This morning, I was doing a little reading back of my posts, something I do now and then. My first impression---"Wow, that woman sure does like to write a lot!" Yes, there are over 700 posts. That's over the course of seven years, but it's still a heck of a lot of writing. Another thought was about the early years. For the first few years, I was using the blog mostly as a diary. The posts are far more dashed off and, in my own worst critic mode, poorly written. I don't think it ever occurred to me that anyone would be reading them, and at first, nobody was. Now, I do get a fair amount of readers, which still amazes me every time I think of it.
It struck me that most people probably don't have the time or desire to read through 726 posts to get the story of Janey's life so far. I decided to pick out 10 posts---posts about what I would call turning points in our journey with Janey. They aren't my 10 favorite posts, or most popular posts, but they are ones that write about moments I think back on as instances that changed something in our life with Janey. Here they are, in order of oldest to newest...
The Bad McDonalds Trip
Up until the day of this trip, I felt able to take Janey most anyplace I felt like. She might have tough moments, but they weren't such that it made a scene or made me feel I couldn't handle her in public. I remember this trip to McDonalds vividly as the day I realized everything had changed, and I would be no longer ever just jumping in the car with her to go wherever I felt like.
The First Wonderful Music Moment
This might not really have been the first, but it's the first that stands out in my mind as a time that Janey completely surprised and delighted me by making me realize she could communicate things in musical lyrics and melodies she could not do in other ways.
The First Medication
This was, after an extremely tough stretch, when we gave in and first put Janey on medication.
Deciding Where I Stood
I think this was the first post where I felt I had earned the right to decide for myself where I stood on how I was approaching Janey's autism. Up until then, I didn't feel I'd earned my stripes enough to do so.
Giving Advice to Non-Autism People
One of the first times I felt I was part of a community and that as part of that community, I had something to say to those who might not understand the community completely!
There Isn't Any Respite
Up until the point written about here, I think I still had a feeling that there was respite for us out there, if we really looked. After giving up on what we thought we had found, we realized there are kids with special needs and then kids with specialer needs, and that Janey was not the first kind.
The Next Level of Tough
This is what I remember as the beginning of the next era with Janey---when it felt like the stakes were getting higher and Janey was entering a new stage of tough behaviors.
The Biggest Sleep Nightmare
Sleep has been an issue for Janey right along, but this night was the apex of it. Knocking on wood a thousand times, it never again has been quite as bad as this fabled night.
The End Of Inclusion
It build up to this day for a while---the IEP meeting where we formally agreed Janey would leave the Henderson Inclusion School and enter a program with autism-only classrooms.
The Hospital Month
A summary of the month Janey spent in first a regular hospital and then a psychiatric ward.
This posts point a bit of a negative picture, but that's not of course the whole Janey story! Right now, again, knocking on wood, Janey seems happier than she has in quite a while. We are hopeful her latest medication and the changes we have made and the schools have made in how we work with her, and of course her own maturation and remarkable spirit, has started another turning point, a very hopeful one.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Showing posts with label outbursts. Show all posts
Showing posts with label outbursts. Show all posts
Wednesday, February 18, 2015
Tuesday, December 23, 2014
A Parenting Book for One
One of the huge frustrations of having a child like Janey is that any mainstream advice books for parenting absolutely don't work. They don't cover kids like Janey. They give advice that assumes a child can talk at a age-appropriate level and can understand basic cause and effect. They assume a child is motivated by praise, and that a child's actions have external stimuli. They don't cover outbursts that become so extreme a child ends up in the emergency room, restrained by many people. They don't deal with screaming with absolutely no reasonable cause that lasts for hours or days.
I've realized over the years that I need to write my own parenting book, one that covers one child only, Janey. I've written it in my head. But I'm going to gradually post it here, bit by bit. I do this because perhaps some parts of it will also apply to other children a bit like Janey. But I caution---much of it won't. Take what you can use, but each of you with a challenging child will also eventually write your own personal parenting book.
