Monday, July 04, 2011
Sunday, July 03, 2011
Giraffes CAN Dance!
Joey just finished his week of Stage Door Stars, and it was Totally. Awesome. This is a program to help kids with communication disorders and disabilities get together and have intensive therapy for a week, under the guise of putting on a play. They have a speech therapist, occupational therapists, theater teachers, special ed teachers, art teachers... and every kid gets a "coach" assigned to them for the week.
Joey loved loved loved it. He was bit nervous the first day, and pretended to be Quack the Duck all week, but he liked it, he wants to do it again next year, and he had a lot of fun.
The play was based on the book, Giraffes Can't Dance by Giles Andreae. Joey was a rhinoceros. He was fabulous. I would show you the clips, but you can see a lot of the other kids, and some of them would prefer not to be on the internet. So you have to take my word for it, he was fabulous and his usual beautiful hammy self up there. However, he was also his usual beat behind on the dance routines and most of the lines. We might need to stress the sign language and visual supports more in stuff like this, because I know he notices and finds it frustrating.
The kids do everything to put on the play. They make the costumes (which included a tail they had to stuff, the headbands, the necklaces, and attaching squares of fabric to their t-shirts), the props, the set- there were paper flowers, paper plate snakes, paper ants, trees to be made, stars for the backdrop, everything. They had a choreographer come help them learn to move and dance, a drama instructor and director, they had the kids do everything. Each kid had a little dance they did with one or two other kids, a section of the book to say, and several group dances. They did a great job.
Joey had two awesome coaches for the week. He got to have two because during orientation, the staff was graced with witnessing one of Joey's bolting dashes out the door. I showed them Peep and the Big Wide World on the first day and explained the whole Quack thing, and then fell right into it. They didn't even mind when he signed himself in as Quack Guyton. Apparently, they went home, checked out the website, and were right in tune to help Joey along. They were awesome. 
They have a couple of one-day workshops in the fall, and we are so totally there. And next summer? Sign us up!
Wednesday, June 29, 2011
Summer Update On Us
Summer is now in Full Swing.
Last week was Free Week 1. That means nobody had any formal anything to do. Usually I try to keep the guys super-busy, but with Joey being already out-of-sorts, I did my best to give them time to settle. We went to the Richmond Zoo, which was A.W.E.S.O.M.E. The boys got to feed giraffes, play with free-flying parakeets, and get up close and personal with free-ranging chickens and peacocks. (Friends Who Visit, the next time you come this way, I have The Perfect Place To Go).
We also spent some time at Colonial Beach, with our good buddy the Awesome Neighbor. So far, so good.
Then my business trip was upon us and Joey started freaking out a bit. Fortunately, I knew he might, so had planned closer-to-home activities and lots of pool time. Also, we have been joined by Evan. To make a long story short and sweet, we have my adopted brother here for the foreseeable future, which is A-OK with my boys, because they think Evan is awesome. He's been getting used to our routines and quirks.
Mom going away for two days is not a good thing for boys. We made it through, and here I be again.
Joey has a theater camp this week, designed for kids with communication and speech issues. He seems to be enjoying it. On Friday, the group will put on a play, and he seems happy. The only thing is, he has decided this week to be Quack instead of Joey, so I'm worried he might be a little anxious. We sign the kids in and out of the camp, and they each have their own "coach" as well as the adults running the programs. Joey has two coaches (he ran during orientation, so they decided to double-team him just in case). The coaches come out and take them in, then bring them out at the end. Yesterday, Joey signed himself in as Quack. Today, the coaches bid him goodbye, saying "See you tomorrow, Quack!" Hmmm...
Andy has been having "Nature Camp" at Grandma's while Joey is at theater camp. Andy's been very into the Wild Kratts, so he seemed keen to be into nature stuff. I thought we'd be doing some wading in teh river, but he hasn't been keen on going into the woods. We had a nice nature walk on Monday, and yesterday Grandma found an awesome chemistry set so we ran some simple experiments. Today we skipped it in favor of picking out fireworks for the Fourth. He seems happy, though.
After camp, we have lunch and then go to the pool. I decided to have this routine for the summer, so that Joey could stay oriented and not freaked out like last summer. He's picked right up on it. Today, Andy needed a little sit-down before pooltime, and Joey was pretty upset. I told him to get his suit on, and I got mine on, since he likes it when I swim with him. Then I came downstairs and discovered no Joey.
Back upstairs... no Joey.
Apparently, I forgot to lock the door when I brought the fireworks in.
