Our Sunday morning---Janey is playing "Born to Boogie" by Hank Williams Jr. over and over on the iPod. Tony is cooking his non-stop weekend breakfast of bacon, greens and toast. Coffee is flowing freely. And I am thinking that this day, this week, is a preview of the rest of our lives.
It's just Tony, Janey and me here. William is at college, and Freddy is, amazingly, in Venice, Italy. Thanks to the generosity of his school and his uncle, he's on a school trip through Italy for the week. And we are getting a glimpse of the life we will most likely live until we are no longer here to live it.
It's not a bad life, right now. Janey has been in a good mood for a few weeks now. It's not a perfect mood---she can fly into a rage several times a day, and she is often very upset if what she asks for doesn't happen immediately. But compared to how her moods can be, it's wonderful. She loves to be on the go, and she and Tony spent yesterday on numerous errands, which she enjoyed very much. I miss the boys very much, but I know they are happy, and I admit it's somehow freeing to have only one child to take care of.
But forever? That is the part that sometimes feels very tough to think about. There's a chance, of course, that someday Janey will be in long term care. But I like to live in reality. From all I read, it's very, very hard to find care for someone like Janey. Only about 15% of autistic adults that can't live on their own have housing not with their parents, from what I've read, and most of those are adults able to function at a lot higher level than Janey. Janey would need round the clock care. That is expensive and rare.
From what I am told, I need to start right now working toward the goal of Janey living away from home. The route for doing so is not something I'm ready for at this point---it would involve giving up more control of her care that I am willing to do right now. Maybe I'm being shortsighted. There were certainly days last late fall I was ready to do just about anything needed. But lately, the new medication and the new behavior plan at school seem to have calmed Janey. I can picture, if things stayed as they are right now, a life that involves Janey home with us for good
Yet even as I write this, Janey comes over to me and says "Want to snuggle?" This means---stop whatever you are doing right now and give me undivided attention. If I tell her to wait, she screams, hits me, freaks out. I get her dressed, and while doing so, ask her to get me a pullup, something she easily understands and can do, and she gets hysterical at the request. After ten minutes, I am exhausted. But incidents like that blend into the day, and if they don't last all day, I still think of the day as a good day. I think that is why even on a "good" day, I am tired, at the end of my rope, by the time Janey finally goes to sleep.
Life with Janey feels full of impossible choices. Do we push all out for away from home care for Janey, even though we are unsure that is what we need right now, so we'll have a better chance in the future? Do we resign ourselves to a future that is quite limited by Janey's needs, or do we do what we can to preserve a life that is fuller for us, but uncertain for her? Do we gamble on our health remaining good enough to care for her long term?
There are no easy answers. And our choices are far from unique. Around the world, so many others are living a life like ours---with children getting old enough to start the questioning---will this be how it is forever? Sometimes, I admit, I wish myself back to William or Freddy's age. I wish I were in college, or on a tour of Italy, my life ahead of me. But I am here. I need to figure out how to make this life work for all of us. To all of you out there facing the same questions---best of luck.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label residential placements. Show all posts
Showing posts with label residential placements. Show all posts
Sunday, April 19, 2015
Friday, January 30, 2015
After the Blizzard
Janey just took off on the school bus, her first day of school since Monday. As you probably know, we had a blizzard here this week. And as you probably can guess, Janey did not enjoy the break in the routine much.
The first few days were manageable. Tony was home, as his work was closed too, and together we all worked hard to keep Janey busy and distracted. There were plenty of times of screaming and tantrums, but some better times too---watching videos, reading books and as often as we could, tiny trips outside to see all the snow and to give her a change of scenery.
As is often the case, though, after two days, Janey had had enough. I think she probably felt she had lived through some bizarre middle-of-the-week weekend, and Thursday, it was supposed to be over. Whatever it was, she woke up in a terrible mood yesterday. Before 5 am, she had lashed out at me over and over---hitting me, bending back my fingers, kicking me and trying to bite me. It was not pretty. When Tony came to help, she hit him also, which is less common. Her rage went on and on, and Tony eventually decided to take another day off. I was upset he was going to miss work, but to be truthful, I don't think I could have handled her all day by myself.
