As an avid reader of this blog, I am very honored to be allowed to write stuff here.
The Mrs. had been saying how I should start a blog and I mentioned that I thought Blogspot allowed for multiple bloggers, and here we are. A put up or shut up type situation.
No more backseat blogging for me, such as the suggestion that she post the 'Dinosaur Center' comment from Andy.
Joey was in one of his totally locked-in and focused moods today, which means that he was on his Leappad doohickey all day. Now, we have learned that when he appears to be off in lala-land, he actually is only devoting 80% of his attention to one thing. There's still 20% left for other things, which occasionally includes hearing, which is always nice.
He was so focused on learning cursive writing that it appeared to everyone at dinner that he was off in his own little world. Which is basically the perception of autistic people- that they are oblivious to their surroundings. Not interested in other people. Humorless automatons.
Well, five minutes with Joey will destroy that perception. In this case, Andy was tired and telling everyone "no" and to leave him alone, when Joey piped up, "Leaf me alawwwnn", without even looking up from his toy, and began to giggle. (Poor kid, he comes by this smart-aleck behavior honestly...)
So, anyway. Hi. Thanks JM for letting me graffiti your blog from time to time. Don't worry, folks, I won't hog the mic.
Saturday, March 15, 2008
Please welcome...
I have added JoeyAndyDad, my adorable and wonderful husband, as an author to our blog. Be looking for new posts by JoeyAndyDad soon! And be sure to say "hi"!
Random moments II
In a room full of school personnel, discussing Joey's strengths and weaknesses, it is much like a sea of fog with oases of insights into what Joey can and cannot do. His expressive language deficits are severe, yet he seems to speak because he scripts so well. This is not getting through to them, you can see it in the blank eyes and confused frowns. "Have you ever read A Wrinkle In Time?" I offer. "He's like Mrs. Who." Faces light up. Understanding is gained. We are all on the same page. How often does that happen?
I race over to the door of Andy's classroom- it is already open. I am late. Not much, but enough. He is left waiting. His teacher spots me, calls into the room. Out tumbles a small yellow thing, who pounces into my arms. The teacher gives me a double thumbs-up. Good day. No time-outs. The little yellow-clad child chatters at me, something about green, birds, and dinosaurs. The dinosaurs part may just be his inclination to add the word "dinosaurs" to the ends of sentences (kind of like King George in Blackadder adding the word "penguin.") He could very well have said "The trees are green and full of birds dinosaurs." In fact, he is saying something like that, as there is a shrub on the way to the car that is full of birds and newly popped buds of leaves, and he is drawn to it like pins to a magnet. If it's alive, Andy is all over it. He dances around the shrub for a minute or two before I get him to the car. He starts to yell, "No Grandma! Don't want Grandma!" until he notices that her usual seat is unoccupied. He stops. He stares. He turns to me. "Where is Grandma?" he demands sternly. "She's not here today, honey," I explain patiently. "We're going over to the office to see if she took her trip to Baltimore." He begins to melt down. No! No Grandma! Where is Grandma? (Grandma, never forget, you are loved...)
"Hard day." These are two words that strike fear and concern into my heart, especially when they are at the start of the conversation with Joey's classroom aide. I get to talk to her when I pick him up for therapy. Joey is not usually violent, but today he came for a classmate like a crazed thing as gym was ending. They had been sharing a ball, bouncing it between them in some kind of game. When it came time to put it away, the other child was putting it away when Joey came for him, and hit him. He also had been sassing the aide, also unusual. There had been an assembly, could that have set him off? I take him to the car, tell Grandma the news. There is nothing for it- we have to ask, even during after-school mood. "How was school today?" Grandma asks cheerfully, and we make ground right away (he's just been listening to Mrs. Shaw talk about his day, after all). "D. keeps taking the ball!" We want to cheer, he answered with relevant information, but we want more information. Grandma comes up with a usually calming question, as this response has upset him, "What color was the ball?" "Blue." Ah, the color of the week. All explained.
The boys bounce in, still in pajamas, having granted us the luxury of a lie-in to 8 am. I have spent another night in the recliner to accommodate our regular nightly boy visit. They happily pile on, a great heap of boys. Joey snuggles into my space, kicking me aside again. "Momma! Move!" he demands, "Not enough room! Get in the chair!" Ah, cast aside like an old shoe.
We decide to go researching some home repair materials, including a new bike shed for the bikes. Off to Lowe's! We pull around the corner in sight of the store, and Joey triumphantly reads, "Garden Center!" "Good reading!" we praise him and clap. Then Andy announces, just as triumphantly, "Dinosaur Center!" Laughing that hard while driving is very dangerous.
