The last week, I've been thinking a lot about autism acceptance and what it means to Janey and to our family. I have done some reading about it, prompted in part by my friend's great blog, On the Train With Sophie. There is so much about whole autism acceptance movement that fits with my own beliefs, although there are parts of the idea I struggle with. I'm realizing that, like with any philosophy, I need to consider my own child and her own needs over what might be the "rules" of acceptance, and also realizing that what I perceive as the "rules" might be wrong. All this is a long-winded way to lead up to my thoughts about how Janey learns and how best to respect her time.
We had a meeting at Janey's school yesterday, and as always, I was impressed with the level of caring and thoughtfulness of those working with Janey. I brought up at the meeting something that has been on my mind a lot---Janey's relative lack of academic achievement. Despite many years of schooling and many hours of direct ABA type instruction, Janey's learning as measured on concrete academic tests would be considered by most anyone to be extremely slow, if not static. Janey doesn't consistently know her letters or numbers. She can't really count objects. She shows very little understanding of shapes or colors. She can't read, at least that she shows us except for rare glimpses. She can sometimes write her name, although she hasn't done that much lately. She has never drawn anything recognizable. Her speech, although unique and interesting, is rarely useful in conveying anything but basic wants. I have to conclude that at least based on evidence we have right now, Janey is not progressing academically in much of any meaningful way.
However, Janey certainly can learn. I can think of hundreds of ways she's learned over the years, in areas she is motivated to learn. She can put the TV on the channel for videos, pick through all her videos to find exactly the one she wants, put it on, remember what is coming next, sing along with all the songs and recite all of the dialogue, all that with ease. There's a lot of learning shown right there. If she wants her father to cook a particular dish, she can gather all the ingredients needed and bring them to him, including spices and sauces. She can use YouTube with ease. She learns songs after hearing them once, and can sing them back in perfect tune with all the lyrics correct. She has a very good sense of direction. She can go into any store she's been in before, and if there's something she likes on the shelves, find it again---including big stores like the huge Whole Foods near us. She can imitate dances she sees on TV, far far better than I would ever be able to do. She knows hundreds of nursery rhymes. She knows just what time Daddy is supposed to be home. I could go on and on. In many ways, Janey is a very smart girl.
So---is it the best use of her time to work on academics? Or is having her continue to try to learn to do traditional academics a basic disrespect for who she is? Is accepting her also accepting what and how she learns?
These are questions I honestly can't answer. But even if I could, how would I go forward? For the first time ever in Janey's life, I've had thoughts lately about homeschooling. Maybe it's because overall, Janey's mood has been good for quite a long period. But still---I truly don't think I have the energy to homeschool her. My latest thyroid test showed that again, my thyroid is working very little if at all. I've been extremely tired. Some days, I can barely hang on for the 3 or so hours between when Janey gets home and Tony gets home. And the truth is---I have very much liked Janey's schools and teachers over the years. I know they care for her, love her and want the best for her. But schools are set up to teach academics. I wonder how it feels for Janey, always working on something that is so hard for her, or if not so hard, something she has no interest in.
I am nowhere near ready to make any real changes in Janey's life, not at least outward ones. But I think I'm making an inward change. For me anyway, autism acceptance means seeing what Janey is competent at, what she enjoys, what her passions are, and valuing those things, more than looking at what she doesn't excel at and trying to change her. Janey may never read. She may never carry on typical conversations. She may never understand money. But by golly, she can do some things better than almost anyone you'd ever meet. I am currently more up to date on the latest music than I have been since the early eighties, just from looking up the songs Janey sings after hearing them (I think) on the radio on the bus. I am expending my food horizons---if Janey can enjoy sauteed kale with Korean hot sauce, I should at least give it a try. I'm collecting new nursery rhyme books to try to find a few she doesn't already know. Janey is leading the way for me in a lot of ways.
I want a future for Janey that makes best use of her strengths and joys and passions, not her areas of weakness. That, for me, is the meaning of autism acceptance.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Thursday, February 26, 2015
Friday, February 20, 2015
Janey with a cold
For most kids, getting a cold wouldn't be too remarkable an event. But Janey almost never gets sick. She honestly has gone years without a sick day from school, years without a fever, years without a cold. It's quite remarkable.
Yesterday, however, she woke up obviously sick. She was coughing a huge cough, and her nose was running. And she wasn't happy, not at all. I thought about what my mother has said---if you didn't know what a cold was, you'd think it was something very serious based on how it makes you feel. And Janey had next to no frame of reference for her cold. I can imagine how scary it felt for her.
She spent much of yesterday in fury and tears. After about a month of fantastic behavior, it was hard to see. When she is good, she is SO good that it's almost hard to imagine how bad it can get, although you would think we'd have better memories than that. She came to my bed first thing in the morning and immediately bit me, which she hasn't done in quite a while. I had to pull her off me. She didn't bite again, but there was a very lot of screaming and hitting and fury, and some of Janey's unique brand of angry mischief. She took a two liter bottle of soda and poured it in my dishwater, she threw ice cream at the television, things like that. It was a long day, but I kept reminding myself how she must have been feeling.
This morning, despite her cold, which was about the same, we decided to take her with us when Tony drove me to the doctors for a physical. That was a good decision. It seemed to reset her mood. She was all smiles, and although she's been acting out a bit more today than on her very best days, overall, she is far happier than yesterday.
