In my head, there's a long-running series "Good Autism Mother vs. Bad Autism Mother". Any situation with Janey can trigger an episode, one of those staples of sit-coms, the same scene replayed with each mother getting a shot at handling it. Here's an episode for you, entitled "Janey Wakes Up in the Middle of the Night Crying"
Good Autism Mother Version----
GAM, as I will call her, immediately of course wakes up completely, and rushes to Janey's side. She is already searching her mind to figure out the antecedent to the crying---what caused it? Because of course she truly believes nothing is just out of the blue. Something is MAKING Janey sad, and figuring it out is job one! While working on that, she comforts Janey "My sweetheart! I am right here! I will do whatever it takes to make you happy again!" Janey keeps screaming. GAM starts with a huge list of ways to help. She sings sweetly to Janey. She rubs her back. She pulls out a communication program on the iPad to help Janey say what is wrong. She assesses Janey's possible level of hunger, and fixes her a nutritious snack if there's any hunger possible. She speaks to Janey in kind, measured, reasonable tones "You seem very sad. How can I help you feel better?" If nothing seems to work, she assumes that the problem is that she herself, GAM, has not yet figured out what caused the crying, and that she just has to work harder at it. She never, ever thinks for a minute about the sleep she isn't getting. She stays by Janey's side for 2, 3, 4 or however many hours. She doesn't wake up her husband and beg him to take over. She is patient, calm, loving. Eventually, when it's almost morning and almost time to get Janey ready for school, Janey falls back asleep. GAM doesn't grab some sleep them---oh, no! She gets Janey's clothes ready, organizes her backpack, does some light housework and then gently wakes Janey up to start the day.
Bad Autism Mother Version---
Upon hearing Janey's cries, BAM pretends she doesn't hear them. She pretends to be fast asleep, hoping her husband will get up instead of her. If he doesn't, she yells out quite loudly "Janey! It's the middle of the night! Go back to sleep!" This won't work, of course, but maybe it will wake up her husband so she doesn't have to deal with the whole bit. He doesn't wake up. Reluctantly, and thinking over and over how she is very put upon and stressed and nobody understands her life, BAM gets up and goes to Janey. She says "It's nighttime. Go to sleep" She never once even TRIES to figure out why Janey is crying. She doesn't really care, at this point, when her eyes keep closing from the horrible lack of sleep. Janey keeps crying. BAM says "Hey! How'd you like to watch some Kipper?" Janey doesn't answer, but BAM takes that as a yes, and puts on Netflix to a Kipper episode both Janey and she can recite fully. Janey kind of half stops crying to watch the episode, and BAM takes the opportunity to sit next to Janey on the couch. She knows she can't sleep, because Janey will then tear the house to pieces, but she closes her eyes a couple times. The night drones on. Janey is still crying off and on. Janey asks for soda. BAM doesn't even consider that maybe soda is not the best thing for Janey to drink in the night. She just hopes against hope Janey will drink it and go back to sleep, so she pours Janey a glass. Janey pours the glass on the floor. BAM walks away, straight to her sleeping husband, wakes him up rudely and says "I've been up for hours. Janey is driving me insane. Take over right now" BAM doesn't care that her husband has to work in a few hours. She doesn't care about anything but sleeping. She goes straight to sleep, leaving her husband to clean up the soda and deal with Janey. Janey, as in the first version, goes back to sleep right about time for school.
I've got thousands of episodes like that! But now I have to wake up Janey and get her going for school. BAM is going to grab one last cup of coffee, though, before GAM takes over and gets Janey through another day. Both of them wish you all the best of days.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Tuesday, January 28, 2014
Sunday, January 26, 2014
Randomness
Lately, for some reason, I've been thinking a lot about how random events affect lives. If I hadn't happened to look in the paper the day I found the job that led me to meet my husband, I probably never would have met him. If I hadn't happen to take the bad step out of my parent's travel trailer back years ago, I wouldn't have broken my leg. And, through a combination of factors that are not all certain, but that lined up in a certain way, I have a daughter with autism.
I think most people have a feeling deep inside them, until something happens to change it, that their lives are somehow charmed---that they do things right, and because of that, life is not going to deal them surprises they aren't ready for. I know I felt that way, anyway, until my first pregnancy went badly wrong and I wound up having an emergency C-section and being inches from losing working kidneys, feet from dying. For a while after that, everything felt uncertain. I realized that I had no special dispensation from life's tougher dealings. Anything could happen to me.
After a while, once you realize that you are not untouchable, you stop thinking about it as much. But I don't think you are ever quite the same. You are never quite as surprised when things go awry, for reasons outside your control. Janey having autism was not something I anticipated, but somehow, I don't think it totally blindsided me either. I knew it could happen, because I knew anything could happen.
Why am I writing about this? It's because I think sometimes the people that don't get having a special needs child, and to put it more broadly, the people that don't believe in helping others down on their luck, are people that have never had that experience that makes them realize that they too could be in the shoes of those "others" If you truly feel you have control over what happens to you in life, it makes sense to oppose funds to help those with children with special needs, or those who wind up without a job or a way to feed their children, or those who lose their homes in disasters or their sanity to mental illness.
