As I was thinking about yesterday, I was trying to think of a word I am not sure exists. What word could describe a feeling that the word "stress" doesn't seem to cover? What word is there for a day that felt like more than the mind was designed to take? I am not sure. But I know if such a word did exist, that many of my fellow autism parents would like to use it, because I know I'm not alone. We deal with uber-stress on a regular basis. We all have our ways of dealing with it. I will write about my day, because other options that start to seem desirable, like hard core adult beverage time or getting in my car and driving thousands of miles away are probably not productive.
The day started with Janey getting on the bus. She seemed happy enough. However, as soon as the bus got to the school, her bus aide called to say she had had a very, very tough time during the ride. She bit herself, hit him, got on the floor of the bus, screamed---all of her routine when she is completely out of control. He was shaken, and made the suggestion "Maybe she needs to go back to the hospital?" I don't blame him for having that thought. I called her teacher, to see if I needed to go get her, and the teacher called back to say she was okay at that moment, and indeed, she made it through the day, with a few screaming periods, but she made it. Needless to say, however, I spent the whole time she was at school on tenterhooks, waiting for a call that things had gone badly south.
After school, we had an appointment with Janey's psychiatrist. This was the appointment that Bradley Hospital made as a followup. They had said it was for the day after we got home, but something got messed up along the way, and it was actually a week after we came home. When checking in for the appointment, I happily took out our brand new MassHealth card, the card that I had thought Janey qualified by means of being disabled, the card that would help us with co-pays and therapies and from many of the stories of hype I'd heard about it, would basically open a world of help up. I had always resisted getting this card. Partly it was that I didn't want to ask for help, but partly it was because I have a huge fear of bureaucracy. But I was reassured it was a GREAT thing to apply for, nothing but good, and when the card arrived, I allowed myself to feel hopeful.
Well, the staff tried to add the card to Janey's record. They made some calls and then looked at me with huge alarm. I didn't totally understand what they were saying, but basically they said the card was for PRIMARY insurance, not SECONDARY, which seemed to make a huge difference. We already have primary insurance for Janey, our family Blue Cross, and this state insurance was supposed to be a supplement, but from what they were telling me, it had been processed somehow as "family assistance" and that meant we had two primary insurances for her, which from the looks on their faces, was a Very Bad Thing. They said I needed to immediately call the number on the card and get everything straightened out, or Very Bad Things would happen.
So I went into Janey's appointment feeling terrified about that. I think the psychiatrist could see we were at the end of some very long rope. He asked how Janey's behavior was since coming home from the hospital, and we basically said it was pretty much no better. We wound up discussing a new medication, the long considered "mood stabilizer" I won't get into the whole ins and outs of it, but basically there seems to be quite a bit of conflict in the psychological world about what would usually be termed bi-polar disorder, and whether it possibly might be something Janey might have. I am not up to thinking about all the debate, but I will say it's long seemed like Janey has manic times and depressed times. At this point, we are ready to try something new. How she is right now is not a way I would want her to have to live long term. So---we will be trying this new medication. It will require careful monitoring at first, and I have to say at this point my hope levels aren't great, but we will try it.
So---after all that fun in the day---a breakdown on the bus, a huge insurance snafu and a new possible diagnosis for Janey of a major psychiatric disorder---I thought I would cap off the day with trying to call the Mass Health people. Of course, there was a half hour hold, and of course, once I got someone, and again was on and off hold for half an hour, the phone somehow got hung up. I was on the cell phone, and I don't know if it was me or him. But that truly did add a needed final touch to my day of the word beyond stress.
All that was left was Janey screaming a lot at night off and on, and hitting me hard a few times. She fell asleep about eight. Tony had been out getting William home from college. The day ended listening to my two amazing boys joking around and discussing world events. I was able to fall asleep by pushing aside until today the day's worries. I listened to them talk as I drifted off. Even the toughest day has moments that are golden like that, and I need very much to keep remembering that.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label psychiatrist. Show all posts
Showing posts with label psychiatrist. Show all posts
Thursday, December 18, 2014
Saturday, November 22, 2014
Our Experience with the Mental Health Boarding Crisis
If you are one of the regular readers of this blog, you are probably thinking "ANOTHER post? I am not up to ANOTHER post!" Please feel free to take a reading break! I will not be hurt! I just feel so compelled to get down the details of this story before they leave my head.
So---what is boarding? In this case, boarding means keeping psychiatric patients at a regular hospital, either in the ER or on a regular medical ward, until they are able to be admitted to a psychiatric hospital or sent home. There are far too few psychiatric beds in this country, most especially for children. So children wind up boarding at hospitals. I was often given two weeks as a common amount of time to be boarding. There is an article here especially about this crisis in Massachusetts, but it exists all over the country.
I think I'd vaguely heard of boarding before last week, but didn't really get it. I knew it wasn't considered a good idea to bring autistic kids especially to the ER for anything but the more dire times, because there was little that could be done for them there, but I didn't get that the problem went beyond that.
In an ideal world, and in I think the minds of many people, things would work like this---You have a child that is somehow showing signs of a severe mental health crisis. You, or your school, have no idea how to handle them. They are becoming unsafe to themselves or to others. In the crisis, you take them to the ER. The ER assesses them, and somehow is able to help them, within the time frames you'd expect for other medical crises---a few hours to a few days. It's not fun, but it's in line with something like appendicitis or a bad case of the flu.
I'll use Janey's case to illustrate the reality. She had been having a tough week. Things escalated Friday at school. The school rightly called an ambulance. Janey was taken to the ER about 1:30 pm. Her vitals were checked, we told our basic story. We finally saw a psychiatrist about 5 pm. The psychiatrist determined that Janey needed to get more help. She said she would check if there were a space in the few mental health wards that could handle Janey's complex needs, but if not, we would sleep over in the ER.
I've written about the time in the ER. There were no spaces available. So, after a 24 hour hold, Janey was admitted to Children's Hospital. She got a single room on what was actually a transplant floor, mostly for babies needing kidney transplants. The nurses there were not psychiatric nurses. The room was not set up for a psychiatric patient. They removed a lot of things from the room before we went in, like the rolling vital signs computer and the phone, to make it a little safer. And we settled in, to wait for the moment there became a place available at one of the two hospitals in our part of the country that could take Janey. The hospital checked three times a day for a spot. On Thursday, around 8 pm, we finally left by ambulance, after 6 days.
Those are the bare facts. The reality was, well, hell. Janey was not allowed to leave her room. I understand the reason for that. She wasn't stable, and she could hurt other patients. But for a child in mental health crisis, being confined to a small room is not easy, to say the extreme least. Hospital procedure, and from what I am told procedure at most hospitals, is that a mental health boarder must have someone from the hospital or contracted to the hospital in their room at all times. These people are called "sitters" In theory, that is a good idea. It's a second set of hands, someone else to keep an eye on the child. In practice, well, it makes things a lot tougher, actually. The sitters varied. Most were well-meaning, but mostly they did what the name says---they sat. They sat in a chair and did nothing. They didn't play with Janey or help in any way. We were not supposed to leave Janey alone with them, so we still needed to be in the room with her. They were supposed to let us be able to sleep, but in reality, when Janey woke, it woke me up. They became one more person in the room to protect from being hurt. We were unable to talk to each other with any candor. I felt I had to make conversation at least a little with the sitters to not be totally rude. They were an added source of stress for certain, although I know they didn't mean to be.