Today's chapter---how to calm Janey down when she has an outburst. I should say, how to MAYBE calm Janey down, as very often, you simply can't. But a few things sometimes work. I'll list them in order of what will work for a milder outburst up to what we use in extreme situations.
1. Food.. Often, when she's upset, she's hungry. She doesn't seem to make this connection. And her hunger, like so much of her, seems sometimes out of the blue. She can have eaten a lot already, and still be very hungry. We have learned to quickly get some food into her if she is starting to escalate.
2. A shower. Janey has taught us this one herself. The most common thing she asks for when upset is a shower. The warm water streaming down seems to calm her immensely. We let her stay in the shower as long as she wants. I sit in the bathroom with her and read. The one has the added benefit of getting her away from the rest of the family, so they can have a little break.
3. Turning everything off. If Janey watching TV, or if music is playing anyplace, we turn it off. We often have to unplug the TV so Janey doesn't turn it back on. We stop talking much, we turn off lights, we make the surroundings as quiet and calm as possible, to avoid any external triggers.
4. Covering Janey with blankets. If I can, I get Janey on the bed and cover her up. Like many kids with autism, the pressure of the blankets seems to help a good deal.
5. Repetitive soothing touch and sound. I will often massage Janey's feet with lotion. While doing this, I'll sing a song, something mellow and quiet, over and over. Sometimes it's just a made-up song, like "Massage, massage, massage Janey's feet..."
6. Backing away. If Janey is still upset after all this, I've learned lately I need to just get out of her way. I don't want to be hit or bitten or have my hair pulled, for several reasons. One is of course that I don't like being hurt, but also, if I am hurt, I naturally react in a way that escalates the whole situation. So sometimes, I just walk away, and let Janey rage. If she follows me, I keep moving.
7. Nothing. When Janey is truly agitated, nothing helps. Nothing at all. All that can be done is to wait it out, sometimes until she falls asleep. Doing anything at all makes things worse. So sometimes, we just stand back and do whatever we can do with screaming and flailing going on the background. This is the hardest one for me to do. I want to help Janey, but sometimes, there is no help. She needs to just get through the episode on her own. Of course, we step in to keep her safe when necessary, but otherwise, we just wait for the storm to pass.
As you might guess, it's been a long morning here. I have used all these techniques and am now, in writing this, on step 7. It seems to be working a bit. Janey is watching nursery rhyme videos on YouTube, no longer screaming or hitting me. Merry Christmas Eve Eve.
I've realized over the years that I need to write my own parenting book, one that covers one child only, Janey. I've written it in my head. But I'm going to gradually post it here, bit by bit. I do this because perhaps some parts of it will also apply to other children a bit like Janey. But I caution---much of it won't. Take what you can use, but each of you with a challenging child will also eventually write your own personal parenting book.
Today's chapter---how to calm Janey down when she has an outburst. I should say, how to MAYBE calm Janey down, as very often, you simply can't. But a few things sometimes work. I'll list them in order of what will work for a milder outburst up to what we use in extreme situations.
1. Food.. Often, when she's upset, she's hungry. She doesn't seem to make this connection. And her hunger, like so much of her, seems sometimes out of the blue. She can have eaten a lot already, and still be very hungry. We have learned to quickly get some food into her if she is starting to escalate.
2. A shower. Janey has taught us this one herself. The most common thing she asks for when upset is a shower. The warm water streaming down seems to calm her immensely. We let her stay in the shower as long as she wants. I sit in the bathroom with her and read. The one has the added benefit of getting her away from the rest of the family, so they can have a little break.
3. Turning everything off. If Janey watching TV, or if music is playing anyplace, we turn it off. We often have to unplug the TV so Janey doesn't turn it back on. We stop talking much, we turn off lights, we make the surroundings as quiet and calm as possible, to avoid any external triggers.
4. Covering Janey with blankets. If I can, I get Janey on the bed and cover her up. Like many kids with autism, the pressure of the blankets seems to help a good deal.
