We re in the midst of the joys of old bathrooms. This house is funny that way. The stuff in teh front of the house- built in 1929- gives us little trouble. Stuff in teh addition- circa 1983 downstairs and circa 1994 upstairs- is a mess. I mean a mess. This week its the shower. I think they must have tried to do the tiling themselves. Now we're trying to decide whether to just get a liner and seal the trashwork in, with the assumption that we will be ripping out most of this part of the house in about three to five years, or to do real repairs.
In anticipation of the grand event, we need to shut down teh use of our shower, and use the boy's bathroom. The caulk around the tub was cracking, so if it was about to be heavily used for showers instead of baths, it was time to re-caulk- or face another fun-filled bathroom problem. So I got out my handy-dandy scraper, got the old caulk off, put some fresh caulk down (new caulk is really wild stuff- far less conspicuous than the old stuff. Or I'm doing something really, really wrong.) The new caulk requires 36 hours to cure before exposing to moisture.
It went on so beautifully that it is (clearly) making me a little uncomfortable. So I checked it again this morning, and redid any spots that looked like they might be dodgy. We already had one night of no bathing the boys- two in a row won't do. We need a bathing solution.
That appears to be taking Indian-style showers in our bathroom. You know, the one we're supposed to be shutting down. :P Now imagine this: two boys. Water in a bucket. Soap.
Am I the only one who foresees two small, naked, wet, soapy bodies hurtling through the upstairs with squeals of glee?
Saturday, November 03, 2007
Friday, November 02, 2007
Missing the Boy
Yesterday Andy had his first Kaleidoscope class. Kaleidoscope is a series of classes through the rec center for preschoolers. Each week is a different theme. They do crafts, read stories, sing songs, and talk about the different topics. This week was dinosaurs- so Andy was in seventh heaven. He got a new cardboard dinosaur mask, so he's a very happy boy.
It was also interesting for me. For one, I got to see a few more parents who have kids who are not in preschool- at least not on Thursdays. For two, I got to see Andy in action with other kids his age. He did perfectly. He wasn't the best kid, but he did just fine- he sat on the tape line when asked. He talked about his dinosaurs when asked to. He waited as well as everybody else (which, granted, wasn't perfect- but then, they were 3 and 4 years old!) He only had a little trouble when he asked for a T-Rex and got a Pteradactyl instead; but someone who wanted the pteradactyl traded, so that worked out. The teacher kept the lights down, which I think helped a lot. He didn't get flustered with all the kids, he did the coloring and rubbings, and otherwise had a fabulous time- like all the other kids. It was fantastic!
Joey would have loved it, too. He can do all of those things- sit in a circle, listen to a story, color... maybe not perfectly, but then, no one was doing it perfectly. He might not be able to answer questions about his dinosaur, but he would have grinned and charmed everyone anyway- and had a great time. I knw he has fun at school, but I do miss that boy.
Today is Friday- Joey's afternoon off. I'm considering all the things I could do with him. Theymight all be for naught, because my car is in the shop and I might have to disturb the afternoon to go get it, but still... a few hours with both my boys! Should we make playdough? Or pumpkin bread? Or maybe go to Chuck E. Cheese? Or perhaps head out to Wakefield for a little fall stroll? We've been out to Snead's alot, so perhaps something different. Maybe make turkey decorations? Or go to Grandma's and have a nature walk? I could make a fire in teh fireplace, and have them toast marshmallows? Or we could wander over to Aunt Christina's and visit Max and Charlie and Jack? Or go to the playground? We could get out the paints and markers and glue and have an art show. We cold go outside and relax in the sandbox. Perhaps we should start getting into the holiday swing and make a gingerbread house? Maybe we could go shopping and look a the Christimas stuff that's (already!) out? Perhaps we should stick to making pilgrim puppets and cornucopia pictures?
What is the best way to hug my boys and smooch on them and let them have a fabulous time?
Another afternoon where cleaning the house is put off for more important things...
It was also interesting for me. For one, I got to see a few more parents who have kids who are not in preschool- at least not on Thursdays. For two, I got to see Andy in action with other kids his age. He did perfectly. He wasn't the best kid, but he did just fine- he sat on the tape line when asked. He talked about his dinosaurs when asked to. He waited as well as everybody else (which, granted, wasn't perfect- but then, they were 3 and 4 years old!) He only had a little trouble when he asked for a T-Rex and got a Pteradactyl instead; but someone who wanted the pteradactyl traded, so that worked out. The teacher kept the lights down, which I think helped a lot. He didn't get flustered with all the kids, he did the coloring and rubbings, and otherwise had a fabulous time- like all the other kids. It was fantastic!
Joey would have loved it, too. He can do all of those things- sit in a circle, listen to a story, color... maybe not perfectly, but then, no one was doing it perfectly. He might not be able to answer questions about his dinosaur, but he would have grinned and charmed everyone anyway- and had a great time. I knw he has fun at school, but I do miss that boy.
Today is Friday- Joey's afternoon off. I'm considering all the things I could do with him. Theymight all be for naught, because my car is in the shop and I might have to disturb the afternoon to go get it, but still... a few hours with both my boys! Should we make playdough? Or pumpkin bread? Or maybe go to Chuck E. Cheese? Or perhaps head out to Wakefield for a little fall stroll? We've been out to Snead's alot, so perhaps something different. Maybe make turkey decorations? Or go to Grandma's and have a nature walk? I could make a fire in teh fireplace, and have them toast marshmallows? Or we could wander over to Aunt Christina's and visit Max and Charlie and Jack? Or go to the playground? We could get out the paints and markers and glue and have an art show. We cold go outside and relax in the sandbox. Perhaps we should start getting into the holiday swing and make a gingerbread house? Maybe we could go shopping and look a the Christimas stuff that's (already!) out? Perhaps we should stick to making pilgrim puppets and cornucopia pictures?
What is the best way to hug my boys and smooch on them and let them have a fabulous time?
Another afternoon where cleaning the house is put off for more important things...
Wednesday, October 31, 2007
Happy Halloween!
