Tomorrow is Autism Acceptance Day. You might know it as Autism Awareness Day, but like a lot of others, I have chosen to change the name. I think most of us are aware of autism by this point. The next step is acceptance, and that is a step not only for the general public for but many of us personally. Or at least it is for me.
I struggled for a long time with the idea of autism acceptance. My reasons were many, but there were lots of times I heard that term and said to myself "Never! Accept autism? That's not going to happen!" I always told myself it had nothing to do with accepting JANEY, it has to do with accepting her autism. However, I think I'm finally there. I've figured out what autism acceptance means to me.
Autism acceptance doesn't mean liking the tough parts of autism, or NOT liking the great parts.
When Janey bites herself or others, or when she cries for hours on end for reasons we don't understand, acceptance doesn't mean not trying to help her to feel better and stop hurting herself or others. It DOES mean accepting that those behaviors are part of how autism affects her. It means not denying the parts of autism that are so tough, not writing them out of the story to make autism more palatable.
When Janey is delightful, amazing, hilarious, autism acceptance doesn't mean that I can't enjoy the positive effects of autism. I don't have to say "Janey is wonderful DESPITE her autism". I can say "Janey is wonderful partly BECAUSE of her autism" That's a tough one for most people to take, somehow. But when Janey recites dialogue amazingly well, when she learns songs instantly and sings them so well, when she snuggles us without the typical pre-teen reserve---I accept that those behaviors are part of her autism, and I love them.
Autism acceptance applies to ALL parts of the spectrum.
This year, when the press decides to showcase people with autism, I wish for every Temple Grandin, for every child that has written a book or learned to type and give us all insights into their world, they would also showcase a child on the lower end of the spectrum, like Janey. I don't accept Janey conditionally, and I dream of a world that doesn't accept people with autism because they have or might someday do something amazing. Janey and and the children of my friends around the world with a child with low-functioning autism deserve to be accepted and to have their lives made as meaningful and joyful as possible.
Autism acceptance also applies to acceptance of a family's choices
It is very hard to see how fragmented and politically correct and potentially trigger-filled the world of autism is. Part of what I think we all need to accept is that we've all made different choices in how we deal with the autism. Some people embrace ABA. Others do Floortime. Others have put their children on special diets. Some use vitamin supplements. Some use medication. Some homeschool. Some have children in residential placements. There are an amazing number of ways to educate and medicate and provide therapy to children with autism. We might feel strongly our way is the best, but we need to accept another family might not feel that way, and as long as we all have the goal of helping our child live a happier and healthier life, these issues should not divide us.
I will close with a video a lot of you have already seen, as I put it on my Facebook page. It's Janey surprising me with a different message than the one I asked her to give---I asked her to say "Happy Autism Acceptance Day!" but her Boston and 1/8th Irish got the better of her! She also says in the video "I have autism" I love her sweet voice as she says that. I used to avoid using the word "autism" around her, but I have decided that's not at all what I should do. I accept Janey's autism as part of the amazing little girl she is. I love you, Janey.
Here's the video!
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label diets. Show all posts
Showing posts with label diets. Show all posts
Wednesday, April 1, 2015
Thursday, November 7, 2013
Chocolate---or why I don't discount anyone's theories...
Usually, getting to sleep is not a problem for Janey. Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night. She usually does it herself. Bedtime rolls around, she gets in bed and goes to sleep. It's that easy. Last night, though, something was off. Bedtime came and went, and she was rocking and rolling and hyped up. We tried over and over to get her to settle down---no luck. Finally, ten o'clocked rolled around and she finally dozed off. Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered. When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut. There we had it, the culprit. We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep. It's only chocolate that does this. She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M? Forget it.
Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism. The chocolate thing seems on the face of it to make little sense. Why only chocolate? Why such a tiny amount? It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate. And again and again, we see the results. This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances. And why, although I don't think my children were affected badly by vaccines, I am sure that some children were. And the list goes on and on. I truly don't think autism has one cause. It has lots of causes. I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard. I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune. This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones. Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family). All autoimmune problems, and there are more in our extended family. The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one. Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time. Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why". But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism). If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.
I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines. You love your child, and you also want to help others. When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures. I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey. I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine. That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child. We are both right. We know our kids. We have to all work together, no matter what got us to this autism life.
Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism. The chocolate thing seems on the face of it to make little sense. Why only chocolate? Why such a tiny amount? It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate. And again and again, we see the results. This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances. And why, although I don't think my children were affected badly by vaccines, I am sure that some children were. And the list goes on and on. I truly don't think autism has one cause. It has lots of causes. I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard. I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune. This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones. Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family). All autoimmune problems, and there are more in our extended family. The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one. Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time. Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why". But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism). If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.
I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines. You love your child, and you also want to help others. When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures. I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey. I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine. That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child. We are both right. We know our kids. We have to all work together, no matter what got us to this autism life.
Wednesday, September 25, 2013
The books I can't write
Once in a while, someone suggests to me that I write a book about Janey. It's a flattering thing to hear, and I have considered it now and then. The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories. In thinking about this today, I came up with these four types of autism books....
1. "How I Cured My Child's Autism" This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely. Happily Ever After. The books starts with a few chapters of the horror of the early years, the shock of the diagnosis. Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.
This is not going to happen to Janey. I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles. It's not going to happen. Janey will be autistic for good. There isn't a cure out there that will fix her. I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis. Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.
2. "How The Cruel System Failed My Child" Not as common a category, but I've read a few. This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child. I can't write this book, because that's not my experience. I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey. They want to help her as much as I do. I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care. I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are. But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.
3. "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism" This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things. I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story. I don't know what caused Janey's autism. I don't think it was any one thing. I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet. But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic. I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now. So that book is out.
4. "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life" This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child. The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem. Well, I can't write this one at all. I don't think anyone who spend much time with Janey could. Life with Janey is not poetic. It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes. It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again. There are wonderful moments with Janey, yes. I love her beyond words, yes. But it's doing a disservice to pretend her life is somehow a life we all should strive to live. It's doing her a disservice most of all.
The book about Janey, the one I will probably never write, is full of uncertainties. It's full of working for years for her to be able to write a J. It's full of devoted people that non-the-less often become discouraged by the reality of Janey. It has no shortage of theories about her autism, but no answers. It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about. It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life. It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.
1. "How I Cured My Child's Autism" This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely. Happily Ever After. The books starts with a few chapters of the horror of the early years, the shock of the diagnosis. Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.
This is not going to happen to Janey. I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles. It's not going to happen. Janey will be autistic for good. There isn't a cure out there that will fix her. I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis. Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.
2. "How The Cruel System Failed My Child" Not as common a category, but I've read a few. This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child. I can't write this book, because that's not my experience. I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey. They want to help her as much as I do. I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care. I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are. But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.
3. "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism" This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things. I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story. I don't know what caused Janey's autism. I don't think it was any one thing. I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet. But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic. I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now. So that book is out.
4. "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life" This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child. The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem. Well, I can't write this one at all. I don't think anyone who spend much time with Janey could. Life with Janey is not poetic. It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes. It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again. There are wonderful moments with Janey, yes. I love her beyond words, yes. But it's doing a disservice to pretend her life is somehow a life we all should strive to live. It's doing her a disservice most of all.
The book about Janey, the one I will probably never write, is full of uncertainties. It's full of working for years for her to be able to write a J. It's full of devoted people that non-the-less often become discouraged by the reality of Janey. It has no shortage of theories about her autism, but no answers. It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about. It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life. It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.
Friday, January 18, 2013
Growing out of autism?
This article is one of many that have been in the news lately about a study showing that some children grow out of autism, lose the diagnosis. It's a study in the early stages, as they haven't yet talked about what was done differently, if anything, with those children, or some ways the children might have been different from other autistic kids from the start. But it certainly caught my interest. In some ways, my life is a laboratory for that study. My older son was originally diagnosed as autistic, and now is in no way autistic. And Janey, of course, is severely autistic and I am pretty sure always will be.
You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this. The study only accepted diagnoses from experts in autism. Both my kids were diagnosed by fairly well known leaders in the field, so that counts. But there are huge difference between them, and were from the start.