5. Repetitive soothing touch and sound. I will often massage Janey's feet with lotion. While doing this, I'll sing a song, something mellow and quiet, over and over. Sometimes it's just a made-up song, like "Massage, massage, massage Janey's feet..."
6. Backing away. If Janey is still upset after all this, I've learned lately I need to just get out of her way. I don't want to be hit or bitten or have my hair pulled, for several reasons. One is of course that I don't like being hurt, but also, if I am hurt, I naturally react in a way that escalates the whole situation. So sometimes, I just walk away, and let Janey rage. If she follows me, I keep moving.
7. Nothing. When Janey is truly agitated, nothing helps. Nothing at all. All that can be done is to wait it out, sometimes until she falls asleep. Doing anything at all makes things worse. So sometimes, we just stand back and do whatever we can do with screaming and flailing going on the background. This is the hardest one for me to do. I want to help Janey, but sometimes, there is no help. She needs to just get through the episode on her own. Of course, we step in to keep her safe when necessary, but otherwise, we just wait for the storm to pass.
As you might guess, it's been a long morning here. I have used all these techniques and am now, in writing this, on step 7. It seems to be working a bit. Janey is watching nursery rhyme videos on YouTube, no longer screaming or hitting me. Merry Christmas Eve Eve.
Tuesday, November 18, 2014
The hospital story continues
I'm waiting tonight for Janey to wake up from sedation after an MRI (which was totally normal), so I thought I'd try to write a bit more of Janey's continuing hospital story.
Monday morning, after a fairly sleepless night, Tony went into work to try to get in a few hours. Janey was restless, but not lashing out. We had a lot of calls and visits. The medical doctor assigned to her came in and talked tome. She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me. After that, both her regular psychiatrist and her pediatrician called. Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it. I was kind of surprised they both saw that about me.
My dear friends Maryellen and Fab both visited that day. Maryellen stayed almost all day, which was a huge help. Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey! Later in the day, Janey's classroom teacher also came to visit. She brought Janey a big bag of books and other things from the classroom that Janey especially likes. We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug. It is so good to see how much she loves her teachers and they love her.
When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey. We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find. She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then. One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now. We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)
Then----I went home. I got a ride home with Maryellen, and got home about 4. It felt hugely weird to be home. It felt like I had been gone years, not just days. I was bone tired, but not quite ready to sleep. I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza. I did some computer time. By 8, I was so tired I wasn't even able to really function. Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully. But I felt wired, like I couldn't sleep. I wound up taking some melatonin, some we had gotten for Janey which never worked for her. It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.
Tony had a fairly good night with Janey. She slept from 7 until 3 am, which is not even that early a wake time for her. He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.
I got back to the room about 6:45. The plan had been for Janey to have an MRI at 7, but we had heard nothing. When we finally did, it was that the MRI had been delayed until noon. That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am. She spent the morning begging for food and drink. It was a long morning, but she remained pretty calm. The contrast to the events of the weekend was incredible. As it so often does with Janey, her mood had simply changed.
Janey finally had the MRI about 2. It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave. They gave her oral sedation, which took extra long to take effect, and then an IV. We went back to the room while she was under. It felt very odd being in the room without Janey. Finally, they brought her back around 6, but she still hasn't woken, as of 8:45. They aren't concerned, as she is on a monitor and she had so much sedation. I am only concerned how she will react when she wakes up.
So---I am caught up to the present! Although the present is still filled with much uncertainly. When talking to the social worker tonight, we found there is still no progress on the placement. There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital. As much as I want her home, I don't like that idea. We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help. I don't want this whole ordeal to result in nothing. I am glad Janey is calmer, but that is what Janey does---she cycles. Although we all always hope her cycles stay good forever, all who know her know that is most unlikely. And I don't ever, ever, ever want to come back here as we did on Friday. So---we will see what the next few days hold.