We had a pretty good Halloween.
I had to work, so I missed most of it. But we got the pumpkins carved, and the boys went Trick or Treating pretty early so I could see them in their costumes. I think they were pretty excited. Andy practically ran house-to-house. Joey was just happy to be Little Bear.
Carving the pumpkins is something of an adventure. Andy doesn't like his hands to be icky, but once Joey got home to do his pumpkins, Andy was all about it. Andy preferred the carving. We did a new thing this year, with cookie-cutter like things. You put the cutters on the pumpkin, then beat the crap out of them until they punch through. Needless to say, Andy was in heaven. Joey wasn't so sure, but he loves getting his hands into the pumpkin stuff. Since he usually likes clean hands, too, this love of goo is a real mystery.
Of course, Joey had to wear his Little Bear hood. I think he was pretty pleased to see a whole costume went with it. He even insisted on wearing it during most of the carving festivities. He was pretty pleased with himself.
He insisted on his second pumpkin being a face like a "real jack-o-lantern!" so I had him draw out a face, and then he sat and instructed me as to the carving of his jack-o-lantern... triangle eyes, and a round nose, and a mouth just like a plastic light-up jack-o-lantern the boys were playing with. I usually use a lot of stencils to do pumpkins- simple ones. The complicated ones just never turn out nice for me. Simple ones do fabulous.
I wonder what to do now... do I pack the hood away, hoping to wear the costume next year (I had to pin up the legs)? Or do i let him have his Little Bear hood that makes him so happy, and hope it survives a year of use (and abuse)? Or do I race out to the shop, and try to get another round of fabric to make a new hood for next year? I have the feeling I will be in the fabric store in the morning...
Just as Joey got to be Little Bear, Andy got to be T-Rex. Anything Andy thinks is scary or unknown, especially things with bones, is a "dinosaur" right now. There were some scary decorations up at the gym, and he was fine with them, as long as they were dinosaurs. I didn't disillusion him.
Yes, one Little Bear and one T-Rex. My children's true selves emerged as they danced up the street in search of chocolate and lollipops...
I had to work, so I missed most of it. But we got the pumpkins carved, and the boys went Trick or Treating pretty early so I could see them in their costumes. I think they were pretty excited. Andy practically ran house-to-house. Joey was just happy to be Little Bear.
Carving the pumpkins is something of an adventure. Andy doesn't like his hands to be icky, but once Joey got home to do his pumpkins, Andy was all about it. Andy preferred the carving. We did a new thing this year, with cookie-cutter like things. You put the cutters on the pumpkin, then beat the crap out of them until they punch through. Needless to say, Andy was in heaven. Joey wasn't so sure, but he loves getting his hands into the pumpkin stuff. Since he usually likes clean hands, too, this love of goo is a real mystery.
Of course, Joey had to wear his Little Bear hood. I think he was pretty pleased to see a whole costume went with it. He even insisted on wearing it during most of the carving festivities. He was pretty pleased with himself.
He insisted on his second pumpkin being a face like a "real jack-o-lantern!" so I had him draw out a face, and then he sat and instructed me as to the carving of his jack-o-lantern... triangle eyes, and a round nose, and a mouth just like a plastic light-up jack-o-lantern the boys were playing with. I usually use a lot of stencils to do pumpkins- simple ones. The complicated ones just never turn out nice for me. Simple ones do fabulous.
I wonder what to do now... do I pack the hood away, hoping to wear the costume next year (I had to pin up the legs)? Or do i let him have his Little Bear hood that makes him so happy, and hope it survives a year of use (and abuse)? Or do I race out to the shop, and try to get another round of fabric to make a new hood for next year? I have the feeling I will be in the fabric store in the morning...
Just as Joey got to be Little Bear, Andy got to be T-Rex. Anything Andy thinks is scary or unknown, especially things with bones, is a "dinosaur" right now. There were some scary decorations up at the gym, and he was fine with them, as long as they were dinosaurs. I didn't disillusion him.
Yes, one Little Bear and one T-Rex. My children's true selves emerged as they danced up the street in search of chocolate and lollipops...
Monday, October 29, 2007
Tears
Joey had a field trip today to a fancier pumpkin patch than the one we go to. I like ours better, but that's for a different day. The point is, he went. Then he came home.
Another incident occurred between field trip and home. The bus had to take a child back to school. Due to increased press about kids being left strange places by buses around here, such as poor Stimey experienced, instead of returning to school at the end of the route, the bus drivers now must take the child IMMEDIATELY back to school, then go back on their route. When the bus arrived back at school, apparently Joey got himself out of his seat and started to get off the bus, and had to be re-settled.
When Joey arrived home ten minutes late, he got off the bus and practically ran to the house. I thought it a bit strange, but said goodbye to the driver and followed him. I found him in the living room, his face buried in the couch cushions, absolutely inconsolable.
Thus begins a game of Twenty Questions that breaks the heart. Joey is not good at questions, but without them, I have no way of getting any information. Unfortunately, even if he answers a question, the answer may or may not be accurate, relevant, or even make any sense. It becomes a very strange game of Sherlock Holmes, sifting through the words I get to come up with some clues to what occurred with the child over the day, and to see if any of those occurrences might explain the current behavior. To make things more complicated, any incident he describes or offers may or may not have actually happened to him... he can get just as upset about something that happened to a classmate in his presence as something that happens to himself.
The clues I have are that he does not want to be hugged (HIGHLY unusual), something about Andy is not here (Andy was sitting right next to him) and Where is Andy? Something about Mrs. S and Mrs. H (his teachers), the bus, and someone asking him "Do you understand me?", a possibility that he almost missed the bus, and he refuses absolutely to discuss the field trip or look at the pumpkin he brought home. He also says he will miss recess, and will miss "first."
My current theory is that he did not get on the bus like he was supposed to, probably to come back from the field trip, and was threatened with either not having recess or some other threat if he did not get on the bus. He did not respond (probably process what was being said to him); perhaps he was asked to get on, then escalated to telling him his teachers were on the bus, to that inane question ("Do you understand me?"), to threats of punishment. If he was already upset, such a scene would certainly be traumatizing.