When Janey's behavior escalated in the hospital, we tried to handle it ourselves. If she got more upset, which probably happened about 10 times while there, we called the nurse. That was the procedure. The nurse could do little to help. She would call the psychiatrist on call, or what was called the behavioral team. The only real response they had was to give Janey more medication. There wasn't much else that could be done in the confines of a hospital room. A few days, Janey wound up overmedicated and groggy.
Aside from having a great deal more psychiatric beds available, what would help patients and families who are boarding? I have a few ideas. The biggest one---have SOME spot in the hospital where the child can run around, can be out of their room. Even if this is only once a day, and has to be scheduled so the child is alone and there is staff there, it would be a HUGE help. With sitters, either train them better or make them optional. Have them be helpers. Have some understanding of the stress it puts on a family to have some stranger in their room all the time. Give the parents an hour of respite now and then. I was lucky to have my friend Maryellen help me several days with Janey. Janey's current and a past teacher, which felt like heaven---help and support. Another dear friend braved horrible traffic to bring us some of Janey's favorite foods---a sour pickle, bread and cheese! In one of life's strange coincidences, a friend who is part of the staff at Janey's old school actually had a relative in the same ward as us. Seeing her friendly kind face quite a few times during our stay was wonderful. She brought us a bag with food for Janey, some Play-Doh, puzzle books for me and other treats. I will be grateful for all those kind gestures, as I will be for all of you, my internet, blog and Facebook friends, for your support and love, for the rest of my life.
The United States is one of the richest countries on Earth. It is a shame, a crying, horrible shame, that we can't put more resources into helping our children with mental health issues. Next time you see a news article about a troubled adult acting out, remember they were once a troubled child, and that the money spent to help them at that point is far better spend that money that will be needed as an adult for prison or for a locked ward someplace. I hate to be that blunt, but that is the reality. One child having to "board" ever is one child too many.
So---what is boarding? In this case, boarding means keeping psychiatric patients at a regular hospital, either in the ER or on a regular medical ward, until they are able to be admitted to a psychiatric hospital or sent home. There are far too few psychiatric beds in this country, most especially for children. So children wind up boarding at hospitals. I was often given two weeks as a common amount of time to be boarding. There is an article here especially about this crisis in Massachusetts, but it exists all over the country.
I think I'd vaguely heard of boarding before last week, but didn't really get it. I knew it wasn't considered a good idea to bring autistic kids especially to the ER for anything but the more dire times, because there was little that could be done for them there, but I didn't get that the problem went beyond that.
In an ideal world, and in I think the minds of many people, things would work like this---You have a child that is somehow showing signs of a severe mental health crisis. You, or your school, have no idea how to handle them. They are becoming unsafe to themselves or to others. In the crisis, you take them to the ER. The ER assesses them, and somehow is able to help them, within the time frames you'd expect for other medical crises---a few hours to a few days. It's not fun, but it's in line with something like appendicitis or a bad case of the flu.
I'll use Janey's case to illustrate the reality. She had been having a tough week. Things escalated Friday at school. The school rightly called an ambulance. Janey was taken to the ER about 1:30 pm. Her vitals were checked, we told our basic story. We finally saw a psychiatrist about 5 pm. The psychiatrist determined that Janey needed to get more help. She said she would check if there were a space in the few mental health wards that could handle Janey's complex needs, but if not, we would sleep over in the ER.
I've written about the time in the ER. There were no spaces available. So, after a 24 hour hold, Janey was admitted to Children's Hospital. She got a single room on what was actually a transplant floor, mostly for babies needing kidney transplants. The nurses there were not psychiatric nurses. The room was not set up for a psychiatric patient. They removed a lot of things from the room before we went in, like the rolling vital signs computer and the phone, to make it a little safer. And we settled in, to wait for the moment there became a place available at one of the two hospitals in our part of the country that could take Janey. The hospital checked three times a day for a spot. On Thursday, around 8 pm, we finally left by ambulance, after 6 days.
Those are the bare facts. The reality was, well, hell. Janey was not allowed to leave her room. I understand the reason for that. She wasn't stable, and she could hurt other patients. But for a child in mental health crisis, being confined to a small room is not easy, to say the extreme least. Hospital procedure, and from what I am told procedure at most hospitals, is that a mental health boarder must have someone from the hospital or contracted to the hospital in their room at all times. These people are called "sitters" In theory, that is a good idea. It's a second set of hands, someone else to keep an eye on the child. In practice, well, it makes things a lot tougher, actually. The sitters varied. Most were well-meaning, but mostly they did what the name says---they sat. They sat in a chair and did nothing. They didn't play with Janey or help in any way. We were not supposed to leave Janey alone with them, so we still needed to be in the room with her. They were supposed to let us be able to sleep, but in reality, when Janey woke, it woke me up. They became one more person in the room to protect from being hurt. We were unable to talk to each other with any candor. I felt I had to make conversation at least a little with the sitters to not be totally rude. They were an added source of stress for certain, although I know they didn't mean to be.
When Janey's behavior escalated in the hospital, we tried to handle it ourselves. If she got more upset, which probably happened about 10 times while there, we called the nurse. That was the procedure. The nurse could do little to help. She would call the psychiatrist on call, or what was called the behavioral team. The only real response they had was to give Janey more medication. There wasn't much else that could be done in the confines of a hospital room. A few days, Janey wound up overmedicated and groggy.
Aside from having a great deal more psychiatric beds available, what would help patients and families who are boarding? I have a few ideas. The biggest one---have SOME spot in the hospital where the child can run around, can be out of their room. Even if this is only once a day, and has to be scheduled so the child is alone and there is staff there, it would be a HUGE help. With sitters, either train them better or make them optional. Have them be helpers. Have some understanding of the stress it puts on a family to have some stranger in their room all the time. Give the parents an hour of respite now and then. I was lucky to have my friend Maryellen help me several days with Janey. Janey's current and a past teacher, which felt like heaven---help and support. Another dear friend braved horrible traffic to bring us some of Janey's favorite foods---a sour pickle, bread and cheese! In one of life's strange coincidences, a friend who is part of the staff at Janey's old school actually had a relative in the same ward as us. Seeing her friendly kind face quite a few times during our stay was wonderful. She brought us a bag with food for Janey, some Play-Doh, puzzle books for me and other treats. I will be grateful for all those kind gestures, as I will be for all of you, my internet, blog and Facebook friends, for your support and love, for the rest of my life.
The United States is one of the richest countries on Earth. It is a shame, a crying, horrible shame, that we can't put more resources into helping our children with mental health issues. Next time you see a news article about a troubled adult acting out, remember they were once a troubled child, and that the money spent to help them at that point is far better spend that money that will be needed as an adult for prison or for a locked ward someplace. I hate to be that blunt, but that is the reality. One child having to "board" ever is one child too many.
Friday, November 21, 2014
The long day's journey into hope
As I write this, I am at home. Janey is in Rhode Island, at Bradley Hospital, a children's psychiatric hospital. I am going to try to write about the last few days---days that seem like a long, long dream---not always a bad dream---more like the confused, meandering type dream with many elements that seem to not make sense, but a general feeling at the end of hopefulness.
Wednesday morning---Janey woke groggily after a fairly solid night of sleep. She woke a few times, still obviously under the influence of the anesthesia and the extra medication she had been getting. She kept falling back asleep after just being up a few minutes. Her blood pressure was often low when it was checked, and she wasn't very steady on her feet. Tony came by before work, and I snuck out for my daily cup of Au Bon Pain coffee---a lifesaver. After he went to work, my amazing friend Maryellen came to help. It was fantastic having her there on both Monday and Wednesday. If you ever have the misfortune to be a "boarder" in a hospital, waiting for a psych placement, I hope you have a friend like Maryellen.