The day was very long. Janey would have a calm period, but then inevitably, we'd have to say no to some request, and she would freak out. Or she'd start her "snuggle on Mama's bed" routine, which has become a complex dance of us moving from one bed to another over and over, with rules that are known only to Janey and which I constantly break, causing her to be furious. I lie down for a minute with her, and then she said "Want to snuggle on THAT BED OVER THERE" which sometimes means I'm supposed to move to that bed, sometimes means we both are, and sometimes means just she is. I guess wrong a lot. It might sound funny, but repeated twenty times a day, it isn't.
I'm sure you might be reading this and thinking "Boy, they give in to her a lot". Well, we don't, really. She makes requests all day every day, and probably 90% of the time, the answer is no. But when it's something we CAN do, we try to do it. However, it's very rare that that actually works. But what are we supposed to do? If Janey asks to hear a book, after being told no to all kinds of other things, I try reading her the book. Of course, I read it wrong, or read the wrong book, or read it at the wrong pace, or say the words a little differently than she is expecting, and she rages.
More and more, Tony and I feel overwhelmed. Caring for Janey is a two person job at the least---often more. We are left with very little time for the minimal needs to live. It's hard to find time to cook, to do chores, to take a second to regroup.
We are pursuing help. I've taken some steps hopefully to work on the Mass Health mix-up, and we have put in an application for the Lurie Center at Mass General hospital---a clinic we've heard good things about. We are going to have a meeting at school soon. We are ready to accept in-home help even if it isn't respite, if we can get that.
But our experience with Janey's hospitalization has left us realizing that the help out there is pretty limited. When the hospital discharged her with NO help in a discharge plan---well, that was an eye-opener. We need respite, in whatever form we can find it. We are open to a private or residential school, if such a thing is possible. The short school day she currently attends, although it's a wonderful school and is staffed with great people, is not enough for her. We have realized that in the last month or so. This current setup is just not working. None of us are living a life that feels anywhere close to sustainable. But saying all that is very, very different than actually getting the help, despite what seems to be the perception. The state agency that deals with developmentally disabled kids has nothing to offer at this time but a referral back to the local autism agency. They are well-meaning, but offer really only things like occasional parties outings. Even if the Mass Health is fixed, at this point, they don't cover autism services, nor does our other insurance. There is simply almost nothing available for help.
That truth--that so little help is available---is something very hard for people not living this life to accept. I think sometimes people want to think there's all kinds of help we are not taking, out of pride or stubbornness or something. I think people feel better thinking there is help there which we could get if we REALLY wanted to. But those of us living the lives of autism parents know the truth. There is not help, not meaningful help.
I don't want to be discouraging, but the truth is, I'm discouraged. I'm discouraged most of all for Janey. She is not happy. I'm discouraged for my sons, who must deal always with turmoil at home. I am discouraged for Tony and for me. Increasingly, Janey's needs are standing in the way of such basic things as making a living, sleep and health. The stress we feel at all times is indescribable.
And so, after the blizzard, we are left with the reality of our lives.
The first few days were manageable. Tony was home, as his work was closed too, and together we all worked hard to keep Janey busy and distracted. There were plenty of times of screaming and tantrums, but some better times too---watching videos, reading books and as often as we could, tiny trips outside to see all the snow and to give her a change of scenery.As is often the case, though, after two days, Janey had had enough. I think she probably felt she had lived through some bizarre middle-of-the-week weekend, and Thursday, it was supposed to be over. Whatever it was, she woke up in a terrible mood yesterday. Before 5 am, she had lashed out at me over and over---hitting me, bending back my fingers, kicking me and trying to bite me. It was not pretty. When Tony came to help, she hit him also, which is less common. Her rage went on and on, and Tony eventually decided to take another day off. I was upset he was going to miss work, but to be truthful, I don't think I could have handled her all day by myself.