I popped out but didn't see him looking down the street, but that was also likely because he was behind a car or something. Awesome Neighbor's grandfather came over to tell me was, indeed, headed down the street, and was far enough along that running wasn't going to cut it (he had seen me pop out and call for Joey, so he started looking, too). I hopped in the car, and was off to catch him. He turned up a street, headed for the pool himself. When I caught up with him and asked him where he was going, he clearly said, "The pool! It's pool time!" So I explained that he needed a towel, and had no money for the snack bar, and they won't let him in without an adult! And he hopped right into the car, no complaints or anything.
Whew.
This might be a long summer.
Last week was Free Week 1. That means nobody had any formal anything to do. Usually I try to keep the guys super-busy, but with Joey being already out-of-sorts, I did my best to give them time to settle. We went to the Richmond Zoo, which was A.W.E.S.O.M.E. The boys got to feed giraffes, play with free-flying parakeets, and get up close and personal with free-ranging chickens and peacocks. (Friends Who Visit, the next time you come this way, I have The Perfect Place To Go).
We also spent some time at Colonial Beach, with our good buddy the Awesome Neighbor. So far, so good.
Then my business trip was upon us and Joey started freaking out a bit. Fortunately, I knew he might, so had planned closer-to-home activities and lots of pool time. Also, we have been joined by Evan. To make a long story short and sweet, we have my adopted brother here for the foreseeable future, which is A-OK with my boys, because they think Evan is awesome. He's been getting used to our routines and quirks.
Mom going away for two days is not a good thing for boys. We made it through, and here I be again.
Joey has a theater camp this week, designed for kids with communication and speech issues. He seems to be enjoying it. On Friday, the group will put on a play, and he seems happy. The only thing is, he has decided this week to be Quack instead of Joey, so I'm worried he might be a little anxious. We sign the kids in and out of the camp, and they each have their own "coach" as well as the adults running the programs. Joey has two coaches (he ran during orientation, so they decided to double-team him just in case). The coaches come out and take them in, then bring them out at the end. Yesterday, Joey signed himself in as Quack. Today, the coaches bid him goodbye, saying "See you tomorrow, Quack!" Hmmm...
Andy has been having "Nature Camp" at Grandma's while Joey is at theater camp. Andy's been very into the Wild Kratts, so he seemed keen to be into nature stuff. I thought we'd be doing some wading in teh river, but he hasn't been keen on going into the woods. We had a nice nature walk on Monday, and yesterday Grandma found an awesome chemistry set so we ran some simple experiments. Today we skipped it in favor of picking out fireworks for the Fourth. He seems happy, though.
After camp, we have lunch and then go to the pool. I decided to have this routine for the summer, so that Joey could stay oriented and not freaked out like last summer. He's picked right up on it. Today, Andy needed a little sit-down before pooltime, and Joey was pretty upset. I told him to get his suit on, and I got mine on, since he likes it when I swim with him. Then I came downstairs and discovered no Joey.
Back upstairs... no Joey.
Apparently, I forgot to lock the door when I brought the fireworks in.
I popped out but didn't see him looking down the street, but that was also likely because he was behind a car or something. Awesome Neighbor's grandfather came over to tell me was, indeed, headed down the street, and was far enough along that running wasn't going to cut it (he had seen me pop out and call for Joey, so he started looking, too). I hopped in the car, and was off to catch him. He turned up a street, headed for the pool himself. When I caught up with him and asked him where he was going, he clearly said, "The pool! It's pool time!" So I explained that he needed a towel, and had no money for the snack bar, and they won't let him in without an adult! And he hopped right into the car, no complaints or anything.
Whew.
This might be a long summer.
Wednesday, June 22, 2011
Sunday, June 19, 2011
Happy Father's Day
To JoeyAndyDad, because he is so awesome
Because he loves his boys with all his heart, and al his might
To a Dad who pushes his boys to be the best they can be
A Dad who teaches his boys new things- like drinking from cup, or setting a table
A Dad who goes to IEP meetings, and scrutinizes them at every report card day
A Dad who loves to hug his boys, and read to them at night, and squish them all day.
To my Uncle Lou, because he understands
For his patience and acceptance of our guys
And his willingness to give them the time they need
And the hugs they want.
Happy Father's Day!