That day, Wednesday, is a bit of a haze in my mind, as it was I think in Janey's mind. I know I was visited by several people. One was the psychiatrist on Janey's case, who I will not talk about a great deal here. I will just summerize by saying she saw Janey for about 10 minutes on Monday night, when I was home and Tony was with her, and from those 10 minutes was able to feel that she was "delightful" and "prone to moodiness". Okay. Both are very, very true, but not exactly the impression that others had gotten of her, especially those who were bitten or attacked by her. Enough said. Regardless of that opinion, she was continuing the search for a inpatient hospital for Janey. At that point, the most likely candidate was Hempstead Hospital in New Hampshire. They had her on their waiting list, and were just waiting to see if a patient was discharged on Thursday.
A few other people came by. One visit was the speech therapist and the child life therapist (I think). They wanted to make a schedule for Janey, using picture cards. Janey was out cold when they visited----I tried to rouse her, as she had been sleeping too much, but couldn't. They said they would come back later in the day. The most striking visit was from the hospital chaplain. She said she knew I had been there a while and wanted to know if I wanted to talk. Yes, indeed, I did. I am not a very religious person, but there are no atheists in foxholes. Maryellen stayed with Janey and we went to a private room to talk. It was wonderful. She was a rabbi, but our talk was not really about religion---more about helping me think about how to go forward. I have rarely had a better talk with anyone.
Later in the day, Janey woke a bit more. The speech therapist came back, with a PECS type board (little cards with velcro on the back and pictures of various activities on the front, to make up a schedule) She was very well meaning, and such a schedule might be great in another situation, but the fact was that we were confined to one room, and there simply weren't a lot of choices of activity. Janey has also never been a huge fan of PECS, which her schools have figured out. It struck me that the time spent making up the fairly elaborate board could have been used one on one with Janey, giving her some help and us a bit of a break.
Wednesday night, Janey again slept fairly well. I was feeling that she was a bit overmedicated. She had been getting extra Risperadol several times when she lashed out, to help calm her, and she was starting to seem very hard to really wake up. I decided if possible, I would avoid further extra doses.
As Janey woke Thursday morning, she was not in a happy mood. She started what she had been doing often during the stay---moaning out "Mama! Daddy!" and crying. She at one point jumped out of bed and ran toward the current "sitter", a very nice woman, and scratched her. I managed to calm her down, and soon Tony arrived. He had worked on Wednesday, but we decided he would stay home on Thursday and Friday. We settled in to wait for news on the hospital transfer, which we were told we'd get around 10:30.
At about 11, the social worker came in to fill us in. She walked in ready to tell us there was no new news, but as she arrived, she got a text telling her that there was a place for Janey. The place was not at Hemstead Hospital, as we had been anticipating, but at Bradley Hospital, in Rhode Island. We were thrilled there was a place anywhere, thrilled in a way you can probably only be after spending 6 days in the hospital with a very agitated autistic 10 year old who can't leave their room.
I am going to write the rest of the story up to this morning in just a little bit---I thought I would divide this part up as this is getting long. I am going to interspace a few pictures of Janey at the hospital.
I again thank everyone who is following this journey. Your comments, thoughts, prayers and ideas mean more to me than I can ever, every express.
Wednesday morning---Janey woke groggily after a fairly solid night of sleep. She woke a few times, still obviously under the influence of the anesthesia and the extra medication she had been getting. She kept falling back asleep after just being up a few minutes. Her blood pressure was often low when it was checked, and she wasn't very steady on her feet. Tony came by before work, and I snuck out for my daily cup of Au Bon Pain coffee---a lifesaver. After he went to work, my amazing friend Maryellen came to help. It was fantastic having her there on both Monday and Wednesday. If you ever have the misfortune to be a "boarder" in a hospital, waiting for a psych placement, I hope you have a friend like Maryellen.
That day, Wednesday, is a bit of a haze in my mind, as it was I think in Janey's mind. I know I was visited by several people. One was the psychiatrist on Janey's case, who I will not talk about a great deal here. I will just summerize by saying she saw Janey for about 10 minutes on Monday night, when I was home and Tony was with her, and from those 10 minutes was able to feel that she was "delightful" and "prone to moodiness". Okay. Both are very, very true, but not exactly the impression that others had gotten of her, especially those who were bitten or attacked by her. Enough said. Regardless of that opinion, she was continuing the search for a inpatient hospital for Janey. At that point, the most likely candidate was Hempstead Hospital in New Hampshire. They had her on their waiting list, and were just waiting to see if a patient was discharged on Thursday. A few other people came by. One visit was the speech therapist and the child life therapist (I think). They wanted to make a schedule for Janey, using picture cards. Janey was out cold when they visited----I tried to rouse her, as she had been sleeping too much, but couldn't. They said they would come back later in the day. The most striking visit was from the hospital chaplain. She said she knew I had been there a while and wanted to know if I wanted to talk. Yes, indeed, I did. I am not a very religious person, but there are no atheists in foxholes. Maryellen stayed with Janey and we went to a private room to talk. It was wonderful. She was a rabbi, but our talk was not really about religion---more about helping me think about how to go forward. I have rarely had a better talk with anyone.
Wednesday night, Janey again slept fairly well. I was feeling that she was a bit overmedicated. She had been getting extra Risperadol several times when she lashed out, to help calm her, and she was starting to seem very hard to really wake up. I decided if possible, I would avoid further extra doses.
At about 11, the social worker came in to fill us in. She walked in ready to tell us there was no new news, but as she arrived, she got a text telling her that there was a place for Janey. The place was not at Hemstead Hospital, as we had been anticipating, but at Bradley Hospital, in Rhode Island. We were thrilled there was a place anywhere, thrilled in a way you can probably only be after spending 6 days in the hospital with a very agitated autistic 10 year old who can't leave their room.
I am going to write the rest of the story up to this morning in just a little bit---I thought I would divide this part up as this is getting long. I am going to interspace a few pictures of Janey at the hospital.
I again thank everyone who is following this journey. Your comments, thoughts, prayers and ideas mean more to me than I can ever, every express.
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.
Sunday, November 16, 2014
A whole new world Part 1
As I write this from an old laptop at Children's Hospital in Boston, on Sunday night, it is hard to believe all that has happened in the last two days. It will take me a long time to write all I want to, but this will be a start.
Last week was a tough one. Janey was showing a lot of aggressive and self-injurious behaviors, and we were not sure what was up. But I think we figured that she'd had bad spells before, and they got better. We were not planning to do much with this current bad spell but wait it out. Janey went to school on Friday, and I somehow felt very relaxed, like things were turning around. That is how good my ESP is. I got a call from the school around 1. Janey had been screaming, lashing out, hitting herself, biting herself and trying to bite others for several hours. I said I would come get her, but the nurse said she didn't feel it would be safe for me to take her home. They said they were calling an ambulance to take her to the emergency room.
I was stunned, overwhelmed, hysterical. I simply hadn't thought of that potentially happening. I am not sure why. I drove to the school crying. I'm not sure how I made it without an accident. When I got there, about 5 teachers and therapists and nurses were gathered to talk to me. They were all wonderful, but felt very strongly that Janey needed help, immediately. And so I agreed to have her go in the ambulance. Her great classroom teacher came with me,and another teacher followed to bring Janey's teacher back to the school afterward. They truly went above and beyond, but I was still in a state of shock.