However, I have NO IDEA. I emailed the teachers, but have yet to have a response, so I sit here with no way to untangle these threads, and to try to talk to him about what happened- or didn't happen.
Another incident occurred between field trip and home. The bus had to take a child back to school. Due to increased press about kids being left strange places by buses around here, such as poor Stimey experienced, instead of returning to school at the end of the route, the bus drivers now must take the child IMMEDIATELY back to school, then go back on their route. When the bus arrived back at school, apparently Joey got himself out of his seat and started to get off the bus, and had to be re-settled.
When Joey arrived home ten minutes late, he got off the bus and practically ran to the house. I thought it a bit strange, but said goodbye to the driver and followed him. I found him in the living room, his face buried in the couch cushions, absolutely inconsolable.
Thus begins a game of Twenty Questions that breaks the heart. Joey is not good at questions, but without them, I have no way of getting any information. Unfortunately, even if he answers a question, the answer may or may not be accurate, relevant, or even make any sense. It becomes a very strange game of Sherlock Holmes, sifting through the words I get to come up with some clues to what occurred with the child over the day, and to see if any of those occurrences might explain the current behavior. To make things more complicated, any incident he describes or offers may or may not have actually happened to him... he can get just as upset about something that happened to a classmate in his presence as something that happens to himself.
The clues I have are that he does not want to be hugged (HIGHLY unusual), something about Andy is not here (Andy was sitting right next to him) and Where is Andy? Something about Mrs. S and Mrs. H (his teachers), the bus, and someone asking him "Do you understand me?", a possibility that he almost missed the bus, and he refuses absolutely to discuss the field trip or look at the pumpkin he brought home. He also says he will miss recess, and will miss "first."
My current theory is that he did not get on the bus like he was supposed to, probably to come back from the field trip, and was threatened with either not having recess or some other threat if he did not get on the bus. He did not respond (probably process what was being said to him); perhaps he was asked to get on, then escalated to telling him his teachers were on the bus, to that inane question ("Do you understand me?"), to threats of punishment. If he was already upset, such a scene would certainly be traumatizing.
However, I have NO IDEA. I emailed the teachers, but have yet to have a response, so I sit here with no way to untangle these threads, and to try to talk to him about what happened- or didn't happen.
Friday, October 26, 2007
The Hood Mommy Made
On Wednesday, I introduced you to this image: Joey wearing the hood to the Halloween costume I made for him.
My mom always made our costumes when we were little, and they were things of wonder. I was Bo Beep with apron and calico dress, fluffy with eyelet lace. I was Tinker Bell, in green velvet complete with little zig-zag hem, a re-make from my brother's Peter Pan costume, complete with little Robin Hood style hat. I was a witch with a lined, zig-zag edged cape and dress and little broom. There was the spotted cat costume. There was the ghost costume with two veils, so that I seemed to drift over the night. There was teh Charlie Brown Ghost costume- complete with a drawing of Snoopy as the Red Baron on the back, and all the eyeholes on the front. There was the caterpillar costume that became the flea in teh flea circus (the school has a circus theme one year). My mom could make costumes. I remember them. They were, to me at the very least, works of art; and I still have that little witch cape to prove it.
When we bought the fabric for the Little Bear costume, my life was looking a little different from now. I have no idea where my mom got time to make my costumes, but I do have some memory of her at the sewing machine. My guys see the sewing machine and their whole goal in life is to touch the needle and work the pedal and steal the thread. But it was OK- it was Andy's first day of school, and I would have a few hours a week to myself, and could spare some to make a costume. It turned out to be cheaper to buy one (and I'm sure my mom made ours when we were little partly because it was far cheaper to do so), but I persevered; I would make my child's Halloween costume. As it should be.
There are some images that the American public hold as icons of normalcy. Norman Rockwell life come home to our own peaceful existance, testiments to tranquility, to liberty, to the American Dream. Moms bake cookies. Kids play on bicycles. Dads take out the trash and mow the lawn. Making Halloween costumes is one of those images. There is nothing that says "peace in life" than a home=made Halloween costume. Yes, I know most of us don't do it. Like I said, these days, its so much cheaper to buy one. But it's just one of those things. Besides, I come from a long history of a search for normalcy- I grew up with the gifted kids. I actually wrote papers in college about how kids labeled "gifted" create subculture based on a search for normalcy- with a skewed sense of what "normal" means. I'll blog about that sometime. Back to the topic at hand...
Even with Andy pulled from school, the loss of those few hours (which we have filled with a grand old time, I must say), and the chaos of life as usual, I have persevered yet again, and the costume is made. Its not as beautiful as the costumes my mom made. The front tummy patch is askew. the legs are not of equal length, nor are the sleeves. But it is done, it zips up, and the hood is made.
So I gave Joey the hood the other day, so he would see he was really going to be Little Bear for Halloween. He promptly put it on. When it was time for bed, he melted down when I told him he had to take it off. He "wanted his Halloween." That nightly complaint has changed to "I want to be Little Bear!" In the morning, he comes down the stairs and puts it on. He quietly takes it off to go to school. He comes home from school, goes the table, fetches the hood, and puts it on. He wears it all afternoon, and cries when bedtime comes, and it is time to take it off.
When Joey is in his hood, he is Little Bear. He loves being Little Bear. It makes him so happy to be Little Bear, and have his brother T-Rex, and relax in his house and have Mom bake him cookies. Before, he just was Little Bear, reminded everyone he was Little Bear, and Andy was T-Rex, and I was Mother Bear, and Janene was Big Bear, and Miss Megan was Medium Bear, and Grandma became Grandmother Bear, and sometimes Andy was Duck. But now... now he has a hood, brown and furry and with ears. He is Little Bear. The transformation is complete.
I wonder what he will do when he realizes there is a whole body costume and mittens to go with the hat.