The big, big, big difference is cognitive ability. Janey is intellectually disabled. There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed. She didn't walk until she was 2. Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids. She even was/is delayed in physical ways---she didn't get teeth until after her first birthday. William was never cognitively delayed. He spoke at an incredibly early age, and he was obviously quite a bright kid from the start. I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.
Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't. It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey. We may have used that to react differently to him. I don't think so, but it's possible. Janey blindsided us at age 3. She has early intervention, but it was only for her walking delays. It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.
The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert. I think he had a collection of traits that made him appear autistic. Part of that is just personality. It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz. He's a hard worker, and he gets very involved in what he loves doing. That showed up early. He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things! And as you grow up, having the ability to get very into things isn't bad. It is what makes experts, professors. It's probably what has resulted in most all great inventions and steps forward in history. I think autism is something that shouldn't in some ways be diagnosed until around age 7. Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment. They should. But do they have to be called autism that early? By the time a child is 7 or 8, it will be obvious who is autistic and who isn't. Janey is autistic. There is zero doubt there. William isn't. There is zero doubt there too.
The other message I want to put out there is that I didn't do anything magical to make William not autistic. I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that. I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life. He was the one that changed. I didn't make him change. That sends me a message about Janey. I am doing the best I can for her, but I don't think there is some magical key that will unlock her.
I look forward very much to following this study as more information comes out.
You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this. The study only accepted diagnoses from experts in autism. Both my kids were diagnosed by fairly well known leaders in the field, so that counts. But there are huge difference between them, and were from the start.
The big, big, big difference is cognitive ability. Janey is intellectually disabled. There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed. She didn't walk until she was 2. Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids. She even was/is delayed in physical ways---she didn't get teeth until after her first birthday. William was never cognitively delayed. He spoke at an incredibly early age, and he was obviously quite a bright kid from the start. I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.
Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't. It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey. We may have used that to react differently to him. I don't think so, but it's possible. Janey blindsided us at age 3. She has early intervention, but it was only for her walking delays. It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.
The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert. I think he had a collection of traits that made him appear autistic. Part of that is just personality. It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz. He's a hard worker, and he gets very involved in what he loves doing. That showed up early. He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things! And as you grow up, having the ability to get very into things isn't bad. It is what makes experts, professors. It's probably what has resulted in most all great inventions and steps forward in history. I think autism is something that shouldn't in some ways be diagnosed until around age 7. Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment. They should. But do they have to be called autism that early? By the time a child is 7 or 8, it will be obvious who is autistic and who isn't. Janey is autistic. There is zero doubt there. William isn't. There is zero doubt there too.
The other message I want to put out there is that I didn't do anything magical to make William not autistic. I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that. I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life. He was the one that changed. I didn't make him change. That sends me a message about Janey. I am doing the best I can for her, but I don't think there is some magical key that will unlock her.
I look forward very much to following this study as more information comes out.
Tuesday, January 1, 2013
My autism resolutions for 2013
I am not big on making New Years resolutions. I don't ever like to delude myself, so I don't like to make ones I know I won't keep. That's just a setup for feeling awful about yourself, I think. But I've had some thoughts about what I want to do in 2013 in regards to Janey, and in regards to autism in general. Four ideas, to be exact....
1. Delight in Janey whenever possible. There is so much hard about raising Janey, so much that is tiring and overwhelming. But there is also a lot that is wonderful. I am lucky that way. I am going to try very hard to delight in her, when the opportunity presents itself. I'm going to enjoy her singing, her amazing smile, her delight in little things, her eccentricities, the rare moments her talking comes through, the multiple moments that she uses the speech she has to get her point across. I'm going to enjoy dressing her up, and giving her foods she loves, no matter how odd, and showing her off. I'm going to sit more with her watching her favorite shows and laughing along with her to them. I'm going to find more music she likes and listen to it with her. I'm going to read her or tell her the kind of reading she enjoys---poems and fairy tales and rhyming books. I'm going to let myself just plain have fun with her.