The pizza place is familiar, but crowded, so Joey takes in the toy du jour, a Leapfrog Phonics writing desk. Several other customers give us the hard looks of the unappreciative as the toy beeps and talks, announcing the letter and playing its little tune as it demonstrates how to write the letter. "G!" Joey announces, "My last name!" All well and good. I look over at what my kindergartener has written to see a perfectly done cursive "G". Ah yes, the toy has a cursive setting. I better send a warning email to his teachers when I get home.
I race over to the door of Andy's classroom- it is already open. I am late. Not much, but enough. He is left waiting. His teacher spots me, calls into the room. Out tumbles a small yellow thing, who pounces into my arms. The teacher gives me a double thumbs-up. Good day. No time-outs. The little yellow-clad child chatters at me, something about green, birds, and dinosaurs. The dinosaurs part may just be his inclination to add the word "dinosaurs" to the ends of sentences (kind of like King George in Blackadder adding the word "penguin.") He could very well have said "The trees are green and full of birds dinosaurs." In fact, he is saying something like that, as there is a shrub on the way to the car that is full of birds and newly popped buds of leaves, and he is drawn to it like pins to a magnet. If it's alive, Andy is all over it. He dances around the shrub for a minute or two before I get him to the car. He starts to yell, "No Grandma! Don't want Grandma!" until he notices that her usual seat is unoccupied. He stops. He stares. He turns to me. "Where is Grandma?" he demands sternly. "She's not here today, honey," I explain patiently. "We're going over to the office to see if she took her trip to Baltimore." He begins to melt down. No! No Grandma! Where is Grandma? (Grandma, never forget, you are loved...)
"Hard day." These are two words that strike fear and concern into my heart, especially when they are at the start of the conversation with Joey's classroom aide. I get to talk to her when I pick him up for therapy. Joey is not usually violent, but today he came for a classmate like a crazed thing as gym was ending. They had been sharing a ball, bouncing it between them in some kind of game. When it came time to put it away, the other child was putting it away when Joey came for him, and hit him. He also had been sassing the aide, also unusual. There had been an assembly, could that have set him off? I take him to the car, tell Grandma the news. There is nothing for it- we have to ask, even during after-school mood. "How was school today?" Grandma asks cheerfully, and we make ground right away (he's just been listening to Mrs. Shaw talk about his day, after all). "D. keeps taking the ball!" We want to cheer, he answered with relevant information, but we want more information. Grandma comes up with a usually calming question, as this response has upset him, "What color was the ball?" "Blue." Ah, the color of the week. All explained.
The boys bounce in, still in pajamas, having granted us the luxury of a lie-in to 8 am. I have spent another night in the recliner to accommodate our regular nightly boy visit. They happily pile on, a great heap of boys. Joey snuggles into my space, kicking me aside again. "Momma! Move!" he demands, "Not enough room! Get in the chair!" Ah, cast aside like an old shoe.
We decide to go researching some home repair materials, including a new bike shed for the bikes. Off to Lowe's! We pull around the corner in sight of the store, and Joey triumphantly reads, "Garden Center!" "Good reading!" we praise him and clap. Then Andy announces, just as triumphantly, "Dinosaur Center!" Laughing that hard while driving is very dangerous.
The pizza place is familiar, but crowded, so Joey takes in the toy du jour, a Leapfrog Phonics writing desk. Several other customers give us the hard looks of the unappreciative as the toy beeps and talks, announcing the letter and playing its little tune as it demonstrates how to write the letter. "G!" Joey announces, "My last name!" All well and good. I look over at what my kindergartener has written to see a perfectly done cursive "G". Ah yes, the toy has a cursive setting. I better send a warning email to his teachers when I get home.
Friday, March 14, 2008
Thursday, March 13, 2008
Triennial
Barring snow...
It's tomorrow at 9:30. Should be a piece of cake. Going in prepared for an ambush. Wish I had a new letter from Kluge to take with me, but we'll muddle through.
It's tomorrow at 9:30. Should be a piece of cake. Going in prepared for an ambush. Wish I had a new letter from Kluge to take with me, but we'll muddle through.
Wednesday, March 12, 2008
Tuesday, March 11, 2008
A Field Day
Yesterday was MidWinter Field Day at school- a field trip to the Field House to play field games inside on fake grass- complete with fake dirt. Yes, fake dirt. Apparently it is good for cushioning. The kids get just as dirty, by the way the "fake dirt" rubs into little hands and smudges across little faces and clothes. But they don't get wet or cold, so there's a plus.