Wednesday, October 24, 2007
Friday, October 19, 2007
"No Siblings Allowed"
What is more annoying than people who say one thing, then act completely against those words, while claiming to be "holier than thou"?
We had our quarterly Special Education Parent's Advisory Committee meeting last night. One of our brave school folks used the evening to put forth a new "Where are the parents?" campaign. Precious minutes that could have been spent at the bar where instead wasted with school personnel dragging us into "what can we do to attract parents?" I suppose moving the meeting each time to a different school, so parents would be more comfortable, is a good idea. The rest have been tried. Fliers? Done that each year. Phone calls? Been there, done that. Online links? How many times have I been reminded the majority of parents don’t have computers? Yet it remains the same half-dozen folks sitting here at the table. Yes, we'll put out a flier, and I'll spend hours on the phone and we'll send out emails and take out ads in the paper and put ads into the newsletters. We might get a few new faces for a meeting. But at the end of the day- I'm putting my money on having the same half-dozen faces here.
But why I get really annoyed with these campaigns is because there has also been another round of new policies- all of which discourage parent participation. Parents are not permitted at school parties. Functions that were "parents welcome 'before are now closed. And best of all- this year, siblings are not welcome- not at parties, not at functions, not on field trips, not at meetings. No siblings allowed.
When I was little, younger children often accompanied parent chaperones. Children who are not in daycare have nowhere to go when Mom or Dad is accompanying the older child on a field trip or helping organize the class party. We enjoyed meeting younger siblings (and a few times, I was that younger sibling, who got to meet Big Brother's friends!) It was part of the fun, part of the special moment, part of that community-building and socializing that school is supposed to be fostering. Remember "family values"?
Now that I'm a mom, who {gasp} has more than one child, the impact of this new policy is more sinister. It is isolating. I get no chance to meet other parents, see how my child does in unusual situations, participate and support his school experience. I have no idea who the other families are. As a special needs parent, I'm already pretty separated from the other families. Now I can't come at all.
Want to know where the parents are? We're raising our kids. And clearly, people who are busy raising kids are not welcome at school, anyway.
We had our quarterly Special Education Parent's Advisory Committee meeting last night. One of our brave school folks used the evening to put forth a new "Where are the parents?" campaign. Precious minutes that could have been spent at the bar where instead wasted with school personnel dragging us into "what can we do to attract parents?" I suppose moving the meeting each time to a different school, so parents would be more comfortable, is a good idea. The rest have been tried. Fliers? Done that each year. Phone calls? Been there, done that. Online links? How many times have I been reminded the majority of parents don’t have computers? Yet it remains the same half-dozen folks sitting here at the table. Yes, we'll put out a flier, and I'll spend hours on the phone and we'll send out emails and take out ads in the paper and put ads into the newsletters. We might get a few new faces for a meeting. But at the end of the day- I'm putting my money on having the same half-dozen faces here.
But why I get really annoyed with these campaigns is because there has also been another round of new policies- all of which discourage parent participation. Parents are not permitted at school parties. Functions that were "parents welcome 'before are now closed. And best of all- this year, siblings are not welcome- not at parties, not at functions, not on field trips, not at meetings. No siblings allowed.
When I was little, younger children often accompanied parent chaperones. Children who are not in daycare have nowhere to go when Mom or Dad is accompanying the older child on a field trip or helping organize the class party. We enjoyed meeting younger siblings (and a few times, I was that younger sibling, who got to meet Big Brother's friends!) It was part of the fun, part of the special moment, part of that community-building and socializing that school is supposed to be fostering. Remember "family values"?
Now that I'm a mom, who {gasp} has more than one child, the impact of this new policy is more sinister. It is isolating. I get no chance to meet other parents, see how my child does in unusual situations, participate and support his school experience. I have no idea who the other families are. As a special needs parent, I'm already pretty separated from the other families. Now I can't come at all.
Want to know where the parents are? We're raising our kids. And clearly, people who are busy raising kids are not welcome at school, anyway.
Wednesday, October 17, 2007
Tuesday, October 16, 2007
Ads in comments
Please do not post advertisements in my comments. I do not care what you are selling. I will delete them. Thank you.
Monday, October 15, 2007
Sunday, October 14, 2007
In light of recent events
I began this blog under siege.
The world of special education, the world of autism parents, the world of therapy offices is a strange, labyrinthine place. There is ashes and dust and pits pits pits. But there is also eleanor and ents and elves. I still sometimes feel I am fighting the Long Defeat.
As a parent of a newly diagnosed autistic child, trying desperately to find the best ways to support him, I was stunned by the quagmire of information, misinformation, bullying, exploitation, abuse, and manipulation. I've been trained to research, to think critically, to sift through fact and fancy and analyze the findings. Yet I found myself with snippets of information, impassioned beliefs, and little I could assign as "fact."
I was in a sea of ABA Fascists who insisted that every autistic child receive 40 hours of ABA therapy. I was surrounded by parents subjecting their children to shots, diets, creams, medicines, herbals, and therapies for which I could find no substance or reason. I was judged a bad mom for protecting my children against diseases that not only kill, but had killed children in our very own neighborhood, one not a year before Joey was born. I was publicly judged a bad mom for not subjecting my child to hours and hours of repetitive, unindividualized and static methods of teaching by poorly trained college kids. I was judged a bad mom for taking my kids out in public, teaching them hands-on like any other kids. Other parents stopped speaking to me because I wasn't approaching Joey and autism the way they did, using the methods they employed for their own children, advocating for the services they wanted for their own kids. I was given a book by the doctor that proclaimed 70% of children with autism are mentally retarded. Joey would never be independent. He would never understand other people as anything but objects. He would never be able to read emotions. He may never speak, or communicate at all. He would never form relationships.