This cold has led me to think about a few theories I have about Janey's autism. I truly think that something autoimmune is at least a very big contributor in Janey's particular case to her autism. Our family is auto-immune central. Just about every one of us on both sides has something going on that is an auto-immune issue. I think maybe Janey has some small illness around the age of 2 and a half, and her body hugely over-reacted. I can't remember the illness, but it wouldn't have had to be anything big. It was the reaction that was big, way too big. I think that same overactive immune system keeps her from getting sick, even when she's exposed to all the illnesses other kids in her classes have, or when she was at the hospitals she was at.
And I actually think this cold might be a good sign. Maybe Janey's body is letting down its guard a little. Maybe it's no coincidence she finally got sick now, after such a great stretch of behavior.
Of course, I'm not a doctor, or a scientist, or a researcher. I am sure there might be all kinds of flaws in this theory, and I might be totally off, but it's a theory that to me, anyway, makes sense.
In terms of how we react to Janey, I've been thinking about how calmer behavior on her part leads to calmer behavior on our part. If Janey had been in one of her very tough moods for a month leading up to this cold, we would have been much more discouraged by her behavior yesterday. But at least for a day, we did pretty well handling it, I think. We stuck to what we know works with her---keeping her active (which would have been hard if the illness was more severe than a cold), keeping our speech tones calm, keeping her well fed, telling her verbally what we planned to do and where we were going even if we were only leaving the room for a minute (that's especially important with Daddy!)
I hope Janey's cold is a quick one, and she goes back to her healthy ways, but I wouldn't mind a little illness here and there if it means her body is relaxing a bit, physically and mentally.
Yesterday, however, she woke up obviously sick. She was coughing a huge cough, and her nose was running. And she wasn't happy, not at all. I thought about what my mother has said---if you didn't know what a cold was, you'd think it was something very serious based on how it makes you feel. And Janey had next to no frame of reference for her cold. I can imagine how scary it felt for her.
She spent much of yesterday in fury and tears. After about a month of fantastic behavior, it was hard to see. When she is good, she is SO good that it's almost hard to imagine how bad it can get, although you would think we'd have better memories than that. She came to my bed first thing in the morning and immediately bit me, which she hasn't done in quite a while. I had to pull her off me. She didn't bite again, but there was a very lot of screaming and hitting and fury, and some of Janey's unique brand of angry mischief. She took a two liter bottle of soda and poured it in my dishwater, she threw ice cream at the television, things like that. It was a long day, but I kept reminding myself how she must have been feeling.
This morning, despite her cold, which was about the same, we decided to take her with us when Tony drove me to the doctors for a physical. That was a good decision. It seemed to reset her mood. She was all smiles, and although she's been acting out a bit more today than on her very best days, overall, she is far happier than yesterday.
This cold has led me to think about a few theories I have about Janey's autism. I truly think that something autoimmune is at least a very big contributor in Janey's particular case to her autism. Our family is auto-immune central. Just about every one of us on both sides has something going on that is an auto-immune issue. I think maybe Janey has some small illness around the age of 2 and a half, and her body hugely over-reacted. I can't remember the illness, but it wouldn't have had to be anything big. It was the reaction that was big, way too big. I think that same overactive immune system keeps her from getting sick, even when she's exposed to all the illnesses other kids in her classes have, or when she was at the hospitals she was at.
And I actually think this cold might be a good sign. Maybe Janey's body is letting down its guard a little. Maybe it's no coincidence she finally got sick now, after such a great stretch of behavior.
Of course, I'm not a doctor, or a scientist, or a researcher. I am sure there might be all kinds of flaws in this theory, and I might be totally off, but it's a theory that to me, anyway, makes sense.
In terms of how we react to Janey, I've been thinking about how calmer behavior on her part leads to calmer behavior on our part. If Janey had been in one of her very tough moods for a month leading up to this cold, we would have been much more discouraged by her behavior yesterday. But at least for a day, we did pretty well handling it, I think. We stuck to what we know works with her---keeping her active (which would have been hard if the illness was more severe than a cold), keeping our speech tones calm, keeping her well fed, telling her verbally what we planned to do and where we were going even if we were only leaving the room for a minute (that's especially important with Daddy!)
I hope Janey's cold is a quick one, and she goes back to her healthy ways, but I wouldn't mind a little illness here and there if it means her body is relaxing a bit, physically and mentally.
Wednesday, February 18, 2015
Ten Turning Point Posts
This morning, I was doing a little reading back of my posts, something I do now and then. My first impression---"Wow, that woman sure does like to write a lot!" Yes, there are over 700 posts. That's over the course of seven years, but it's still a heck of a lot of writing. Another thought was about the early years. For the first few years, I was using the blog mostly as a diary. The posts are far more dashed off and, in my own worst critic mode, poorly written. I don't think it ever occurred to me that anyone would be reading them, and at first, nobody was. Now, I do get a fair amount of readers, which still amazes me every time I think of it.
It struck me that most people probably don't have the time or desire to read through 726 posts to get the story of Janey's life so far. I decided to pick out 10 posts---posts about what I would call turning points in our journey with Janey. They aren't my 10 favorite posts, or most popular posts, but they are ones that write about moments I think back on as instances that changed something in our life with Janey. Here they are, in order of oldest to newest...