The whole kindergarden went. I got to go as a chaperone. I had to meet them there, because there was no room on the bus (I noticed I was the only parent waiting for the buses in the parking lot. I was also the only special ed parent. Go figure.) We had five adults for six kids. Other classrooms had four to five adults for twenty to thirty, except the inclusion room- they only had 18 kids.
Our kids had a great time. We modified the games a little, so the instructions were easier to follow and expectations more in line with success. For example, we had a relay race that required our kids to jump, gallop, and skip. We all looked at one another in dismay- none of our kids can skip. So we kept the jumping, had them try the galloping, and then had them run. Also, our group was eerily quiet. The other groups were running around, screaming, squealing, laughing, yelling to each other. Quite a din. But ours? Well, we had laughing and some squealing, one kid with several (expected) meltdowns, but really, quiet. Most of them don;t speak well.
In some ways, the day was startling. Seeing Joey next to his non-disabled peers always highlights his disabilities. I just don't think of Joey as disabled most of the time. He's Joey, he has special needs, I have to pay attention to the supports he needs- but I just don't think about him as disabled. He's Joey. Next to the general uproar, it is always a bit of a shock to see what other kids can do, and Joey clearly cannot. He's so close... so close... yet so far, so separated. It was also a little disturbing to see kids that clearly needed to be in special ed who were not. Like Joey, you could see the isolation. Left in the swarm, they were left out, ridiculed, pestered, nagged. Adults were too taken up with supervising so many kids that there was no possibility of supporting those kids properly. One kid toe-walked and flapped all the way from the bus into the building, and every time I saw him, he was sitting against a wall, instead of participating. That was sad.
But in some ways, it was great. Joey does so much more than he used to. He can follow instructions, he can catch a bean bag, he can run and jump. He even did some crab walking, though he got frustrated with it and finally gave up and just crawled. He did the limbo with his friends. They did a whole game of pretending- pretend to paint pictures, pretend to catch balloons, pretend to ice skate- and he could do these things. And he was so happy, playing among friends. He was happy his mom was there. He was happy to eat a peanut butter sandwich. He was happy to play games. Everybody wanted to be with him, sit next to him, play with him. He was having a fabulous time. He enjoys life.
He was, of course, a mess the rest of the day. That's OK. I just had to hug him more, and smooch on him more, after a morning of lots of extra hugs and kisses.
Life is good.
The whole kindergarden went. I got to go as a chaperone. I had to meet them there, because there was no room on the bus (I noticed I was the only parent waiting for the buses in the parking lot. I was also the only special ed parent. Go figure.) We had five adults for six kids. Other classrooms had four to five adults for twenty to thirty, except the inclusion room- they only had 18 kids.
Our kids had a great time. We modified the games a little, so the instructions were easier to follow and expectations more in line with success. For example, we had a relay race that required our kids to jump, gallop, and skip. We all looked at one another in dismay- none of our kids can skip. So we kept the jumping, had them try the galloping, and then had them run. Also, our group was eerily quiet. The other groups were running around, screaming, squealing, laughing, yelling to each other. Quite a din. But ours? Well, we had laughing and some squealing, one kid with several (expected) meltdowns, but really, quiet. Most of them don;t speak well.
In some ways, the day was startling. Seeing Joey next to his non-disabled peers always highlights his disabilities. I just don't think of Joey as disabled most of the time. He's Joey, he has special needs, I have to pay attention to the supports he needs- but I just don't think about him as disabled. He's Joey. Next to the general uproar, it is always a bit of a shock to see what other kids can do, and Joey clearly cannot. He's so close... so close... yet so far, so separated. It was also a little disturbing to see kids that clearly needed to be in special ed who were not. Like Joey, you could see the isolation. Left in the swarm, they were left out, ridiculed, pestered, nagged. Adults were too taken up with supervising so many kids that there was no possibility of supporting those kids properly. One kid toe-walked and flapped all the way from the bus into the building, and every time I saw him, he was sitting against a wall, instead of participating. That was sad.
But in some ways, it was great. Joey does so much more than he used to. He can follow instructions, he can catch a bean bag, he can run and jump. He even did some crab walking, though he got frustrated with it and finally gave up and just crawled. He did the limbo with his friends. They did a whole game of pretending- pretend to paint pictures, pretend to catch balloons, pretend to ice skate- and he could do these things. And he was so happy, playing among friends. He was happy his mom was there. He was happy to eat a peanut butter sandwich. He was happy to play games. Everybody wanted to be with him, sit next to him, play with him. He was having a fabulous time. He enjoys life.