2. Be easier on myself when the autism parenting gets tough. Somewhere along the line I got the message in life that you must always carry on, keep going no matter what, don't allow yourself to wallow or admit being overwhelmed. I don't think that's serving me any more. If Janey doesn't sleep all night, and I have to sleep most of the next day, I'm not going to spend the day cursing myself and trying to stay awake and get things done. I'm going to admit to myself that Janey is one tough kid. She's a kid that overwhelms people like her doctor in just a 10 minute visit. She's a kid that very few people, without the training in fire Tony and I have had, could handle at all full time, without breaks, without help. She's a delight often, yes, but she's very, very autistic. She's a toddler in a 8 year old body. She require constant supervision. If I need to rest and spend a day doing nothing more productive than playing Scrabble and reading, I am going to tell myself that the rest of the time, I work a job that respite workers get paid good money to work, and I deserve a day off once in a while.
3 Speak up about autism issues more. I don't know how often I bite my tongue when confronted with someone advocating the latest "cure", when someone suggests I should find a babysitter so I can "get out more", when someone says that if I really tried, Janey could sit nicely at a table, use the toilet consistently, when people tell me how special diets, intensive ABA programs, Floortime all day long, getting a dog, going to Mongolia to ride horses, swimming with dolphins, etc, might be just what Janey needs. I admit not everyone has told me those things personally, but they are all out there in the world of "autism cures". Often, I just smile or say thank you. I don't step in. I don't comment on Facebook conversations that I see that are pretty much attacking other autism parents for not trying this or that. I keep the peace. I feel a little guilty about this. I dare say I know more about autism than someone who once read an interesting Reader's Digest article about it, and I should not be afraid to speak up. If it's hard for me to do, I can think about my friends with autistic kids, especially those just starting out on the good ol' Holland trip, and speak up for them.
4. Treasure my fellow autism parent friends. I thought a lot about the past year last night. I thought how few people get my life, about how I have noticed that after spending time with our family when Janey is with us, often the invitations to spend time together don't happen again, how I always have my guard up when people are around Janey, how I always watch what I say, how she acts, how I'm always prepared to flee if she gets difficult. How it's extremely isolating being her mother. And then I thought about the people I know get it. I thought especially about the first friend I made through this blog---that's you, Michelle!---and although we haven't met in person yet, how the few times I've talked to her by phone and the emails we've shared and the Facebook statuses we can read from someone who really, really does it have kept me going on many a tough day. I hope to become real friends with anyone out there who reads this and can relate to it. We have to be there for each other. I realize more every day how important that is.
With that, I'll start 2013 with optimism and a smile, and with love to everyone sharing this journey.
1. Delight in Janey whenever possible. There is so much hard about raising Janey, so much that is tiring and overwhelming. But there is also a lot that is wonderful. I am lucky that way. I am going to try very hard to delight in her, when the opportunity presents itself. I'm going to enjoy her singing, her amazing smile, her delight in little things, her eccentricities, the rare moments her talking comes through, the multiple moments that she uses the speech she has to get her point across. I'm going to enjoy dressing her up, and giving her foods she loves, no matter how odd, and showing her off. I'm going to sit more with her watching her favorite shows and laughing along with her to them. I'm going to find more music she likes and listen to it with her. I'm going to read her or tell her the kind of reading she enjoys---poems and fairy tales and rhyming books. I'm going to let myself just plain have fun with her.
2. Be easier on myself when the autism parenting gets tough. Somewhere along the line I got the message in life that you must always carry on, keep going no matter what, don't allow yourself to wallow or admit being overwhelmed. I don't think that's serving me any more. If Janey doesn't sleep all night, and I have to sleep most of the next day, I'm not going to spend the day cursing myself and trying to stay awake and get things done. I'm going to admit to myself that Janey is one tough kid. She's a kid that overwhelms people like her doctor in just a 10 minute visit. She's a kid that very few people, without the training in fire Tony and I have had, could handle at all full time, without breaks, without help. She's a delight often, yes, but she's very, very autistic. She's a toddler in a 8 year old body. She require constant supervision. If I need to rest and spend a day doing nothing more productive than playing Scrabble and reading, I am going to tell myself that the rest of the time, I work a job that respite workers get paid good money to work, and I deserve a day off once in a while.
