This morning, Joey discovered the Zhu Zhu Pet website. He shared this information with his brother, and they began plotting together, true brothers, whispering and point, squealing, more whispering and squealing...
And then Andy announced that he wanted the Zhu Zhu pet rabbit, Fluffy. And if I procured a Fluffy, I "could have all the tummy smooches you want!" Joey concurred- all the tummy I wanted, if I could lay hands on Fluffy.
They walked to the bus stop hand-in-hand planning on how they would prepare for and care for their Fluffy.
As he got on the bus, Andy commanded, "Go get Fluffy now, Mommy. Go to the store and buy him now."
Getting off the bus, Joey had a hard day and was in tears, but didn't forget to ask, "Where's Fluffy?"
I spent the morning trying to locate one, but had to order one (two, actually). Of course they want the one that's a Hallmark Exclusive, and which no Hallmark in my town has any of.
I expect to OD on tummy smooches in 2-7 days. Stay tuned.
Tuesday, June 08, 2010
Monday, June 07, 2010
The Utter Chaos that is T-Ball
Yes, it was my first official practice as one of the assistant coaches of T-Ball. Here is what I learned:
1. Even if one of the other coaches says they have coached multiple levels of t-ball and baseball before, that doesn't mean they have done it in the last 20 years, or remembered what kids know. Or don't know.
2. Six-year-olds who have never played baseball or T-Ball before have no idea what the field positions are. Or what a base is.
3. 11 out of 12 six-year-olds have never played baseball or T-Ball. At least, on our team that is true.
4. The 1 child who has played before still doesn't know the field positions, or what a base is.
5. 11 out of 12 six-year-olds don't own a baseball glove or hat, and therefore must borrow the coach's.
6. Even if you have no idea what a base is, or where to stand, or how to catch, or even to run around the bases, hitting the ball is fun. So as long as everyone gets to hit the ball, we're all good.
1. Even if one of the other coaches says they have coached multiple levels of t-ball and baseball before, that doesn't mean they have done it in the last 20 years, or remembered what kids know. Or don't know.
2. Six-year-olds who have never played baseball or T-Ball before have no idea what the field positions are. Or what a base is.
3. 11 out of 12 six-year-olds have never played baseball or T-Ball. At least, on our team that is true.
4. The 1 child who has played before still doesn't know the field positions, or what a base is.
5. 11 out of 12 six-year-olds don't own a baseball glove or hat, and therefore must borrow the coach's.
6. Even if you have no idea what a base is, or where to stand, or how to catch, or even to run around the bases, hitting the ball is fun. So as long as everyone gets to hit the ball, we're all good.
Friday, June 04, 2010
A little shine
Joey is going into third grade in the fall, and that means a new school, because our little system breaks up elementary into upper and lower. Yesterday was the Parent Orientation for the new school. Of course I went. Turned out to be something they could have emailed us, but whatever. I did get to see some folks, and I took Joey with me so he could see more of his new school.
But the best part was the slide with the mission statement (which I notice is not their official mission statement), some ramble about providing the kids the best possible education blah blah blah. And all I could think of was, "... unless we're waxing the floors that day."
And then connected that with Joey's use of the word "wax."
People looked at me funny when I started giggling, but whatever.
But the best part was the slide with the mission statement (which I notice is not their official mission statement), some ramble about providing the kids the best possible education blah blah blah. And all I could think of was, "... unless we're waxing the floors that day."
And then connected that with Joey's use of the word "wax."
People looked at me funny when I started giggling, but whatever.
Thursday, June 03, 2010
Because That's The Way I Roll.
I signed Andy up for T-Ball. This is very exciting, and Andy is very happy about it. When I got the phone call about the practices, it was a little odd. "You're on the Red Team," the message said. "Practices start next week. Oh, by the way, we don't have a head coach for the Red Team yet. If you know anybody who can help us out, give us a call."
Well, I thought, I don't know anything about baseball. It's a pretty popular program. One of the dads will hear that and pick it up, no problem. Besides, I'd like to be able to just sit with some of these other moms and dads and get a little taste of normalcy for a bit.
We turned up at the first practice, and Andy was happy to find he knew several of the kids (there are 30 kids, and only one is a girl). I knew some of the moms, and even a couple of the dads. I got to talking to one older gentleman, a granddad; Andy didn't know the boy, but soon made buddies with him. We all stood about chatting, waiting for the coaches to show up, and realizing there were two teams here- Gray and Red. Some of the moms were in book clubs, chatting about the books they were reading. Chatter of TV shows I have never even heard of. Some talk of who would be "suckered" into being the "team mom" for each team (and thus organize post-game snacks each week). Guess where that conversation was heading. After all, these were all busy people. They had jobs and kids and bookclubs to do.
When the coach (note the singular) showed up, we all gathered in to hear what was up: the program had called him pleading for him to please coach a team, and then they decided he would coach both teams, but he needed assistant coaches. He wanted two from each team, and he had two from the Gray team already signed up. One was a young dad who seemed to know a good deal about baseball, and a mom who was already wearing a gray shirt and a baseball cap. Could he get two volunteers from the Red team? Because if he couldn't, the program would have to be cancelled, and there would be no season.
There was a moment of deafening silence. Eyes found the ground, the kids, the cars, the sky. Just a moment, when things became very, very clear. Given the choice between volunteering or disappointing their kids by canceling the program, crickets were starting to chirp.
No, I didn't speak up first. Remember, I know nothing about baseball. Or coaching. And I am very, very fat. Did I mention I am not an athlete in any way, shape, or form?
Granddad spoke up first. But I knew from that moment of silence that without another voice, Andy wouldn't be able to play, and that wasn't the right choice. These kids should be able to play. It wasn't their fault that coaches weren't lined up for them. And it's T-Ball, how hard can it be?
So you can just call me Coach Andymom. Granddad and I looked at each other and laughed. In a sea of parents, we knew it was the right thing to do. But I know it's going to be a fabulous experience, because Granddad waved me on to the field with him saying, "Well, they're ours, now. Let' show all these folks what fun really is!"