The Bad McDonalds Trip
Up until the day of this trip, I felt able to take Janey most anyplace I felt like. She might have tough moments, but they weren't such that it made a scene or made me feel I couldn't handle her in public. I remember this trip to McDonalds vividly as the day I realized everything had changed, and I would be no longer ever just jumping in the car with her to go wherever I felt like.
The First Wonderful Music Moment
This might not really have been the first, but it's the first that stands out in my mind as a time that Janey completely surprised and delighted me by making me realize she could communicate things in musical lyrics and melodies she could not do in other ways.
The First Medication
This was, after an extremely tough stretch, when we gave in and first put Janey on medication.
Deciding Where I Stood
I think this was the first post where I felt I had earned the right to decide for myself where I stood on how I was approaching Janey's autism. Up until then, I didn't feel I'd earned my stripes enough to do so.
Giving Advice to Non-Autism People
One of the first times I felt I was part of a community and that as part of that community, I had something to say to those who might not understand the community completely!
There Isn't Any Respite
Up until the point written about here, I think I still had a feeling that there was respite for us out there, if we really looked. After giving up on what we thought we had found, we realized there are kids with special needs and then kids with specialer needs, and that Janey was not the first kind.
The Next Level of Tough
This is what I remember as the beginning of the next era with Janey---when it felt like the stakes were getting higher and Janey was entering a new stage of tough behaviors.
The Biggest Sleep Nightmare
Sleep has been an issue for Janey right along, but this night was the apex of it. Knocking on wood a thousand times, it never again has been quite as bad as this fabled night.
The End Of Inclusion
It build up to this day for a while---the IEP meeting where we formally agreed Janey would leave the Henderson Inclusion School and enter a program with autism-only classrooms.
The Hospital Month
A summary of the month Janey spent in first a regular hospital and then a psychiatric ward.
This posts point a bit of a negative picture, but that's not of course the whole Janey story! Right now, again, knocking on wood, Janey seems happier than she has in quite a while. We are hopeful her latest medication and the changes we have made and the schools have made in how we work with her, and of course her own maturation and remarkable spirit, has started another turning point, a very hopeful one.
It struck me that most people probably don't have the time or desire to read through 726 posts to get the story of Janey's life so far. I decided to pick out 10 posts---posts about what I would call turning points in our journey with Janey. They aren't my 10 favorite posts, or most popular posts, but they are ones that write about moments I think back on as instances that changed something in our life with Janey. Here they are, in order of oldest to newest...
The Bad McDonalds Trip
Up until the day of this trip, I felt able to take Janey most anyplace I felt like. She might have tough moments, but they weren't such that it made a scene or made me feel I couldn't handle her in public. I remember this trip to McDonalds vividly as the day I realized everything had changed, and I would be no longer ever just jumping in the car with her to go wherever I felt like.
The First Wonderful Music Moment
This might not really have been the first, but it's the first that stands out in my mind as a time that Janey completely surprised and delighted me by making me realize she could communicate things in musical lyrics and melodies she could not do in other ways.
The First Medication
This was, after an extremely tough stretch, when we gave in and first put Janey on medication.
Deciding Where I Stood
I think this was the first post where I felt I had earned the right to decide for myself where I stood on how I was approaching Janey's autism. Up until then, I didn't feel I'd earned my stripes enough to do so.
Giving Advice to Non-Autism People
One of the first times I felt I was part of a community and that as part of that community, I had something to say to those who might not understand the community completely!
There Isn't Any Respite
Up until the point written about here, I think I still had a feeling that there was respite for us out there, if we really looked. After giving up on what we thought we had found, we realized there are kids with special needs and then kids with specialer needs, and that Janey was not the first kind.
The Next Level of Tough
This is what I remember as the beginning of the next era with Janey---when it felt like the stakes were getting higher and Janey was entering a new stage of tough behaviors.
The Biggest Sleep Nightmare
Sleep has been an issue for Janey right along, but this night was the apex of it. Knocking on wood a thousand times, it never again has been quite as bad as this fabled night.
The End Of Inclusion
It build up to this day for a while---the IEP meeting where we formally agreed Janey would leave the Henderson Inclusion School and enter a program with autism-only classrooms.
The Hospital Month
A summary of the month Janey spent in first a regular hospital and then a psychiatric ward.
This posts point a bit of a negative picture, but that's not of course the whole Janey story! Right now, again, knocking on wood, Janey seems happier than she has in quite a while. We are hopeful her latest medication and the changes we have made and the schools have made in how we work with her, and of course her own maturation and remarkable spirit, has started another turning point, a very hopeful one.
Saturday, February 14, 2015
Realistic Dreaming vs. Giving Up
Lately I've been thinking a lot about how my vision of Janey's future affects her, and affects how we spend our time with her. I've been doing a little soul-searching. Am I selling Janey short by how I envision her future?
After a lot of thought, I actually for once cut myself a break and decided---no, I'm not. To show my reasoning, a little analogy. Say I bought a Power Ball ticket (which I don't, but I could of!) It would be fine to dream about how life would be if I won. I could picture the house I'd buy, the charities I'd support, the trips I'd take---I could very much enjoy the thoughts. And it's true that it's POSSIBLE I'd win. It wouldn't be likely, not at all likely, but it's not impossible. There's nothing wrong with that kind of dreaming. However, what if I decided to live life assuming I WOULD win the lottery? What if I put a down payment on a huge house, if I booked passage on a cruise, if I bought myself a bunch of fancy clothes for the charity galas I soon would be attending? Most people would agree that wouldn't be the best course of action.
