In the bad old days, autism was thought to be caused by "refrigerator mothers", mothers who hadn't really wanted their kids to start with and therefore showed them little human emotion. I would say almost no-one thinks that any more, thankfully. Although I think most autism mothers, like most mothers in general, search their memories of their pregnancy and birth and their child's early days, trying to figure out WHY, most of us do know that our child's autism is not our fault. We didn't cause it. We might not know what caused it, but it wasn't something we did deliberately or even indirectly. We don't take the blame, at least on our better days.
I'm wondering, then, why so many mothers feel it is there job to FIX the autism. We can accept we didn't cause it, that nothing we did made our kids they way they are. The inverse of that is that although most mothers tried always to do everything right, they were powerless to prevent autism. However, although we can sort of accept that powerlessness and blamelessness, we can't accept we don't have the power to cure autism. We feel, somehow, that if we do everything right, if we try just the right combination of therapies or diets or experiences or schools or approaches or medication or supplements or so on, we will fix the autism. We believe in people who say they did just that---people who write books about the miracle cures for their children. We give ourselves in our minds the power, if we just try hard enough, to fix what has happened.
I am trying hard to not do this. I'm trying to be consistent. I know I didn't cause Janey's autism. I don't know what did cause it. And because I didn't have the power to keep her from becoming autistic, I also want to accept I don't have the power to overcome the autism. That in no way means I'm not going to keep working to make her life better, just as when I was pregnant or when she was a baby, I did everything I could to give her the best start I could.
This is where my older son comes in. He was also at one point, when he was very young, diagnosed with autism. That was changed within a few years to an Aspergers diagnosis. When he was 8, testing showed he no longer fell into the autism spectrum. When he was 12, we stopped having him on an IEP at school. Last week, he graduated from high school as valedictorian of his class. He heads to Brandeis in the fall. This is where I have to practice what I preach. I don't take the credit for his "recovery" I think he was misdiagnosed, but even if that wasn't the case, it wasn't anything I did or didn't do that "fixed" him. He did that himself. It was what was meant to be. I am proud of him, but I in no way at all take credit for him. If I did, it would follow I should take blame for Janey not being cured, being in fact very much the same as she was when she was diagnosed 5 years ago.
I believe in autism acceptance, mostly. And I think that needs to mean an absence of credit or blame. Janey is who she is. She is a full, complete, complex person just as she is. Talking about credit or blame makes her sound like a project, not a person. The same holds true with William, my older son. As tempting as it can be to feel we can really change our children, I truly believe we can't. We can soften their path, we can give them opportunities to shine in their areas of talent or interest, we can be there when they fall or need our help, but they are people on their own. I'm not quite there yet, in fully believing that, but I am working toward it.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Showing posts with label Aspergers. Show all posts
Showing posts with label Aspergers. Show all posts
Tuesday, June 18, 2013
Wednesday, February 6, 2013
What we're gonna be
There's a line in one of my favorite songs by one of my favorite singers, Don Williams, that says "I guess we're all gonna be what we're gonna be" It sounds like a simple statement, but as time goes by, it strikes me as one of the most powerful and true statements out there, especially when it comes to raising kids. Your kids are who they are. They are going to be who they are going to be. We can ease the path for them, we can help them adapt who they are to this cold world, we can teach them coping techniques and give them ideas and help, financial and emotional, we can give them a soft place to land, but we aren't going to change who they are.
This was brought home to me in a very good way yesterday, when William stopped me just before I left to pick up Janey and showed me the certificate he received at school, stating he was going to be the valedictorian of his high school class. To say I was proud is to put it as mildly as it can be put. I was out of my mind proud, in tears proud, overwhelmed with emotion proud. And my mind did one of those things that usually only happen in movies. It did a sweep back on William's life. I saw him as a premature baby, a quirky little fellow, a kid who had trouble adjusting to school, a kid that took some time to find his place in the world. Then I saw him in high school---working until 2 am on homework, often, striving for excellence every single second. And I saw---it was all him. I had very, very little to do with it. He did the work. I can honestly say I never once helped him with homework after about 2nd grade. Once Janey was born, a bit after that, in some ways, he raised himself. We gave him a bed, food, love, but we in no way directed his schoolwork or insisted on him working. Instead, we often begged him to take breaks, to not knock himself out quite so much. But he had his own goals, his own personality, and that is what makes me so proud---that he set his own agenda, made his own dream and then followed it.