They all obliged by standing outside the field fence chatting together and reading their books while we had a blast playing with their kids. The Red Team may not win many games, but we're going to have a lot of fun playing them.
Well, I thought, I don't know anything about baseball. It's a pretty popular program. One of the dads will hear that and pick it up, no problem. Besides, I'd like to be able to just sit with some of these other moms and dads and get a little taste of normalcy for a bit.
We turned up at the first practice, and Andy was happy to find he knew several of the kids (there are 30 kids, and only one is a girl). I knew some of the moms, and even a couple of the dads. I got to talking to one older gentleman, a granddad; Andy didn't know the boy, but soon made buddies with him. We all stood about chatting, waiting for the coaches to show up, and realizing there were two teams here- Gray and Red. Some of the moms were in book clubs, chatting about the books they were reading. Chatter of TV shows I have never even heard of. Some talk of who would be "suckered" into being the "team mom" for each team (and thus organize post-game snacks each week). Guess where that conversation was heading. After all, these were all busy people. They had jobs and kids and bookclubs to do.
When the coach (note the singular) showed up, we all gathered in to hear what was up: the program had called him pleading for him to please coach a team, and then they decided he would coach both teams, but he needed assistant coaches. He wanted two from each team, and he had two from the Gray team already signed up. One was a young dad who seemed to know a good deal about baseball, and a mom who was already wearing a gray shirt and a baseball cap. Could he get two volunteers from the Red team? Because if he couldn't, the program would have to be cancelled, and there would be no season.
There was a moment of deafening silence. Eyes found the ground, the kids, the cars, the sky. Just a moment, when things became very, very clear. Given the choice between volunteering or disappointing their kids by canceling the program, crickets were starting to chirp.
No, I didn't speak up first. Remember, I know nothing about baseball. Or coaching. And I am very, very fat. Did I mention I am not an athlete in any way, shape, or form?
Granddad spoke up first. But I knew from that moment of silence that without another voice, Andy wouldn't be able to play, and that wasn't the right choice. These kids should be able to play. It wasn't their fault that coaches weren't lined up for them. And it's T-Ball, how hard can it be?
So you can just call me Coach Andymom. Granddad and I looked at each other and laughed. In a sea of parents, we knew it was the right thing to do. But I know it's going to be a fabulous experience, because Granddad waved me on to the field with him saying, "Well, they're ours, now. Let' show all these folks what fun really is!"
They all obliged by standing outside the field fence chatting together and reading their books while we had a blast playing with their kids. The Red Team may not win many games, but we're going to have a lot of fun playing them.
Wednesday, June 02, 2010
Tuesday, June 01, 2010
My nose knows
I think my body is trying to tell me something.
I have been really sensitive to smells- like, the way I was when I was young, or pregnant. Strange things bother me. I can't take the smell of potato chips or Cheetos. I took the boys for half-price Happy Meals, and gagged as I passed the food back, the smell of the fried food! Argh! Two weeks ago, neither of these scents would bother me. Today? Gag. Chocolate hasn't turned me on, either, lately.
Fortunately, staying away from chips and bad junk food isn't much of a loss. But please, dear nose, don't take away my love of gingerbread or grandmother's rose. Leave me my honeysuckle. Don't mess with my sandalwood soap. Thanks.
I have been really sensitive to smells- like, the way I was when I was young, or pregnant. Strange things bother me. I can't take the smell of potato chips or Cheetos. I took the boys for half-price Happy Meals, and gagged as I passed the food back, the smell of the fried food! Argh! Two weeks ago, neither of these scents would bother me. Today? Gag. Chocolate hasn't turned me on, either, lately.
Fortunately, staying away from chips and bad junk food isn't much of a loss. But please, dear nose, don't take away my love of gingerbread or grandmother's rose. Leave me my honeysuckle. Don't mess with my sandalwood soap. Thanks.
Monday, May 31, 2010
All for one, and one for all
Trying to find programs and settings that are appropriate for Joey can be very tricky. He is something of the poster child for "if you've seen one child with autism, you've seen one child with autism." His use of language is unique, yet he does speak and communicate. He has the social disability of autism, but craves being social (That autistic kid who stares out the window? That's not my kid). He can handle a variety of settings and an elaborate schedule, have 15 different teachers and four whole different classes of schoolmates, but he has to know exactly when he will go to which place and what to expect there. In trying to piece together placements, I get a lot of comments to the tune of, "Oh, let's put Joey here, he'll be such a big help to [someone else's kid]!"
Riding out to Grandma's, the boys are already hot and tired, and its not even 10 am. Andy is screaming for silence. Joey is chanting, but there are no words there, no soundification, just odd tones and squeals. It isn't his usual stim. The more Andy squeals for quiet, the louder Joey chants.
"What's up, Buddy?" I call back, a cue to them that Mommy has had enough of the noise and bickering.
"I wan Doey t'stop dat NOISE!" Andy complains.
"I'm being Ethan*!" Joey giggles, and goes into another round of the chant. I frown. Ethan is a child in Joey's class, and it hits me how exactly Joey is copying the non-verbal child. I know Joey gets upset when he knows he is being mocked; but this isn't exactly mocking, it is taking on another's oral stim, though he has taken it on partly because the sounds amuse him.
Joey helps Ethan. He is a good model for classroom behavior, for oral communication, for regulation, compared to where Ethan is in his development. What does Ethan do for Joey?
"We need to be respectful of our classmates and friends, even when they aren't here," I remind him. "Please find something else to say." But there are no current chants to redirect him, and he soon lapses into Ethan Sounds. He's hot, he's tired, the sounds are amusing and comforting, and they vibrate his mouth in a way I know he particularly likes.
Last year, there was a parent who complained about Joey being in a mainstream class with their child. They were unaware that I was the parent of "that child", standing next to them as they demanded what my child did for theirs. If teaching their child acceptance and patience wasn't enough for them, perhaps Joey also taught their child math? After all, Joey's a shining star in the subject. But what do other kids teach other kids? Social skills? Language use? The latest cultural trends? Can't my child have something different to offer? Another way of thinking about the world and expressing those thoughts, maybe?