I dream that Janey will somehow learn to read, that she will finish high school, that she will go to college, that she will have a family, that she will live on her own. I dream those things for her all the time. I am open to those dreams coming true. However, Janey is ten. She can't read, she isn't toilet trained, she can't really have a conversation...in any measure, she is severely intellectually delayed. She also show a lot of very difficult behaviors, enough so that she last year spent time in a psychiatric hospital. Of course, there are not exact odds for life outcomes, because there are too many variables. But if we looked at 100 ten year olds with that general profile, I'd be surprised if even one of the 100 accomplished the things on my dream list for Janey. If Janey were four instead of ten, the odds would be hugely different. Many, many four year olds with profiles like Janey go on to do many of the things on my list. Quite a few six years also do. But as the years go by, the numbers get smaller.
Does this mean I'm giving up on Janey? Not in any way. It means I am using reasonable odds to decide where to put our time and resources. Janey's time, her time RIGHT NOW, is valuable. Another analogy---Picture a couple that wants to have a very comfortable retirement. In fact, they are obsessed with saving for retirement. As their children are growing up, they pass up many, many chances for fun with the kids because it would use money that needs to be saved for retirement. They don't eat out. They don't take vacations. They don't have reliable cars. They don't spend a cent they don't need to. And yes, they have plenty of money when it comes retirement time, but I would say they have missed a huge amount in doing so. They have lived many years not enjoying the right now.
When I have time to spend with Janey, how should I spend it? Janey has been in school for eight years now. She can't name letters. She can't add simple sums. She can't reliably identify shapes or colors. When we have a block of time with her, does it make sense to work on those skills, taking into consideration that the odds are very, very low she's ever hold a job that requires those skills, and that so much time has already been put into trying to teach her those skills? I would say no.
Instead, I choose to invest in the now. Lately, when Janey gets home from school, we spend time together listening to a cool on-line station I have found, one that plays nothing but Casey Kasem countdowns from the 70s and 80s. I love the stories behind the songs Casey tells, and Janey loves much of the music. She dances her amazing dances, she learns the songs at an amazing rate, we have quite a time of it. When she hears a song she hates, she turns off the music and we move on. But while the time lasts, I'd say it's time extremely well spent. Janey is having fun, I am having fun, and she is actually learning things that will help her enjoy her future---more songs, more types of music, the things that have been demonstrated over and over are her strengths and her joy.
My dreams for Janey, my dreams that I think truly can come true? That she have a meaningful life---one with joys and interests and respect from those around her. Success isn't the same for everyone. I think being realistic about what Janey's future might be like is not giving up. It's actually opening up a huge amount of time in the now, and letting us work on a future that respects who she actually is.
After a lot of thought, I actually for once cut myself a break and decided---no, I'm not. To show my reasoning, a little analogy. Say I bought a Power Ball ticket (which I don't, but I could of!) It would be fine to dream about how life would be if I won. I could picture the house I'd buy, the charities I'd support, the trips I'd take---I could very much enjoy the thoughts. And it's true that it's POSSIBLE I'd win. It wouldn't be likely, not at all likely, but it's not impossible. There's nothing wrong with that kind of dreaming. However, what if I decided to live life assuming I WOULD win the lottery? What if I put a down payment on a huge house, if I booked passage on a cruise, if I bought myself a bunch of fancy clothes for the charity galas I soon would be attending? Most people would agree that wouldn't be the best course of action.
I dream that Janey will somehow learn to read, that she will finish high school, that she will go to college, that she will have a family, that she will live on her own. I dream those things for her all the time. I am open to those dreams coming true. However, Janey is ten. She can't read, she isn't toilet trained, she can't really have a conversation...in any measure, she is severely intellectually delayed. She also show a lot of very difficult behaviors, enough so that she last year spent time in a psychiatric hospital. Of course, there are not exact odds for life outcomes, because there are too many variables. But if we looked at 100 ten year olds with that general profile, I'd be surprised if even one of the 100 accomplished the things on my dream list for Janey. If Janey were four instead of ten, the odds would be hugely different. Many, many four year olds with profiles like Janey go on to do many of the things on my list. Quite a few six years also do. But as the years go by, the numbers get smaller.
Does this mean I'm giving up on Janey? Not in any way. It means I am using reasonable odds to decide where to put our time and resources. Janey's time, her time RIGHT NOW, is valuable. Another analogy---Picture a couple that wants to have a very comfortable retirement. In fact, they are obsessed with saving for retirement. As their children are growing up, they pass up many, many chances for fun with the kids because it would use money that needs to be saved for retirement. They don't eat out. They don't take vacations. They don't have reliable cars. They don't spend a cent they don't need to. And yes, they have plenty of money when it comes retirement time, but I would say they have missed a huge amount in doing so. They have lived many years not enjoying the right now.
When I have time to spend with Janey, how should I spend it? Janey has been in school for eight years now. She can't name letters. She can't add simple sums. She can't reliably identify shapes or colors. When we have a block of time with her, does it make sense to work on those skills, taking into consideration that the odds are very, very low she's ever hold a job that requires those skills, and that so much time has already been put into trying to teach her those skills? I would say no.