I think sometimes of the reception Janey gets in different kinds of places. Almost always, the toughest places to take Janey are places where I think the percentage of people with lives untouched by true unexpected hardship is high---fancy stores, upscale streets, hushed cultural events, vaulted academic settings. I am in no way saying there aren't people in these places with lives that are far more troubled than I can ever know, but there are less of them, I think. When I take Janey to the convenience store near our house, I almost always get smiles, kind words, understanding looks. It happens too often to be chance. The people there often look as if life has been tough for them. But they seem to get Janey---to at least get what it's like to have a child or to be a child with special needs. It's a pattern I see a lot. The people that embrace Janey, and embrace our family, have for some reason been through tough, unexpected times. They have been hit by life's randomness.
A long time ago, when Tony and I were first married, we stayed at a hotel where in the room across from us, a child screamed all night. I hope we weren't uncaring as to the plight of the child or the parents, but I don't remember thinking "those poor people! That poor kid!" Tony and I think of that child a lot now. I have heard that screaming now, from my precious Janey, so often. I feel quite sure the child was autistic. I wish sometimes I could go back in time and somehow help those people, instead of feeling annoyed and wishing they weren't there, as I did at the time.
I wish I could believe things happen for a reason. But I don't believe that. I believe life is pretty random. But we can choose how we react to the randomness, and we can ease each other's way, because someday, we ourselves might be the randomly chosen one.
I think most people have a feeling deep inside them, until something happens to change it, that their lives are somehow charmed---that they do things right, and because of that, life is not going to deal them surprises they aren't ready for. I know I felt that way, anyway, until my first pregnancy went badly wrong and I wound up having an emergency C-section and being inches from losing working kidneys, feet from dying. For a while after that, everything felt uncertain. I realized that I had no special dispensation from life's tougher dealings. Anything could happen to me.
After a while, once you realize that you are not untouchable, you stop thinking about it as much. But I don't think you are ever quite the same. You are never quite as surprised when things go awry, for reasons outside your control. Janey having autism was not something I anticipated, but somehow, I don't think it totally blindsided me either. I knew it could happen, because I knew anything could happen.
Why am I writing about this? It's because I think sometimes the people that don't get having a special needs child, and to put it more broadly, the people that don't believe in helping others down on their luck, are people that have never had that experience that makes them realize that they too could be in the shoes of those "others" If you truly feel you have control over what happens to you in life, it makes sense to oppose funds to help those with children with special needs, or those who wind up without a job or a way to feed their children, or those who lose their homes in disasters or their sanity to mental illness.
I think sometimes of the reception Janey gets in different kinds of places. Almost always, the toughest places to take Janey are places where I think the percentage of people with lives untouched by true unexpected hardship is high---fancy stores, upscale streets, hushed cultural events, vaulted academic settings. I am in no way saying there aren't people in these places with lives that are far more troubled than I can ever know, but there are less of them, I think. When I take Janey to the convenience store near our house, I almost always get smiles, kind words, understanding looks. It happens too often to be chance. The people there often look as if life has been tough for them. But they seem to get Janey---to at least get what it's like to have a child or to be a child with special needs. It's a pattern I see a lot. The people that embrace Janey, and embrace our family, have for some reason been through tough, unexpected times. They have been hit by life's randomness.
A long time ago, when Tony and I were first married, we stayed at a hotel where in the room across from us, a child screamed all night. I hope we weren't uncaring as to the plight of the child or the parents, but I don't remember thinking "those poor people! That poor kid!" Tony and I think of that child a lot now. I have heard that screaming now, from my precious Janey, so often. I feel quite sure the child was autistic. I wish sometimes I could go back in time and somehow help those people, instead of feeling annoyed and wishing they weren't there, as I did at the time.
I wish I could believe things happen for a reason. But I don't believe that. I believe life is pretty random. But we can choose how we react to the randomness, and we can ease each other's way, because someday, we ourselves might be the randomly chosen one.
Tuesday, January 21, 2014
Always open for advice
First, just a note that Janey slept much better last night. She seems better today---not super happy, but very little crying or screaming. Thank goodness.
I've been thinking a lot about advice lately. I've noticed that after things are very tough with Janey, and I write about it, a lot of friends and blog readers (and those categories overlap a good deal!) seem hesitant about offering advice. I never want to make anyone feel that way. People often say to me "I know I have no idea what it's like to being going through what you are going through". Well, that's true, but that's true for anything anyone is going through. None of us truly know what another person's life is like. I know that everyone has tough challenges, and everyone has situations that are unique to them. But that doesn't mean that no one has advice or ideas that might be helpful in another person's situation.
For me personally, advice is never unwelcome. I don't do anything in regards to Janey (or in any area of my life) I don't want to do, so if the advice is not something I think will work, I just don't use it, but that doesn't mean I'm upset I got it. I need all the help I can get.