Yet we face the issue of Ethan Sounds, and often the behaviors of other children. Just like normal kids who pick up bad habits and bad words from school, Joey picks up on what his classmates do. Only to be honest, if a regular kid grows up to say "damn!" (or worse), they won't become a social pariah, even if we find the word crude. But a child who picks up biting, or soundification, or a plethora of ritualized and repetitive behaviors to then ritualize and repeat, will find themselves in a difficult position to find employment. When a non-autistic child picks up a poor adult behavior, it blends in with the crowd of poor adult behaviors that have become social norms. When an autistic child picks up on poor adult behavior, it appears to be magnified and make them stand out all the more.
Yet we must weave together strengths and weaknesses, create a fabric of services and educational models that can hold everyone, and act as a safety net when they stumble. Everyone has something to share. That is what inclusion is all about.
*Name changed.
Riding out to Grandma's, the boys are already hot and tired, and its not even 10 am. Andy is screaming for silence. Joey is chanting, but there are no words there, no soundification, just odd tones and squeals. It isn't his usual stim. The more Andy squeals for quiet, the louder Joey chants.
"What's up, Buddy?" I call back, a cue to them that Mommy has had enough of the noise and bickering.
"I wan Doey t'stop dat NOISE!" Andy complains.
"I'm being Ethan*!" Joey giggles, and goes into another round of the chant. I frown. Ethan is a child in Joey's class, and it hits me how exactly Joey is copying the non-verbal child. I know Joey gets upset when he knows he is being mocked; but this isn't exactly mocking, it is taking on another's oral stim, though he has taken it on partly because the sounds amuse him.
Joey helps Ethan. He is a good model for classroom behavior, for oral communication, for regulation, compared to where Ethan is in his development. What does Ethan do for Joey?
"We need to be respectful of our classmates and friends, even when they aren't here," I remind him. "Please find something else to say." But there are no current chants to redirect him, and he soon lapses into Ethan Sounds. He's hot, he's tired, the sounds are amusing and comforting, and they vibrate his mouth in a way I know he particularly likes.
Last year, there was a parent who complained about Joey being in a mainstream class with their child. They were unaware that I was the parent of "that child", standing next to them as they demanded what my child did for theirs. If teaching their child acceptance and patience wasn't enough for them, perhaps Joey also taught their child math? After all, Joey's a shining star in the subject. But what do other kids teach other kids? Social skills? Language use? The latest cultural trends? Can't my child have something different to offer? Another way of thinking about the world and expressing those thoughts, maybe?
Yet we face the issue of Ethan Sounds, and often the behaviors of other children. Just like normal kids who pick up bad habits and bad words from school, Joey picks up on what his classmates do. Only to be honest, if a regular kid grows up to say "damn!" (or worse), they won't become a social pariah, even if we find the word crude. But a child who picks up biting, or soundification, or a plethora of ritualized and repetitive behaviors to then ritualize and repeat, will find themselves in a difficult position to find employment. When a non-autistic child picks up a poor adult behavior, it blends in with the crowd of poor adult behaviors that have become social norms. When an autistic child picks up on poor adult behavior, it appears to be magnified and make them stand out all the more.
Yet we must weave together strengths and weaknesses, create a fabric of services and educational models that can hold everyone, and act as a safety net when they stumble. Everyone has something to share. That is what inclusion is all about.
*Name changed.
Wednesday, May 26, 2010
Tuesday, May 25, 2010
Out in the Challenger Field
I got to stand out in the field and be Joey's buddy on Saturday for his baseball game. Apparently the Courtland baseball season is coming to a close (Courtland is first seeded!), so the volunteers are now thin.
He had a nice game, even hitting a ball to the outfield! He's becoming one of the big hitters for his team! He's also running better. It is amazing what a little focus on a skill can do for Joey, and a little motivation. He is losing that toddler trot and even leans forward a little to run to a base.
It is striking to see all the Challenger kids working so hard, even as they are having a good time. I suppose all play and activity is really "therapy" for everyone, but most folks don't call it that, or even think about it. Joey gets upset when he doesn't get to field a ball, but he's still learning to pay attention to the game enough to know when it is coming- before one of the other kids gets the ball. We have a child who goes around the bases in a walker, their dad cheering them on every step of the way. We have a child learning to pitch, working on coordination. We have a child in a wheelchair who likes to play shortstop, and lets folks know it. We have a child who can spin the bat around their hand like a fancy sword move. We have a child who is a runner, and just being out there playing a game is a challenge. We have kids who have been doing this for four years, and some, like us, who are new. They are, each and every one, absolutely amazing. Maybe I ought to write a play.
Joey and I worked on playing second base, but that wasn't really good for him, not enough balls coming his way to hold his interest. JoeyAndyDad had him more in the infield later on, and that was better in some ways- more balls hit his way- and not in others- more kids up there trying to field the ball and crowding Joey out. He also doesn't like getting tagged (he knows from school that when he's tagged, he's supposed to be out).
We still encourage him to steal home. He's our little hero.
He had a nice game, even hitting a ball to the outfield! He's becoming one of the big hitters for his team! He's also running better. It is amazing what a little focus on a skill can do for Joey, and a little motivation. He is losing that toddler trot and even leans forward a little to run to a base.
It is striking to see all the Challenger kids working so hard, even as they are having a good time. I suppose all play and activity is really "therapy" for everyone, but most folks don't call it that, or even think about it. Joey gets upset when he doesn't get to field a ball, but he's still learning to pay attention to the game enough to know when it is coming- before one of the other kids gets the ball. We have a child who goes around the bases in a walker, their dad cheering them on every step of the way. We have a child learning to pitch, working on coordination. We have a child in a wheelchair who likes to play shortstop, and lets folks know it. We have a child who can spin the bat around their hand like a fancy sword move. We have a child who is a runner, and just being out there playing a game is a challenge. We have kids who have been doing this for four years, and some, like us, who are new. They are, each and every one, absolutely amazing. Maybe I ought to write a play.