Monday morning, after a fairly sleepless night, Tony went into work to try to get in a few hours. Janey was restless, but not lashing out. We had a lot of calls and visits. The medical doctor assigned to her came in and talked tome. She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me. After that, both her regular psychiatrist and her pediatrician called. Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it. I was kind of surprised they both saw that about me.
My dear friends Maryellen and Fab both visited that day. Maryellen stayed almost all day, which was a huge help. Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey! Later in the day, Janey's classroom teacher also came to visit. She brought Janey a big bag of books and other things from the classroom that Janey especially likes. We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug. It is so good to see how much she loves her teachers and they love her.
When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey. We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find. She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then. One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now. We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)
Then----I went home. I got a ride home with Maryellen, and got home about 4. It felt hugely weird to be home. It felt like I had been gone years, not just days. I was bone tired, but not quite ready to sleep. I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza. I did some computer time. By 8, I was so tired I wasn't even able to really function. Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully. But I felt wired, like I couldn't sleep. I wound up taking some melatonin, some we had gotten for Janey which never worked for her. It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.
Tony had a fairly good night with Janey. She slept from 7 until 3 am, which is not even that early a wake time for her. He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.
I got back to the room about 6:45. The plan had been for Janey to have an MRI at 7, but we had heard nothing. When we finally did, it was that the MRI had been delayed until noon. That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am. She spent the morning begging for food and drink. It was a long morning, but she remained pretty calm. The contrast to the events of the weekend was incredible. As it so often does with Janey, her mood had simply changed.
Janey finally had the MRI about 2. It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave. They gave her oral sedation, which took extra long to take effect, and then an IV. We went back to the room while she was under. It felt very odd being in the room without Janey. Finally, they brought her back around 6, but she still hasn't woken, as of 8:45. They aren't concerned, as she is on a monitor and she had so much sedation. I am only concerned how she will react when she wakes up.
So---I am caught up to the present! Although the present is still filled with much uncertainly. When talking to the social worker tonight, we found there is still no progress on the placement. There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital. As much as I want her home, I don't like that idea. We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help. I don't want this whole ordeal to result in nothing. I am glad Janey is calmer, but that is what Janey does---she cycles. Although we all always hope her cycles stay good forever, all who know her know that is most unlikely. And I don't ever, ever, ever want to come back here as we did on Friday. So---we will see what the next few days hold.
Monday, November 17, 2014
A Whole New World Part Two
I am home for the night from the hospital---Tony is staying with Janey tonight, although I am of course on call if he needs me. I plan to go back in about 6 am tomorrow. Everyone has been telling me I should just sleep once I get home, and maybe that is good advice, but blogging here yesterday felt the first thing I've done in days that made sense. So I am going to continue my story. I don't think I'll catch up to the present this post, but we'll see.
After I went back to the room, after Janey's major all hell breaking loose meltdown, a few things happened. One is that I found there was a woman in the room, someone called a "sitter". The whole world of this kind of hospital scene being new to me, I'd never heard of a sitter. But I have found out since it's standard protocol for psychiatric patients in non-psych wards. They are women (so far all women) that sit in the room and keep an eye on how things are going. Some do more, some don't. They are there ALL THE TIME. If they have to go to the bathroom, they have to get someone else to come in. More on how that all feels later. At this point, I was too dazed to think much.
A few minutes after going back to the room, I was told Janey was being moved once again, to a quieter area of the emergency room. The new room was a little bigger than the second room, but as in the 2nd room, a part of the room was closed off by a door like a garage door. This blocks off the area of the room with medical devices, the sink and everything really but beds and TV and floor. Again, we were supposed to keep the door open at all times.
Janey was very unhappy. She started to again lash out. This time, the psychiatrist covering the ER didn't want to give her more medication. He said instead we should just walk around with her to try to calm her. A good idea in theory, but in practice, it didn't work well. Janey kept trying to take off her clothes, and she didn't want to wear socks or shoes even when her clothes were on, which made leaving the room a battle. She several times stopped in the middle of walking the loop of the ER and tried to take off her socks or clothes again.