I can see how it would be easy to drive people out of your life if you have a child with a significant disability. It's very easy, when sleep deprived and overwhelmed and at the end of your rope, to think everyone else's life is so much better than your own, and to start resenting them. I never want to be like that. Janey is tough. I'll never pretend she isn't. But I have a lot of wonderful things in my life. She is one of them. She is a wonder to me, so often. And I have a great husband, two amazing sons and many friends so amazing I wonder every day what I did to deserve them. I have enough to eat, shelter, all the books I could ever read (thank you, Boston Public Library), my hobbies, good health care, and I am living in this amazing information age, where from right at my computer, I can access Facebook, email and the whole world of the internet. I am lucky in so many ways.
There are days when I feel very alone. There are days when everyone feels very alone, I know. But I know I'm not alone, and I am so glad I'm not. So please, if you have ideas, advice, stories---never ever hesitate to share them.
Monday, January 20, 2014
24 hours without sleep
Remember all those times I said we'd had the toughest night ever with Janey? Well, forget all those. Last night holds the new record.
It really started night before last, which I wrote about here. She slept very little that night, and woke up for good at 5:30 in the morning. She wasn't extra upset or screaming a lot, just awake. And Sunday wasn't a bad day at the start. We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose. We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it. Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep. By 10, when she was still going strong and starting to get cranky, I asked Tony to take over. I slept a couple hours, and was woken up around midnight by Janey's screaming. She hadn't slept at all. Then the fun really started. From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.
I can't imagine how tired Janey must have been at that point, but I know how tired I was. I made coffee three times, in a desperate bid not to give into sleep. She didn't even drowse off for a second---just screamed. A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them. She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream. I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.
Tony got up about 4. By that time, we were both in a state that is hard to even describe. It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good. But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take. We kept counting the hours she had been awake. Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it. I don't think she really slept until about 6. And she slept...2 hours. Until 8. She has been awake since then.
Today has featured a lot of screaming, with some quieter moments. She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.
Where do we go from here? I have no idea. She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep. I am starting to feel like they do very little. We are giving her melatonin, which we have not found to do much of anything. We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect. As much as I was possibly able, I was consistent in my approach to her. We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that. Our friends and family are not up to taking her for a night. The only respite we've ever found was a bust---not able to provide enough care for Janey. I really, truly don't know what can be done to help her and help us. I guess we just keep going.
Last night, in my desperation, I looked on Google for "autism" and "screaming". Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming". I am trying not to swear here. I'm not a swearer. But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night? They try to figure it out. What do the "experts" think? That we just say "Boy, I can't stand that stupid screaming and crying. Obviously it means nothing, so I won't try to interpret it!" Maybe the most telling thing was that in my searching, I found several of my own blog entries from here. It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers. If you are one of those parents, I'm sorry. I know what you are feeling, but I don't know what to do. I don't think anyone really does, for what that is worth.
It really started night before last, which I wrote about here. She slept very little that night, and woke up for good at 5:30 in the morning. She wasn't extra upset or screaming a lot, just awake. And Sunday wasn't a bad day at the start. We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose. We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it. Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep. By 10, when she was still going strong and starting to get cranky, I asked Tony to take over. I slept a couple hours, and was woken up around midnight by Janey's screaming. She hadn't slept at all. Then the fun really started. From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.
I can't imagine how tired Janey must have been at that point, but I know how tired I was. I made coffee three times, in a desperate bid not to give into sleep. She didn't even drowse off for a second---just screamed. A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them. She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream. I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.
Tony got up about 4. By that time, we were both in a state that is hard to even describe. It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good. But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take. We kept counting the hours she had been awake. Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it. I don't think she really slept until about 6. And she slept...2 hours. Until 8. She has been awake since then.
Today has featured a lot of screaming, with some quieter moments. She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.
Where do we go from here? I have no idea. She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep. I am starting to feel like they do very little. We are giving her melatonin, which we have not found to do much of anything. We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect. As much as I was possibly able, I was consistent in my approach to her. We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that. Our friends and family are not up to taking her for a night. The only respite we've ever found was a bust---not able to provide enough care for Janey. I really, truly don't know what can be done to help her and help us. I guess we just keep going.
Last night, in my desperation, I looked on Google for "autism" and "screaming". Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming". I am trying not to swear here. I'm not a swearer. But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night? They try to figure it out. What do the "experts" think? That we just say "Boy, I can't stand that stupid screaming and crying. Obviously it means nothing, so I won't try to interpret it!" Maybe the most telling thing was that in my searching, I found several of my own blog entries from here. It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers. If you are one of those parents, I'm sorry. I know what you are feeling, but I don't know what to do. I don't think anyone really does, for what that is worth.
Sunday, January 19, 2014
Night Note
It's about 1:30 in the morning. Janey is awake. Not an uncommon story. Some nights, she sleeps, some nights, she doesn't. Nothing much seems to determine which. When she doesn't, of course we don't. Of all the things that are hard about raising Janey, the sleep, or lack thereof, is one of the hardest.