When it comes to Janey, it's harder to let myself believe that she will do the same, but I do, in a deep part of me, believe that she will. It's unlikely she will do it in the way William did, but she has things that drive her, just like William does. When she wants to know how to do something, she figures it out. I watch her sometimes now with her hands dancing over the iPad, or picking the exact episode she wants on Netflix, or finding all the ingredients to the dish she wants Tony to fix, or finding a way to ask me for the song she wants to hear. None of those things came easily to her, but she had goals, even if she didn't think of them that way. She wants to control her world, her activities, what she hears and sees and does, as much as anyone does. We by necessity have to hold her back, often. We can't let her use the stove, as I think she longs to, we can't let her go outside and explore in the freezing cold, we have to cut off her TV viewing at times. But she is showing us her way, and like with William, I think a lot of parenting is stepping out of the way as much as is safe and healthy and possible, and letting her work toward what drives her. The autism makes this tricky. I think of it as a handicap, not in the old way of handicapped kids, but in the way of a race horse or a golf player---something that she has to work against. This might not be totally politically correct to think---I think I'm supposed to see it as a part of her, but I don't, always. I see it as part of her own individual path, something she must work around. It's a lot bigger than what most of us are given to work around, and in the end, it will limit what she can do. There's no getting around that. But it won't stop her from becoming, as much as she can, who she is.
I am proud of all three of my children. They have different abilities, different goals, different needs, but that is what makes life interesting. They are all gonna be what they're gonna be.
Saturday, December 22, 2012
The girl in the Hanna Andersson dress
Last night, I went to the holiday concert at Freddy's school. Freddy wasn't in the concert, but my friend's daughter was, and I love hearing the music. It was a great night, with lots of different music groups performing.
During one of the sets, I found myself unable to stop looking at a girl playing in the back row. She had on a dress that is a type I love---a fair isle sweater dress, like from the Hanna Andersson catalog. I didn't know they made them in her size---she was as tall as a tall adult. It was the kind of dress either a misguided parent would pick out for a girl who wouldn't know to object to it, or a dress that a girl would want to wear that didn't realize how odd it looked on. Her hair was done in an unusual way, and she had a look, a look that I think I know. She was "on the spectrum", I'm fairly sure. She'd be on the very, very high end of the spectrum, as Freddy's school is an exam school, accepting only pretty strong students, and she was in one of the more selective music groups there. She was on the far opposite side of the spectrum from Janey, I think. I could be wrong, but I don't think I was.
It's a dirty little secret, maybe in my own mind only, but I think not, that there is some jealousy and nasty thoughts by those of us with low functioning kids toward high functioning kids. I shouldn't have it. I have a child that was once considered on the high functioning level, and I know it's not easy. But there are times I think "Yeah, you worry your child might have trouble making friends, you work on workplace issues, you talk about how their disability might lower their SAT scores. Cry me a river. I'm dealing with smeared diapers, hoping someday my child might be able to do well enough to live in a group home, wishing they could some day read a simple sentence. My sympathies are limited" But last night, I got a little perspective, if only due to my own imagining.
I projected about that girl, and a few other kids I saw---a boy in one of the choirs that was not with the program, not in rhythm, another boy who played like a professional but looked hugely awkward and unhappy. I thought about what life must be like on the very edge of fitting in. I thought of the lack of sympathy that must exist for kids that can score high on tests, can play instruments amazingly, can be there almost part of it all.