Joey and I worked on playing second base, but that wasn't really good for him, not enough balls coming his way to hold his interest. JoeyAndyDad had him more in the infield later on, and that was better in some ways- more balls hit his way- and not in others- more kids up there trying to field the ball and crowding Joey out. He also doesn't like getting tagged (he knows from school that when he's tagged, he's supposed to be out).
We still encourage him to steal home. He's our little hero.
Sunday, May 23, 2010
The New School Waltz
Our little school system is set up with a split upper and lower elementary. What this means for most kids is that the older elementary kids- third, fourth, and fifth graders- are not housed with the wee ones (K-2), so that programming and instruction can be more focused on the needs of the two age groups. What it means for us is we have to start from scratch trying to claw for the services Joey needs, with a whole new group of people with a whole new attitude towards special education, special ed students, and what services should entail.
And so far, I am not impressed.
We had a separate meeting for ESY, partly because there was this huge gap called August, five weeks of black hole in service that would be a disaster for Joey. And what I learned was that our new crew believes my son's education is less important that waxing the floors. Really.
Not. Good.
I've listened to these folks at the Sped Parent meetings. The impression I get there is no better. There is a sense of dividing and isolating cases instead of a broader view of service in which the children's services and strengths are interconnected and interwoven for an effective educational netting- or better yet, fabric. You can't have social skills for one. The problem is I know they have at least three, likely more. Can't do this for one, can't do that for one. If I hear it again, I'm going to stand up and say, "You have one that needs this. Not wants. Needs. Figure it out." I'm starting to look up the numbers for lawyers again. I suspect I will need one in the next, oh, three years. And it is likely to be sooner rather than later. Better to go ahead and put in a retainer, rather than have to come up with one in a super-hurry.
As I left the meeting, the new administrator made the usual "Everything is going to be fine" speech. I think she meant well. However, if she thinks she's building any trust here, she is sadly mistaken. When your concern is about having to have a whole month to strip the floors, rather than being concerned about the needs of your students- even just one student, if you must- there is seriously nothing trustworthy there.
I'm going to have to start seeing some serious effort and creative support soon if we're to get any trust going on this side. And folks, it's looking like its going to be a long three years ahead.
And so far, I am not impressed.
We had a separate meeting for ESY, partly because there was this huge gap called August, five weeks of black hole in service that would be a disaster for Joey. And what I learned was that our new crew believes my son's education is less important that waxing the floors. Really.
Not. Good.
I've listened to these folks at the Sped Parent meetings. The impression I get there is no better. There is a sense of dividing and isolating cases instead of a broader view of service in which the children's services and strengths are interconnected and interwoven for an effective educational netting- or better yet, fabric. You can't have social skills for one. The problem is I know they have at least three, likely more. Can't do this for one, can't do that for one. If I hear it again, I'm going to stand up and say, "You have one that needs this. Not wants. Needs. Figure it out." I'm starting to look up the numbers for lawyers again. I suspect I will need one in the next, oh, three years. And it is likely to be sooner rather than later. Better to go ahead and put in a retainer, rather than have to come up with one in a super-hurry.
As I left the meeting, the new administrator made the usual "Everything is going to be fine" speech. I think she meant well. However, if she thinks she's building any trust here, she is sadly mistaken. When your concern is about having to have a whole month to strip the floors, rather than being concerned about the needs of your students- even just one student, if you must- there is seriously nothing trustworthy there.
I'm going to have to start seeing some serious effort and creative support soon if we're to get any trust going on this side. And folks, it's looking like its going to be a long three years ahead.
Friday, May 21, 2010
Happy Birthday, Andy!
When I was one,
I just begun.
When I was two,
I was nearly new.
When I was three,
I was hardly me.
When I was four,
I was not much more.
When I was five,
I was just alive.
But now I'm six,
I'm as clever as clever.
So I think I will be six now,
forever and ever!
-A.A.Milne
Thursday, May 20, 2010
Taking all the help we can get
We're back from the big OT eval. I managed to get a script from the doctor's office this morning (I forgot to ask for it yesterday during the annual checkup, because I am, yes, an idiot), so off we went!
After Ms Lisa took a good look at the little guy, we had a chat about what he needs to be productive in school. I told her the bare and terrible truth: we need all the help we can get, so we can provide proper guidance to the new school folks. Stuff that we've done on the fly now needs to be formalized and simplified. We discussed sensory needs, we discussed social skills, we discussed lunch bunch, we discussed the problems of skill generalization (what good is a skill being performed before the school OT if he doesn't perform it anywhere else? Sometimes I wonder if the school OT thinks, "Well, see, he can do it... he must not want to!"... ie, "What a spoiled brat!"). I'm hoping for a fabulous report in 7-10 days which says he needs these things to access the curriculum. She was particularly interested in the phys ed curriculum that he is clearly not accessing in the general phys ed program... having something more geared to him would be fantastic.
I'll keep you posted!
After Ms Lisa took a good look at the little guy, we had a chat about what he needs to be productive in school. I told her the bare and terrible truth: we need all the help we can get, so we can provide proper guidance to the new school folks. Stuff that we've done on the fly now needs to be formalized and simplified. We discussed sensory needs, we discussed social skills, we discussed lunch bunch, we discussed the problems of skill generalization (what good is a skill being performed before the school OT if he doesn't perform it anywhere else? Sometimes I wonder if the school OT thinks, "Well, see, he can do it... he must not want to!"... ie, "What a spoiled brat!"). I'm hoping for a fabulous report in 7-10 days which says he needs these things to access the curriculum. She was particularly interested in the phys ed curriculum that he is clearly not accessing in the general phys ed program... having something more geared to him would be fantastic.
I'll keep you posted!
Tuesday, May 18, 2010
New Directory of Autism Blogs: Come Join Us!