The day was very long. Janey would have a calm period, but then inevitably, we'd have to say no to some request, and she would freak out. Or she'd start her "snuggle on Mama's bed" routine, which has become a complex dance of us moving from one bed to another over and over, with rules that are known only to Janey and which I constantly break, causing her to be furious. I lie down for a minute with her, and then she said "Want to snuggle on THAT BED OVER THERE" which sometimes means I'm supposed to move to that bed, sometimes means we both are, and sometimes means just she is. I guess wrong a lot. It might sound funny, but repeated twenty times a day, it isn't.
I'm sure you might be reading this and thinking "Boy, they give in to her a lot". Well, we don't, really. She makes requests all day every day, and probably 90% of the time, the answer is no. But when it's something we CAN do, we try to do it. However, it's very rare that that actually works. But what are we supposed to do? If Janey asks to hear a book, after being told no to all kinds of other things, I try reading her the book. Of course, I read it wrong, or read the wrong book, or read it at the wrong pace, or say the words a little differently than she is expecting, and she rages.
More and more, Tony and I feel overwhelmed. Caring for Janey is a two person job at the least---often more. We are left with very little time for the minimal needs to live. It's hard to find time to cook, to do chores, to take a second to regroup.
We are pursuing help. I've taken some steps hopefully to work on the Mass Health mix-up, and we have put in an application for the Lurie Center at Mass General hospital---a clinic we've heard good things about. We are going to have a meeting at school soon. We are ready to accept in-home help even if it isn't respite, if we can get that.
But our experience with Janey's hospitalization has left us realizing that the help out there is pretty limited. When the hospital discharged her with NO help in a discharge plan---well, that was an eye-opener. We need respite, in whatever form we can find it. We are open to a private or residential school, if such a thing is possible. The short school day she currently attends, although it's a wonderful school and is staffed with great people, is not enough for her. We have realized that in the last month or so. This current setup is just not working. None of us are living a life that feels anywhere close to sustainable. But saying all that is very, very different than actually getting the help, despite what seems to be the perception. The state agency that deals with developmentally disabled kids has nothing to offer at this time but a referral back to the local autism agency. They are well-meaning, but offer really only things like occasional parties outings. Even if the Mass Health is fixed, at this point, they don't cover autism services, nor does our other insurance. There is simply almost nothing available for help.
That truth--that so little help is available---is something very hard for people not living this life to accept. I think sometimes people want to think there's all kinds of help we are not taking, out of pride or stubbornness or something. I think people feel better thinking there is help there which we could get if we REALLY wanted to. But those of us living the lives of autism parents know the truth. There is not help, not meaningful help.
I don't want to be discouraging, but the truth is, I'm discouraged. I'm discouraged most of all for Janey. She is not happy. I'm discouraged for my sons, who must deal always with turmoil at home. I am discouraged for Tony and for me. Increasingly, Janey's needs are standing in the way of such basic things as making a living, sleep and health. The stress we feel at all times is indescribable.
And so, after the blizzard, we are left with the reality of our lives.
Monday, June 9, 2014
Tornado Janey
In the past, Janey's bad moods often felt like hurricanes. We could sense they were coming, and once they arrived, they lasted a bit of a while. Then, when they left, they usually were followed by a good mood, like the nice weather that often comes after a hurricane. But lately, her moods feel more like tornadoes. They arrive suddenly and violently, doing intense damage, and then lift up to the sky and leave a shattered day behind, even if it's sunny and nice out.
Yesterday was a huge case in point. We went for a family ride and got some Chipolte, everyone's favorite. We were driving home, all very cheerful. I was feeling almost on a high, with my whole family in the car, joking and laughing and having a truly good time. I actually thought "This is great! This is what it's all about" And then, without warning, out of the blue, Janey attacked Freddy. She screamed and lunged at him, and bit him. She didn't break the skin, but it was scary. She was in a fury, hysterical. Freddy handled it well, but was in true pain. He did what we usually do for biting, yelled very loudly "NO BITING! STOP IT!" It is all that has ever seemed to work, despite other advice I've often read about ignoring the biting. That feels inorganic, impossible, and the yelling startles Janey. She did pull away from him, but reminded completely hysterical. We got home a minute or two later, all shaken.