At this point, I decided I'd had enough. I called the nurse and said I felt being at the hospital was only making things much worse. I said I wanted to be discharged---that I needed to take Janey home. I kind of knew that wasn't going to happen, but I had to say my piece. I was crying hysterically and (in my mind) yelling (the nurse later said I wasn't yelling at all, but I am so non-confrontational it felt like yelling). The nurse said it wasn't safe to take Janey home, that although it was very hard, we needed to stay. She said she did have good news---we were going to be admitted and moved to a private room on a medical ward. We would be a term that is new to me, "boarders" I guess there are many boarders around---kids that need a psych ward but for whom no psych ward is available. I was learning new vocabulary fast that day.
The move came about an hour after that. The room was a huge step up from being in the ER. It was up on the top floor of the hospital, in what is actually a transplant ward. That is where they had room. It had a bathroom, a window ledge bed for parents and more room for Janey to move about. That last detail was more important than I realized at first, as I was told once we got there that Janey could not leave the room. She had to stay in the room at all times---it wasn't considered safe for her to leave.
Janey freaked out again badly a little bit after getting to the room. She did the routine that was now and is now starting to seem familiar---tried to take off her clothes, screamed, arched her back, lashed at me and tried to pull my hair and bite me, tried to do the same to the sitter in the room---the same awful sequence. A lot of nurses came in and had to restrain her. They gave her an extra dose of Risperadol again. After about 10 minutes, she calmed a bit. She eventually went to sleep around 9 that night. I told Tony he could go home, and I passed out cold asleep too.
Janey woke up at 3 am, freaking out once again. Very similar---a rapidly escalating hysteria that led to her having to be restrained and having her get more medication. When I say restrained, I don't mean with straps or anything---I mean her arms and legs held down by us. She was up from 3 on.
The rest of that day, Sunday (the days are blending together) felt a little more bearable than the days before. That is a very, very relative thing---before the two horrible days before, I would have felt like it was one of the worst days of my life. But since Janey didn't have a lashing out incident during the daytime, it felt barely bearable. I say barely, because she was absolutely constantly restless. She would want to watch TV, would watch for a minute or two, then change the channel, then want to get on the antique laptop, then on her iPad, then she would ask to take a shower and I would give her a pretend shower in the bathroom, just to change scenery (I gave her a real shower that night, but if she had any many as she would have liked, she'd have had 10 showers), then she would say she wanted to snuggle, then she'd want me to get up, then would go to where I was and want me to move again...repeat all day long. And endlessly, she would ask to take a walk. And I would have to say no---we couldn't take a walk. Which killed me. It felt, quite frankly, like being in prison. You have an agitated, frantic child who very much likes to stay active, and you can't leave the room? For days?
Janey went to sleep about 7 that night. I couldn't get to sleep right away. I wrote the blog entry before this one, I played some Scrabble I just lay there thinking and trying to organize all that had happened in my mind.
Janey woke at midnight, with another outburst. The nurse that came and helped me restrain her and calm her down said something that I guess I was ready to hear at that point. She said "You have to keep yourself safe. You have to step away when Janey is trying to hurt you. You can be a better mother to her if you don't sacrifice yourself" In my sleep-deprived state, my mind suddenly really understood that for the first time. I have to keep myself going. That is the only way I will be able to keep going for Janey. She was talking literally about when Janey bites or kicks me, but I expanded the thought to mean more. I have been reflecting on that thought a lot.
I want to write more, but I will listen to the last paragraph and get some sleep. As a preview of the next day's events, I'll say that we don't yet have any placement in a psych ward, and there is no sign of one in sight. We will have to remain at Children's Hospital until we get one. I hear often two weeks as a common time frame. I very much hope for something sooner. Of course, even then, Janey will not be home, and we will not really be home, although we won't be staying with her. But we will want to visit as much as possible, and the two possible hospitals are both at least an hour away. This new world is not going back to being the old world any time soon.