Janey enjoyed the ambulance ride immensely. So much so that I started to think we would get to the hospital and they would say "why in the world are you here?" If only...We got a room in thr ER right away, and were seen by triage, mostly just to take vital signs. Janey was agitated in the room, but not severely so at first. A few hours after we arrived, we were seen by a psychiatrist, who observed Janey and heard about what had happened during the week. She took the numbers of the teacher, the administrator and a social worker at the school,and I heard later she did call them all,which was good. She told us that based on what she had seen and heard, she felt Janey should be admitted to a psych ward. I had assumed if this was the case, she would be at the ward at Children's, where we were, but she explained that only a few hospitals were equipped to deal with low functioning, aggressive autistic children. She knew of two---both probably an hour from Boston. She said they would check for space at them, but it was highly unlikely they'd have a space right now, and that we would stay overnight in the ER.
After a bit, we were moved to another room. The new room was MUCH smaller than the other ER room, and was right by a very busy nursing station. We were told we needed to keep the door to the room open, so Janey could be observed at all times. There was barely room in in the room for a bed and a chair for me. Janey finally fell asleep from exhaustion, about six pm, and I fell asleep shortly after. I told Tony he could go home for the night.
Around 11, Janey woke up. She immediately started trying to take off her clothes, which were wet. I had no other clothes, and the ER brought me some pants and a top---the pants were about a men's size XL and the top a child's size XS. Neither of course fit on Janey. I also had no more pullups. They brought me an adult diaper, about a size also men's XL, with the tapes gone. Needless to say, this didn't work out. Janey was getting more and more upset and taking off her clothes and screaming. AT that point, I gave in and called Tony and asked him to come back, with clothes and pullups. He did, but Janey didn't go back to sleep. She remained awake, agitated and wild. I was beyond tired and beyond overwhelmed.
Janey seemed a little calmer around 8, and I told Tony he could go home and try to get a little more sleep, Well, that might have been a mistake. Shortly after he left, all hell broke loose. I don't think I can even describe how badly hell broke loose. Janey started lashing out, trying to bite me, pulling my hair and screaming. When a nurse came in to help, she did her best to hit and bite the nurse. She was ripping off her clothes repeatedly,and trying to run out in the hall. She took a carton of chocolate milk and flung it at the wall. She landed a bite on my hand. A crowd had gathered, of nurses and security people and even policemen. I felt like I'd gone into slow motion, like this was part of a movie or dream. Someone told me to leave the room so I would not get hurt more.
I was taken to a small quiet room and a lovely nurse gave me some coffee and toast. She said they would work on Janey and I should rest. I had two minds---one said I should stay with my child who was so upset, and the other knew I couldn't, that I was at the end of some kind of limit that could not be pushed any further I h/adn't slept, I was in the middle of the toughest day of my life, I was in a state of shock. So I sat and drank the coffee and ate the toast and called Tony, who was understandably also stunned at the turn things had taken.
After a while, a nurse came in and asked how Janey usually responded to Ativan, an anti-anxiety drug. I said she had never had it before that day. She said they had been considering giving Janey a dose of Haldol, which I knew was an anti-psychotic, by shot, because she had still not calmed down, but they decided to give her some Risperadol instead, as Janey already takes that, and they didn't want to mix the two. They gave her an extra dose of the Riperadol. They told me to rest and they would call me when Janey needed me/
Needless to say, I couldn't rest/ I tried, but I felt I had to see how Janey was doing. After about half an hour, I went back to her room. She was looking close to sleep, biting on a bite toy. I hugged her and held her. She stayed awake, although she was quite out of it. I sat there, empty of all emotion, waiting to see what happened next.
I'll try to write part 2 soon. I'm not trying to build suspense---my eyes are closing. I need to sleep while Janey sleeps/ So I will close by saying the support all of you have given me since my sister posted on my Facebook page has helped to keep me going in this last few very dark days, and I am extremely, overwhelming grateful. I haven't been great about answering notes or calling people the last few days, and I will try to be better as the situation allows, but please do know I treasure all of you.
Last week was a tough one. Janey was showing a lot of aggressive and self-injurious behaviors, and we were not sure what was up. But I think we figured that she'd had bad spells before, and they got better. We were not planning to do much with this current bad spell but wait it out. Janey went to school on Friday, and I somehow felt very relaxed, like things were turning around. That is how good my ESP is. I got a call from the school around 1. Janey had been screaming, lashing out, hitting herself, biting herself and trying to bite others for several hours. I said I would come get her, but the nurse said she didn't feel it would be safe for me to take her home. They said they were calling an ambulance to take her to the emergency room.
I was stunned, overwhelmed, hysterical. I simply hadn't thought of that potentially happening. I am not sure why. I drove to the school crying. I'm not sure how I made it without an accident. When I got there, about 5 teachers and therapists and nurses were gathered to talk to me. They were all wonderful, but felt very strongly that Janey needed help, immediately. And so I agreed to have her go in the ambulance. Her great classroom teacher came with me,and another teacher followed to bring Janey's teacher back to the school afterward. They truly went above and beyond, but I was still in a state of shock.
Janey enjoyed the ambulance ride immensely. So much so that I started to think we would get to the hospital and they would say "why in the world are you here?" If only...We got a room in thr ER right away, and were seen by triage, mostly just to take vital signs. Janey was agitated in the room, but not severely so at first. A few hours after we arrived, we were seen by a psychiatrist, who observed Janey and heard about what had happened during the week. She took the numbers of the teacher, the administrator and a social worker at the school,and I heard later she did call them all,which was good. She told us that based on what she had seen and heard, she felt Janey should be admitted to a psych ward. I had assumed if this was the case, she would be at the ward at Children's, where we were, but she explained that only a few hospitals were equipped to deal with low functioning, aggressive autistic children. She knew of two---both probably an hour from Boston. She said they would check for space at them, but it was highly unlikely they'd have a space right now, and that we would stay overnight in the ER.
After a bit, we were moved to another room. The new room was MUCH smaller than the other ER room, and was right by a very busy nursing station. We were told we needed to keep the door to the room open, so Janey could be observed at all times. There was barely room in in the room for a bed and a chair for me. Janey finally fell asleep from exhaustion, about six pm, and I fell asleep shortly after. I told Tony he could go home for the night.
Around 11, Janey woke up. She immediately started trying to take off her clothes, which were wet. I had no other clothes, and the ER brought me some pants and a top---the pants were about a men's size XL and the top a child's size XS. Neither of course fit on Janey. I also had no more pullups. They brought me an adult diaper, about a size also men's XL, with the tapes gone. Needless to say, this didn't work out. Janey was getting more and more upset and taking off her clothes and screaming. AT that point, I gave in and called Tony and asked him to come back, with clothes and pullups. He did, but Janey didn't go back to sleep. She remained awake, agitated and wild. I was beyond tired and beyond overwhelmed.
Janey seemed a little calmer around 8, and I told Tony he could go home and try to get a little more sleep, Well, that might have been a mistake. Shortly after he left, all hell broke loose. I don't think I can even describe how badly hell broke loose. Janey started lashing out, trying to bite me, pulling my hair and screaming. When a nurse came in to help, she did her best to hit and bite the nurse. She was ripping off her clothes repeatedly,and trying to run out in the hall. She took a carton of chocolate milk and flung it at the wall. She landed a bite on my hand. A crowd had gathered, of nurses and security people and even policemen. I felt like I'd gone into slow motion, like this was part of a movie or dream. Someone told me to leave the room so I would not get hurt more.
I was taken to a small quiet room and a lovely nurse gave me some coffee and toast. She said they would work on Janey and I should rest. I had two minds---one said I should stay with my child who was so upset, and the other knew I couldn't, that I was at the end of some kind of limit that could not be pushed any further I h/adn't slept, I was in the middle of the toughest day of my life, I was in a state of shock. So I sat and drank the coffee and ate the toast and called Tony, who was understandably also stunned at the turn things had taken.