When the Autism Hub went down, I had no idea what happened. I still have no idea what happened. I'm kinda clueless about stuff like politics and gossip and drama and stuff like that. I always have been. When stuff starts hitting the fan, I'm the clueless one going, "Huh? What fan? And why am I all damp?" Yes, I often wonder how much I might have contributed to the problem; I often never find out because I never find out what the problem was. How much of being clueless made it worse? Am I really that much in La-La Land? And I have this problem all the time in real life situations, when I should be able to read the social cues swirling about me, and just don't. Online? Gah!
So apparently the Hub went down, and I didn't know about it for a few days. And now it is back up, and I found out because someone on Facebook mentioned they weren't on it anymore. In fact, a couple of folks mentioned it- folks I consider very central voices to the parent discussion side of things. I wasn't surprised to find my own blog gone, after all, I'm just a little blog, and I did kinda crash the party instead of being invited. In fact, the vast majority of the comfy-couch section seems to have been axed.
But salvation is here! Kim Wombles has put together a new lovely directory of autism blogs, and it looks fabulous: The Autism Blogs Directory. Lots and lots of blogs, so you can check out plenty of online voices saying lots of thought-provoking things about topics I never even knew might be an issue! Do I agree with everybody? Heck, no! And I think that's a good thing!
So come check it out, find some new blogs to read, grab some hot beverage of your choice, and join us on the comfy couches!
So apparently the Hub went down, and I didn't know about it for a few days. And now it is back up, and I found out because someone on Facebook mentioned they weren't on it anymore. In fact, a couple of folks mentioned it- folks I consider very central voices to the parent discussion side of things. I wasn't surprised to find my own blog gone, after all, I'm just a little blog, and I did kinda crash the party instead of being invited. In fact, the vast majority of the comfy-couch section seems to have been axed.
But salvation is here! Kim Wombles has put together a new lovely directory of autism blogs, and it looks fabulous: The Autism Blogs Directory. Lots and lots of blogs, so you can check out plenty of online voices saying lots of thought-provoking things about topics I never even knew might be an issue! Do I agree with everybody? Heck, no! And I think that's a good thing!
So come check it out, find some new blogs to read, grab some hot beverage of your choice, and join us on the comfy couches!
Monday, May 17, 2010
Renaissance Faire
This week's adventure was a trip to the Renaissance Faire, which opened at the Lake Anna Winery this weekend, and runs (weekends only) through June. It is $8 per person for everyone 6 and older, free for under 6 (Andy was free! Last time!), and we had a roaringly good time. Maybe a little bit of a roller-coaster, but what did I expect for taking two kids who decided to wear long sleeves to a strange place full of people wearing funny clothes?
Andy started shy, but Joey jumped in with both feet. He learned about sword fighting, and then played tambourine with the wandering minstrels (who really do stop and sing to you!), and then got right down to business learning to write with a quill, and showing off how well he can already write with a quill. That's my boy!
Andy started warming up when he found the toy box and dress-up center. The Faire is arranged in a large ring of Stuff to Buy around an open field, but there is a back walk in the woods, with more Stuff to Buy. Among the Stuff to Buy are various stages with something always going on, and in the field, they are playing Renaissance games (you can join in!) or dancing (you can join in!) or putting on impromptu naval battles (yep! Join in!). For folks who remember the old Virginia Wine Festival, it isn't as big, but very similar set-up, and yeah, it works very well for the Ren Faire, too. :) The back woods also had stages and things to do, including some games (throw battle axes, 3 throws for $2!) and a lot of the children's stuff, and the Queen's Court- really smart, as it was shady and lovely. The kid's section (Poppet's) included crafts that changed every half-hour or so, and could be done for free (though donations for materials accepted).
We did catch the Archery Show (there are folks who wander around in costume telling you what's going on when, and what shows are about to start and where they are), and the boys liked the arrows and the shooting. The archery guy wasn't too impressed with us, however, and seemed to have minimal experience with children. He kinda got annoyed that JOey was moving around and asked questions over and over.
We started off as the only ones there, which worked OK, but when more folks came and he basically restarted the program (which was understandable- it was a cool trick shot with four arrows!), we took our leave and got out of the way. Andy wanted to toss axes, so we did that instead.
We got some ice cream and a drink, and then wandered back over to the armoury to take a peek. This was out in the sun more, and it was getting pretty hot, but I hoped the ice cream would hold them until I could scout around for food stalls, which were not immediately apparent. Joey got interested in the helmets.
So this is what I saw: a happy Joey trying on helmets and giggling, and a gentleman enjoying watching him giggle and trying on the different helmets. Happy child. Not ten feet away. Lovely.
Let's turn to the other child, who is busily pestering the guy talking about the pikes and spears. What's that one? What's that one? Oooh, why is that one all spiky? Happy child, not ten feet away, but ten feet away in a slightly different direction. What could go wrong?
Both of these photos are prelude to a melt down. I have no clue what happened. I was taking the picture of Andy when the Wail of Warning went up, and I turned to find Joey making a break for the woods at top speed. Much to the annoyance of the staff, I darted into the woods after him, with Andy on my heels, both of us calling for Joey. Oh, and several folks in funny clothes right on our heels, explaining to me none-too-patiently that we weren't allowed back there. No kidding! I finally had to stop and explain that Joey was autistic, that I would get him, that I understood we were not allowed back there, this was not me allowing him to run (what idiots are these?), and could they please back off, they were scaring him?
I managed to get him back to a tent and calmed down some, and Andy went back to the pikes (and the folks, once they understood, were actually very helpful), and one of the folks who hadn't run after us, but remember Joey from earlier, came over and sat down to talk to him a little and help calm him down. After another brief melt, I figured out that Mom the Idiot needed to feed her children lunch.
So we found the food, bought some, and headed back to the woods to consume it. Corns dogs, fish and chips, cold drinks, yay! With everyone feeling better, we returned to Poppets to see what craft was happening and take a breath. They boys rediscovered the toy area.
Since they were happy, I let them dress up and play to their heart's content. Andy became a cowboy. Joey was a "boy princess", which I explained was a prince, so he became "Doctor Prince"- who helped animals who are sick, and wears a beautiful crown. Happy boys.
Joey talked to himself in the mirror, and announced himself to all and sundry, as Andy played on the horse and explored the other toys. At one point, we had a good crew of dressed-up kids running about, though most of the kids (and most of the adults!) came already in full costume!