Janey will never fit in. The older she gets, the less she fits in. And that, in some small ways, is easier than the alternative. When we go to a store or other public place, it's immediately obvious she is not typical. She makes her "Ahhh-ahhh-ahhh" sound, she waves her hands, she sings to herself, she has to have her hand held every second. People, the vast majority of people, look at us with kindness, or if not that, at least some degree of sympathy. Many people love Janey. She doesn't have to struggle socially, as she has no idea whatsoever she doesn't fit in. She doesn't try to fit in. She is low functioning enough that unless someone is extremely judgmental or clueless, they don't assume she's just a naughty or loud or ill-disciplined little girl.
But that girl in the Hanna Andersson dress, the girl that might actually be just fine, but the girl I used as a jumping ground for thoughts---she probably lives a daily struggle, unable to quite keep up, being very bright but not able to use that to fit in. I am going to keep her in mind, and be grateful, in an odd way, for Janey's obvious disabilities.
During one of the sets, I found myself unable to stop looking at a girl playing in the back row. She had on a dress that is a type I love---a fair isle sweater dress, like from the Hanna Andersson catalog. I didn't know they made them in her size---she was as tall as a tall adult. It was the kind of dress either a misguided parent would pick out for a girl who wouldn't know to object to it, or a dress that a girl would want to wear that didn't realize how odd it looked on. Her hair was done in an unusual way, and she had a look, a look that I think I know. She was "on the spectrum", I'm fairly sure. She'd be on the very, very high end of the spectrum, as Freddy's school is an exam school, accepting only pretty strong students, and she was in one of the more selective music groups there. She was on the far opposite side of the spectrum from Janey, I think. I could be wrong, but I don't think I was.
It's a dirty little secret, maybe in my own mind only, but I think not, that there is some jealousy and nasty thoughts by those of us with low functioning kids toward high functioning kids. I shouldn't have it. I have a child that was once considered on the high functioning level, and I know it's not easy. But there are times I think "Yeah, you worry your child might have trouble making friends, you work on workplace issues, you talk about how their disability might lower their SAT scores. Cry me a river. I'm dealing with smeared diapers, hoping someday my child might be able to do well enough to live in a group home, wishing they could some day read a simple sentence. My sympathies are limited" But last night, I got a little perspective, if only due to my own imagining.
I projected about that girl, and a few other kids I saw---a boy in one of the choirs that was not with the program, not in rhythm, another boy who played like a professional but looked hugely awkward and unhappy. I thought about what life must be like on the very edge of fitting in. I thought of the lack of sympathy that must exist for kids that can score high on tests, can play instruments amazingly, can be there almost part of it all.
Janey will never fit in. The older she gets, the less she fits in. And that, in some small ways, is easier than the alternative. When we go to a store or other public place, it's immediately obvious she is not typical. She makes her "Ahhh-ahhh-ahhh" sound, she waves her hands, she sings to herself, she has to have her hand held every second. People, the vast majority of people, look at us with kindness, or if not that, at least some degree of sympathy. Many people love Janey. She doesn't have to struggle socially, as she has no idea whatsoever she doesn't fit in. She doesn't try to fit in. She is low functioning enough that unless someone is extremely judgmental or clueless, they don't assume she's just a naughty or loud or ill-disciplined little girl.
But that girl in the Hanna Andersson dress, the girl that might actually be just fine, but the girl I used as a jumping ground for thoughts---she probably lives a daily struggle, unable to quite keep up, being very bright but not able to use that to fit in. I am going to keep her in mind, and be grateful, in an odd way, for Janey's obvious disabilities.
Wednesday, July 25, 2012
Misguided remarks
I'm not going to try to demonize Joe Scarborough, who made comments saying that the shooter in Aurora sounded like he was on the autistic spectrum, more specifically someone with Aspergers. I know he has a son with Aspergers himself, and I don't think he meant the comments to be cruel or hurtful. But they were very misguided. I don't think he must really understand what at least the vast majority of people with autism are like.