I can only speak for the truths I have discovered about my own children. I am still discovering; but there are some facts I can present without doubt or hesitation. My children are not metal-poisoned. Not lead, not mercury, not aluminum, not cadmium, not arsenic, I could go on. My children have "theory of mind." Joey knows Andy likes dinosaurs, for example. When he was picking out a treat for himself today, he insisted on picking out a dinosaur for Andy, because he knew- and communicated to us- that Andy would like it. My children are not mentally retarded. My children have friends, and are very attached to them. Joey and Andy both not only communicate, but want to communicate and relate to other people. ABA has helped Joey. He does not need 40 hours of discrete trial training per week. My children are is not allergic to gluten, casein, or chocolate. Joey was already autistic when he was born. Joey is a beautiful, wonderful, joyful, intelligent, squishable little boy. I love Joey. Andy is not autistic. He is a handsome, loving, fantastic, smoochable little boy. I love Andy, too.
There I stand.
I started this blog in hopes of communicating with other parents who may feel lost in the quagmire. In a community that desperately needs parents who are united, networked, and supportive of the diversity of approaches and coping strategies, we are instead often isolated by other parents who think they have the one and only answer. I wanted fewer parents to feel desperate, alone, and forever separated from the gifts God has given them- their children. As they are. Start from here. I wanted to dispel a little of the fear, the uncertainly, the isolation, the dark.
What I found was that I am not alone. There is nothing to fear. And you'll separate me from my children when you pry them from my cold, dead fingers, thank you very much.
Thank you, Kev.
The world of special education, the world of autism parents, the world of therapy offices is a strange, labyrinthine place. There is ashes and dust and pits pits pits. But there is also eleanor and ents and elves. I still sometimes feel I am fighting the Long Defeat.
As a parent of a newly diagnosed autistic child, trying desperately to find the best ways to support him, I was stunned by the quagmire of information, misinformation, bullying, exploitation, abuse, and manipulation. I've been trained to research, to think critically, to sift through fact and fancy and analyze the findings. Yet I found myself with snippets of information, impassioned beliefs, and little I could assign as "fact."
I was in a sea of ABA Fascists who insisted that every autistic child receive 40 hours of ABA therapy. I was surrounded by parents subjecting their children to shots, diets, creams, medicines, herbals, and therapies for which I could find no substance or reason. I was judged a bad mom for protecting my children against diseases that not only kill, but had killed children in our very own neighborhood, one not a year before Joey was born. I was publicly judged a bad mom for not subjecting my child to hours and hours of repetitive, unindividualized and static methods of teaching by poorly trained college kids. I was judged a bad mom for taking my kids out in public, teaching them hands-on like any other kids. Other parents stopped speaking to me because I wasn't approaching Joey and autism the way they did, using the methods they employed for their own children, advocating for the services they wanted for their own kids. I was given a book by the doctor that proclaimed 70% of children with autism are mentally retarded. Joey would never be independent. He would never understand other people as anything but objects. He would never be able to read emotions. He may never speak, or communicate at all. He would never form relationships.
I can only speak for the truths I have discovered about my own children. I am still discovering; but there are some facts I can present without doubt or hesitation. My children are not metal-poisoned. Not lead, not mercury, not aluminum, not cadmium, not arsenic, I could go on. My children have "theory of mind." Joey knows Andy likes dinosaurs, for example. When he was picking out a treat for himself today, he insisted on picking out a dinosaur for Andy, because he knew- and communicated to us- that Andy would like it. My children are not mentally retarded. My children have friends, and are very attached to them. Joey and Andy both not only communicate, but want to communicate and relate to other people. ABA has helped Joey. He does not need 40 hours of discrete trial training per week. My children are is not allergic to gluten, casein, or chocolate. Joey was already autistic when he was born. Joey is a beautiful, wonderful, joyful, intelligent, squishable little boy. I love Joey. Andy is not autistic. He is a handsome, loving, fantastic, smoochable little boy. I love Andy, too.
There I stand.
I started this blog in hopes of communicating with other parents who may feel lost in the quagmire. In a community that desperately needs parents who are united, networked, and supportive of the diversity of approaches and coping strategies, we are instead often isolated by other parents who think they have the one and only answer. I wanted fewer parents to feel desperate, alone, and forever separated from the gifts God has given them- their children. As they are. Start from here. I wanted to dispel a little of the fear, the uncertainly, the isolation, the dark.
What I found was that I am not alone. There is nothing to fear. And you'll separate me from my children when you pry them from my cold, dead fingers, thank you very much.
Thank you, Kev.
Friday, October 12, 2007
Split Court
The Supreme Court split on a court case in New York. The focus of the case was, in brief, are parents required to try out a demonstrably inappropriate IEP before challenging it?
Note the words: demonstrably inappropriate.
And the court split.
I am so angry I could spit.
It's not just a matter of not giving the public school a chance. This is about the school offering an inappropriate program, and then telling you if you don't like it, sue us.
The point of the IDEA is to provide free and appropriate education. As in, knowing that your program is inappropriate means you need to make some changes and adjustments or even create a new program so the child can get an appropriate education. As in, not offering appropriate service means a child will not have a chance to be properly educated and have a shot at independent living.
When a school offers an IEP, it is supposed to take the parent as an equal member of the forming committee. It is far more comon that they present what services they want to offer your kid, and you have to decide to take it, leave it, or threaten to sue (which can lead to actually suing). Often, parents are not told about services that would be appropriate for their child (even if the services are being provided to other students!)
The problem is the school is given both the responsibility for providing services AND the responsibility to remain within small budgets. Everyone who has the power to provide the service also has the pressure of the purse strings. And folks, those people know who signs the paychecks, and parents are not that person. We can scream "taxpayer, paying your salary!" all we want, but ultimately, it is not our name on that check, but the name of a person pressured to spend as little money as possible. Speech therapy, occupational therapy, physical therapy, ABA, floor time, one-on-one instruction and testing... and anything else you can think of... costs money. It is far cheaper to not offer these things, and to get away with not offering them if you can. The chances of that parent suing, and winning, are so not good that it is worth a chance to offer services known to be inappropriate, inadequate... and cheap.
When you can demonstrate that an IEP is inappropriate, why should your child be subjected to that known inappropriate placement? I don't care if the kid has "time to waste" or not (does ANY child have "time to waste" in education??? Life is short!). Our money pays for that inappropriate service and placement- and therefore wastes our money! It wastes time of the teachers, the service providers, the admin, the lawyers, the parents... it wastes resources that could be appropriate for another child.