He was, of course, a mess the rest of the day. That's OK. I just had to hug him more, and smooch on him more, after a morning of lots of extra hugs and kisses.
Life is good.
Sunday, March 09, 2008
Rooster's meme
ghkole at Rooster Calls has put up what she may not know is a meme: questions for us to answer about ourselves and blogging. But I'm game, as usual, so here it is:
- If you blog, do you tell people in your family or at your job about your blog?
No. My husband knows about my blog, and people find it, but I don't run around saying, "Look at my blog!" I have directed a couple folks to it directly, but not a whole lot. I have a separate more photo-laden site for family and friends to follow, that is a little more of a polished and shiny happy look at our lives. This blog is a bit more down-in-the-trenches.
- If so, how does that impact your writing?
I'm not sure. I know it effects the focus here, But mostly I direct people because of the focus, instead of focusing because of the people I direct.
- Do you keep hard copies of your blogs?
I keep a back-up copy on my computer. Which reminds me, i need to make a new one. I don't keep it entry-by-entry because I am an idiot.
- Do you ever not post comments you get?
No, but I have deleted a few that were ads or inappropriate. I do not allow anonymous posting, so that cuts down on the trolls.
- How do you balance writing versus reading?
Balance?
- Do you think of it as a chore or a diversion?
It is a way of life.
- Do you use RSS to keep track of blogs, or what?
No. I don't actually read that many blogs. If I want something new, I check out where my usual crowd is sending their awards, and often see if there is anything that looks interesting on the Autism Hub. Also, I like to check out folks who comment.
- Do you worry about what you write, or what readers will think?
Sometimes. I know that my students can "Google" me and this blog pops right up, so I try to check the language and I don't often wander off my topic. But I don't do anything crazy and interesting enough to threaten my jobs or anything. Otherwise, well, this is what I'm thinking right now, There you go.
Anybody else want to help out ghkole?
- If you blog, do you tell people in your family or at your job about your blog?
No. My husband knows about my blog, and people find it, but I don't run around saying, "Look at my blog!" I have directed a couple folks to it directly, but not a whole lot. I have a separate more photo-laden site for family and friends to follow, that is a little more of a polished and shiny happy look at our lives. This blog is a bit more down-in-the-trenches.
- If so, how does that impact your writing?
I'm not sure. I know it effects the focus here, But mostly I direct people because of the focus, instead of focusing because of the people I direct.
- Do you keep hard copies of your blogs?
I keep a back-up copy on my computer. Which reminds me, i need to make a new one. I don't keep it entry-by-entry because I am an idiot.
- Do you ever not post comments you get?
No, but I have deleted a few that were ads or inappropriate. I do not allow anonymous posting, so that cuts down on the trolls.
- How do you balance writing versus reading?
Balance?
- Do you think of it as a chore or a diversion?
It is a way of life.
- Do you use RSS to keep track of blogs, or what?
No. I don't actually read that many blogs. If I want something new, I check out where my usual crowd is sending their awards, and often see if there is anything that looks interesting on the Autism Hub. Also, I like to check out folks who comment.
- Do you worry about what you write, or what readers will think?
Sometimes. I know that my students can "Google" me and this blog pops right up, so I try to check the language and I don't often wander off my topic. But I don't do anything crazy and interesting enough to threaten my jobs or anything. Otherwise, well, this is what I'm thinking right now, There you go.
Anybody else want to help out ghkole?
Saturday, March 08, 2008
One small voice
And here I take my own small stand in the Poling "debate."
In the Poling case, it was determined that vaccines exacerbated a mitochondrial condition in one child. That catalyst resulted in problems for that child that looked like autism. Is the child autistic? I'm wondering if that is more of a political question than a medical one. So here my politics: yes, the child should be considered autistic. I'm not convinced that what we term "autism" is any one condition- it appears to be a group of behaviors, sensory problems, and communication issues that we group under the umbrella of "autism" just as all the religious traditions of India are umbrella-ed under "Hinduism."
Does this mean vaccines cause autism? Well, no. It means that a child with a mitochondrial condition may have been negatively impacted by vaccines... which has not actually been proven, by the way. What we have is circumstantial appearance, which is enough to get money for her treatment from the government. That is what this vaccine fund was set up for, and so yes, I think they are entitled to the money, and good luck to them. May they come through this with acceptance of their daughter- a beautiful girl- just as she is, and get her the support she needs.
