There's a lot of buzz lately about Sesame Street and their introduction of a muppet with autism, Julia. I haven't spent a lot of time looking at their resources, although I read the on-line book they have about Julia and liked it a lot, probably because Julia sounds a lot like Janey. But in keeping with a habit I have too often, I've read more about reactions to the whole Sesame Street autism program than I have their actual material. Much of the reaction is positive, but some of it was critical, not so much of the material for children, but the videos for adults, and a lot of the criticism was that the autistic kids were not allowed or shown to speak for themselves---their parents were speaking for them.
I very much feel that whenever possible, it's important to listen to people with autism. I have gotten many of the very best ideas for helping Janey from people with autism, especially one wonderful friend who is active on Facebook. Thank you, Sophie! However, I kept feeling when reading the criticisms---what about Janey? What about kids like Janey, who cannot speak for themselves?
Of course, in some ways, Janey can speak for herself. She can tell me her basic wants, if they are in words she says---"Snuggle on the bed! Want cheese! Want Chinese food! Do you want to take a car ride?" That's the kind of speaking that others can understand, but I think Janey has a lot more to say, and she literally can't say it. She doesn't use any communication apps or tools, she has a very limited ability to communicate verbally---if you were looking to learn about Janey's world by listening to her, by her speaking for herself without any help, you wouldn't learn much. Or maybe you could, if you spent a day with her, but in terms of the bigger world understanding Janey, that is not practical.
And that is where I come in, and my husband Tony, and my sons. We speak for Janey. We might not always get it right, but we try. We want people to know Janey, and in a larger sense, to know all the Janeys of the world, the people that are not able to communicate in a way that is understood by most.
Tony wrote about life with Janey as a guest post here, and I loved it. William and Freddy, my sons, have written guest posts too. When reading about how people were upset that kids with autism were not being allowed to speak for themselves on the Sesame Street autism page, I thought "everyone in the family has done a guest post except Janey, and she's the focus of the blog" And of course, she can't. Or can she? I hope, I very very very much hope, that I have spoken accurately for Janey with my own writing. I'm sure I haven't been perfect. I'm sure there are things Janey would have wanted everyone to know that I haven't written. But I've done the best I can.
If we insist the only valid information about autism is by those who can speak for themselves, we leave out a lot of people. Should I never speak for Janey? Should I wait until the day that might never come, when she can speak for herself? I don't think so. I don't like to be controversial, but in this case, I will say quite strongly---I will keep speaking for Janey. She deserves that. When and if she is able to speak for herself, I will move heaven and earth to give her a forum for doing so, but for now, I will do my level best to speak for her, to give her and people like her a voice. She deserves that.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Showing posts with label blogs. Show all posts
Showing posts with label blogs. Show all posts
Wednesday, October 28, 2015
Thursday, October 4, 2012
"I'm just here for the Yo Gabba Gabba!"
One of the interesting parts of having a blog is being able to see stats on it. I try not to get hung up on them. I don't really write this blog to get stats, or to count up how many followers I have, or so on. Mostly, I write it because I have to---because when I am overwhelmed with the life of a mother of a child with autism, I have to write. I've always reacted to life's tougher moments that way, which is why high school required about 10 diaries worth of writing for me, none of which I hope anyone ever reads, unless you are very interested in hearing about what boys talked to me in study hall or on the bus, with detailed analysis of what they were wearing and what they REALLY were saying between the lines and what a nasty person the new girl they are going out with is...you get the picture. I write because I am compelled to write.
Lately, however, in looking at the stats for this blog, I see a huge amount of new people looking at it, and almost all of them are here because of a post I wrote about Yo Gabba Gabba, in which I included some pictures. I guess some search engine directs people looking for Yo Gabba Gabba information to here. I wonder if they are kind of disappointed by the extreme lack of solid info on DJ Lance Rock and the crew once they get here. If you are one of those readers, I wanted to just say "hi" to you, and to say---stick around and read a little about autism, if you wish.
You might be saying now "No, sister, I have no interest in autism. My kid is fine. Maybe a little seriously into the whole gang of monsters on Yo Gabba, but no autistic!" And I say---I know. I have some non-autistic kids myself. But chances are, whether you have a child with autism or not, if the current statistics don't lie, you are going to be encountering some kids with autism along the way. They maybe be included in your child's class, or they might be in a special class at their school. You might see them at the playground, or at the beach, or on a bus. You might have one as a niece or nephew, or the child of a friend. But unless you live in a world very unlike mine, you will intersect at some point with autism. And you might want to learn more about it. It's a pretty interesting world, if I might say so. It's also a tough world. Maybe that glazed-eyed woman in your office is dealing with an autistic child. Maybe that kid at the grocery store throwing a tantrum is a poster child for the autistic spectrum. Maybe the boy in the class your daughter is telling you about, the one that only wants to talk about bridges or Thomas the Tank Engine or flags of the nations, maybe they are autistic. They are out there everyplace!