What to say about Janey's sleep? I can't be too profound, because my eyes keep closing. I can say it's one of the hugest reasons I am glad I am married, because we can trade off in the night. If I were a single parent, I have no idea how I'd even live. If you know a single parent with an autistic child that doesn't sleep, do anything in your power to help them. If you ARE a single parent with an autistic child that doesn't sleep, I wish I could help you.
Why does Janey sleep so poorly sometimes? I don't know. I can say until she was about seven or so, it wasn't as tough. Sleep was one of the easier areas with her. But something changed in the last few years. Maybe she is more aware of the world around her, and when she wakes in the night, she wants to interact with that world. Maybe it has to do with lights. Janey turns on all the lights in the house when she wakes up. When William was home, she woke him up every night by doing this, and I've been startled many times by lights suddenly going on. Maybe it's her lack of being toilet trained---when her pull-up is wet, it wakes her up. But most likely, it's just a part of whatever in her brain is different.
Not much seems to work with the sleep. We have started giving her melatonin, after finally finding a kind that dissolved (we have to dissolve all her medication in water), but I can't say as it's done a thing. The medication she takes at nighttime makes most kids sleepy, and it might help her get to sleep initially, which is not her problem, but it doesn't keep her asleep in the night. Reasoning with her works as well in the night as it does in the daytime, which is to say not at all. We can't leave her alone to play when she's asleep, any more than we can ever leave her alone for a second when she is awake. As much as I wish there was a solution that would work, I don't think there is.
At least tonight she is happy. When she is awake in the night and screaming, that is pure, pure torture. Tonight, she happily asks for things---TV, snacks, books, songs. Right now she is singing "Alloutte" at the top of her lungs, and saying hopefully to us "Want to sing that song called Allouette?" Well, Janey, frankly, not right now.
Sometimes, during these middle of the night awake sessions, I wish there was no such thing as day or night---I wish that it wasn't conventional to be awake in the daytime, and I could just be up with Janey when she is up and sleep when she sleeps. I do that, when I can, but in the real world, the days include obligations and work and driving Janey places and living a life. But I guess this is living a life too---this is the life I've been given, and the life that Janey has, day or night. And no matter how long the night is, eventually it's morning, and we start it all over again.
What to say about Janey's sleep? I can't be too profound, because my eyes keep closing. I can say it's one of the hugest reasons I am glad I am married, because we can trade off in the night. If I were a single parent, I have no idea how I'd even live. If you know a single parent with an autistic child that doesn't sleep, do anything in your power to help them. If you ARE a single parent with an autistic child that doesn't sleep, I wish I could help you.
Why does Janey sleep so poorly sometimes? I don't know. I can say until she was about seven or so, it wasn't as tough. Sleep was one of the easier areas with her. But something changed in the last few years. Maybe she is more aware of the world around her, and when she wakes in the night, she wants to interact with that world. Maybe it has to do with lights. Janey turns on all the lights in the house when she wakes up. When William was home, she woke him up every night by doing this, and I've been startled many times by lights suddenly going on. Maybe it's her lack of being toilet trained---when her pull-up is wet, it wakes her up. But most likely, it's just a part of whatever in her brain is different.
Not much seems to work with the sleep. We have started giving her melatonin, after finally finding a kind that dissolved (we have to dissolve all her medication in water), but I can't say as it's done a thing. The medication she takes at nighttime makes most kids sleepy, and it might help her get to sleep initially, which is not her problem, but it doesn't keep her asleep in the night. Reasoning with her works as well in the night as it does in the daytime, which is to say not at all. We can't leave her alone to play when she's asleep, any more than we can ever leave her alone for a second when she is awake. As much as I wish there was a solution that would work, I don't think there is.
At least tonight she is happy. When she is awake in the night and screaming, that is pure, pure torture. Tonight, she happily asks for things---TV, snacks, books, songs. Right now she is singing "Alloutte" at the top of her lungs, and saying hopefully to us "Want to sing that song called Allouette?" Well, Janey, frankly, not right now.
Sometimes, during these middle of the night awake sessions, I wish there was no such thing as day or night---I wish that it wasn't conventional to be awake in the daytime, and I could just be up with Janey when she is up and sleep when she sleeps. I do that, when I can, but in the real world, the days include obligations and work and driving Janey places and living a life. But I guess this is living a life too---this is the life I've been given, and the life that Janey has, day or night. And no matter how long the night is, eventually it's morning, and we start it all over again.
Tuesday, January 14, 2014
Heard in the Screaming Room
Overall, the past week has been a pretty good one for Janey. She has been generally quite happy, with the school routine re-established. But still, at times, there is the screaming. When she is tired, or overwhelmed, or perhaps just when a scary thought goes through her head, she screams. I've described her screams before, but words can't really capture them. They are as loud as I think it would be physically possible for a 9 year old girl to scream. They are deafening. She doesn't hold back one single ounce of energy with them---her whole body goes into the scream. They are incredible, and not in a positive way.