On a very basic level, the reason I don't think someone on the spectrum could or would commit a heinous mass murder is because they quite simply are not motivated by much of anything that involves other people. They would not have the kind of hatred that would lead someone to kill others. That kind of sick hatred is in a very twisted way a social feeling. It's a crazy social feeling, but it's a social feeling. I don't think Janey would, even if she were higher functioning, have enough interest in people she didn't know to want to hurt them. If you go to Janey's summer school and see the hundred or so autistic kids there, you will notice very, very little if any fighting or arguing or teasing or annoying of kids toward each other. The kids do their own thing. Sometimes they imitate each other, and some do show affection to each other, mostly higher functioning girls. But I don't see meanness, or even mild purposeful annoying. That's not in their make-up.
I am not saying that someone with autism or Aspegers could never kill anyone. I think if they ever did, it would be an isolated event, probably having something to do with a special interest. This sounds like it might have been the case in an awful situation in our state, where a boy with Aspergers killed a classmate at his school. He was fascinated with CSI type shows and criminality, and he took it to a criminal level. He is in prison, and he should be. But that is nothing like the Aurora killings.
I am sickened by the Aurora case. I won't write more about it, because it's outside the scope of this blog. But I do want people to understand that it was not an act of someone with any kind of autism. I would be willing to bet the crime rate for people with autism is the lowest of any demographic you could think of. And Joe Scarborough should have known better than to say what he did.
Thursday, March 29, 2012
1 in 88???
The big news today of course is that the CDC says autism is being diagnosed even more often than before. (here's the article) I have two reactions, both based of course as anything I say here on my own personal thoughts and feelings.
First, I don't think the rate of autism is truly rising as fast as they say. I think the rate of autism being DIAGNOSED certainly is, but there's a difference. My evidence here is my own children. As I've talked about before here, my older son was originally diagnosed as autistic, later, at age 4, changed to Aspergers. As the years went by, the diagnosis seemed less apt to me. At around age 8, he was in a couple studies, and testing during both showed he didn't at that time meet the criteria for Aspergers. Of course, autism spectrum disorders are supposed to be for life, except in rare cases. Those cases are the kinds books and movies are made about, where incredibly dedicated parents (or Jenny McCarthy) do everything in their power to "cure" their child. That wasn't me. I'm dedicated, but not that focused. William got good quality inclusive special education help and therapy at school, no ABA, no diets, no miracle cures. He just, in my eyes, didn't actually have Aspergers. He was a preemie, he had a strong and unusual personality, but he wasn't on the autistic spectrum. Today, William is 17, the top student in his class, a pretty decent guitar player and a very, very cool person. He's quirky, but we're all quirky. He has not had any special services at school since 5th grade. None. But the state still considers, if they have statistics some place, that he is autistic. We still get mailings from the Department of Retardation for him, which I hide and which I have tried and tried to call and have stopped. He's looking at some Ivy League schools---a stretch, but not an incredibly big one. I don't think he needs those services. But yes, he'd be counted as one of the 1 in 88.
And then there's Janey. I don't need to tell her whole story. But she's one of the one in 88, and rightfully so. Knowing the two of them fairly well, as I can say I do---it's a huge world of difference. About as huge as I can imagine. Aspergers, however, even for people that really do have Aspergers, is grouped right along with autism. Kids like the son of a close friend, who is probably the single brightest person I've ever known, are grouped with Janey. This paints a very confusing picture for the general public. Is autism someone like Janey, or is it something else entirely? If you can only get services to help your high functioning kids, kids that might very much indeed need help, by calling them autistic, would you? I guess I did, once. I didn't call him that, but I didn't know any better, and I accepted him being called that, something that now that he's old enough to understand, upsets him a great deal when he thinks of it, although I wish it didn't.