This decision changes no facts about my own child, though I may do some research on mitochondrial disorders, to make sure he doesn't have one. If I found he had something like that, and there were other (legitimate) treatments, that would be important. I have already emailed Joey's doctors about it. I'm not the kind of mom that dismisses things out of hand- I check it out. After all, I suspect this mitochondrial thing would have "autism-like symptoms" even without the dreaded vaccines, right? Because it just "aggravated" the condition? So I'll let you all know what the doctors say. Gotta love email.
So there it is. Good luck to the Polings. Sorry this didn't prove anything. Sorry this whipped up the anti-vaccine crowd as if it had proven something. Ultimately, I suspect that this will only lead to more folks not vaccinating, increasingly the chances of my own kids getting these dangerous diseases. This should have been a quiet case, settled and moved on, nothing more to see here.
>>UPDATE: The email our developmental pediatrician sent back: "No." So there it is.<<
In the Poling case, it was determined that vaccines exacerbated a mitochondrial condition in one child. That catalyst resulted in problems for that child that looked like autism. Is the child autistic? I'm wondering if that is more of a political question than a medical one. So here my politics: yes, the child should be considered autistic. I'm not convinced that what we term "autism" is any one condition- it appears to be a group of behaviors, sensory problems, and communication issues that we group under the umbrella of "autism" just as all the religious traditions of India are umbrella-ed under "Hinduism."
Does this mean vaccines cause autism? Well, no. It means that a child with a mitochondrial condition may have been negatively impacted by vaccines... which has not actually been proven, by the way. What we have is circumstantial appearance, which is enough to get money for her treatment from the government. That is what this vaccine fund was set up for, and so yes, I think they are entitled to the money, and good luck to them. May they come through this with acceptance of their daughter- a beautiful girl- just as she is, and get her the support she needs.
This decision changes no facts about my own child, though I may do some research on mitochondrial disorders, to make sure he doesn't have one. If I found he had something like that, and there were other (legitimate) treatments, that would be important. I have already emailed Joey's doctors about it. I'm not the kind of mom that dismisses things out of hand- I check it out. After all, I suspect this mitochondrial thing would have "autism-like symptoms" even without the dreaded vaccines, right? Because it just "aggravated" the condition? So I'll let you all know what the doctors say. Gotta love email.
So there it is. Good luck to the Polings. Sorry this didn't prove anything. Sorry this whipped up the anti-vaccine crowd as if it had proven something. Ultimately, I suspect that this will only lead to more folks not vaccinating, increasingly the chances of my own kids getting these dangerous diseases. This should have been a quiet case, settled and moved on, nothing more to see here.
>>UPDATE: The email our developmental pediatrician sent back: "No." So there it is.<<
Friday, March 07, 2008
In the Beginning
It is a little-known trivia of my life that I one time re-wrote the Book of Genesis as a way to pass the time and waste lots of study hours in college. However, this version is much, much better.. It's much funnier if you regularly visit I Can Has Cheezburger, so if you don't, do that first.
NIghtlight
Hmmm. We installed a nightlight in Andy's room last night. Funny, we had no screaming, no visits from that child, and no problems getting him to go to sleep in the first place. This time last year, even a sliver of light in that room resulted in all-night problems. How children change as they grow up... we're glad he had a good night. Here's hoping for a trend.
Wednesday, March 05, 2008
If there was ever doubt
Well, I'm not voting for McCain. No, politicians, like the rest of us, can't know everything about everything. But they have advisors. And if you can't pick decent advisors, what kind of president are you going to be?
And for folks who don't think people believe sham science, like that presented in popular media outlets and tv shows... well, presidential candidates do...
And for folks who don't think people believe sham science, like that presented in popular media outlets and tv shows... well, presidential candidates do...
Tuesday, March 04, 2008
Proud to be me
If you haven't read the latest article from Wired, go have a peek. It has its ups and downs, but its always good to know where the ups and downs are.
One comment (of several) that struck me was attributed to Fred Volkmar: "[he] likens [the idea of autism as a difference instead of a disorder] to telling a physically disabled person: 'You don't need a wheelchair. Walk!' "
This struck me because it has nothing to do with the idea of difference at all. None. Zero. Zip.
Nothing in the neurodiversity movement or the "difference model" says autistic people may not need supports. What seems to be said is that, just as a person who may need a wheelchair to be mobile is still human, so are autistic people. An inability to communicate does not mean a person is stupid. I know lots of people with Ph.D.s who are stupid, who speak for a living. It's not about telling the person in the wheelchair to walk. It's about making sure they have a fabulous wheelchair and ramps and that the doors are wide enough to get the chair through. It is understanding that a person in a wheelchair is mobile, they go out to lunch, go to the library, may need to go to the hospital.