A few nights ago, Janey was cheerfully watching shows on Netflix when suddenly, she screamed. I responded with the only strategy that has shown any promise against the screams. I said "You're screaming. We need to go to the Screaming Room" The screaming room is the bathroom. We go in there and I lock the door, which is a latch type lock up high. I took Janey's hand and we went in. She screamed a few more times in there, and then looked at me intently. And then surprised me. Huge amounts of Janey's speech are delayed echolalia. She recites big portions of movies, TV shows, books, songs---we are quite used to hearing the reciting. But this time, she was unmistakably echoing me. I heard my voice, my intonations. She said "You are screaming a very lot. You are screaming because you are worried about where Daddy went". I recognized the phrases. They were from a previous time in the Screaming Room, about a week before, during one of Janey's horrible Christmas vacation spells. I had been trying to put voice to her thoughts, guessing that she was upset because Tony was back at work.
After that echoed speech, I realized that just before the current scream, Tony had said "I'm going to try to sneak upstairs for a minute". His brother lives upstairs, and Tony was going to go up and check on how he was doing. I think Janey heard that, and the idea of Daddy being somewhere else was upsetting her, even if Daddy was going to be right back. We came out of the screaming room and I told Tony what I'd figured out, and he told Janey she could come with him upstairs. Crisis temporarily averted.
Cut to the middle of that night. The reason previously that Tony was going to sneak upstairs without Janey is because when Janey visits her uncle, she always finds his stash of M&Ms, and eats some. If Janey has chocolate after noontime, she doesn't sleep. And of course, she had eaten some when up at her uncles, and of coruse, at 2 am, she woke up screaming. I tell you, it's very hard in the middle of the night, when you are tired out of your mind after a long day and just want to stay asleep to carry out calmly the strategies you've worked out in the daytime. But I tried. When the screaming started, I said as calmly as I could "You're screaming. Let's go to the screaming room". And we did.
Once there, Janey screamed for a while, and then, again, stopped and looked at me. She said "Friends should know each other's hopes and dreams!" That is a direct quote from Janey's favorite movie of all time, The Care Bears Movie. In my exhausted state, that phrase really hit me. I hugged her and said "I really wish I did know your hopes and dreams. I would do anything to know them. I wish you could tell them to me" Janey was taken aback by this show of emotion. A few more screams, and then I guess even her energy was used up. We went back to bed for the remaining few hours of the night.
And this is how we communicate with Janey---through cryptic short bursts of echoing talk, through guesses and interpretation. It strikes me that maybe my degree in English wasn't a total waste. I use the skills I've learned of teasing out meaning from text with Janey all the time. She is the ultimate hard to read work---she doesn't give up her meaning without much close reading. Janey---I'll keep trying. Someday I'll maybe I'll get my doctorate in Janey.
A few nights ago, Janey was cheerfully watching shows on Netflix when suddenly, she screamed. I responded with the only strategy that has shown any promise against the screams. I said "You're screaming. We need to go to the Screaming Room" The screaming room is the bathroom. We go in there and I lock the door, which is a latch type lock up high. I took Janey's hand and we went in. She screamed a few more times in there, and then looked at me intently. And then surprised me. Huge amounts of Janey's speech are delayed echolalia. She recites big portions of movies, TV shows, books, songs---we are quite used to hearing the reciting. But this time, she was unmistakably echoing me. I heard my voice, my intonations. She said "You are screaming a very lot. You are screaming because you are worried about where Daddy went". I recognized the phrases. They were from a previous time in the Screaming Room, about a week before, during one of Janey's horrible Christmas vacation spells. I had been trying to put voice to her thoughts, guessing that she was upset because Tony was back at work.
After that echoed speech, I realized that just before the current scream, Tony had said "I'm going to try to sneak upstairs for a minute". His brother lives upstairs, and Tony was going to go up and check on how he was doing. I think Janey heard that, and the idea of Daddy being somewhere else was upsetting her, even if Daddy was going to be right back. We came out of the screaming room and I told Tony what I'd figured out, and he told Janey she could come with him upstairs. Crisis temporarily averted.
Cut to the middle of that night. The reason previously that Tony was going to sneak upstairs without Janey is because when Janey visits her uncle, she always finds his stash of M&Ms, and eats some. If Janey has chocolate after noontime, she doesn't sleep. And of course, she had eaten some when up at her uncles, and of coruse, at 2 am, she woke up screaming. I tell you, it's very hard in the middle of the night, when you are tired out of your mind after a long day and just want to stay asleep to carry out calmly the strategies you've worked out in the daytime. But I tried. When the screaming started, I said as calmly as I could "You're screaming. Let's go to the screaming room". And we did.
Once there, Janey screamed for a while, and then, again, stopped and looked at me. She said "Friends should know each other's hopes and dreams!" That is a direct quote from Janey's favorite movie of all time, The Care Bears Movie. In my exhausted state, that phrase really hit me. I hugged her and said "I really wish I did know your hopes and dreams. I would do anything to know them. I wish you could tell them to me" Janey was taken aback by this show of emotion. A few more screams, and then I guess even her energy was used up. We went back to bed for the remaining few hours of the night.