How on earth can anoyone be split on this?? How can you think it is in any way the right thing to subject a child to inappropriate program and service? How can anyone possibly think the law is intended to force kids to "try out" a demonstrably inappropriate placement?
That, folks, is how kids get abused.
Note the words: demonstrably inappropriate.
And the court split.
I am so angry I could spit.
It's not just a matter of not giving the public school a chance. This is about the school offering an inappropriate program, and then telling you if you don't like it, sue us.
The point of the IDEA is to provide free and appropriate education. As in, knowing that your program is inappropriate means you need to make some changes and adjustments or even create a new program so the child can get an appropriate education. As in, not offering appropriate service means a child will not have a chance to be properly educated and have a shot at independent living.
When a school offers an IEP, it is supposed to take the parent as an equal member of the forming committee. It is far more comon that they present what services they want to offer your kid, and you have to decide to take it, leave it, or threaten to sue (which can lead to actually suing). Often, parents are not told about services that would be appropriate for their child (even if the services are being provided to other students!)
The problem is the school is given both the responsibility for providing services AND the responsibility to remain within small budgets. Everyone who has the power to provide the service also has the pressure of the purse strings. And folks, those people know who signs the paychecks, and parents are not that person. We can scream "taxpayer, paying your salary!" all we want, but ultimately, it is not our name on that check, but the name of a person pressured to spend as little money as possible. Speech therapy, occupational therapy, physical therapy, ABA, floor time, one-on-one instruction and testing... and anything else you can think of... costs money. It is far cheaper to not offer these things, and to get away with not offering them if you can. The chances of that parent suing, and winning, are so not good that it is worth a chance to offer services known to be inappropriate, inadequate... and cheap.
When you can demonstrate that an IEP is inappropriate, why should your child be subjected to that known inappropriate placement? I don't care if the kid has "time to waste" or not (does ANY child have "time to waste" in education??? Life is short!). Our money pays for that inappropriate service and placement- and therefore wastes our money! It wastes time of the teachers, the service providers, the admin, the lawyers, the parents... it wastes resources that could be appropriate for another child.
How on earth can anoyone be split on this?? How can you think it is in any way the right thing to subject a child to inappropriate program and service? How can anyone possibly think the law is intended to force kids to "try out" a demonstrably inappropriate placement?
That, folks, is how kids get abused.
Thursday, October 11, 2007
Testing
Talked with Joey's teacher today. I really have a lot of confidence in both of Joey's teachers. He is having a fabulous time at school and clearly coming along. But I have to say, testing is a crock.
It would be one thing if the goal of testing was to understand what a child knows and understands, and what requires more work. When I give a test, this is what I am doing. Testing is a tool. But most testing in the schools is not geared to understanding what children know. It is geared to finding out what non-disabled children can recall within a certain format.
The Commonwealth of Virginia has implemented something called the Standards of Learning. I sure there are many excellent blogs on the subject, pros, cons, and everything in-between. I will say that having looked over the SOL goals with some care, there are pros and cons. The main pro is that kids have definite things they are learning throughout the year, following set "guidelines" so that I as a parent can determine what my child is learning in school in any given month, and can support those lessons at home. And they are good lessons, like learning about the senses and the world and the basics of academics. The con comes from a lack of flexibility, overwhelming children with material, and the measurments used to determine whether the children are learning the lessons. Testing my child with a verbal-heavy test where he has to carefully fill in little "bubbles" isn't going to help much, other than to tell me he's not very good at that kind of a test because of the auditory processing and the question processing. I already know he's autistic, thanks. What I want to know is does he know the material? And do we have an effective way for him to communicate that information and use that information? Another con is that the standards are so set and inflexible, Joey ends up having to do what to him is busy-work. He already knows his shapes, colors, numbers and letters. Yet here they are again. Is he not answering these questions about community helpers because he is bored? Or because he can't process the question format? Or because he genuinely has no clue what a fireman does? It is impossible to tell.
We do have some basic accommodations in his IEP, like one-on-one testing, visual prompts, and flex-testing (if he's clearly not going to test well, or gets tired, the teacher can stop testing for that day and try again later.) I think I'd feel better if more signing was used and permitting during testing, but I don't think the teachers are trained and know enough sign to do that. I just fear people who are not special ed folks- ie, most of the school teachers and admin- are going to dismiss him as stupid because of state-mandated tests which are poorly designed (at best) for students with special needs. This child is not stupid, and assuming he is will only frustrate him.
I think what I like most about this teacher (the one I spoke with today), though, is her assumption of competence. She expects Joey to do what she knows he can do, and she knows he can do this work and understand what is going on. Now we just have to figure out how to communicate effectively- both ways.
It would be one thing if the goal of testing was to understand what a child knows and understands, and what requires more work. When I give a test, this is what I am doing. Testing is a tool. But most testing in the schools is not geared to understanding what children know. It is geared to finding out what non-disabled children can recall within a certain format.
The Commonwealth of Virginia has implemented something called the Standards of Learning. I sure there are many excellent blogs on the subject, pros, cons, and everything in-between. I will say that having looked over the SOL goals with some care, there are pros and cons. The main pro is that kids have definite things they are learning throughout the year, following set "guidelines" so that I as a parent can determine what my child is learning in school in any given month, and can support those lessons at home. And they are good lessons, like learning about the senses and the world and the basics of academics. The con comes from a lack of flexibility, overwhelming children with material, and the measurments used to determine whether the children are learning the lessons. Testing my child with a verbal-heavy test where he has to carefully fill in little "bubbles" isn't going to help much, other than to tell me he's not very good at that kind of a test because of the auditory processing and the question processing. I already know he's autistic, thanks. What I want to know is does he know the material? And do we have an effective way for him to communicate that information and use that information? Another con is that the standards are so set and inflexible, Joey ends up having to do what to him is busy-work. He already knows his shapes, colors, numbers and letters. Yet here they are again. Is he not answering these questions about community helpers because he is bored? Or because he can't process the question format? Or because he genuinely has no clue what a fireman does? It is impossible to tell.