It's about not expecting autistic kids to take SOL tests without appropriate supports. We don't ask the blind child to take a test without providing the test either orally, or in braille- and if in braille, we make sure they have been taught braille. We help them to be independent. Why should I ask any less for my child? Either child?
In a related blog entry in the NY Times, one of the commenters thought it was a "stretch" to have an autistic pride movement because "Disabilities are obstacles to anyone who wishes both to be a part of society and to function as an autonomous, independent adult, and the cognitive and communicative dysfunction that typifies autism is severe."
First, I take issue with the idea that there is severe cognitive dysfunction. This goes with the idea at 70% of autistics are mentally retarded... which we are learning is just not the case. I suspect mental retardation is no more prevalent in autistic populations than in the general population. However, this may be a problem to determine, as anyone with a communicative dysfunction or disorder is often labeled "mentally retarded" in our society. Heck, my Andy's articulation problems would at one time have slapped him with a label of being cognitively deficient or impaired! A person with a stutter may need speech therapy, but does that mean they are intellectually challenged?
Moving on to the point; what's wrong with it being a "pride" movement?
So much of the literature on autism is negative. That is part of the point of the Wired article- all this negativity ignores what autistic people can do, in favor of what they can't do. Funding is not for understanding, it is only for fixing. I still have no idea how you can even try to fix something if you can't see if or how it is broken, so I would think there would be more money trying to figure out how brains work, and how the autistic brain is different. But there isn't. Very strange.
I have wandered off the point again: pride. I certainly hope when Joey grows older and starts to explore himself and his identity, he can find pride in being Joey. Pride movements are not about fitting into society. They are about identity politics. It is about being able to seize control of labels and being who you are, and creating your identity based on who you are. There is nothing inherently evil in being autistic, it is an inherent part of who Joey is. Why not be proud of being who he is?
As Rachel says at Signing Time:
It doesn't matter what you look like
The things you can and cannot do
Just be a boy or be a girl
Feel proud that you are you!
What's wrong with that?
Joey has just as much right to be proud to be Joey as you have the right to be proud of being you. May he seize the labels and take control of his own identity with the same strength of character and joy of living as anyone else. People who love Starbucks. People who are Americans. We have a Welsh Society here, those people couldn't help being born Welsh. We have a fabulous deaf community here, and those folks didn't choose to be deaf. But there is power in seizing who you are, just as you seize the things you do control- just like the Mommy Club, the Bowling League, or the Western Line Dancing Society. We create pride movements and identities every day. Don't deny that to someone just because they don't share your identity.
One comment (of several) that struck me was attributed to Fred Volkmar: "[he] likens [the idea of autism as a difference instead of a disorder] to telling a physically disabled person: 'You don't need a wheelchair. Walk!' "
This struck me because it has nothing to do with the idea of difference at all. None. Zero. Zip.
Nothing in the neurodiversity movement or the "difference model" says autistic people may not need supports. What seems to be said is that, just as a person who may need a wheelchair to be mobile is still human, so are autistic people. An inability to communicate does not mean a person is stupid. I know lots of people with Ph.D.s who are stupid, who speak for a living. It's not about telling the person in the wheelchair to walk. It's about making sure they have a fabulous wheelchair and ramps and that the doors are wide enough to get the chair through. It is understanding that a person in a wheelchair is mobile, they go out to lunch, go to the library, may need to go to the hospital.
It's about not expecting autistic kids to take SOL tests without appropriate supports. We don't ask the blind child to take a test without providing the test either orally, or in braille- and if in braille, we make sure they have been taught braille. We help them to be independent. Why should I ask any less for my child? Either child?
In a related blog entry in the NY Times, one of the commenters thought it was a "stretch" to have an autistic pride movement because "Disabilities are obstacles to anyone who wishes both to be a part of society and to function as an autonomous, independent adult, and the cognitive and communicative dysfunction that typifies autism is severe."
First, I take issue with the idea that there is severe cognitive dysfunction. This goes with the idea at 70% of autistics are mentally retarded... which we are learning is just not the case. I suspect mental retardation is no more prevalent in autistic populations than in the general population. However, this may be a problem to determine, as anyone with a communicative dysfunction or disorder is often labeled "mentally retarded" in our society. Heck, my Andy's articulation problems would at one time have slapped him with a label of being cognitively deficient or impaired! A person with a stutter may need speech therapy, but does that mean they are intellectually challenged?
Moving on to the point; what's wrong with it being a "pride" movement?