Instead, I choose to invest in the now. Lately, when Janey gets home from school, we spend time together listening to a cool on-line station I have found, one that plays nothing but Casey Kasem countdowns from the 70s and 80s. I love the stories behind the songs Casey tells, and Janey loves much of the music. She dances her amazing dances, she learns the songs at an amazing rate, we have quite a time of it. When she hears a song she hates, she turns off the music and we move on. But while the time lasts, I'd say it's time extremely well spent. Janey is having fun, I am having fun, and she is actually learning things that will help her enjoy her future---more songs, more types of music, the things that have been demonstrated over and over are her strengths and her joy.
My dreams for Janey, my dreams that I think truly can come true? That she have a meaningful life---one with joys and interests and respect from those around her. Success isn't the same for everyone. I think being realistic about what Janey's future might be like is not giving up. It's actually opening up a huge amount of time in the now, and letting us work on a future that respects who she actually is.
Tuesday, February 10, 2015
It's a Happy Day!
The title of this post is what Janey just said to me a minute ago. And it's the truth---it's a happy day, and it's been a pretty happy last 4 or 5 days. This fact is amazing considering the fact that we are in the middle of Boston's snow nightmare. It's snowed and snowed and snowed and snowed. There's at least 40 inches on the ground. There was no school today or yesterday, just like last Monday and Tuesday. Eight snow days so far this year. We've all been stuck home together since Saturday morning. And yet, Janey has been happy. A joy, really.
What's going on? I don't know. I'm knocking on wood every few minutes. I have a few theories. One is that Janey's new medication is working, working very well. The dose was raised a few weeks ago, and it's the kind of medication that takes a while to build up in the system. Maybe, finally, whatever has haunted Janey's brain and made her so unhappy so much of the time has been calmed down. The medication is an anti-seizure medication also used for mood disorders. Maybe Janey was having seizures we didn't recognize, or maybe she truly is bi-polar. Or whatever she is/was, maybe we finally hit on the right combination of medication.
Another theory---a lot of time at home with us often seems to, after a while, make Janey happy. She likes routine, and if she's going to school, she likes it to be steady, so that would seem to mean that being off and on home would not make her very happy. But we have all been home, and stuck in the house, and spending a great deal of time together. I remember a few other times that that was the case, and how after a bit, Janey seemed to make jumps forward. Her talking would get better and her understanding would seem to increase. Maybe a lot of one-on-one constant attention from two adults and one near-adult is something very good for her.
And maybe, it's just random. Janey's moods come and go. She's had wonderful mood spells before, and this might be just another one. I hope that is not the case, although I'll take what I can get, but I'd rather that something has changed, that something has happened that will actually last.
Janey's talking has improved lately too, something that hasn't happened for years. It's not something you'd probably notice if you didn't know her very well. But she is suddenly making statements. She will say something like "The cat is here" or "I am on the bed" or "I see a book". That just hasn't happened much in the past. A cute example from today---Janey said to Freddy "It's Halloween!" A statement, although not really accurate. Freddy said it was nowhere near Halloween, and Janey said, just as cheerily "It's not Halloween!" The very best statement---the other day, Janey was doing her rounds around the house, reciting videos, when suddenly she said, in a completely regular voice, not sing-songy or echolalia sounding "I love you, Daddy". Well, that was a moment. Needless to say, Tony was very, very happy. And I was a little jealous!
It hasn't been perfect, of course. Four or five times a day, Janey is still getting very upset, screaming and sometimes biting her arm or trying to hit us. But these episodes are getting shorter and shorter. And I've been able to distract her, by suggesting almost any activity---watching TV, reading a book, looking out the window. That is very new.
Whatever it is, it's been wonderful. I've written so many upset and sad and depressed and downbeat posts that it's great to be able to sincerely write a happy, upbeat one. This snow period is something else again, and we are expecting two more storms soon. But if the snow somehow brought in Janey's recent moods, I say---let it snow.
What's going on? I don't know. I'm knocking on wood every few minutes. I have a few theories. One is that Janey's new medication is working, working very well. The dose was raised a few weeks ago, and it's the kind of medication that takes a while to build up in the system. Maybe, finally, whatever has haunted Janey's brain and made her so unhappy so much of the time has been calmed down. The medication is an anti-seizure medication also used for mood disorders. Maybe Janey was having seizures we didn't recognize, or maybe she truly is bi-polar. Or whatever she is/was, maybe we finally hit on the right combination of medication.Another theory---a lot of time at home with us often seems to, after a while, make Janey happy. She likes routine, and if she's going to school, she likes it to be steady, so that would seem to mean that being off and on home would not make her very happy. But we have all been home, and stuck in the house, and spending a great deal of time together. I remember a few other times that that was the case, and how after a bit, Janey seemed to make jumps forward. Her talking would get better and her understanding would seem to increase. Maybe a lot of one-on-one constant attention from two adults and one near-adult is something very good for her.And maybe, it's just random. Janey's moods come and go. She's had wonderful mood spells before, and this might be just another one. I hope that is not the case, although I'll take what I can get, but I'd rather that something has changed, that something has happened that will actually last.
