had taken Janey with him to take Freddy to a friend's house (which I am sure will be an extremely welcome time of respite for Fred) and he was talking to Freddy about how we are handling the crying. He said "We are having to divide and conquer to handle it" Then something amazing happened---Janey through her tears said very plainly, right away "Why does conquer mean, Daddy?" She has NEVER asked what anything meant before. She has extremely, extremely rarely ever asked a question for information, just asked for physical items. Tony and Freddy were both shocked. So maybe, maybe, she is undergoing some kind of mental leap, which is causing her anguish. We can hope it's something like that, but if it makes her this sad, I question whether it's even worth it. Would I trade her being a little bit more aware for being a lot less happy? I don't think so, although that might be hugely paternalistic of me.
It's been a rough weekend, and it's not even half way through. I am appealing to whatever deity still will give me a chance with my limited faith to help us here. Mostly, to help Janey, and ease whatever this horrible mental pain she's having is.
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