3 Speak up about autism issues more. I don't know how often I bite my tongue when confronted with someone advocating the latest "cure", when someone suggests I should find a babysitter so I can "get out more", when someone says that if I really tried, Janey could sit nicely at a table, use the toilet consistently, when people tell me how special diets, intensive ABA programs, Floortime all day long, getting a dog, going to Mongolia to ride horses, swimming with dolphins, etc, might be just what Janey needs. I admit not everyone has told me those things personally, but they are all out there in the world of "autism cures". Often, I just smile or say thank you. I don't step in. I don't comment on Facebook conversations that I see that are pretty much attacking other autism parents for not trying this or that. I keep the peace. I feel a little guilty about this. I dare say I know more about autism than someone who once read an interesting Reader's Digest article about it, and I should not be afraid to speak up. If it's hard for me to do, I can think about my friends with autistic kids, especially those just starting out on the good ol' Holland trip, and speak up for them.
4. Treasure my fellow autism parent friends. I thought a lot about the past year last night. I thought how few people get my life, about how I have noticed that after spending time with our family when Janey is with us, often the invitations to spend time together don't happen again, how I always have my guard up when people are around Janey, how I always watch what I say, how she acts, how I'm always prepared to flee if she gets difficult. How it's extremely isolating being her mother. And then I thought about the people I know get it. I thought especially about the first friend I made through this blog---that's you, Michelle!---and although we haven't met in person yet, how the few times I've talked to her by phone and the emails we've shared and the Facebook statuses we can read from someone who really, really does it have kept me going on many a tough day. I hope to become real friends with anyone out there who reads this and can relate to it. We have to be there for each other. I realize more every day how important that is.
With that, I'll start 2013 with optimism and a smile, and with love to everyone sharing this journey.
Monday, December 10, 2012
Mythologizing Recovery
I've been continuing to read "Far From The Tree". It's a very long book! I've finished the chapter on autism, and I'm going to write more about it when I finish the whole book, but in that chapter, there was a quote that struck me very hard. It was written by Cammie McGovern, the mother of an autistic child, in a New York Times op-ed piece (you can read the whole piece here) and it said "In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures." That says a mouthful. She says in the piece something I've thought---that you don't really meet these recovered kids outside of the books. I am sure they exist, in a way. In fact, I have one in my own family, in my son, in a way. But I don't think he was ever autistic to start with, and if he was, I didn't "recover" him. He recovered himself, or his brain recovered itself.
Do I feel like a failure because it doesn't appear Janey is going to "recover"? Well, strangely, although I am prone to feeling guilty about everything (including the ducks going barefoot, to use a phrase I heard growing up), I don't feel guilty about that. It is not my goal to have Janey recover, because I don't think it's possible. And I am not going to use her whole childhood to try to do something that I don't feel in my heart is possible or is in her best interests.
I was thinking of an analogy. Say you had a kid, a "typical" kid. A great kid, but with a huge amount of trouble with math. This kid just doesn't get math. He is good at a lot of other things---let's say he writes poetry, he plays chess, he is a fast runner---he's a cool kid. But he is no good at all at math. And that just is not okay, with his family or school. They decide to "recover" him, to fix his math problem. And because anything worth doing is worth doing all out, they go all out. They start a 40 hour a week math tutoring program, for starts. They have him get rewards for doing math. Before he can play chess or write his poetry or run, he has to do a math problem. They work math into every part of life. Now, this kid is never going to be a math whiz. Not even the most optimistic people think that. But the goal is that he be indistinguishable from any other kid with his math abilities.
One of two things can happen. He can recover to the point that he functions as well as anyone at math. It took him about 20 times the effort, and he doesn't like math, and he is not going to have a career in math, but he is okay at it. Meanwhile, he's lost out on time he could have spent doing things he's really good at. He's been hugely frustrated over and over. He basically didn't have a childhood for years, recovering that math. The other result---it doesn't work at all. He doesn't learn math. Maybe he can do a few math facts here and there, unpredictably. But he will never, ever be in a regular math class. The time teaching him basically has been wasted.