After I went back to the room, after Janey's major all hell breaking loose meltdown, a few things happened. One is that I found there was a woman in the room, someone called a "sitter". The whole world of this kind of hospital scene being new to me, I'd never heard of a sitter. But I have found out since it's standard protocol for psychiatric patients in non-psych wards. They are women (so far all women) that sit in the room and keep an eye on how things are going. Some do more, some don't. They are there ALL THE TIME. If they have to go to the bathroom, they have to get someone else to come in. More on how that all feels later. At this point, I was too dazed to think much.
A few minutes after going back to the room, I was told Janey was being moved once again, to a quieter area of the emergency room. The new room was a little bigger than the second room, but as in the 2nd room, a part of the room was closed off by a door like a garage door. This blocks off the area of the room with medical devices, the sink and everything really but beds and TV and floor. Again, we were supposed to keep the door open at all times.
Janey was very unhappy. She started to again lash out. This time, the psychiatrist covering the ER didn't want to give her more medication. He said instead we should just walk around with her to try to calm her. A good idea in theory, but in practice, it didn't work well. Janey kept trying to take off her clothes, and she didn't want to wear socks or shoes even when her clothes were on, which made leaving the room a battle. She several times stopped in the middle of walking the loop of the ER and tried to take off her socks or clothes again.
At this point, I decided I'd had enough. I called the nurse and said I felt being at the hospital was only making things much worse. I said I wanted to be discharged---that I needed to take Janey home. I kind of knew that wasn't going to happen, but I had to say my piece. I was crying hysterically and (in my mind) yelling (the nurse later said I wasn't yelling at all, but I am so non-confrontational it felt like yelling). The nurse said it wasn't safe to take Janey home, that although it was very hard, we needed to stay. She said she did have good news---we were going to be admitted and moved to a private room on a medical ward. We would be a term that is new to me, "boarders" I guess there are many boarders around---kids that need a psych ward but for whom no psych ward is available. I was learning new vocabulary fast that day.
The move came about an hour after that. The room was a huge step up from being in the ER. It was up on the top floor of the hospital, in what is actually a transplant ward. That is where they had room. It had a bathroom, a window ledge bed for parents and more room for Janey to move about. That last detail was more important than I realized at first, as I was told once we got there that Janey could not leave the room. She had to stay in the room at all times---it wasn't considered safe for her to leave.
Janey freaked out again badly a little bit after getting to the room. She did the routine that was now and is now starting to seem familiar---tried to take off her clothes, screamed, arched her back, lashed at me and tried to pull my hair and bite me, tried to do the same to the sitter in the room---the same awful sequence. A lot of nurses came in and had to restrain her. They gave her an extra dose of Risperadol again. After about 10 minutes, she calmed a bit. She eventually went to sleep around 9 that night. I told Tony he could go home, and I passed out cold asleep too.
Janey woke up at 3 am, freaking out once again. Very similar---a rapidly escalating hysteria that led to her having to be restrained and having her get more medication. When I say restrained, I don't mean with straps or anything---I mean her arms and legs held down by us. She was up from 3 on.
The rest of that day, Sunday (the days are blending together) felt a little more bearable than the days before. That is a very, very relative thing---before the two horrible days before, I would have felt like it was one of the worst days of my life. But since Janey didn't have a lashing out incident during the daytime, it felt barely bearable. I say barely, because she was absolutely constantly restless. She would want to watch TV, would watch for a minute or two, then change the channel, then want to get on the antique laptop, then on her iPad, then she would ask to take a shower and I would give her a pretend shower in the bathroom, just to change scenery (I gave her a real shower that night, but if she had any many as she would have liked, she'd have had 10 showers), then she would say she wanted to snuggle, then she'd want me to get up, then would go to where I was and want me to move again...repeat all day long. And endlessly, she would ask to take a walk. And I would have to say no---we couldn't take a walk. Which killed me. It felt, quite frankly, like being in prison. You have an agitated, frantic child who very much likes to stay active, and you can't leave the room? For days?