We do have some basic accommodations in his IEP, like one-on-one testing, visual prompts, and flex-testing (if he's clearly not going to test well, or gets tired, the teacher can stop testing for that day and try again later.) I think I'd feel better if more signing was used and permitting during testing, but I don't think the teachers are trained and know enough sign to do that. I just fear people who are not special ed folks- ie, most of the school teachers and admin- are going to dismiss him as stupid because of state-mandated tests which are poorly designed (at best) for students with special needs. This child is not stupid, and assuming he is will only frustrate him.
I think what I like most about this teacher (the one I spoke with today), though, is her assumption of competence. She expects Joey to do what she knows he can do, and she knows he can do this work and understand what is going on. Now we just have to figure out how to communicate effectively- both ways.
Wednesday, October 10, 2007
Midterm Whinefest
Ah, midterms are upon us. The Whine commences. I should have bought more cheese.
I won't go into details. Let's just say that there is nothing that gets me grumpier than students who want to make-up assignments they forgot to do, email me AFTER an assignment is due- by DAYS- to please can they turn it in now? students who suddenly want the midterm in a different format (I'm supposed to get those magic accomodation letters the first couple of weeks of school, or at least a couple weeks after they are granted, not the morning of the exam). Except one thing. Students who call/email/show up the morning after the exam is due wanting to make it up. Email is available 24 hours a day. If you have an emergency, why not drop me a line when you get home and say "Oops, I had an emergency?" instead of waiting until the assignment is over or... ?
I'm wrong. There is one more thing that makes me even grumpier than any of that. Students who get belligerent when I tell them "sorry you forgot to take this... but no." For some reason, students think nasty emails are going to soften my position on the matter. I have no clue why. If they think they have nothing to lose, they are quite wrong. I am happy to forward threatening and nasty email to my department chair and dean of students.
Taking college classes? Be polite and respectful to your professors. Making professors grumpy is a bad idea. Look at it this way: I went through college AND grad school. And guess what? When I forgot an assignment or slept through a test, I got a zero on it. Suck it up.
I won't go into details. Let's just say that there is nothing that gets me grumpier than students who want to make-up assignments they forgot to do, email me AFTER an assignment is due- by DAYS- to please can they turn it in now? students who suddenly want the midterm in a different format (I'm supposed to get those magic accomodation letters the first couple of weeks of school, or at least a couple weeks after they are granted, not the morning of the exam). Except one thing. Students who call/email/show up the morning after the exam is due wanting to make it up. Email is available 24 hours a day. If you have an emergency, why not drop me a line when you get home and say "Oops, I had an emergency?" instead of waiting until the assignment is over or... ?
I'm wrong. There is one more thing that makes me even grumpier than any of that. Students who get belligerent when I tell them "sorry you forgot to take this... but no." For some reason, students think nasty emails are going to soften my position on the matter. I have no clue why. If they think they have nothing to lose, they are quite wrong. I am happy to forward threatening and nasty email to my department chair and dean of students.
Taking college classes? Be polite and respectful to your professors. Making professors grumpy is a bad idea. Look at it this way: I went through college AND grad school. And guess what? When I forgot an assignment or slept through a test, I got a zero on it. Suck it up.
Tuesday, October 09, 2007
Names
You've got to get in on this meme.
WHAT ARE YOUR NAMES?
1. YOUR ROCK STAR NAME: (first pet & current car)
Hubert Magic Mitten Windstar. {I am so not a cool rock star.}
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie)
Peppermint Stick Brown Sugar Scotch. {I didn’t fare much better as a gangsta.}
3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name)
AGuy. {The joke continues…}
4. YOUR DETECTIVE NAME: (favorite color, favorite animal)
Green Owl. {That’s not so bad…}
5. YOUR SOAP OPERA NAME: (middle name, city where you were born)
Corinne Baltimore. {That works…good thing I kept my original middle name when I got married…}
6. YOUR STAR WARS NAME: (first 3 letters of your last name, first 2 letters of your first)
Guyam. {Could be worse. Now if only I could do mind tricks…}
7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink)
The Blue Fresca. {No, that doesn’t work.}
8. NASCAR NAME: (the first names of your grandfathers)
Richard Leroy. Leroy Richard? {How about grandmothers? Marie Mary? Mary Marie?}
9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy)
Anais Toblerone. {That works.}
10.WITNESS PROTECTION NAME: (mother’s & father’s middle names )
Ann Robert. {That will do.}
11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter)
Merritt Madrid. {I need more women’s names in my life.}
12. SPY NAME: (your favorite season/holiday, flower)
Autumn Dahlia. {I do usually still have dahlias in October. But not this year.}
13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + "ie" or "y")
Mango Hoodie. {OK, that sounds just weird.}
14. HIPPY NAME: (What you ate for breakfast, your favorite tree)
Yogurt Sugar Maple. {Groovy.}
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”)
The Needlepoint Thunder Tour. {Why can’t I have a cool hobby, like pottery?}
Go ahead. See what you get!
WHAT ARE YOUR NAMES?