Then we had a puppet play, and the boys now want me to make a stage and puppets. I have a surprise. They are going to make the puppets.
Then the craft of the hour was making dolls, and the boys wanted one, so they got busy making dolls. That was lovely, though Andy wasn't so keen on knots, and wanted his doll to have a red hat. I made him one when we got home.
Then came the Knighting Ceremony! Joey was knighted by the Queen, along with many of the other children. We got cool certificates and Joey got a pin, but Andy was too nervous to be knighted at the ceremony. Too many people in funny (but gorgeous!) clothes. Oh, and there was a real sword involved.
After the ceremony, we were permitted audience with the Queen. Joey got up and let everybody know he liked math, and the very gracious Queen chatted with him for a minute before sending him to the treasure box for a present. These people knew what they were doing with this. During the Knighting, they knew where parents needed to stand to get good photos, and insisted on waiting until parents were in position and ready before doing the knighting. Then they made sure everybody was happy with the photos before moving on. She did the same for the audience, making sure everyone got the "portraits" they wanted with their "faerie boxes."
Joey picked a coin from the treasure box. He was very pleased with it, and ran about showing everyone in the glade. Seeing a treasure box made his brother bolder- a chance for a toy! Wow! We were all about that!
So up brave Andy went, and even gave the Queen a hug! She talked to him for a while, then asked if he was ready now to be knighted. He said yes, so the ceremony commenced! So I now have two Defenders of the Realm, Sir Joey and Sir Andy! Andy was also fascinated by the jewels on the Queen's gown, which she thought amusing.
Huzzah, Sir Andy! For being so brave, he got to pick two prizes- a red glass pebble and a coin! (He didn't get a pin, because he didn't get knighted in the first ceremony, and the girl with the pins was gone).
We went on to play more games, and buy wooden swords. I couldn't take pictures because I was holding two iced lemonades and handing out money.
So overall, a good time had by all. Put on your medieval duds and head over there. Oh, and they serve beer, wine, and hard cider, they card you at the front and give you a bracelet, and the pub looked lovely, and had lots of singing and stuff going on. The folks at the front laughed when I explained I didn't want a bracelet- I had two little guys to keep up with, I needed my wits. Definitely worth the $8. Much better than a movie.
Friday, May 14, 2010
While you wait...
While you are waiting for inspiration to strike me, please take a nice stroll in my garden. Lemonade is on the deck.
Tuesday, May 11, 2010
Non-Update: School Incident
You may remember that we had an incident at school a couple weeks ago; Joey was taught a bad word and then paraded about the class to repeat it, to the amusement of his classmates. Want a textbook example of bullying a child with a disability? Here it is.
You may remember I was assured there was teaching, there was "consequences" for the other child, there was discussion. However, with such an event happening even when the next school is assuring us that "our kids aren't like that", and the possible supports I could arrange through his OT and speech therapists, getting a report on the incident has been... frustrating.
I went to the school office and requested a report. I was told to see Ms. D, and someone went to tell her I was there. I waited. Then I was told Ms. D was busy and had appointments waiting, so I put my request in writing. The response was an email to the effect of, "I have no incident report on this incident." Um... wait a minute, I thought there were "consequences" for the bully involved? If there were "consequences", surely there was a report, and the victim should have access to such a report (with the name of the other child's name and ID info redacted for privacy- we are talking about minors here)? Or since I have requested one, perhaps one could be created to document the incident? No, I was referred to the gym teacher, Mr. P, who left a message on my phone.
Talking on the phone is not documentation.
What, I'm not happy that Joey is fine and the other child has had "consequences"?
Well, no. No I'm not. Joey isn't fine. I want a frickin' report. In writing. Now.
I stumbled upon the teacher in question when Joey missed the bus one morning, and I had to take him to school. The teacher was upset, and perhaps a little nervous to realize who I was, and not knowing whether or not I knew who he was. I certainly know now. I was promised a summary of the incident via email by the following Monday.
Sound good? Yeah. Too good. Two weeks later, I've got nada. Last week, I contacted our awesome case manager to make sure the email I had sent confirming the conversation had not fallen into the nethers, and had her re-forward my email. I still have nothing.
Today is Tuesday. If I still have nothing come Thursday, Hell breaks loose on Friday. Just saying.
You may remember I was assured there was teaching, there was "consequences" for the other child, there was discussion. However, with such an event happening even when the next school is assuring us that "our kids aren't like that", and the possible supports I could arrange through his OT and speech therapists, getting a report on the incident has been... frustrating.
I went to the school office and requested a report. I was told to see Ms. D, and someone went to tell her I was there. I waited. Then I was told Ms. D was busy and had appointments waiting, so I put my request in writing. The response was an email to the effect of, "I have no incident report on this incident." Um... wait a minute, I thought there were "consequences" for the bully involved? If there were "consequences", surely there was a report, and the victim should have access to such a report (with the name of the other child's name and ID info redacted for privacy- we are talking about minors here)? Or since I have requested one, perhaps one could be created to document the incident? No, I was referred to the gym teacher, Mr. P, who left a message on my phone.
Talking on the phone is not documentation.
What, I'm not happy that Joey is fine and the other child has had "consequences"?
Well, no. No I'm not. Joey isn't fine. I want a frickin' report. In writing. Now.
I stumbled upon the teacher in question when Joey missed the bus one morning, and I had to take him to school. The teacher was upset, and perhaps a little nervous to realize who I was, and not knowing whether or not I knew who he was. I certainly know now. I was promised a summary of the incident via email by the following Monday.
Sound good? Yeah. Too good. Two weeks later, I've got nada. Last week, I contacted our awesome case manager to make sure the email I had sent confirming the conversation had not fallen into the nethers, and had her re-forward my email. I still have nothing.
Today is Tuesday. If I still have nothing come Thursday, Hell breaks loose on Friday. Just saying.