Later that day, again, Janey lashed out, this time at William. Again, with no prior warning. Between these two times, she was fairly cheerful. I did what I have been trying to do lately, talked to her assuming she understands everything. I explained why we don't bite, told her that her brothers have feelings just like her, told her that it hurts them. She listened. She wasn't eager to say she was sorry to Freddy, but she did, finally. And then just hours later---the William bite.
I hate to write about Janey biting. I debated all day whether I would or not. But in the end, I want to be honest here. After a recent post, I had several people tell me it helped to know they weren't alone in dealing with these very tough behaviors. We all want to present our children in the best light. We all want to be positive, when we can. But that sometimes results in a blog world where Janey's particular type of autism is not spoken of. I can't do that, to myself or to others with children like Janey.
Tony and I feel hung over today. We are feeling very heavy-hearted. It will get better---it always does. We bounce back and regain our hope. But last night, after the bite, William told me he felt scared of Janey for the first time ever. William is almost 20, a tall big guy. But I didn't dismiss his fears. When Janey's outbursts come out of no-where, it's hard not to feel scared. We are feeling like we just don't know what to do next. I hope Janey doesn't carry this behavior into school. But we've been told, to get more help for her, sometimes that is what it takes. I don't want that. I don't think that should be the way to get help. And by help, sometimes I am starting to admit to myself I mean a possible residential placement. Those words make me cry, every single time. They make me despair. It's not what I want. I can't stand the thought of it. But maybe Janey needs more help than we can give her.
I hope what I am feeling today is how one feels after a tornado impacts them. Of course you feel overwhelmed, worried, shaken. But after a few days or weeks, you start to regroup. That is what we have always done, and that is what I want to keep doing. Anything else is so very hard to imagine.
Yesterday was a huge case in point. We went for a family ride and got some Chipolte, everyone's favorite. We were driving home, all very cheerful. I was feeling almost on a high, with my whole family in the car, joking and laughing and having a truly good time. I actually thought "This is great! This is what it's all about" And then, without warning, out of the blue, Janey attacked Freddy. She screamed and lunged at him, and bit him. She didn't break the skin, but it was scary. She was in a fury, hysterical. Freddy handled it well, but was in true pain. He did what we usually do for biting, yelled very loudly "NO BITING! STOP IT!" It is all that has ever seemed to work, despite other advice I've often read about ignoring the biting. That feels inorganic, impossible, and the yelling startles Janey. She did pull away from him, but reminded completely hysterical. We got home a minute or two later, all shaken.
Later that day, again, Janey lashed out, this time at William. Again, with no prior warning. Between these two times, she was fairly cheerful. I did what I have been trying to do lately, talked to her assuming she understands everything. I explained why we don't bite, told her that her brothers have feelings just like her, told her that it hurts them. She listened. She wasn't eager to say she was sorry to Freddy, but she did, finally. And then just hours later---the William bite.
I hate to write about Janey biting. I debated all day whether I would or not. But in the end, I want to be honest here. After a recent post, I had several people tell me it helped to know they weren't alone in dealing with these very tough behaviors. We all want to present our children in the best light. We all want to be positive, when we can. But that sometimes results in a blog world where Janey's particular type of autism is not spoken of. I can't do that, to myself or to others with children like Janey.
Tony and I feel hung over today. We are feeling very heavy-hearted. It will get better---it always does. We bounce back and regain our hope. But last night, after the bite, William told me he felt scared of Janey for the first time ever. William is almost 20, a tall big guy. But I didn't dismiss his fears. When Janey's outbursts come out of no-where, it's hard not to feel scared. We are feeling like we just don't know what to do next. I hope Janey doesn't carry this behavior into school. But we've been told, to get more help for her, sometimes that is what it takes. I don't want that. I don't think that should be the way to get help. And by help, sometimes I am starting to admit to myself I mean a possible residential placement. Those words make me cry, every single time. They make me despair. It's not what I want. I can't stand the thought of it. But maybe Janey needs more help than we can give her.
I hope what I am feeling today is how one feels after a tornado impacts them. Of course you feel overwhelmed, worried, shaken. But after a few days or weeks, you start to regroup. That is what we have always done, and that is what I want to keep doing. Anything else is so very hard to imagine.
Subscribe to:
Posts (Atom)