1. YOUR ROCK STAR NAME: (first pet & current car)
Hubert Magic Mitten Windstar. {I am so not a cool rock star.}
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie)
Peppermint Stick Brown Sugar Scotch. {I didn’t fare much better as a gangsta.}
3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name)
AGuy. {The joke continues…}
4. YOUR DETECTIVE NAME: (favorite color, favorite animal)
Green Owl. {That’s not so bad…}
5. YOUR SOAP OPERA NAME: (middle name, city where you were born)
Corinne Baltimore. {That works…good thing I kept my original middle name when I got married…}
6. YOUR STAR WARS NAME: (first 3 letters of your last name, first 2 letters of your first)
Guyam. {Could be worse. Now if only I could do mind tricks…}
7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink)
The Blue Fresca. {No, that doesn’t work.}
8. NASCAR NAME: (the first names of your grandfathers)
Richard Leroy. Leroy Richard? {How about grandmothers? Marie Mary? Mary Marie?}
9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy)
Anais Toblerone. {That works.}
10.WITNESS PROTECTION NAME: (mother’s & father’s middle names )
Ann Robert. {That will do.}
11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter)
Merritt Madrid. {I need more women’s names in my life.}
12. SPY NAME: (your favorite season/holiday, flower)
Autumn Dahlia. {I do usually still have dahlias in October. But not this year.}
13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + "ie" or "y")
Mango Hoodie. {OK, that sounds just weird.}
14. HIPPY NAME: (What you ate for breakfast, your favorite tree)
Yogurt Sugar Maple. {Groovy.}
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”)
The Needlepoint Thunder Tour. {Why can’t I have a cool hobby, like pottery?}
Go ahead. See what you get!
Monday, October 08, 2007
Midterm Reports
In our schools, kids get a report card every nine weeks. However, at five weeks, they get a "midterm report." This report grades the kids as "Successful", "Progressing with Effort" or "Needs Improvement." I don't know if the report cards are going to use normal grades.
When I was in school, you were graded according to what teh teacher felt was your potential. I will grant you, this was subjective; but at least my parents had an idea of how well I was doing compared to no-one else but me.
Apparently, Joey is graded against his peers. The grades reflect how he is doing in comparison against other, non-disabled kindergardeners. He has two Ns: social studies and science.
We are working on figuring out what this means. Is he not understanding the work? Or is he being graded according to his ability to answer questions about the subject?
We're very concerned that he is being evaluated based on his ability to answer questions. For one, this would tell us exactly nothing. We already know he has a communication disorder. What does he know about social studies and science? Secondly, what accomodations are being made so that he can be evaluated appropriately against his peers? After all, you wouldn't fail a blind child in reading just because she can't see the book.
I tried to go in and ask (today was open-conference), but the teacher I needed to talk to wasn't there today. So I'll keep you posted.
When I was in school, you were graded according to what teh teacher felt was your potential. I will grant you, this was subjective; but at least my parents had an idea of how well I was doing compared to no-one else but me.
Apparently, Joey is graded against his peers. The grades reflect how he is doing in comparison against other, non-disabled kindergardeners. He has two Ns: social studies and science.
We are working on figuring out what this means. Is he not understanding the work? Or is he being graded according to his ability to answer questions about the subject?
We're very concerned that he is being evaluated based on his ability to answer questions. For one, this would tell us exactly nothing. We already know he has a communication disorder. What does he know about social studies and science? Secondly, what accomodations are being made so that he can be evaluated appropriately against his peers? After all, you wouldn't fail a blind child in reading just because she can't see the book.
I tried to go in and ask (today was open-conference), but the teacher I needed to talk to wasn't there today. So I'll keep you posted.
Sunday, October 07, 2007
THANK YOU!!!!!
It's official- the check is in the mail.
This past spring, I opened a little shop through Cafe Press, JoeyMom's Autism Awareness Bazaar. Today, it actually made money. I have a check for $28 coming my way!
What is $28 to us? With the insurance, it's a session of speech therapy for Joey, or most of an OT session. It is two weeks of school meals. It's 1/3 of my groceries for a week. It's a complete new outfit (minus shoes) for Joey or Andy. It's a month of Preschool Art classes for Andy, or two months of his Wee Time program. It's 3 hours of free time for me, because Andy's babysitter isn't a specially trained respite worker, so she only gets $9 an hour.
Thank you for supporting our family, all you wonderful people who bought t-shirts, buttons, mugs, magnets, bumper stickers, and journals, sporting my autism awareness designs. I promise it is money well-spent.
This past spring, I opened a little shop through Cafe Press, JoeyMom's Autism Awareness Bazaar. Today, it actually made money. I have a check for $28 coming my way!
What is $28 to us? With the insurance, it's a session of speech therapy for Joey, or most of an OT session. It is two weeks of school meals. It's 1/3 of my groceries for a week. It's a complete new outfit (minus shoes) for Joey or Andy. It's a month of Preschool Art classes for Andy, or two months of his Wee Time program. It's 3 hours of free time for me, because Andy's babysitter isn't a specially trained respite worker, so she only gets $9 an hour.
Thank you for supporting our family, all you wonderful people who bought t-shirts, buttons, mugs, magnets, bumper stickers, and journals, sporting my autism awareness designs. I promise it is money well-spent.
A New Washing Machine
Our washing machine died.
Normally, this would be a minor blip on the screen of life. HTe washer dies, you use the laundromat for a few weeks until the dent-and-scratch sale, you get a new washer. No big deal.
Except I am in a house with one child who still gets bouts of diarrhea, sometimes miss-aims the pee or forgets to wait until he's completely done, and has thrown-up in bed without warning twice in the last two weeks. That's just one of the two kids, remember.
I must have a washing machine.
Apparently the appliance business around here has really gotten hot. We got a washer from Lowe's. It was the cheapest place in town (WTF?) andwe ordered it yesterday (a Saturday) and they called to apologize for not being able to deliver it that day, was it OK to deliver it today (Sunday)?
And they delivered it. On a Sunday. I am washing clothes right now. Life is good.
Normally, this would be a minor blip on the screen of life. HTe washer dies, you use the laundromat for a few weeks until the dent-and-scratch sale, you get a new washer. No big deal.
Except I am in a house with one child who still gets bouts of diarrhea, sometimes miss-aims the pee or forgets to wait until he's completely done, and has thrown-up in bed without warning twice in the last two weeks. That's just one of the two kids, remember.
I must have a washing machine.
Apparently the appliance business around here has really gotten hot. We got a washer from Lowe's. It was the cheapest place in town (WTF?) andwe ordered it yesterday (a Saturday) and they called to apologize for not being able to deliver it that day, was it OK to deliver it today (Sunday)?
And they delivered it. On a Sunday. I am washing clothes right now. Life is good.
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