Saturday, May 08, 2010
The Hardest Half Minute
When I take pics and film of my guys, it is a rare thing to see them doing anything but being their smiling, happy little selves, being boys and doing stuff boys do. When I send out movies and slide shows of my kids, it becomes hard for some folks to believe that our lives are so divergent from normal. It spreads a sort of myth that my kids just do "more of the same".
I don't use the word "myth" lightly, as many of my students can tell you. That general misuse of the term to indicate "complete falsehood" makes properly talking about myth difficult. Myth is not false. Myth is about deeper Truth. Perhaps Truth on the Slant. An oblique view of realities, in terms that are understandable to the audience. The image I put out of Joey and Andy, that "like other kids, only more" is an oblique look at the Truth of living with my kids. But what does it mean to have "more of the same"? Does intensity make a difference?
I took footage of about 30 seconds of the start of a spiral today. Joey fell and scraped his knees, poor little guy, and the instant overload commenced. Few get to see this part of Joey, that "everything is perfect until something goes wrong; then I'm completely D.O.N.E." side. Those who do see it, see it so often, we're used to it, it just becomes par for the course, and you know what to do to mitigate and have the best chances of avoiding meltdown.
However, our new school folks have not seen it. The folks who think none of their little darlings would tease a special needs child have no clue what this looks like, or what to do; and it becomes so matter-of-course to the old crew that I think it gets overlooked. It is a part of our lives left undocumented, and I worry about it being ignored. Ignoring it can cause a whole host of problems; not having safeguards in place to deal with the unexpected spiral means meltdowns are on the way. Meltdowns are scary- for Joey as well for anyone around him. They are also avoidable, if you know what you doing and how to diffuse a situation (which is hard enough to do when you are prepared and keeping it mind!) I'd say, prepared, you have about an 80-90% chance of averting meltdown. Unprepared? Eep.
So I took about 30 seconds of footage of the beginnings of a spiral. I didn't catch the first initial shock and scream from the actual fall. I started with him hugging on his Dad and getting hugged, and yet things were still not right. He was D.O.N.E. It goes up to when he decides "I'm leaving now" (and says so), and I have to stop filming to go catch him. We didn't melt, and I'll probably never get footage of a melt. I'm too busy trying to help him to be filming something like that. But this was enough to see the storm clouds brewing. Hopefully dark clouds on the horizon are enough to indicate the strength of a potential storm.
Watching those 30 seconds was hard. I look over the clips, and erase ones that are better tossed to oblivion- unfortunate angles, bad focus, accidental exposures, that sort of thing. I also wanted to get an idea of what I had captured, because to be honest, I was paying more attention to Joey than to the camera, even though it was in my hand; those little markers that say "I'm about to melt!" are important to catch. I think it is important to get across to the school what skills we need worked on and able to generalize to home, and the potential issues over things we consider insignificant. It is also important to document the issue so we can measure improvements- or track regressions. I'm nervous about next year in a big way. The questions asked by the new teachers at the IEP made plain how unprepared they are.
It is all the harder to watch because we are through the early spring regressions, and have made our leap forward. Joey helped his Grandma make her bed- mattress cover and all. He is better able to locate objects in a room, even bringing things from one room to another. He is improving in his ability to control himself and cope. His language use is looking up. His attitudes are generally improving. He's doing so well. It makes the harder moments that much harder to witness, and to get others to understand. We've come so far, and yet have so far to go; we can't get stuck in a rut in the middle. Not now.
I don't use the word "myth" lightly, as many of my students can tell you. That general misuse of the term to indicate "complete falsehood" makes properly talking about myth difficult. Myth is not false. Myth is about deeper Truth. Perhaps Truth on the Slant. An oblique view of realities, in terms that are understandable to the audience. The image I put out of Joey and Andy, that "like other kids, only more" is an oblique look at the Truth of living with my kids. But what does it mean to have "more of the same"? Does intensity make a difference?
I took footage of about 30 seconds of the start of a spiral today. Joey fell and scraped his knees, poor little guy, and the instant overload commenced. Few get to see this part of Joey, that "everything is perfect until something goes wrong; then I'm completely D.O.N.E." side. Those who do see it, see it so often, we're used to it, it just becomes par for the course, and you know what to do to mitigate and have the best chances of avoiding meltdown.
However, our new school folks have not seen it. The folks who think none of their little darlings would tease a special needs child have no clue what this looks like, or what to do; and it becomes so matter-of-course to the old crew that I think it gets overlooked. It is a part of our lives left undocumented, and I worry about it being ignored. Ignoring it can cause a whole host of problems; not having safeguards in place to deal with the unexpected spiral means meltdowns are on the way. Meltdowns are scary- for Joey as well for anyone around him. They are also avoidable, if you know what you doing and how to diffuse a situation (which is hard enough to do when you are prepared and keeping it mind!) I'd say, prepared, you have about an 80-90% chance of averting meltdown. Unprepared? Eep.
So I took about 30 seconds of footage of the beginnings of a spiral. I didn't catch the first initial shock and scream from the actual fall. I started with him hugging on his Dad and getting hugged, and yet things were still not right. He was D.O.N.E. It goes up to when he decides "I'm leaving now" (and says so), and I have to stop filming to go catch him. We didn't melt, and I'll probably never get footage of a melt. I'm too busy trying to help him to be filming something like that. But this was enough to see the storm clouds brewing. Hopefully dark clouds on the horizon are enough to indicate the strength of a potential storm.
Watching those 30 seconds was hard. I look over the clips, and erase ones that are better tossed to oblivion- unfortunate angles, bad focus, accidental exposures, that sort of thing. I also wanted to get an idea of what I had captured, because to be honest, I was paying more attention to Joey than to the camera, even though it was in my hand; those little markers that say "I'm about to melt!" are important to catch. I think it is important to get across to the school what skills we need worked on and able to generalize to home, and the potential issues over things we consider insignificant. It is also important to document the issue so we can measure improvements- or track regressions. I'm nervous about next year in a big way. The questions asked by the new teachers at the IEP made plain how unprepared they are.