So that's my first thought. My other thought---if this is true, if somehow the rate of autism keeps going up and up and up, what are we going to do about it? It's a horrible emergency, if it's true. If one in 88 kids is going to need help in life like Janey is going to keep, then there's going to be a HUGE cost. A monetary cost, but also a huge cost to families. I know how having a child with autism affects a family. I love Janey with all my heart, more than I can possibly say. But she is tough. Very, very tough. And I have a supportive husband, great older kids, a wonderful school system with fantastic teachers and therapists---I have all that. If I didn't, I don't know how I'd do it at all. And if there are really that many kids out there with autism---well, the nation is in for a shock.
I worry about the short attention span of causes. If autism is rare and something fascinating and interesting, celebrities and all will jump on the bandwagon and help. But if autism is common and wearing and no longer a novelty, I can picture a backlash. This is the case whether these kids have Janey-type autism or Asperger type autism. I can see public skepticism, public boredom. It's how the country works. For a while, everyone thought about Haiti all the time, or Japan after the earthquake, or New Orleans, or so on. Then, gradually, they fall out of the news. and although there are still dedicated people working for those causes, people's minds can only seem to hold so much caring at a time. I worry about that. Because all these autistic kids aren't going any place.
And so I'll do what seem to always do---think extremely locally. So locally that the local place is my own house, my own family. I will be there for my own little 1 in 88.
First, I don't think the rate of autism is truly rising as fast as they say. I think the rate of autism being DIAGNOSED certainly is, but there's a difference. My evidence here is my own children. As I've talked about before here, my older son was originally diagnosed as autistic, later, at age 4, changed to Aspergers. As the years went by, the diagnosis seemed less apt to me. At around age 8, he was in a couple studies, and testing during both showed he didn't at that time meet the criteria for Aspergers. Of course, autism spectrum disorders are supposed to be for life, except in rare cases. Those cases are the kinds books and movies are made about, where incredibly dedicated parents (or Jenny McCarthy) do everything in their power to "cure" their child. That wasn't me. I'm dedicated, but not that focused. William got good quality inclusive special education help and therapy at school, no ABA, no diets, no miracle cures. He just, in my eyes, didn't actually have Aspergers. He was a preemie, he had a strong and unusual personality, but he wasn't on the autistic spectrum. Today, William is 17, the top student in his class, a pretty decent guitar player and a very, very cool person. He's quirky, but we're all quirky. He has not had any special services at school since 5th grade. None. But the state still considers, if they have statistics some place, that he is autistic. We still get mailings from the Department of Retardation for him, which I hide and which I have tried and tried to call and have stopped. He's looking at some Ivy League schools---a stretch, but not an incredibly big one. I don't think he needs those services. But yes, he'd be counted as one of the 1 in 88.
And then there's Janey. I don't need to tell her whole story. But she's one of the one in 88, and rightfully so. Knowing the two of them fairly well, as I can say I do---it's a huge world of difference. About as huge as I can imagine. Aspergers, however, even for people that really do have Aspergers, is grouped right along with autism. Kids like the son of a close friend, who is probably the single brightest person I've ever known, are grouped with Janey. This paints a very confusing picture for the general public. Is autism someone like Janey, or is it something else entirely? If you can only get services to help your high functioning kids, kids that might very much indeed need help, by calling them autistic, would you? I guess I did, once. I didn't call him that, but I didn't know any better, and I accepted him being called that, something that now that he's old enough to understand, upsets him a great deal when he thinks of it, although I wish it didn't.
So that's my first thought. My other thought---if this is true, if somehow the rate of autism keeps going up and up and up, what are we going to do about it? It's a horrible emergency, if it's true. If one in 88 kids is going to need help in life like Janey is going to keep, then there's going to be a HUGE cost. A monetary cost, but also a huge cost to families. I know how having a child with autism affects a family. I love Janey with all my heart, more than I can possibly say. But she is tough. Very, very tough. And I have a supportive husband, great older kids, a wonderful school system with fantastic teachers and therapists---I have all that. If I didn't, I don't know how I'd do it at all. And if there are really that many kids out there with autism---well, the nation is in for a shock.