So much of the literature on autism is negative. That is part of the point of the Wired article- all this negativity ignores what autistic people can do, in favor of what they can't do. Funding is not for understanding, it is only for fixing. I still have no idea how you can even try to fix something if you can't see if or how it is broken, so I would think there would be more money trying to figure out how brains work, and how the autistic brain is different. But there isn't. Very strange.
I have wandered off the point again: pride. I certainly hope when Joey grows older and starts to explore himself and his identity, he can find pride in being Joey. Pride movements are not about fitting into society. They are about identity politics. It is about being able to seize control of labels and being who you are, and creating your identity based on who you are. There is nothing inherently evil in being autistic, it is an inherent part of who Joey is. Why not be proud of being who he is?
As Rachel says at Signing Time:
It doesn't matter what you look like
The things you can and cannot do
Just be a boy or be a girl
Feel proud that you are you!
What's wrong with that?
Joey has just as much right to be proud to be Joey as you have the right to be proud of being you. May he seize the labels and take control of his own identity with the same strength of character and joy of living as anyone else. People who love Starbucks. People who are Americans. We have a Welsh Society here, those people couldn't help being born Welsh. We have a fabulous deaf community here, and those folks didn't choose to be deaf. But there is power in seizing who you are, just as you seize the things you do control- just like the Mommy Club, the Bowling League, or the Western Line Dancing Society. We create pride movements and identities every day. Don't deny that to someone just because they don't share your identity.
Sunday, March 02, 2008
Food and the Preschooler
So you may remember my preschooler decided to stop eating foods. We didn't quite get to the neophobe stage, but it was starting to drive me frantic. We seem to have re-reached the normal "picky preschooler" level, so I'm feeling better.
This week, the menu is bacon, yogurt, poptarts, bacon, american cheese, milk, soda, bacon, calamari ("tidbits"... hey, if he's going to eat something, why not?), parmesan cheese, ketchup, bacon, bacon, chicken nuggets, french fries (started back yesterday), sugar cookies, fruit snacks (which we consider candy), bacon, lettuce, grapes, strawberries, bacon, taco meat, corn chips, potato chips, and bacon.
Schwan's sells precooked bacon that is expensive as hell, but very, very yummy, right from the fridge. That's right. Cold. Its good warmed, too, but the boys prefer it cold. Coronary in a bag. Woo-hoo!
This week, we're going to try carrots, some more veggies (peas would be nice to have back on the list, they're easy to grow), and I may try chicken again. We'll see.
This week, the menu is bacon, yogurt, poptarts, bacon, american cheese, milk, soda, bacon, calamari ("tidbits"... hey, if he's going to eat something, why not?), parmesan cheese, ketchup, bacon, bacon, chicken nuggets, french fries (started back yesterday), sugar cookies, fruit snacks (which we consider candy), bacon, lettuce, grapes, strawberries, bacon, taco meat, corn chips, potato chips, and bacon.
Schwan's sells precooked bacon that is expensive as hell, but very, very yummy, right from the fridge. That's right. Cold. Its good warmed, too, but the boys prefer it cold. Coronary in a bag. Woo-hoo!
This week, we're going to try carrots, some more veggies (peas would be nice to have back on the list, they're easy to grow), and I may try chicken again. We'll see.
Saturday, March 01, 2008
Saturday Adventure, Part One
We went to Dinosaur Land today. Andy is in love. Joey liked the big shark. Overall, a hit. Unfortunately, its a bit of a drive for us to get there. I'm going to look into what else is around Winchester so we can make more of an adventure of it.
Friday, February 29, 2008
Meeting Interrupted
So off I slogged to school this morning, to talk with Joey's teachers. Here in the Old Dominion, special ed kids are sent home report cards like everyone else- and based on the "norm" of a regular classroom performance. Kind of. So although Joey is reading on a first grade level, writing sentences, and doing simple subtraction, he is not assigned a grade of "successful", but instead a line of "progressing with effort." The other choice is "needs improvement." Why is he not considered "successful"? Because he cannot answer questions consistently.
Remember that my kid has a serious expressive communication disability.
This is kind of like giving a blind child a poor report in reading because the child cannot see the page, even though they can read braille fluently. Give the kid in the wheelchair a poor report for phys ed, because the child cannot walk, even though they have a wickedly good throwing arm. No, I have a better one. Give the deaf child a poor report in language arts because, although they can both sign and speak, they cannot maintain consistent pitch or always pronounce a sound clearly and at consistent volume.
In other words, this piece of paper is, for us, trash. Wasted pulp. Someone call in the police, we have murdered a tree with malice aforethought. All it tells me is that Joey cannot perform at the same consistent level of a non-disabled peer in areas where he must use spoken language to prove his understanding of the material. Nuh.