After a while, a nurse came in and asked how Janey usually responded to Ativan, an anti-anxiety drug. I said she had never had it before that day. She said they had been considering giving Janey a dose of Haldol, which I knew was an anti-psychotic, by shot, because she had still not calmed down, but they decided to give her some Risperadol instead, as Janey already takes that, and they didn't want to mix the two. They gave her an extra dose of the Riperadol. They told me to rest and they would call me when Janey needed me/
Needless to say, I couldn't rest/ I tried, but I felt I had to see how Janey was doing. After about half an hour, I went back to her room. She was looking close to sleep, biting on a bite toy. I hugged her and held her. She stayed awake, although she was quite out of it. I sat there, empty of all emotion, waiting to see what happened next.
I'll try to write part 2 soon. I'm not trying to build suspense---my eyes are closing. I need to sleep while Janey sleeps/ So I will close by saying the support all of you have given me since my sister posted on my Facebook page has helped to keep me going in this last few very dark days, and I am extremely, overwhelming grateful. I haven't been great about answering notes or calling people the last few days, and I will try to be better as the situation allows, but please do know I treasure all of you.
Friday, November 14, 2014
The Terrible Day and the "What Next?" Feeling
Yesterday was a terrible day with Janey, terrible from start to finish.
Janey slept very badly night before last. She was up at around 2 for good. By bus time in the morning, we were exhausted. The bus aide told Tony before Janey got on the bus that she has been crying a lot the day before. Tony said he hoped today would be better. We all hoped that.
I slept much of the day. At around 1 pm, I got a phone call from the school, from one of the program heads and Janey's teacher. They said Janey's behavior was at a level they had never seen before---frantic crying and screaming. They took her to the nurse, but as is almost always the case with Janey, she was physically healthy. They wondered if anything had been different at home. It hadn't, except that we too had certainly noticed Janey had entered one of her darker periods, after a long stretch of happy behavior. I felt like I had little to offer them in the way of ideas.
Getting Janey off the bus, I heard the driver say to her "Maybe NOW you'll stop crying!" I asked the drive and aide if she had been crying a lot, but they didn't answer---I don't know if they didn't hear me or were just too burnt out to answer. Janey came in and was happy for about 20 minutes. Then all hell broke loose.
Janey asked me for a video. I put it on. She evidently didn't like it. She lunged at me. She grabbed my hands and started bending back the fingers as hard as she could---a behavior that has showed up in the last few days for whatever reason. I pulled away my hand, and she grabbed my hair and pulled it as hard as she could. I pulled away and she lunged again, and tried to bite me. All the while, she was screaming a scream so loud and intense her back was arching. I could feel that her heart was pounding very fast, and she was breathing extremely hard.
I got away from her, feeling for the first time true fear that she was going to badly hurt me. I called Tony, and as we talked, she again lunged at me. I was in tears. Tony said he would get home as quickly as he could.
I gave Janey a dose of her evening medicine early, as her psychiatrist has said we could do in an emergency. As always, she took it willingly. She knows it calms her down, and I think she wanted to calm down. After about 20 minutes of screaming, she was calm enough to eat, and Tony got home a bit after that.
The evening featured off and on incidents, but the worst was over for the time being. Tony and I were drained. Janey was not. She stayed up until 10. Thankfully, she slept until 4---the 6 hour stretch was the best we've had in a while.
The morning from 4 on was tough but somewhat bearable, with the two of us here. When Tony put Janey on the bus, both the driver and aide talked to him. Unfortunately, there is a big language barrier, and with the loud bus engine, Tony was unsure what they were saying, but it involved yesterday being another bad day on the morning bus for her. However, they let her on, and we exhaled and went to try to start today.
The feeling I keep feeling is "What now?" I feel like we have crossed some point---we are ready for more help. But there isn't more help. We did the steps we could. I wrote to her school asking for a meeting next week, to talk about how we are all going to handle Janey, and we will have that meeting. Tony is going to call Janey's psychiatrist today to see how soon we can see him. But except for those two steps, we have no idea what else to do. There is no number to call, no magical number you can call and say "Okay. I'm ready. I'm in need of help. Help me."
There is support. There is a lot of support, and without that, I would be sunk. I thank each and every one of you who reads this blog, and your support and kindness and compassion keep me going. I am grateful so very much to Janey's school---I know she is cared for and loved there, and I know they want the best for her. I am thankful for my family and friends.
But help, help in caring for Janey, help that will give us some respite, help that will make a long-term change in Janey's life, help that I could have called yesterday when I felt physically scared, the kind of help that would be available so easily if what Janey had was a physical ailment---that does not exist.
I thought a lot yesterday about when Freddy had a terrible asthma attack. We knew what to do. We took him to the emergency room. Within seconds, he was being helped, by a large team of professionals. He got top of the line care, which very well might have saved his life. He was admitted to the hospital. He got wonderful followup care.
Yesterday, in the horribly dark moments when Janey was attacking me, I had no idea what to do. If I had taken her to the emergency room, from everything I've ever heard and read, they would have had no idea what to do either. There is no team of professionals rushing in to help with mental health issues.
This is a long entry, a raw one. Maybe an angry one. I am starting to feel anger in a way I usually don't. What happens when you are ready for help? Is there any help?
Janey will get over this very rough patch. But it will come back again. It will keep coming back. And I guess we will keep doing what we are doing, getting by any way we can. What else can we do? I think the answer is----nothing else.
Janey slept very badly night before last. She was up at around 2 for good. By bus time in the morning, we were exhausted. The bus aide told Tony before Janey got on the bus that she has been crying a lot the day before. Tony said he hoped today would be better. We all hoped that.
I slept much of the day. At around 1 pm, I got a phone call from the school, from one of the program heads and Janey's teacher. They said Janey's behavior was at a level they had never seen before---frantic crying and screaming. They took her to the nurse, but as is almost always the case with Janey, she was physically healthy. They wondered if anything had been different at home. It hadn't, except that we too had certainly noticed Janey had entered one of her darker periods, after a long stretch of happy behavior. I felt like I had little to offer them in the way of ideas.
Getting Janey off the bus, I heard the driver say to her "Maybe NOW you'll stop crying!" I asked the drive and aide if she had been crying a lot, but they didn't answer---I don't know if they didn't hear me or were just too burnt out to answer. Janey came in and was happy for about 20 minutes. Then all hell broke loose.
Janey asked me for a video. I put it on. She evidently didn't like it. She lunged at me. She grabbed my hands and started bending back the fingers as hard as she could---a behavior that has showed up in the last few days for whatever reason. I pulled away my hand, and she grabbed my hair and pulled it as hard as she could. I pulled away and she lunged again, and tried to bite me. All the while, she was screaming a scream so loud and intense her back was arching. I could feel that her heart was pounding very fast, and she was breathing extremely hard.
I got away from her, feeling for the first time true fear that she was going to badly hurt me. I called Tony, and as we talked, she again lunged at me. I was in tears. Tony said he would get home as quickly as he could.
I gave Janey a dose of her evening medicine early, as her psychiatrist has said we could do in an emergency. As always, she took it willingly. She knows it calms her down, and I think she wanted to calm down. After about 20 minutes of screaming, she was calm enough to eat, and Tony got home a bit after that.
The evening featured off and on incidents, but the worst was over for the time being. Tony and I were drained. Janey was not. She stayed up until 10. Thankfully, she slept until 4---the 6 hour stretch was the best we've had in a while.