Janey's talking has improved lately too, something that hasn't happened for years. It's not something you'd probably notice if you didn't know her very well. But she is suddenly making statements. She will say something like "The cat is here" or "I am on the bed" or "I see a book". That just hasn't happened much in the past. A cute example from today---Janey said to Freddy "It's Halloween!" A statement, although not really accurate. Freddy said it was nowhere near Halloween, and Janey said, just as cheerily "It's not Halloween!" The very best statement---the other day, Janey was doing her rounds around the house, reciting videos, when suddenly she said, in a completely regular voice, not sing-songy or echolalia sounding "I love you, Daddy". Well, that was a moment. Needless to say, Tony was very, very happy. And I was a little jealous!
It hasn't been perfect, of course. Four or five times a day, Janey is still getting very upset, screaming and sometimes biting her arm or trying to hit us. But these episodes are getting shorter and shorter. And I've been able to distract her, by suggesting almost any activity---watching TV, reading a book, looking out the window. That is very new.
Friday, February 6, 2015
Allowing ourselves to feel sad
Yesterday on the Rarer in Girls Facebook page, there was a great discussion about times when we parents feel down about our children's autism. It made me think about how at times, it seems like we are being told that we aren't supposed to feel that way---that we need somehow to always stay upbeat, positive and forward-looking, that we need to never stop and feel sad or discouraged. I find blogs like that sometimes, and to be perfectly honest, they are sometimes tough for me to read, because they make me feel very guilty that I can't maintain that level of positive feelings and optimism. The discussion yesterday made me think. I think it's only human, only natural, for us to feel discouraged, sad, down and even despairing at times, and we should not feel like that makes us bad autism parents.
I think back a lot to a day when my younger son, Freddy, was almost 11. I woke that morning and checked on him, as his asthma had been acting up the day before. As soon as I saw him, I knew he was in very, very serious shape. Every breath was a struggle. His chest was drawing in horribly with every breath. We drove at top speed to the hospital, and within a minute, he was in a room being treated. The whole day was like a nightmare. They couldn't get his attack under control for a long time, and wound up giving him an IV of magnesium sulfate, a drastic measure. He was admitted to the hospital. That night, his heart rate showed signs of a possible heart defect. I remember sitting by him as he fell asleep, still breathing with trouble. I don't think anyone on earth would think that it was wrong that I felt sad that night, scared, overwhelmed. Of course I had some grateful feelings---that he was being treated, that we made it to the hospital, that he was alive. But if someone had said it was wrong for me to think "I wish he didn't have asthma. I wish this hadn't happened"---well, I don't think most people would think that. And I don't think most people would say that me feeling that way meant I wished I didn't have FREDDY, that I wished he wasn't himself.
However, with Janey, with autism, people sometimes do think that. They think that wishing she didn't have autism, wishing that none of the events that autism have caused had happened, means that I wish I didn't have JANEY. And that is not true. That is so far from true that it makes me angry to even think about. Autism is NOT Janey. Autism is something she HAS. My own personal beliefs are that autism is an auto-immune disease, in Janey's case. But whatever brings it on, it's not a choice. It's not how Janey has decided to be.
Another parallel between autism and asthma is that there is a huge spectrum. There are people with mild asthma, asthma that has never required medication, that only shows itself after cold or after a lot of running. Thank goodness, that is what Freddy's asthma had evolved into. If you have a child with that kind of asthma, you will see it very differently than the asthma that possibly could have taken my child's life. Janey's autism is on the more severe end of the spectrum. I can hope and dream and aspire to many things for her, but in reality, they are unlikely. It's very unlikely she will ever live on her own, or marry, or have children, or hold a job. I can hope for these things, but in many ways, I think that does Janey a disservice. It's denying who she is and what she needs to be happy. And even if those things happen, that doesn't change the RIGHT NOW. If I had said "I won't take Freddy to the hospital for this horrible attack, because that would be denying that he might someday live a life basically unaffected by asthma"---well, I don't think he'd have been around for the life he now leads. Being realistic about Janey's autism lets me meet her where she is right now.
The discussion on Facebook talked about the sadness of dreams for the future being changed by autism. I think this is a very valid reason to feel sad. It's not unique to autism, but the level of changed dreams is what might not be understood by some people. The term "dream" might be the issue here. When I say I feel sad that my dreams of Janey one day marrying, becoming a mother, graduation from high school or college, getting a job will not be met---those are not really dreams. They are well within what most of us do in life. It seems paternalistic, judgmental, unrealistic---all those things---for anyone to say we shouldn't feel sad that our children will not do the things that most people do. It's very different than if, for example, I'd had a dream Freddy would be a famous runner and I was sad his asthma would prevent that. Most of us aren't going to become famous runners, and although I won't judge anyone's sadness, sadness over a dream like that not coming true isn't the same as sadness that my daughter will most likely never know the joy of being a mother herself.
The bottom line is this, in my eyes---being sad about a child's autism DOES NOT MEAN YOU DON'T LOVE AND VALUE THE CHILD. I put that in all caps because I AM shouting it. I love Janey as much as I could possibly love anyone on earth. But I am sad, so often very sad, about the limits that autism has placed on her. And I won't apologize for that.