So, if you happened on this blog but you don't have a child with autism, welcome! Before I had a child with autism, I read a lot about it, just because it was interesting to me. The reality of autism is not quite as interesting as reading about it was, but I understand if you are just curious, if you just want to glimpse another way of thinking. And if you learn a little about what the autistic world is like, all the better!
Lately, however, in looking at the stats for this blog, I see a huge amount of new people looking at it, and almost all of them are here because of a post I wrote about Yo Gabba Gabba, in which I included some pictures. I guess some search engine directs people looking for Yo Gabba Gabba information to here. I wonder if they are kind of disappointed by the extreme lack of solid info on DJ Lance Rock and the crew once they get here. If you are one of those readers, I wanted to just say "hi" to you, and to say---stick around and read a little about autism, if you wish.
You might be saying now "No, sister, I have no interest in autism. My kid is fine. Maybe a little seriously into the whole gang of monsters on Yo Gabba, but no autistic!" And I say---I know. I have some non-autistic kids myself. But chances are, whether you have a child with autism or not, if the current statistics don't lie, you are going to be encountering some kids with autism along the way. They maybe be included in your child's class, or they might be in a special class at their school. You might see them at the playground, or at the beach, or on a bus. You might have one as a niece or nephew, or the child of a friend. But unless you live in a world very unlike mine, you will intersect at some point with autism. And you might want to learn more about it. It's a pretty interesting world, if I might say so. It's also a tough world. Maybe that glazed-eyed woman in your office is dealing with an autistic child. Maybe that kid at the grocery store throwing a tantrum is a poster child for the autistic spectrum. Maybe the boy in the class your daughter is telling you about, the one that only wants to talk about bridges or Thomas the Tank Engine or flags of the nations, maybe they are autistic. They are out there everyplace!
So, if you happened on this blog but you don't have a child with autism, welcome! Before I had a child with autism, I read a lot about it, just because it was interesting to me. The reality of autism is not quite as interesting as reading about it was, but I understand if you are just curious, if you just want to glimpse another way of thinking. And if you learn a little about what the autistic world is like, all the better!
Wednesday, January 18, 2012
Other blogs
Today has been a tough day for me, for no external reason except being tired, which is my normal state, pretty much. I'm just feeling it all more than usual. For some reason, I started searching around for other autism blogs. I figured there must be some other ones out there that I could read that reminded me of myself and of Janey---misery loves company, I guess. But I couldn't find any. There are millions of autism blogs, it seems, and I KNOW there are a few other mothers with kids like Janey (and I am thankful every day for knowing that!) but the blogs were...well...let's do a list!
1. They were fancy. They had great graphics, and all kinds of pictures, and little statistics at the side, and awards, and animations and neat wallpaper and all kinds of do-dads. I am not good at decorating in real life, and I guess my blog reflects that.
2. They were upbeat. Not every post, but in general, they were cheery. They were forward looking, seeing great improvements all the time, excited about new approaches, thrilled about achievements, just so happy sounding. Maybe I am just a down person, although I have not usually been seen as such. But it seems like bloggers are supposed to be a lot more positive than I am.
3. They weren't afraid to speak well of themselves. I saw more than a few that had mothers that referred to themselves as "Super-Autism Moms!" That amazed me. I guess my Maine upbringing featured many reminders that you don't "show off" like that. If anything, you should always put yourself down a little, and it will be understood that you are doing that. But I guess that's not the way it's done in Bloggerville.
4. They had unified plans for the "battle against autism". They most all seemed to have picked a plan the day their child was diagnosed, and they work relenetlessly to put that plan in place. Whether it's ABA, or diets, or chelation, or intensive floortime, or whatever, they are wholeheartedly devoted to the single-minded goal of FIXING THAT CHILD! I felt like a huge slacker and a pacifist in the battle against autism.
5. Their kids were incredibly bright. So many blogs mentioned that---how their child at 2 could read, name all the presidents and elements and states, build rockets---you know I'm overstating here, but you get the picture. Their child was autistic, but not, you know, that BAD kind of autistic that is also retarded. Not that kind, but the so much more trendy high-functioning kind.
6. Schools, doctors, Early Intervention, society at large---they were all enemies, trying to do what they could to somehow deny their special child the help they needed. This wasn't universal, but it was out there a lot. It was them (their own family and others who agreed with whatever their "recovery" approach was) against the world. I love Janey's school, which is probably not the thing to do if I want to be one of those cool autism moms.
7. They DID things---things outside the house, things besides just getting through the days with their children. They went on getaway vacations, dinners out, fundraising events, conferences, opportunities to take great scrapbooking pictures, all kinds of things. They somehow didn't seem tied to the house by the drain on emotions and finances that I thought came along with this journey to Holland.
8. They were just in general a lot cooler than I was. They were the popular crowd, the insiders, the ones that have it all together. Autism has entered their life, but as luck would have it, right when autism is very cool!