Janey went to sleep about 7 that night. I couldn't get to sleep right away. I wrote the blog entry before this one, I played some Scrabble I just lay there thinking and trying to organize all that had happened in my mind.
Janey woke at midnight, with another outburst. The nurse that came and helped me restrain her and calm her down said something that I guess I was ready to hear at that point. She said "You have to keep yourself safe. You have to step away when Janey is trying to hurt you. You can be a better mother to her if you don't sacrifice yourself" In my sleep-deprived state, my mind suddenly really understood that for the first time. I have to keep myself going. That is the only way I will be able to keep going for Janey. She was talking literally about when Janey bites or kicks me, but I expanded the thought to mean more. I have been reflecting on that thought a lot.
I want to write more, but I will listen to the last paragraph and get some sleep. As a preview of the next day's events, I'll say that we don't yet have any placement in a psych ward, and there is no sign of one in sight. We will have to remain at Children's Hospital until we get one. I hear often two weeks as a common time frame. I very much hope for something sooner. Of course, even then, Janey will not be home, and we will not really be home, although we won't be staying with her. But we will want to visit as much as possible, and the two possible hospitals are both at least an hour away. This new world is not going back to being the old world any time soon.
Tuesday, December 17, 2013
Christmas Blues
I know I'm not alone in having a hard time with Christmas. Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds. But I'd dare to say it's harder for parents raising autistic kids than it is for most. I've been feeling it a lot this year---a very lot. I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way. I've been trying to figure it out---why especially Christmas? I think it boils down to the isolation autism brings.
"Christmas is for children". That's a phrase you hear a lot, and something I believe. Once you are an adult, your main role is giving a great Christmas to your kids. But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas? That is Janey. I am quite sure I could skip the whole bit and she wouldn't care. I could not have a single present for her under the tree, and she wouldn't even notice. I could not have her hang a stocking for Santa, and it wouldn't bother her a bit. It makes it all feel a little meaningless. I will still have presents for her and a stocking, of course, but who am I doing it for? I guess it's for me. In a way, she might be happier if I DIDN'T give her a present or have Santa come. She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then. And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for? (especially if you aren't very religious, and I am not)
All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes. It's yet another part of life that autism steals from both Janey and me. Writing this, I feel sort of petty. I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot. So why is it so hard now? I can't really explain. Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst. Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is. Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life. But a big part of it is sadness for Janey. I am sad she can't anticipate Christmas. I am sad that presents scare and not delight. I am sad she will almost certainly never have children of her own to give a Christmas to. I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine. I am sad for all that Janey will never feel or experience.
It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas. I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey. I hope you all have found a way, and that you find joy and peace this year and always.
"Christmas is for children". That's a phrase you hear a lot, and something I believe. Once you are an adult, your main role is giving a great Christmas to your kids. But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas? That is Janey. I am quite sure I could skip the whole bit and she wouldn't care. I could not have a single present for her under the tree, and she wouldn't even notice. I could not have her hang a stocking for Santa, and it wouldn't bother her a bit. It makes it all feel a little meaningless. I will still have presents for her and a stocking, of course, but who am I doing it for? I guess it's for me. In a way, she might be happier if I DIDN'T give her a present or have Santa come. She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then. And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for? (especially if you aren't very religious, and I am not)
All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes. It's yet another part of life that autism steals from both Janey and me. Writing this, I feel sort of petty. I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot. So why is it so hard now? I can't really explain. Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst. Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is. Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life. But a big part of it is sadness for Janey. I am sad she can't anticipate Christmas. I am sad that presents scare and not delight. I am sad she will almost certainly never have children of her own to give a Christmas to. I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine. I am sad for all that Janey will never feel or experience.
It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas. I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey. I hope you all have found a way, and that you find joy and peace this year and always.
Tuesday, July 2, 2013
Outbursts
In many ways, the summer is starting out well with Janey. She has been happy overall. We've spent a lot of time in the back yard, as always, and a lot of time watching PBS Kids. Both of those are low key activities that let us both relax, and I think Janey needed a little down time.