I think back a lot to a day when my younger son, Freddy, was almost 11. I woke that morning and checked on him, as his asthma had been acting up the day before. As soon as I saw him, I knew he was in very, very serious shape. Every breath was a struggle. His chest was drawing in horribly with every breath. We drove at top speed to the hospital, and within a minute, he was in a room being treated. The whole day was like a nightmare. They couldn't get his attack under control for a long time, and wound up giving him an IV of magnesium sulfate, a drastic measure. He was admitted to the hospital. That night, his heart rate showed signs of a possible heart defect. I remember sitting by him as he fell asleep, still breathing with trouble. I don't think anyone on earth would think that it was wrong that I felt sad that night, scared, overwhelmed. Of course I had some grateful feelings---that he was being treated, that we made it to the hospital, that he was alive. But if someone had said it was wrong for me to think "I wish he didn't have asthma. I wish this hadn't happened"---well, I don't think most people would think that. And I don't think most people would say that me feeling that way meant I wished I didn't have FREDDY, that I wished he wasn't himself.
However, with Janey, with autism, people sometimes do think that. They think that wishing she didn't have autism, wishing that none of the events that autism have caused had happened, means that I wish I didn't have JANEY. And that is not true. That is so far from true that it makes me angry to even think about. Autism is NOT Janey. Autism is something she HAS. My own personal beliefs are that autism is an auto-immune disease, in Janey's case. But whatever brings it on, it's not a choice. It's not how Janey has decided to be.
Another parallel between autism and asthma is that there is a huge spectrum. There are people with mild asthma, asthma that has never required medication, that only shows itself after cold or after a lot of running. Thank goodness, that is what Freddy's asthma had evolved into. If you have a child with that kind of asthma, you will see it very differently than the asthma that possibly could have taken my child's life. Janey's autism is on the more severe end of the spectrum. I can hope and dream and aspire to many things for her, but in reality, they are unlikely. It's very unlikely she will ever live on her own, or marry, or have children, or hold a job. I can hope for these things, but in many ways, I think that does Janey a disservice. It's denying who she is and what she needs to be happy. And even if those things happen, that doesn't change the RIGHT NOW. If I had said "I won't take Freddy to the hospital for this horrible attack, because that would be denying that he might someday live a life basically unaffected by asthma"---well, I don't think he'd have been around for the life he now leads. Being realistic about Janey's autism lets me meet her where she is right now.
The discussion on Facebook talked about the sadness of dreams for the future being changed by autism. I think this is a very valid reason to feel sad. It's not unique to autism, but the level of changed dreams is what might not be understood by some people. The term "dream" might be the issue here. When I say I feel sad that my dreams of Janey one day marrying, becoming a mother, graduation from high school or college, getting a job will not be met---those are not really dreams. They are well within what most of us do in life. It seems paternalistic, judgmental, unrealistic---all those things---for anyone to say we shouldn't feel sad that our children will not do the things that most people do. It's very different than if, for example, I'd had a dream Freddy would be a famous runner and I was sad his asthma would prevent that. Most of us aren't going to become famous runners, and although I won't judge anyone's sadness, sadness over a dream like that not coming true isn't the same as sadness that my daughter will most likely never know the joy of being a mother herself.
The bottom line is this, in my eyes---being sad about a child's autism DOES NOT MEAN YOU DON'T LOVE AND VALUE THE CHILD. I put that in all caps because I AM shouting it. I love Janey as much as I could possibly love anyone on earth. But I am sad, so often very sad, about the limits that autism has placed on her. And I won't apologize for that.
Wednesday, February 4, 2015
A trip to the library
As many of you who have joined the Facebook page "Rarer in Girls", which is a companion to this blog, already know (and as an aside, if you would like to join, you are welcome, if you'd like breaking Janey news but much more importantly, some great discussions with terrific people!), Janey did something very cool yesterday. She found my pocketbook, took out my wallet and located my library card, which she brought to me and said "Want to go to the library?" That was a surprise to me on many fronts. She had never before expressed an interest in the library, but more, I had NO idea she knew what a library card was or what mine looked like. I was truly stunned. And happy---I love the library! So I told her we would go after school today.
However, that plan got moved up in the day, due to Janey's bus never showing up. This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus. We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!) And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again. I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)
So---we went to the library around noon. Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her. It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.
After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room. I kind of knew that Janey's picture of the library was not accurate. I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun. She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch. But I figured we'd see what she thought.
Janey very briefly looked at the picture book section. I told her she could pick out any books she wanted to take home, but she had no interest in that. Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms. When I saw that, I screamed "STOP!" I didn't use a library voice. Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code. I felt like saying to them "I was once you. I used only gentle tones. I explained everything carefully to my children. I would have sat down with you and made friends and arranged a playgroup. However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms" Instead I just said "She is autistic and a little unpredictable" They all smiled an inclusive smile and we went on our way.
The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books. She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf. Then she went back to the picture book section and I again said she could pick a book. Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist. I hissed out "LET GO NOW" and she didn't, but I got out of the grip. I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go! We'll try again another time!" The librarian was very sweet and offered Janey a sticker, which she took. I checked out our books and we blew that joint as quickly as possible.
So...what's the lesson here? Partly, that I probably should not have attempted the library alone with Janey. She easily could have hit the baby or seriously hurt me. But in a way, I'm still glad I did. I need to get Janey out there, to have her be part of the community as much as I can. It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.