I hope anyone reading this list sees that it's a bit satire-ridden. Of course all the blogs weren't totally like that---it's just how it felt to me on a down, depressed day. I know there are many, many, many people out there living a life like mine. They probably just don't have the energy to get to the keyboard. I've always written---writing is my break, my release, so that's how I use the limited store of energy I have. Others with lives like mine might cook, or sew, or watch TV, or just lie on the bed and stare at the ceiling. And they have every right to. Writing is how I survive, some days. So if you are reading, thanks, and please don't take me too seriously when I'm in this kind of mood!
1. They were fancy. They had great graphics, and all kinds of pictures, and little statistics at the side, and awards, and animations and neat wallpaper and all kinds of do-dads. I am not good at decorating in real life, and I guess my blog reflects that.
2. They were upbeat. Not every post, but in general, they were cheery. They were forward looking, seeing great improvements all the time, excited about new approaches, thrilled about achievements, just so happy sounding. Maybe I am just a down person, although I have not usually been seen as such. But it seems like bloggers are supposed to be a lot more positive than I am.
3. They weren't afraid to speak well of themselves. I saw more than a few that had mothers that referred to themselves as "Super-Autism Moms!" That amazed me. I guess my Maine upbringing featured many reminders that you don't "show off" like that. If anything, you should always put yourself down a little, and it will be understood that you are doing that. But I guess that's not the way it's done in Bloggerville.
4. They had unified plans for the "battle against autism". They most all seemed to have picked a plan the day their child was diagnosed, and they work relenetlessly to put that plan in place. Whether it's ABA, or diets, or chelation, or intensive floortime, or whatever, they are wholeheartedly devoted to the single-minded goal of FIXING THAT CHILD! I felt like a huge slacker and a pacifist in the battle against autism.
5. Their kids were incredibly bright. So many blogs mentioned that---how their child at 2 could read, name all the presidents and elements and states, build rockets---you know I'm overstating here, but you get the picture. Their child was autistic, but not, you know, that BAD kind of autistic that is also retarded. Not that kind, but the so much more trendy high-functioning kind.
6. Schools, doctors, Early Intervention, society at large---they were all enemies, trying to do what they could to somehow deny their special child the help they needed. This wasn't universal, but it was out there a lot. It was them (their own family and others who agreed with whatever their "recovery" approach was) against the world. I love Janey's school, which is probably not the thing to do if I want to be one of those cool autism moms.
7. They DID things---things outside the house, things besides just getting through the days with their children. They went on getaway vacations, dinners out, fundraising events, conferences, opportunities to take great scrapbooking pictures, all kinds of things. They somehow didn't seem tied to the house by the drain on emotions and finances that I thought came along with this journey to Holland.
8. They were just in general a lot cooler than I was. They were the popular crowd, the insiders, the ones that have it all together. Autism has entered their life, but as luck would have it, right when autism is very cool!
I hope anyone reading this list sees that it's a bit satire-ridden. Of course all the blogs weren't totally like that---it's just how it felt to me on a down, depressed day. I know there are many, many, many people out there living a life like mine. They probably just don't have the energy to get to the keyboard. I've always written---writing is my break, my release, so that's how I use the limited store of energy I have. Others with lives like mine might cook, or sew, or watch TV, or just lie on the bed and stare at the ceiling. And they have every right to. Writing is how I survive, some days. So if you are reading, thanks, and please don't take me too seriously when I'm in this kind of mood!
Sunday, September 13, 2009
Other autism blogs
I was reading a few other autism blogs, and it was depressing. So so so many kids that are diagnosed with autism seem so much higher functioning than Janey. It almost makes me mad---I want to say "That isn't autism! That's just a quirky kid! I HAVE one of those---it's nothing like having a kid that REALLY has autism!" But of course that is mean and unnecessary. I just felt upset reading about kids that can read at 5 and have interesting insights and so on. Janey doesn't have any interesting insights. I really wonder if she will ever read, or even learn her letters. Her latest hobby is spreading the content of her diapers on things. She is talking mostly in Kipper dialogue. She is not getting better.
The other thing that bugged me is how literary the blogs all were, like they were a contest to seem intellectual. I can write as prettily as the best person, but that isn't what I see this being for, but I have to remind myself---that's just me, and I am writing this FOR MYSELF mainly. I just wish I could find someone like myself, with a girl with autism who is fairly low functioning. Or a boy. Someone who hasn't bought totally into any one philosophy and is skeptical of all treatments, someone who knows the difference between mild Aspergers that might turn into no Aspergers (which was my son William's story) and hard core autism.
This is a nasty post. But it's how I'm feeling right now.
The other thing that bugged me is how literary the blogs all were, like they were a contest to seem intellectual. I can write as prettily as the best person, but that isn't what I see this being for, but I have to remind myself---that's just me, and I am writing this FOR MYSELF mainly. I just wish I could find someone like myself, with a girl with autism who is fairly low functioning. Or a boy. Someone who hasn't bought totally into any one philosophy and is skeptical of all treatments, someone who knows the difference between mild Aspergers that might turn into no Aspergers (which was my son William's story) and hard core autism.
This is a nasty post. But it's how I'm feeling right now.
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