What's new and a little tough to deal with are Janey's sudden outbursts. These are quite different than the times when she would get upset and cry all day. The crying usually came on at least fairly gradually, over the course of a few days, but the outbursts are out of the blue. Janey can be perfectly happy and content, and suddenly, she starts screaming hysterically, flailing around, crying a river, overcome with fury or misery or who knows what.
We usually have no idea what has set her off. I try what I think of as scaffold sentences, where I start with something like "I am very sad because I don't like...." or "I am very angry because I want...." and she often fills in something, but it's hard to say if it's what she is really thinking or just a random fill-in. I don't think she usually knows herself sets her off. It could be a sound, or pain someplace, or just the random pre-teen emotion that she has no idea how to handle.
The good thing about the outbursts vs. the days of crying is that they are easier to calm (and shorter). Often, just holding her for a little while and talking in a soothing voice can calm her, or giving her something to eat, or just sometimes waiting it out.
In thinking of triggers, actually tone of voice is a big one. Janey is hugely sensitive to the tone of conversation, if not the content. We've had some family around the last few days, and while we certainly weren't fighting or screaming, we tend to tell stories dramatically, and Janey doesn't get that. She hears our voices sounding sad or emphatic or upset, and she freaks out. We often have to switch to what I think of as the "It's a GOOD thing!" voice, like Anthony on that Twilight Zone episode.
I often to remind myself that most kids Janey's age have emotional outbursts. Often, although they will say what is upsetting them, the outbursts make little more sense than Janey's. I remember that with the boys. They could suddenly be hit by a huge wave of anger or despair, which they would label as being about a fight with each other or food they didn't like or homework, when I'm pretty sure it was just a feeling out of the blue, one of those pre-adolescent moments. When I keep that in mind, Janey's outbursts feel a little more manageable and less scary than some of her past behaviors, as long as we don't let them escalate. If they are the biggest challenge of this summer, I think we'll get by.
What's new and a little tough to deal with are Janey's sudden outbursts. These are quite different than the times when she would get upset and cry all day. The crying usually came on at least fairly gradually, over the course of a few days, but the outbursts are out of the blue. Janey can be perfectly happy and content, and suddenly, she starts screaming hysterically, flailing around, crying a river, overcome with fury or misery or who knows what.
We usually have no idea what has set her off. I try what I think of as scaffold sentences, where I start with something like "I am very sad because I don't like...." or "I am very angry because I want...." and she often fills in something, but it's hard to say if it's what she is really thinking or just a random fill-in. I don't think she usually knows herself sets her off. It could be a sound, or pain someplace, or just the random pre-teen emotion that she has no idea how to handle.
The good thing about the outbursts vs. the days of crying is that they are easier to calm (and shorter). Often, just holding her for a little while and talking in a soothing voice can calm her, or giving her something to eat, or just sometimes waiting it out.
In thinking of triggers, actually tone of voice is a big one. Janey is hugely sensitive to the tone of conversation, if not the content. We've had some family around the last few days, and while we certainly weren't fighting or screaming, we tend to tell stories dramatically, and Janey doesn't get that. She hears our voices sounding sad or emphatic or upset, and she freaks out. We often have to switch to what I think of as the "It's a GOOD thing!" voice, like Anthony on that Twilight Zone episode.
I often to remind myself that most kids Janey's age have emotional outbursts. Often, although they will say what is upsetting them, the outbursts make little more sense than Janey's. I remember that with the boys. They could suddenly be hit by a huge wave of anger or despair, which they would label as being about a fight with each other or food they didn't like or homework, when I'm pretty sure it was just a feeling out of the blue, one of those pre-adolescent moments. When I keep that in mind, Janey's outbursts feel a little more manageable and less scary than some of her past behaviors, as long as we don't let them escalate. If they are the biggest challenge of this summer, I think we'll get by.
Subscribe to:
Posts (Atom)