But that's not why I'm blogging about this.
In the middle of this discussion, and the discussion of how to explain to Joey's family that this piece of paper tells us exactly nothing, another school employee wanders in, and notes that if Joey does too well on this piece of paper, they will start talking about taking him out of the self-contained setting.
Now, that is likely very true. And if he was getting really great grades, maybe it is something that ought to be considered. We are certainly thinking about giving him more time in an inclusion setting. However, it was not the bare statement that's really the problem- its the way this person says these kinds of things. It's like she's saying we shouldn't be striving to help and support Joey, because then "they" are going to yank service. The only person who has tried to yank service based on a piece of paper has been... well, her. There is a tone of "if your kid does too well, then he's going to get tossed." Excuse me? Because support is working, you're going to try to yank it?
If that's a warning, thank you. If not, shut your mouth and be civil for once.
Remember that my kid has a serious expressive communication disability.
This is kind of like giving a blind child a poor report in reading because the child cannot see the page, even though they can read braille fluently. Give the kid in the wheelchair a poor report for phys ed, because the child cannot walk, even though they have a wickedly good throwing arm. No, I have a better one. Give the deaf child a poor report in language arts because, although they can both sign and speak, they cannot maintain consistent pitch or always pronounce a sound clearly and at consistent volume.
In other words, this piece of paper is, for us, trash. Wasted pulp. Someone call in the police, we have murdered a tree with malice aforethought. All it tells me is that Joey cannot perform at the same consistent level of a non-disabled peer in areas where he must use spoken language to prove his understanding of the material. Nuh.
But that's not why I'm blogging about this.
In the middle of this discussion, and the discussion of how to explain to Joey's family that this piece of paper tells us exactly nothing, another school employee wanders in, and notes that if Joey does too well on this piece of paper, they will start talking about taking him out of the self-contained setting.
Now, that is likely very true. And if he was getting really great grades, maybe it is something that ought to be considered. We are certainly thinking about giving him more time in an inclusion setting. However, it was not the bare statement that's really the problem- its the way this person says these kinds of things. It's like she's saying we shouldn't be striving to help and support Joey, because then "they" are going to yank service. The only person who has tried to yank service based on a piece of paper has been... well, her. There is a tone of "if your kid does too well, then he's going to get tossed." Excuse me? Because support is working, you're going to try to yank it?
If that's a warning, thank you. If not, shut your mouth and be civil for once.
Thursday, February 28, 2008
Update: Allergist
First, thank you Joe for your reassuring message about the lidocaine. I followed the doctor's recommendations for use to the letter, complete with saran wrap.
Unfortunately, it didn't work. I know the cream was good, because my fingertips were slightly numbed just getting it on him. But then they came at him with eleven hypodermic needles, and he let us know he was unhappy with each and every one. remember, Joey usually has a very high pain tolerance. Yikers.
He bled, but nothing swelled, so no allergies. The best we can figure, it is some kind of contact allergy, probably something found in the cleaner they use on the school carpets, or something in the carpet itself. We may never know, but the doctor was still unhappy with his rash- the one he has all the time, that doesn't itch, so she wants us back in three months.
He was such a little trooper- he didn't like those needles, but didn't move or scream or anything, just squinched his face and said, "Ouch! Hurts!" So I took him to the toy store and got him a new truck. He was so upset that his teacher let him hold on to the new truck when I took him to school. His ABA session was a disaster. He's now in bed after plenty of hugs and kisses, with his new truck. I thought the routine of school might be comforting for him. Now I wish I had just taken him home.
Unfortunately, it didn't work. I know the cream was good, because my fingertips were slightly numbed just getting it on him. But then they came at him with eleven hypodermic needles, and he let us know he was unhappy with each and every one. remember, Joey usually has a very high pain tolerance. Yikers.
He bled, but nothing swelled, so no allergies. The best we can figure, it is some kind of contact allergy, probably something found in the cleaner they use on the school carpets, or something in the carpet itself. We may never know, but the doctor was still unhappy with his rash- the one he has all the time, that doesn't itch, so she wants us back in three months.
He was such a little trooper- he didn't like those needles, but didn't move or scream or anything, just squinched his face and said, "Ouch! Hurts!" So I took him to the toy store and got him a new truck. He was so upset that his teacher let him hold on to the new truck when I took him to school. His ABA session was a disaster. He's now in bed after plenty of hugs and kisses, with his new truck. I thought the routine of school might be comforting for him. Now I wish I had just taken him home.
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