The morning from 4 on was tough but somewhat bearable, with the two of us here. When Tony put Janey on the bus, both the driver and aide talked to him. Unfortunately, there is a big language barrier, and with the loud bus engine, Tony was unsure what they were saying, but it involved yesterday being another bad day on the morning bus for her. However, they let her on, and we exhaled and went to try to start today.
The feeling I keep feeling is "What now?" I feel like we have crossed some point---we are ready for more help. But there isn't more help. We did the steps we could. I wrote to her school asking for a meeting next week, to talk about how we are all going to handle Janey, and we will have that meeting. Tony is going to call Janey's psychiatrist today to see how soon we can see him. But except for those two steps, we have no idea what else to do. There is no number to call, no magical number you can call and say "Okay. I'm ready. I'm in need of help. Help me."
There is support. There is a lot of support, and without that, I would be sunk. I thank each and every one of you who reads this blog, and your support and kindness and compassion keep me going. I am grateful so very much to Janey's school---I know she is cared for and loved there, and I know they want the best for her. I am thankful for my family and friends.
But help, help in caring for Janey, help that will give us some respite, help that will make a long-term change in Janey's life, help that I could have called yesterday when I felt physically scared, the kind of help that would be available so easily if what Janey had was a physical ailment---that does not exist.
I thought a lot yesterday about when Freddy had a terrible asthma attack. We knew what to do. We took him to the emergency room. Within seconds, he was being helped, by a large team of professionals. He got top of the line care, which very well might have saved his life. He was admitted to the hospital. He got wonderful followup care.
Yesterday, in the horribly dark moments when Janey was attacking me, I had no idea what to do. If I had taken her to the emergency room, from everything I've ever heard and read, they would have had no idea what to do either. There is no team of professionals rushing in to help with mental health issues.
This is a long entry, a raw one. Maybe an angry one. I am starting to feel anger in a way I usually don't. What happens when you are ready for help? Is there any help?
Janey will get over this very rough patch. But it will come back again. It will keep coming back. And I guess we will keep doing what we are doing, getting by any way we can. What else can we do? I think the answer is----nothing else.
Wednesday, October 23, 2013
Including those who will never catch up
I got to Janey's school a little early today. I try to do that now and then, although morning sluggishness and traffic often prevent it, but Janey loves the extra time to run around outside a bit. Today was beautiful, a lovely fall day. The morning play area was covered with leaves and sticks and acorns and all the things kids love like that. Some boys were playing football. Most everyone had on something Red Sox, in support of the home team playing in the Series tonight. It was one of those great Boston mornings. Janey was very happy running around. Every now and then she'd stop to pick up a leaf, or hold a stick, but mostly she ran, ran among the other kids, never quite interacting but still, I think, very aware of what was around her.
It made me think about inclusion, and how as kids get older, support for it seems to melt away among professionals advising parents. I've heard quite a few times now from professionals saying that inclusion isn't right for Janey, that she would be better served in a classroom specifically for autistic kids. I get the feeling that most people think inclusion is fine for little kids, but that when the kids are older, it doesn't benefit either the disabled child or their classmates.
I think this reflects society as a whole. We embrace, often, disabled children, but disabled teens or adults make us uneasy. There's probably a couple reasons for that. One is that we like to think we can "fix" kids. Sure, let them take a while to catch up. Let them be around other kids, and have it "cure" them. In time, they will be just like everyone else! They just need lots of love and patience! The other reason is kind of a vicious circle. Very few "normal" teens or adults spend much time with disabled people their own age, and that leads to fear and maybe even sometimes disgust. "Look, that big girl can't talk! She's making strange noises and waving her arms around! We better steer clear of her!" We're more tolerant of a range of odd behaviors in the young.
But as I watched Janey today, I thought about how important it is for inclusion to continue to be her life as she gets older, if at all possible. The reasons for this might be different than when she was younger. She's not going to catch up. She is probably understanding less and less of the mainstream curriculum. She's not going to suddenly be able to make meaningful friendships with the kids in her class. But in a way, that's all the more reason to have her around them. I want her to sense the Red Sox excitement, to watch the boys toss a football, to hear the excited chatter of early morning kids. I want her to have the fullest life she can, and because it's harder for her to access life's everyday joys than most, she needs to be around them MORE, not less. And it works both ways. As the kids she goes to school with get older, they are probably noticing her differences a lot more, and working out in their own minds what is going on with her. By seeing her every day, by being familiar with how she acts and what makes her happy and sad, they are learning that we don't just include people when they are little and cute. We include them for life, because they are human beings just like us, deserving of a full and interesting and meaningful life.
It seems like there is a point, an invisible line, where many professionals give up. They seem to say "We gave it a shot. It didn't work. She's never going to be part of real life. It's time to give up on that and find a place for her away from everyone else" I'm sure they would never consciously say that, but I've sensed a change of attitude from the medical and psychiatric professions. Not from her school, not from her teachers or administrators or aides or even the other students, but from the "experts". Maybe she represents a failure to them, someone that didn't get fixed. But watching her today, happy among the rest of the kids, content to be living life on her own terms, I think she deserves a chance to be included for life.
It made me think about inclusion, and how as kids get older, support for it seems to melt away among professionals advising parents. I've heard quite a few times now from professionals saying that inclusion isn't right for Janey, that she would be better served in a classroom specifically for autistic kids. I get the feeling that most people think inclusion is fine for little kids, but that when the kids are older, it doesn't benefit either the disabled child or their classmates.
I think this reflects society as a whole. We embrace, often, disabled children, but disabled teens or adults make us uneasy. There's probably a couple reasons for that. One is that we like to think we can "fix" kids. Sure, let them take a while to catch up. Let them be around other kids, and have it "cure" them. In time, they will be just like everyone else! They just need lots of love and patience! The other reason is kind of a vicious circle. Very few "normal" teens or adults spend much time with disabled people their own age, and that leads to fear and maybe even sometimes disgust. "Look, that big girl can't talk! She's making strange noises and waving her arms around! We better steer clear of her!" We're more tolerant of a range of odd behaviors in the young.
But as I watched Janey today, I thought about how important it is for inclusion to continue to be her life as she gets older, if at all possible. The reasons for this might be different than when she was younger. She's not going to catch up. She is probably understanding less and less of the mainstream curriculum. She's not going to suddenly be able to make meaningful friendships with the kids in her class. But in a way, that's all the more reason to have her around them. I want her to sense the Red Sox excitement, to watch the boys toss a football, to hear the excited chatter of early morning kids. I want her to have the fullest life she can, and because it's harder for her to access life's everyday joys than most, she needs to be around them MORE, not less. And it works both ways. As the kids she goes to school with get older, they are probably noticing her differences a lot more, and working out in their own minds what is going on with her. By seeing her every day, by being familiar with how she acts and what makes her happy and sad, they are learning that we don't just include people when they are little and cute. We include them for life, because they are human beings just like us, deserving of a full and interesting and meaningful life.
It seems like there is a point, an invisible line, where many professionals give up. They seem to say "We gave it a shot. It didn't work. She's never going to be part of real life. It's time to give up on that and find a place for her away from everyone else" I'm sure they would never consciously say that, but I've sensed a change of attitude from the medical and psychiatric professions. Not from her school, not from her teachers or administrators or aides or even the other students, but from the "experts". Maybe she represents a failure to them, someone that didn't get fixed. But watching her today, happy among the rest of the kids, content to be living life on her own terms, I think she deserves a chance to be included for life.