Now let's look at another way to handle his math problem. We could say "well, math is not his thing. It's quite helpful in life to know a little math, so we will work with him on that. He will have math lessons now and then, but we are certainly not going to let it take up time he could be living his childhood. We are going to emphasize what he's good at. We will help him with math, but we realize that he won't be going to MIT. He won't be taking calculus. He might spend his whole life with a little trouble counting change"
Of course, the skills autism takes away are more life-changing than math, but the basic theme is the same. I accept that Janey is autistic. There are things she'll most likely never be good at. But there are things she's very good at, and besides that all, she's a kid. I could go all out "recovering" her, and maybe, maybe, she could get closer to "normal", although with her intellectual disability, that's not likely. But she'd lose out on a lot. Or it might not work at all, and I would feel like a failure. Some people might say it was worth it, that I should have done 40 hours a week of ABA, a special diet, intensive floortime, high dose vitamins, a private school. I say no. I say I'll keep doing what I'm doing, and what her wonderful team of teachers and therapists are doing. I'll work on the autism, but I'll leave time for music and running around outside and snuggling and laughing and a childhood.
Do I feel like a failure because it doesn't appear Janey is going to "recover"? Well, strangely, although I am prone to feeling guilty about everything (including the ducks going barefoot, to use a phrase I heard growing up), I don't feel guilty about that. It is not my goal to have Janey recover, because I don't think it's possible. And I am not going to use her whole childhood to try to do something that I don't feel in my heart is possible or is in her best interests.
I was thinking of an analogy. Say you had a kid, a "typical" kid. A great kid, but with a huge amount of trouble with math. This kid just doesn't get math. He is good at a lot of other things---let's say he writes poetry, he plays chess, he is a fast runner---he's a cool kid. But he is no good at all at math. And that just is not okay, with his family or school. They decide to "recover" him, to fix his math problem. And because anything worth doing is worth doing all out, they go all out. They start a 40 hour a week math tutoring program, for starts. They have him get rewards for doing math. Before he can play chess or write his poetry or run, he has to do a math problem. They work math into every part of life. Now, this kid is never going to be a math whiz. Not even the most optimistic people think that. But the goal is that he be indistinguishable from any other kid with his math abilities.
One of two things can happen. He can recover to the point that he functions as well as anyone at math. It took him about 20 times the effort, and he doesn't like math, and he is not going to have a career in math, but he is okay at it. Meanwhile, he's lost out on time he could have spent doing things he's really good at. He's been hugely frustrated over and over. He basically didn't have a childhood for years, recovering that math. The other result---it doesn't work at all. He doesn't learn math. Maybe he can do a few math facts here and there, unpredictably. But he will never, ever be in a regular math class. The time teaching him basically has been wasted.
Now let's look at another way to handle his math problem. We could say "well, math is not his thing. It's quite helpful in life to know a little math, so we will work with him on that. He will have math lessons now and then, but we are certainly not going to let it take up time he could be living his childhood. We are going to emphasize what he's good at. We will help him with math, but we realize that he won't be going to MIT. He won't be taking calculus. He might spend his whole life with a little trouble counting change"
Of course, the skills autism takes away are more life-changing than math, but the basic theme is the same. I accept that Janey is autistic. There are things she'll most likely never be good at. But there are things she's very good at, and besides that all, she's a kid. I could go all out "recovering" her, and maybe, maybe, she could get closer to "normal", although with her intellectual disability, that's not likely. But she'd lose out on a lot. Or it might not work at all, and I would feel like a failure. Some people might say it was worth it, that I should have done 40 hours a week of ABA, a special diet, intensive floortime, high dose vitamins, a private school. I say no. I say I'll keep doing what I'm doing, and what her wonderful team of teachers and therapists are doing. I'll work on the autism, but I'll leave time for music and running around outside and snuggling and laughing and a childhood.
Saturday, November 15, 2008
What bothers me
I have sort of put my finger on what bothers me about people telling me to try ABA (or dairy free diets, or vitamins, or anything they tell me). If I tell someone that Janey is autistic, they can have know me 5 seconds and Janey just as long or not at all, and they are saying "How much ABA does she get? Is she getting ABA? What kind of program is she in at school? What diets have you tried?" And then feeling free to tell me EXACTLY what I need to do---"You have to force the schools to give her ABA---you have to try diets, you have to this and that..." JUST IMAGINE someone saying that about a "regular" kid---"You have to put her in dancing lessons, you have to send her to private school, you have to make her eat pumpkin every day, you have to teach her phonics...." It just wouldn't happen. Most of us allow others to make decisions about how to raise their own kids, or at least don't presume to know what is best for a child they don't know or barely know. I find it sort of biased to assume EVERY child with autism needs the exact same things.
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