And this is how we communicate with Janey---through cryptic short bursts of echoing talk, through guesses and interpretation. It strikes me that maybe my degree in English wasn't a total waste. I use the skills I've learned of teasing out meaning from text with Janey all the time. She is the ultimate hard to read work---she doesn't give up her meaning without much close reading. Janey---I'll keep trying. Someday I'll maybe I'll get my doctorate in Janey.
Friday, January 10, 2014
Letting Go of Janey's Hand
The title of this post sounds kind of metaphorical, but it's actually not. I'm talking literally about deciding when it's safe to let go of Janey's hand.
Until a few months ago, I held Janey's hand ANY time we weren't in a fenced in outside area. This includes as soon as she got out of the car in our driveway (we live in a very busy street) and in all parking lots, stores, sidewalks and so on. She has been known to bolt, and I live in constant fear of her getting lost or running away. She usually didn't protest the hand holding---it's just the way it was. But suddenly, around November, she started letting go of my hand in certain situations. The main one is when she gets out of the car at school. She seems very, very eager to walk to the school from the car by herself. And so I'm trying, very hard, to let that happen...
It's hard for me. I probably held the boys' hands far beyond when most mothers did. They never minded much, but both of them had naturally less adventurous personalities than Janey does, and less active. She has always pushed things a little further than they did, and I think this is the case even taking away her autism from the equation. So my impulse would be to hold her hand forever, into adulthood, for the rest of her life. And maybe that wouldn't be bad, but she is showing me that isn't what she wants. She is 9 years old, and is starting to really look like a big girl. So I am trying, very very hard, to let go when I can.
We park various places, but Janey seems to know the way to school from all of them. I do tell her to wait as I lock the car and get ready to walk. Then I tell her she can go, and she goes---ahead of me, because I am slow and not as sure-footed as her. She walks swiftly and with purpose. When we get to the crosswalk by her school, I call to her again to stop, and she does---looking back at me with annoyance at my pokey nature. I always wait for the "walk" signal, and always talk to her about it, trying to get her to notice it and understand it. And we hold hands crossing the street---I'll do that until I can't any longer. But then I let go again, and let her walk into the school by herself. Strangely, once we are inside, she again wants to hold my hand as we walk to her classroom, which I am happy to do.
In thinking about this, I realize that Janey has come a long way in this area. She doesn't bolt any more, or very rarely does, or I wouldn't even think of letting her walk on her own. Although I always figured she knew where the school was, in the past if I tried to get her to lead me there, she would just stand around and look blank. Now she seems to have purpose, and to understand navigation a bit more. And she is showing the start of a pre-teen-like annoyance with my overprotective nature.
I guess there is a little metaphor here. I know this kind of issue will keep coming up and coming up. I need to let Janey do what she CAN do on her own. I need a way to figure out what she can do that she doesn't WANT to do, and try harder to make her do those things, and I need to look hard at my own behavior and what I just do for her because it's easier. I need to try, little by little, to let go of her hand more often. But it's complicated. When you have a child you are fairly sure will never live on her own, what are you building independence skills for? I know it's good for her to learn these skills, but somehow, it doesn't seem as purpose-driven as for other kids. So I have to balance, to think hard. Learning to walk without holding my hand is not going to lead to her going to the corner store by herself, probably ever. Do I give up that little bit of safety to let her learn a skill that isn't going to progress on? I just don't now. Those are the questions I know I will be asking for years to come.
Until a few months ago, I held Janey's hand ANY time we weren't in a fenced in outside area. This includes as soon as she got out of the car in our driveway (we live in a very busy street) and in all parking lots, stores, sidewalks and so on. She has been known to bolt, and I live in constant fear of her getting lost or running away. She usually didn't protest the hand holding---it's just the way it was. But suddenly, around November, she started letting go of my hand in certain situations. The main one is when she gets out of the car at school. She seems very, very eager to walk to the school from the car by herself. And so I'm trying, very hard, to let that happen...
It's hard for me. I probably held the boys' hands far beyond when most mothers did. They never minded much, but both of them had naturally less adventurous personalities than Janey does, and less active. She has always pushed things a little further than they did, and I think this is the case even taking away her autism from the equation. So my impulse would be to hold her hand forever, into adulthood, for the rest of her life. And maybe that wouldn't be bad, but she is showing me that isn't what she wants. She is 9 years old, and is starting to really look like a big girl. So I am trying, very very hard, to let go when I can.
We park various places, but Janey seems to know the way to school from all of them. I do tell her to wait as I lock the car and get ready to walk. Then I tell her she can go, and she goes---ahead of me, because I am slow and not as sure-footed as her. She walks swiftly and with purpose. When we get to the crosswalk by her school, I call to her again to stop, and she does---looking back at me with annoyance at my pokey nature. I always wait for the "walk" signal, and always talk to her about it, trying to get her to notice it and understand it. And we hold hands crossing the street---I'll do that until I can't any longer. But then I let go again, and let her walk into the school by herself. Strangely, once we are inside, she again wants to hold my hand as we walk to her classroom, which I am happy to do.