Monday, August 26, 2013
Trying
Last week was extremely tough with Janey, peaking on Wednesday, which would been in the running for one of the worst days for her and for us ever. She was in a fury all day. She lunged at me over and over, scratched herself badly, cried without stopping----it was incredibly tough. We went for a while to my friend Maryellen's house, which Janey usually loves, but this time, she was just as unhappy there, and extended her attempts to bite to Maryellen. The evening featured both boys needing rides from places far away, and Tony took her on one of the rides, even though that made it a ride straight through hell, because he could see I was a zombie by that point. Then I watched her, and she thankfully finally fell asleep at about 7:15.
Tony had called her psychiatrist that day, and thankfully he was able to see us Thursday at 10 am, on an emergency basis. Usually Tony takes Janey to see him on his own, but I went this time with them. I had a feeling what would happen, and it did. He suggested we try a medication I was resistant to in the past. It's a medication that is often used for ADHD, a high blood pressure medication that also works to slow down the system a little, as he put it, to "give her a minute to think before she acts" The main side effect, he said, was tiredness. At this point, tiredness didn't sound like something bad.
Now I'll stop her and answer the critics that are in my head, because they speak to me louder than anyone else does. Why give Janey medication? She already takes some, why give her more? Why not try something else? Aren't I doing some kind of experiment with her, using drugs at such a young age? Why can't I find a behavioral way to manage her behavior? And the underlying voice, the mean one, saying "What kind of mother are you, not to be able to handle your own little girl and to just turn to drugs to calm her down?" Well, voices of dissent, I invite you to read a few entries of this blog written when Janey is at her worst. This isn't annoying behavior. This is life-threatening behavior. If unchecked, I think Janey could honestly seriously injure herself, or others. At the very least, she isn't learning or thriving or having fun or being really anything a child should be able to be when she is hysterical, furious, lashing out, crying, not sleeping, for days on end. The most powerful argument I told myself---what if all of this was part of a "strictly medical" problem? What if I decided, because of my own beliefs, to not get her help with that medical problem? I think few people would support that. In fact, if that failure to get her help resulted in some dire end, I could be in major trouble for NOT getting her help. Why is it that because autism and the mental health issues it sometimes creates are not considered "medical" problems, getting medication to help them is often seen as giving up, as bad? I don't know, when I think of it that way.
Anyway, the medication has had mixed results. The very first day she took it, Friday, the result was sleep. Sleep most all day. I sat next to her all day, making sure she was okay otherwise. I think she'd been operating on a huge sleep deficit---I know we were. She slept Friday night fairly well too, and Saturday, slept much less (I had read the tiredness usually wears off quickly) and was generally in a better mood. There were still outbursts, but they were muted. Sunday, yesterday, was the huge big day for us. Tony and I took William to college (and a huge shoutout to him here! My baby boy, in college!) and Freddy watched Janey for eight hours. If Janey had not been a little better due to the medicine, I would not have left Janey with him, and I would have missed seeing William off, as I've missed so many milestones in his life. I'm very glad I was able to be with him. And Freddy's report on Janey? She was "great". She did sleep a couple hours, but those hours were made up for last night, when she was up from pretty much 1 am on. So not such a great result from the medication in terms of regulating her sleep. As I write now, she's been napping about an hour also.
I'm not sure if this medication is right long term, but we had to try it. The psychiatrist mentioned that in the mid-term future, we will probably be looking at mood stablelizers for her. I know what that means. I know children are no longer diagnosed as bi-polar, but if they were, I know Janey would be so diagnosed. Her cyclical highs and lows are very, very, very pronounced. I know, from a cousin and a friend's husband that are/were bipolar, or manic-depressive, that it's one of the closest to being purely medical of the psychiatric diseases. It is not treatment, well anyway, without medication, from what I have seen (and they were both severe, severe cases) If Janey is bipolar in addition to her other challenges, I will welcome medication at the age that becomes appropriate.
And so we go on. We are trying. I don't know if I am doing the right thing or not. I never do. I only know I have to try, to try to help Janey live a decent and meaningful life, and to stay alive myself as I do so.
Tony had called her psychiatrist that day, and thankfully he was able to see us Thursday at 10 am, on an emergency basis. Usually Tony takes Janey to see him on his own, but I went this time with them. I had a feeling what would happen, and it did. He suggested we try a medication I was resistant to in the past. It's a medication that is often used for ADHD, a high blood pressure medication that also works to slow down the system a little, as he put it, to "give her a minute to think before she acts" The main side effect, he said, was tiredness. At this point, tiredness didn't sound like something bad.
Now I'll stop her and answer the critics that are in my head, because they speak to me louder than anyone else does. Why give Janey medication? She already takes some, why give her more? Why not try something else? Aren't I doing some kind of experiment with her, using drugs at such a young age? Why can't I find a behavioral way to manage her behavior? And the underlying voice, the mean one, saying "What kind of mother are you, not to be able to handle your own little girl and to just turn to drugs to calm her down?" Well, voices of dissent, I invite you to read a few entries of this blog written when Janey is at her worst. This isn't annoying behavior. This is life-threatening behavior. If unchecked, I think Janey could honestly seriously injure herself, or others. At the very least, she isn't learning or thriving or having fun or being really anything a child should be able to be when she is hysterical, furious, lashing out, crying, not sleeping, for days on end. The most powerful argument I told myself---what if all of this was part of a "strictly medical" problem? What if I decided, because of my own beliefs, to not get her help with that medical problem? I think few people would support that. In fact, if that failure to get her help resulted in some dire end, I could be in major trouble for NOT getting her help. Why is it that because autism and the mental health issues it sometimes creates are not considered "medical" problems, getting medication to help them is often seen as giving up, as bad? I don't know, when I think of it that way.
Anyway, the medication has had mixed results. The very first day she took it, Friday, the result was sleep. Sleep most all day. I sat next to her all day, making sure she was okay otherwise. I think she'd been operating on a huge sleep deficit---I know we were. She slept Friday night fairly well too, and Saturday, slept much less (I had read the tiredness usually wears off quickly) and was generally in a better mood. There were still outbursts, but they were muted. Sunday, yesterday, was the huge big day for us. Tony and I took William to college (and a huge shoutout to him here! My baby boy, in college!) and Freddy watched Janey for eight hours. If Janey had not been a little better due to the medicine, I would not have left Janey with him, and I would have missed seeing William off, as I've missed so many milestones in his life. I'm very glad I was able to be with him. And Freddy's report on Janey? She was "great". She did sleep a couple hours, but those hours were made up for last night, when she was up from pretty much 1 am on. So not such a great result from the medication in terms of regulating her sleep. As I write now, she's been napping about an hour also.
I'm not sure if this medication is right long term, but we had to try it. The psychiatrist mentioned that in the mid-term future, we will probably be looking at mood stablelizers for her. I know what that means. I know children are no longer diagnosed as bi-polar, but if they were, I know Janey would be so diagnosed. Her cyclical highs and lows are very, very, very pronounced. I know, from a cousin and a friend's husband that are/were bipolar, or manic-depressive, that it's one of the closest to being purely medical of the psychiatric diseases. It is not treatment, well anyway, without medication, from what I have seen (and they were both severe, severe cases) If Janey is bipolar in addition to her other challenges, I will welcome medication at the age that becomes appropriate.
And so we go on. We are trying. I don't know if I am doing the right thing or not. I never do. I only know I have to try, to try to help Janey live a decent and meaningful life, and to stay alive myself as I do so.
Saturday, June 12, 2010
The hardest days, the hardest decisions
This is a hard post for me to write. I've been putting it off and even thinking about just giving up this whole blog thing. But I want to be honest and tell about the last week or so.