It is all the harder to watch because we are through the early spring regressions, and have made our leap forward. Joey helped his Grandma make her bed- mattress cover and all. He is better able to locate objects in a room, even bringing things from one room to another. He is improving in his ability to control himself and cope. His language use is looking up. His attitudes are generally improving. He's doing so well. It makes the harder moments that much harder to witness, and to get others to understand. We've come so far, and yet have so far to go; we can't get stuck in a rut in the middle. Not now.
Thursday, May 06, 2010
At the Park, Part II
After school, it was such a lovely day, we just had to wander over to the park for some serious playtime. There were some families we knew already there, so that was exciting, and I stood around with a bunch of other moms while our kids ran wild over slide and swing.
Its always a little odd to be in a group of "regular" moms. This particular group is very interesting, because the women are all so different, and here we are tossed together because our kids run in the same age cloud. One mom is a powerhouse who has her kids in Montessori schools. One is a health nut from South Africa who doesn't believe in vaccinating her child because she thinks it is "more natural" for her child to simply get diseases (but she's doing something right- her child is an absolute wonder). One is a hippie-type laid-back mom who doesn't say much, but hears much. The other is a very strict mom who doesn't seem to think her kids ought to get dirty... at a playground... One of them works, the others are all stay-at-home (though I suspect the quiet one is actually a work-at-home). The variety of life experience always makes for interesting insights and ideas bouncing about.
Then there is the odd part. The topics of conversation are odd to me. Working mom had a job interview, hoping her job goes full-time permanent, because she is in the process of a divorce. There was talk about working and giving up work. Having just had an interview myself, we managed to have some common ground there. Then there is the discussions of school activities. Since we have speech on Tuesdays, and the after-school programs require that you attend all sessions, we can't participate in them. Then there was the discussion of packing lunches. This was an extensive conversation about a fancy lunchbox that is divided into a lot of little sections, so you can provide a variety of foods, "not just a sandwich and carrots!" The swapping of lunch ideas was mind-bending. Do 8-year-olds really eat sushi and hummus? Does cous-cous keep well in a lunchbox? We're a bit of a sandwich, carrots, and fruit family. I'm not very creative with the lunch thing. Maybe I ought to be. Then the topic of movies and TV... I hate that one. I have never seen Titanic. I have seen exactly one scene of Desperate Housewives, and that is because Marlee Matlin is in it. And it didn't make me want to see the show. On the flip side, these ladies have never heard of Buckaroo Bonzai or Ground Force. They apparently have a book club, but I had never heard of the book.
No one talking about IEPs. Nothing about teachers, services, therapies, or odd behaviors. They let their kids run without even turning their heads to check them. A group of slightly older boys came straggling through, boys that have given Joey a hard time before, and I quickly clicked into watchfulness, and had to intervene. The other moms gave me a Look. There isn't a good way to explain that your kid was about to be seriously abused, and the words you heard suggested the abuse might go physical, and you had to do something because your kid doesn't understand to just walk away, doesn't understand that what was being said to him in that tone was intended maliciously. Also, how can you explain that your child is a little off-kilter because you are not sitting in your usual spot, even though you are in full and clear view?
The little group broke up, probably due to the time rather than my intervention in "playground politics". There were goodbyes and exchanging of new cell numbers amongst them, pleasantries. I'm perfectly welcome among them, but definitely different. I have very limited ground to share. I've spent my life that way, so it is nothing new, but it always feels odd.
Its always a little odd to be in a group of "regular" moms. This particular group is very interesting, because the women are all so different, and here we are tossed together because our kids run in the same age cloud. One mom is a powerhouse who has her kids in Montessori schools. One is a health nut from South Africa who doesn't believe in vaccinating her child because she thinks it is "more natural" for her child to simply get diseases (but she's doing something right- her child is an absolute wonder). One is a hippie-type laid-back mom who doesn't say much, but hears much. The other is a very strict mom who doesn't seem to think her kids ought to get dirty... at a playground... One of them works, the others are all stay-at-home (though I suspect the quiet one is actually a work-at-home). The variety of life experience always makes for interesting insights and ideas bouncing about.
Then there is the odd part. The topics of conversation are odd to me. Working mom had a job interview, hoping her job goes full-time permanent, because she is in the process of a divorce. There was talk about working and giving up work. Having just had an interview myself, we managed to have some common ground there. Then there is the discussions of school activities. Since we have speech on Tuesdays, and the after-school programs require that you attend all sessions, we can't participate in them. Then there was the discussion of packing lunches. This was an extensive conversation about a fancy lunchbox that is divided into a lot of little sections, so you can provide a variety of foods, "not just a sandwich and carrots!" The swapping of lunch ideas was mind-bending. Do 8-year-olds really eat sushi and hummus? Does cous-cous keep well in a lunchbox? We're a bit of a sandwich, carrots, and fruit family. I'm not very creative with the lunch thing. Maybe I ought to be. Then the topic of movies and TV... I hate that one. I have never seen Titanic. I have seen exactly one scene of Desperate Housewives, and that is because Marlee Matlin is in it. And it didn't make me want to see the show. On the flip side, these ladies have never heard of Buckaroo Bonzai or Ground Force. They apparently have a book club, but I had never heard of the book.
No one talking about IEPs. Nothing about teachers, services, therapies, or odd behaviors. They let their kids run without even turning their heads to check them. A group of slightly older boys came straggling through, boys that have given Joey a hard time before, and I quickly clicked into watchfulness, and had to intervene. The other moms gave me a Look. There isn't a good way to explain that your kid was about to be seriously abused, and the words you heard suggested the abuse might go physical, and you had to do something because your kid doesn't understand to just walk away, doesn't understand that what was being said to him in that tone was intended maliciously. Also, how can you explain that your child is a little off-kilter because you are not sitting in your usual spot, even though you are in full and clear view?
The little group broke up, probably due to the time rather than my intervention in "playground politics". There were goodbyes and exchanging of new cell numbers amongst them, pleasantries. I'm perfectly welcome among them, but definitely different. I have very limited ground to share. I've spent my life that way, so it is nothing new, but it always feels odd.
Monday, May 03, 2010
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