In thinking about this, I realize that Janey has come a long way in this area. She doesn't bolt any more, or very rarely does, or I wouldn't even think of letting her walk on her own. Although I always figured she knew where the school was, in the past if I tried to get her to lead me there, she would just stand around and look blank. Now she seems to have purpose, and to understand navigation a bit more. And she is showing the start of a pre-teen-like annoyance with my overprotective nature.
I guess there is a little metaphor here. I know this kind of issue will keep coming up and coming up. I need to let Janey do what she CAN do on her own. I need a way to figure out what she can do that she doesn't WANT to do, and try harder to make her do those things, and I need to look hard at my own behavior and what I just do for her because it's easier. I need to try, little by little, to let go of her hand more often. But it's complicated. When you have a child you are fairly sure will never live on her own, what are you building independence skills for? I know it's good for her to learn these skills, but somehow, it doesn't seem as purpose-driven as for other kids. So I have to balance, to think hard. Learning to walk without holding my hand is not going to lead to her going to the corner store by herself, probably ever. Do I give up that little bit of safety to let her learn a skill that isn't going to progress on? I just don't now. Those are the questions I know I will be asking for years to come.
Wednesday, January 8, 2014
Back to school, back to happier
Janey has been back in school for three days now, and she is far happier than during vacation. The better mood actually did start before school started back up, so maybe school isn't all of it, but it certainly helps. Her first day back, I got a report from her teacher that it was just about the best day she'd ever had---that she was cheerful, working hard, participating, smiling the whole day. That was wonderful to hear. She is sleeping better and on a more regular schedule, and she just seems more engaged.
So---what can I do with this? Well, I know that year round school or something like school is essential. Because I love to borrow trouble, I am already worried about the summer. She can go to the summer program she went to for the last 3 years, but she wasn't at all happy there last summer, and I wasn't happy with it. But other programs are hard to come by, and cost a huge amount often. There are lots of special needs summer programs, but as I am learning as Janey gets older, there is special needs and then there is SPECIAL needs, and most programs can't handle Janey's level of needs. I can try to make home more like school. That isn't really my goal for Janey's life---I think it's good to have home be home and school be school, but I can structure things a little more at home. I can try to figure out what aspects of school make Janey happy, and take those parts to use at home.
When Janey was in the worst of her screaming spell, around last Thursday, Freddy took over with Janey for an hour or so when I'd simply reached the end. He somehow had the idea he'd like to work on academics with her. I was skeptical. I didn't think a little workbook time was the right thing for a girl that was hysterically screaming and crying. But almost right away, when he sat her down with a preschool workbook, she calmed down. She tried to do the work---tracing letters and circles. She identified pictures we pointed out. She seemed to welcome the distraction. Later, Freddy hitched a computer to the TV and tried to work on typing letters with her a little. She wasn't too into it, but again, she was calm. The screaming seemed to break a little after that point. It didn't disappear, but that hour with Freddy marked the beginning of the end of the horrible bad spell.
I'm not going to draw any major conclusions from all of this, but I am going to try to do a little more academics at home with Janey. There is no reason why not to, if it she is calmed by it, and there is a lot of upside possible from it. I'm going to also try to make myself structure days at home more. I'm going to work on finding a good summer program, if possible. I'm not under any delusions that she won't have another tough spell, though. I know enough to know she most likely will. It's such a relief when they are over, but every time she has one, the relief gets a little more tempered with reality. We have only theories why they start, and why they stop. We hang onto patterns and possible causes, but in truth, we don't get a lot about Janey. This doesn't seem to change much with time. But we'll catch our sleep and calm moments while we can, and build up our resources for the always uncertain future.
So---what can I do with this? Well, I know that year round school or something like school is essential. Because I love to borrow trouble, I am already worried about the summer. She can go to the summer program she went to for the last 3 years, but she wasn't at all happy there last summer, and I wasn't happy with it. But other programs are hard to come by, and cost a huge amount often. There are lots of special needs summer programs, but as I am learning as Janey gets older, there is special needs and then there is SPECIAL needs, and most programs can't handle Janey's level of needs. I can try to make home more like school. That isn't really my goal for Janey's life---I think it's good to have home be home and school be school, but I can structure things a little more at home. I can try to figure out what aspects of school make Janey happy, and take those parts to use at home.
When Janey was in the worst of her screaming spell, around last Thursday, Freddy took over with Janey for an hour or so when I'd simply reached the end. He somehow had the idea he'd like to work on academics with her. I was skeptical. I didn't think a little workbook time was the right thing for a girl that was hysterically screaming and crying. But almost right away, when he sat her down with a preschool workbook, she calmed down. She tried to do the work---tracing letters and circles. She identified pictures we pointed out. She seemed to welcome the distraction. Later, Freddy hitched a computer to the TV and tried to work on typing letters with her a little. She wasn't too into it, but again, she was calm. The screaming seemed to break a little after that point. It didn't disappear, but that hour with Freddy marked the beginning of the end of the horrible bad spell.