I worry about the short attention span of causes. If autism is rare and something fascinating and interesting, celebrities and all will jump on the bandwagon and help. But if autism is common and wearing and no longer a novelty, I can picture a backlash. This is the case whether these kids have Janey-type autism or Asperger type autism. I can see public skepticism, public boredom. It's how the country works. For a while, everyone thought about Haiti all the time, or Japan after the earthquake, or New Orleans, or so on. Then, gradually, they fall out of the news. and although there are still dedicated people working for those causes, people's minds can only seem to hold so much caring at a time. I worry about that. Because all these autistic kids aren't going any place.
And so I'll do what seem to always do---think extremely locally. So locally that the local place is my own house, my own family. I will be there for my own little 1 in 88.
Monday, September 20, 2010
Start of school
Janey started school a week ago. For the most part, it's been good. I hated leaving her the first day---she had such a "where am I? What's going on?" look on her face. But we got good reports that day and the next few. The special ed teacher is out on maternity leave, but the long term sub seems great. Janey is really in love with the aide (who is more like a teacher in terms of education and experience), and she seems to be making friends with the new students.
However, on Thursday we got a call at noon she had a high fever. About 2 weeks ago, the same thing happened---she spiked quite a high fever off and on for a few days, we took her to the dr., no strep, nothing wrong. I took her again last Friday, and again, nothing wrong but the fever, which at that point was not even there either. My sister used to do the same thing---just get a high fever with nothing else. I hope she's okay, and I hope she doesn't have to miss any more school. Today was like starting again. She had the same look on her face---Why am I here? What's going on? Routines seem very hard for her to grasp. I think most kids with autism like routines and schedules, but Janey doesn't seem to, or doesn't get them, anyway. She seems always very surprised by what comes next, even if we've done it the same way for years. She likes new things. I don't get any sense that picture schedules or verbal prompts about what comes next mean a thing to her.
On another note---my older son William turns 16 today. I am so proud of him. He was a preemie, and when he was younger, diagnosed with Aspergers. I don't think he ever really had it---I think it just took him a while to outgrow the preemie-ness. He's been tested several times in the past 4 or 5 years, and no longer meets the "qualifications" of Aspergers, and he hasn't been on an IEP for 5 years now. He's quirky---all my favorite people in the world are quirky. He's one of the main reasons I don't believe in miracle cures. He could be held up as one---at age 2, he was diagnosed as (but we weren't told) having classic autism. But he didn't, and aside from loving him and using school services and just waiting it out, we did nothing extreme---no special diets or therapies or so on. And in knowing him and knowing Janey---there is no comparison. You can be with Janey for half a minute and you know something is up. She never passes for "normal"---he always could, because, well, aside for some oddities, he was. I'm sure we have some kind of gene which pre-disposes us to traits that fall along a long spectrum, from slightly socially awkward to full blown autism. Or, in Freddy's case, to being extremely at ease socially and quite a leader. Anyway, I am so thrilled with the man William is becoming. He's very talented musically, he is tall and handsome and interesting and bright. He is more devoted to the study of Latin and history than almost anyone. He's fantastic, and I am so lucky to be his mother (as I am so lucky to be Freddy's mother and Janey's mother---I am lucky all around)
Thursday, December 13, 2007
Talking more today
Janey seemed to talk more today. It's hopeful when that happens, but it probably sort of makes us too hopeful sometimes, like somehow she will snap out of this as suddenly as she snapped into it. She said "I want to see Micio" (her uncle's cat) and sang most all of Jingle Bells, and told her teacher she wanted more water. 6 months ago this all would have been routine, but now it made it seem like a great day. It snowed a lot, and she seemed to like looking at it. She draws all the time, and I keep looking to see if she is drawing actual things, it's getting closer. It's interesting loops and lines and designs right now. I feel a little more hopeful about things. It is funny how it would seem wonderful now if she could just be high functioning autistic, or Aspergers, or many things. It's so scary when she doesn't talk at all. Still a lot of the "insane laughing" as we call it. It's disconcerting.
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