The whole deal does illustrate why giving Janey a "normal" life is so hard. There is so, so little I can do safely with her any more. It is why inclusion, in so many meanings of the word, is challenged by a child like Janey. And it's why parents like myself, and there are lots of us, so very much need help.
However, that plan got moved up in the day, due to Janey's bus never showing up. This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus. We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!) And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again. I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)So---we went to the library around noon. Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her. It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room. I kind of knew that Janey's picture of the library was not accurate. I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun. She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch. But I figured we'd see what she thought.
Janey very briefly looked at the picture book section. I told her she could pick out any books she wanted to take home, but she had no interest in that. Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms. When I saw that, I screamed "STOP!" I didn't use a library voice. Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code. I felt like saying to them "I was once you. I used only gentle tones. I explained everything carefully to my children. I would have sat down with you and made friends and arranged a playgroup. However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms" Instead I just said "She is autistic and a little unpredictable" They all smiled an inclusive smile and we went on our way.
The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books. She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf. Then she went back to the picture book section and I again said she could pick a book. Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist. I hissed out "LET GO NOW" and she didn't, but I got out of the grip. I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go! We'll try again another time!" The librarian was very sweet and offered Janey a sticker, which she took. I checked out our books and we blew that joint as quickly as possible.
So...what's the lesson here? Partly, that I probably should not have attempted the library alone with Janey. She easily could have hit the baby or seriously hurt me. But in a way, I'm still glad I did. I need to get Janey out there, to have her be part of the community as much as I can. It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.
The whole deal does illustrate why giving Janey a "normal" life is so hard. There is so, so little I can do safely with her any more. It is why inclusion, in so many meanings of the word, is challenged by a child like Janey. And it's why parents like myself, and there are lots of us, so very much need help.
Tuesday, February 3, 2015
The snowiest week in Boston history---some notes
The past seven days have broken the Boston record for snowfall amounts, by 10 inches. Needless to say, there hasn't been much school---one day out of the last 5. Janey is home again today.
How is it going? Well, not as badly as it might be. Not great, but not terrible. As an old friend said on Facebook, Janey's in a routine now---a no school routine. She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride. It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible. So she's home.
What have we been doing? Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing. It pains me to write that, but it's true. When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge. For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.
We've been doing a good deal of reading, too. I love this. I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them. She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored. We read through a long treasury twice last night, and Janey knows every rhyme by heart.
Tony has been home a lot of the time, and he's done a lot of cooking for Janey. This is one of her biggest joys. He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants. She loves the whole process.
Of course, there has been some hitting, kicking, biting and so on. We are still struggling hard to figure out just how to handle this. For a while, we were having success with time out in the bathroom. However, Janey has started to like this time out. The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately). I was trying to get her to sleep, and said no. So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!" I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.
More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge. Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV. We were all bored of it, but too lethargic to turn it off. Janey went over and turned off the TV. This almost always gets a quick response from us, but none of us said a word, because none of us cared. Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!" We had not followed the routine. But how do we use this knowledge? Most of the time, her turning off the TV is NOT something acceptable. We have to let her know that's the case. But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior? Who knows? What can we do?
Hopefully, there will be school tomorrow. And that will be an adjustment for Janey once again. I can't imagine what life feels like for her much of the time. She doesn't understand so much of it. Sometimes there's school. Sometimes there isn't. Sometimes we can walk to get ice cream or go get a Happy Meal. Sometimes we can't. Sometimes turning off the TV is very naughty. Sometimes no-one seems to care. Sometimes everyone is awake and ready to cook, to read, to talk. Sometimes it's dark and nobody wants to do anything. That is life, but it's very hard for Janey to understand. When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.
How is it going? Well, not as badly as it might be. Not great, but not terrible. As an old friend said on Facebook, Janey's in a routine now---a no school routine. She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride. It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible. So she's home.
What have we been doing? Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing. It pains me to write that, but it's true. When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge. For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.
We've been doing a good deal of reading, too. I love this. I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them. She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored. We read through a long treasury twice last night, and Janey knows every rhyme by heart.
Tony has been home a lot of the time, and he's done a lot of cooking for Janey. This is one of her biggest joys. He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants. She loves the whole process.
Of course, there has been some hitting, kicking, biting and so on. We are still struggling hard to figure out just how to handle this. For a while, we were having success with time out in the bathroom. However, Janey has started to like this time out. The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately). I was trying to get her to sleep, and said no. So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!" I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.
More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge. Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV. We were all bored of it, but too lethargic to turn it off. Janey went over and turned off the TV. This almost always gets a quick response from us, but none of us said a word, because none of us cared. Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!" We had not followed the routine. But how do we use this knowledge? Most of the time, her turning off the TV is NOT something acceptable. We have to let her know that's the case. But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior? Who knows? What can we do?
Hopefully, there will be school tomorrow. And that will be an adjustment for Janey once again. I can't imagine what life feels like for her much of the time. She doesn't understand so much of it. Sometimes there's school. Sometimes there isn't. Sometimes we can walk to get ice cream or go get a Happy Meal. Sometimes we can't. Sometimes turning off the TV is very naughty. Sometimes no-one seems to care. Sometimes everyone is awake and ready to cook, to read, to talk. Sometimes it's dark and nobody wants to do anything. That is life, but it's very hard for Janey to understand. When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.
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