Starting about a week ago Thursday, Janey entered some kind of incredibly tough phase. She was literally screaming all day and most of the night. I don't mean fussing, crying off and on, I mean screaming, hysterically, all day, all but a few hours of the night. She would stop only to say things like "I WANT MAMA" even if I was right there, "I WANT A BABA" only to toss it aside if we gave her one "I WANT A VIDEO" only to cry at anything we put on. We were getting no sleep. We were literally in despair, trying to figure out how to make her happy. It got worse and worse and worse as the days went on. Finally on Wednesday, we got a call from the school that they thought she was sick. I knew she wasn't sick, physically anyway, but I knew how it could seem that way. I picked her up early, and that was the worst day of all. She was so upset that whole afternoon and night, and slept almost not at all. Tony and I were just looking at each other without a single idea what to do next. The boys were unable to do homework, we were not able to have even a minute to talk as a family, and meanwhile Janey was in such mental pain it was heartbreaking to watch. Tony stayed home from work Thursday---he hadn't slept. We called her pediatrician first thing---to rule out anything physical and to just ask for any help he might have. She was so upset in the waiting room that nurses kept coming out to reassure us we would see the doctor soon, even though it was only a few minutes wait. When her doctor saw her, he was visibly shaken, and he's been a doctor for about 30 years and has known our family since the day William was born. He did an exam---as I thought, her ears and mouth and lungs were all fine. He said he thought it was possible she was hearing voices---based on how she was holding her ears and just based on a hunch, from being a doctor for a long time. I've never, ever seen him go out on a limb like that, and I am inclined to think he might have been right. He put in a call right away to a psychiatrist, and said he didn't want it to be more than 24 hours before she was seen. We went home and tried to comfort her, without success. Finally, we got a call from him that evening---he'd talked to the psychiatrist, who will see her Monday, and the psych. recommended we start her on medication---Risperdal. I knew a lot about Risperdal---it's the drug I figured would be recommended if one was. And it was exactly the drug I was completely opposed to for a long time. But the week in what could only be called near-hell, for both Janey and us, made me realize that it was my own reasons, and not the best interests of Janey, that was keeping me from being open to it. No-one, NO-ONE, could live long term the way we lived that week. And so I said, yes. We will try it.
Tony picked it up that night, and we gave her her first dose that bedtime. She went to sleep after about 45 minutes, and slept 6 hours---much longer than any recent night. Then she woke up, but didn't scream, for about 3 hours. The next day was mixed. She had a long time without crying in the morning, but by afternoon was back to a great deal of screaming, and the evening was very tough. We gave her the second dose that night. She slept from 8pm until 4am, then woke up screaming. She cried for about 2 hours. Then....no crying all day. NONE. In fact, a great deal of smiling--a happier, more relaxed Janey than I think I have ever seen. I was holding my breath. I really deep inside did not WANT the medication to work, so I could say I tried it and it did no good. But it would be impossible not to notice the change today. We even went to dinner at fast food Mexican. Janey was happy the whole time, and happy to go to a store afterward, and happy in the car, and talkative, and answering questions, and just plain RELAXED. I have never really seen her relaxed.
I don't think it will last. It's too much for a medication to do. But Tony and I both said it has taught us something valuable---to see that autism, or retardation, is not the thing to fear. If Janey can be happy, can enjoy life, can have normal emotions and can feel what it's like to be relaxed, then all the rest we can take. It doesn't matter much if she ever reads, or "passes" as normal. If we can all be together as a family and enjoy each other's company, then all the rest is icing on the cake.
I still don't like the idea of giving her medication. But I know people sometimes need medication. I would be very unhealthy without daily thyroid replacement, and Carrie would not probably be around at all. Tony can't live without insulin. Freddy would be gone without his asthma medication, quite literally and heartbreakingly. And so perhaps Janey too has something missing in her makeup which medication can help with. I'm not sure yet. But I can almost hope so.
Starting about a week ago Thursday, Janey entered some kind of incredibly tough phase. She was literally screaming all day and most of the night. I don't mean fussing, crying off and on, I mean screaming, hysterically, all day, all but a few hours of the night. She would stop only to say things like "I WANT MAMA" even if I was right there, "I WANT A BABA" only to toss it aside if we gave her one "I WANT A VIDEO" only to cry at anything we put on. We were getting no sleep. We were literally in despair, trying to figure out how to make her happy. It got worse and worse and worse as the days went on. Finally on Wednesday, we got a call from the school that they thought she was sick. I knew she wasn't sick, physically anyway, but I knew how it could seem that way. I picked her up early, and that was the worst day of all. She was so upset that whole afternoon and night, and slept almost not at all. Tony and I were just looking at each other without a single idea what to do next. The boys were unable to do homework, we were not able to have even a minute to talk as a family, and meanwhile Janey was in such mental pain it was heartbreaking to watch. Tony stayed home from work Thursday---he hadn't slept. We called her pediatrician first thing---to rule out anything physical and to just ask for any help he might have. She was so upset in the waiting room that nurses kept coming out to reassure us we would see the doctor soon, even though it was only a few minutes wait. When her doctor saw her, he was visibly shaken, and he's been a doctor for about 30 years and has known our family since the day William was born. He did an exam---as I thought, her ears and mouth and lungs were all fine. He said he thought it was possible she was hearing voices---based on how she was holding her ears and just based on a hunch, from being a doctor for a long time. I've never, ever seen him go out on a limb like that, and I am inclined to think he might have been right. He put in a call right away to a psychiatrist, and said he didn't want it to be more than 24 hours before she was seen. We went home and tried to comfort her, without success. Finally, we got a call from him that evening---he'd talked to the psychiatrist, who will see her Monday, and the psych. recommended we start her on medication---Risperdal. I knew a lot about Risperdal---it's the drug I figured would be recommended if one was. And it was exactly the drug I was completely opposed to for a long time. But the week in what could only be called near-hell, for both Janey and us, made me realize that it was my own reasons, and not the best interests of Janey, that was keeping me from being open to it. No-one, NO-ONE, could live long term the way we lived that week. And so I said, yes. We will try it.
Tony picked it up that night, and we gave her her first dose that bedtime. She went to sleep after about 45 minutes, and slept 6 hours---much longer than any recent night. Then she woke up, but didn't scream, for about 3 hours. The next day was mixed. She had a long time without crying in the morning, but by afternoon was back to a great deal of screaming, and the evening was very tough. We gave her the second dose that night. She slept from 8pm until 4am, then woke up screaming. She cried for about 2 hours. Then....no crying all day. NONE. In fact, a great deal of smiling--a happier, more relaxed Janey than I think I have ever seen. I was holding my breath. I really deep inside did not WANT the medication to work, so I could say I tried it and it did no good. But it would be impossible not to notice the change today. We even went to dinner at fast food Mexican. Janey was happy the whole time, and happy to go to a store afterward, and happy in the car, and talkative, and answering questions, and just plain RELAXED. I have never really seen her relaxed.
I don't think it will last. It's too much for a medication to do. But Tony and I both said it has taught us something valuable---to see that autism, or retardation, is not the thing to fear. If Janey can be happy, can enjoy life, can have normal emotions and can feel what it's like to be relaxed, then all the rest we can take. It doesn't matter much if she ever reads, or "passes" as normal. If we can all be together as a family and enjoy each other's company, then all the rest is icing on the cake.
I still don't like the idea of giving her medication. But I know people sometimes need medication. I would be very unhealthy without daily thyroid replacement, and Carrie would not probably be around at all. Tony can't live without insulin. Freddy would be gone without his asthma medication, quite literally and heartbreakingly. And so perhaps Janey too has something missing in her makeup which medication can help with. I'm not sure yet. But I can almost hope so.
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