I'm not going to draw any major conclusions from all of this, but I am going to try to do a little more academics at home with Janey. There is no reason why not to, if it she is calmed by it, and there is a lot of upside possible from it. I'm going to also try to make myself structure days at home more. I'm going to work on finding a good summer program, if possible. I'm not under any delusions that she won't have another tough spell, though. I know enough to know she most likely will. It's such a relief when they are over, but every time she has one, the relief gets a little more tempered with reality. We have only theories why they start, and why they stop. We hang onto patterns and possible causes, but in truth, we don't get a lot about Janey. This doesn't seem to change much with time. But we'll catch our sleep and calm moments while we can, and build up our resources for the always uncertain future.
Thursday, January 2, 2014
Why, why, why, why, why?
That is what I have been asking myself about Janey's crying and screaming, constantly. There is supposed to be a reason for this kind of extreme sadness and anger, something I should be able to figure out. But with Janey, the best I can do is guesses. I reckon to say it's probably the best anyone could do. Here are some of my guesses...
Guess One--- Janey is bothered by the holiday change of routines. She is especially bothered by an inconsistent schedule. She knows, at some level, that we go to school for five days and are home for two, and that on the school days, Daddy goes to work, while he's home on the weekend. During vacation, that is thrown to pieces---there is no school, and Daddy seems to appear randomly---he took off Christmas week, but then had to go back to work, but then it was New Years' Day, now another work day. School was supposed to be tomorrow, but it's already been cancelled due to the coming storm. There is no explaining all that to Janey. On top of that, William is home, for winter break from college. I am pretty sure Janey had no real idea where he suddenly disappeared to last September, although we have taken her to see his college and room several times. And now he's back, but in her eyes, who knows for how long? I even was gone one night, for my semi-annual night out with friends, not coming home until after midnight, which I am sure in Janey's eyes was another scary disappearance. Of course, we explain all these things to her as best we can, but her level of understanding is very limited (and visual calendars and aides beyond her).
Guess Two--- Janey hurts in some way she can't explain to us. I don't think that is the case, but it's possible. When the screaming is terrible, sometimes we give her Tylenol in case she has a headache or some other pain she can't explain, but it usually has no effect. She has no fever, no signs of illness, and when I ask her to "point to the hurty place", which is something she seems to understand, she points to nothing. She can sometimes stop the crying suddenly for an hour or two, and show no signs of any pain. She gets sick less than anyone I know---almost never. I don't think it's pain.
Guess Three--- Bad dreams. Janey is not sleeping well at all. She seems to be resisting sleep, and not sleeping deeply at all. I wonder if she is having bad dreams, which are making her scared to sleep. I am a vivid dreamer, as are her brothers. I can't imagine how scary it would be to have a bad dream and not understand it's just a dream. I've had dreams as young as Janey and younger that still scare me to think about. I've tried talking to Janey about this, about "videos in your head when you sleep" and asking her if she "saw a scary video in her head" and telling her that was a dream and not real. But I have no idea how much of that she understands, and if she does, there isn't a whole lot I can do about it.
Guess Four--- Winter. Janey loves to be outside. But it's been bitterly cold, and snowing a lot, and she just can't spend the afternoon in the back yard as she does in the summer. Exercise is very important for her, but like a lot of things for children with special needs, not easy to come back. We are going to look at special swimming lessons, but even that will only be something like an hour a week at most. The house closes in on all of us in the winter, and I am sure that affects Janey.
Guess Five--- Frustration with her limitations. I have no way of knowing how much Janey understands about herself. I wonder if she is able to think far beyond what she can express, and if she is just plain fed up with that. She showed recently that she can read at least some, and I do truly feel she has untapped potential. That would be incredibly frustrating, and maybe she is just showing us that the only way she can figure out how to.
Guess Six--- No Reason. That is sometimes my leading guess. I don't know if there is any reason at all for Janey's screaming and crying. Or I should say, any reason that is controllable. Her bad spells, and indeed her good spells, seem pretty random sometimes. They come in, last from two to six weeks or so, and go away. I don't know enough about what cyclical mood disorders would look like in an autistic child to say for sure, and I am not convinced anyone else does, either. This is in a lot of ways the scariest possible reason, because it means there isn't a lot we can do. Maybe there is a change of medication, but I have come to realize medication is a guessing game in a child like Janey---a guessing game with pretty high stakes. If I felt sure she would be helped by a new or higher dose of medication, I would be very open to it, but that is always sometimes to be taken very seriously. And there are no guarantees it would help.
And so we are left with guessing, and hoping. There isn't anything else we can do. I think sometimes people outside the world of special needs think there is some number you can call when it just all becomes unbearable---that I can say "Okay, this is just too much. I give in" and I can call that number and all kinds of wonderful help I've been for whatever reason resisting taking advantage of will kick in. The truth is---that help doesn't exist, not in any coordinated or accessible or affordable way. So we just keep on keeping on. We don't have a choice, frankly. And the love we feel for Janey, for all our Janeys, is every bit as strong as the love anyone has for their children. That is how we do it, when people ask how we do it.
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