Thursday, June 16, 2011
Hmmmmm... The Issue of Recognition
When I was in fifth grade, the great goal of the "gifted" set was to be on the Safety Patrol. To wear that sash and badge and help direct the little ones to their buses was the mark of honor, the reward we got for putting up with a good deal- jibes and teasing from classmates for being nerds and curve-breakers, the scrounging of the over-acheivers and their busybody parents (helicopter parents are not as new as some would have you believe), and the work involved in learning and doing extra work that was often assigned to keep us busy. Being socially isolated on top of that, I took great pride in showing myself to be somebody by wearing that badge. I had the extra knock in fifth grade because I didn't test into the highest math group (in the tests, though every single I gave was accurate, apparently I did not do the problems quickly enough...), making me a social pariah even among the gifted group as "not good enough."*
When one is doing a lot of work and getting very little reward or seeing very little use in it, little things like awards and certificates and hearing your name called can be a huge deal- especially when you are a child.
Seared into my memory is that day I was not made a patrol for a whole six weeks of the fifth grade. My whole little world was aimed at maintaining my position, perhaps to be eventually made Captain! But no, I was knocked aside- with only one B on my report card (my handwriting sucked)- for a girl with all Cs, and one who was particularly good at making it clear I was none too socially included in my class- I was too tall, too plain, too fat, and too bookish.
I remember the teacher sending me out of the room, because I actually started to cry. Did she have any idea what a disaster had befallen me? No, she had no clue. I got a lecture about how I was supposed to be so mature, how she needed this award to go to this girl who had worked so hard to get that all-C report card. How I would have this honor many times, and this might be the only chance this girl got. Oh yes, I remember. I could quote you the conversation exactly if I didn't think you'd find it boring. And I reacted like a 10-year-old might, left to pull myself together in that hall and chew on my disgrace among my peers, alone. To be honest, it still makes me tear up, that's how horrible it was. After all... I was ten years old. The reverberations from that disgrace actually did follow me for the rest of my school years, forever on the fringe.
At ten, I comprehended what the teacher wanted, and why this had happened. My brain processed it coldly, and still chews on it now. Someone else needed a reward. They needed something to work for. They needed a goal, a carrot before their nose. And apparently, I was undeserving of that. My work was worth nothing compared to the needs of another. My needs were not as important as another's. Clearly, my own pain was a frivolity, my own position of less worth. Why would a child who has talent need a reward for those talents?
We can, as adults, probably see clearly why that girl needed that safety patrol badge more than I did; I can already tell you who will tell me so, either in the comments or the emails I will get later, about how petty and childish it is to dwell upon that moment, or still feel it painful to do so. Certainly, that teacher did what she needed to do to help that other girl- she rose to be Captain of the Patrols (what a miserable six weeks that was for me), and a decent student through high school. I can sit here and reason it out and provide solid logic for it. None of that adult reasoning does anything to help a ten-year-old girl, I can tell you, especially one who was still considered new and trying to fit into social circles enough to at least not feel alone.
Joey came home today with his awards from school (we didn't go to the ceremony because he was at Mt. Vernon- he got his awards when they got back). He has certificates that say he knows multiplication 0-4, and 0-9. Woo. Hoo. He's known those for almost two years now. He had a nice Health Award, and a Most Improved Participation in Music award.
And that is what he got. No math. No reading.
Kinda makes you wonder about who gets awards and how it is determined, doesn't it? Your top math student gets no math award? What's that about? Do people not understand what powerful reinforcement these awards can be?
Trust me, I just spent a lovely twenty minutes hearing all about it. The field trip to Mt. Vernon? I had to pull teeth to get anything about it. That two other students got math awards, and he didn't? I know all about it. And I assure you, I will be giving him lots of hugs and kisses and working hard to make him understand how proud I am of him tonight. After a year like he has had, to have no recognition of his strength in math before his peers is, I know well, searing. Already being the only top math student not in the gifted program, plus being disabled with social interaction issues, is quite bad enough, without this. Add into it the loss of the spelling bee. And after the year he's endured? Come on, let him know you are proud of his academics. It's not like its even being a patrol- all it costs you is a piece of paper. Seriously.
*And just a little fault of vindictiveness here, boy did I prove that to be a joke when I became the youngest captain of the high school math team as a junior.
When one is doing a lot of work and getting very little reward or seeing very little use in it, little things like awards and certificates and hearing your name called can be a huge deal- especially when you are a child.
Seared into my memory is that day I was not made a patrol for a whole six weeks of the fifth grade. My whole little world was aimed at maintaining my position, perhaps to be eventually made Captain! But no, I was knocked aside- with only one B on my report card (my handwriting sucked)- for a girl with all Cs, and one who was particularly good at making it clear I was none too socially included in my class- I was too tall, too plain, too fat, and too bookish.
I remember the teacher sending me out of the room, because I actually started to cry. Did she have any idea what a disaster had befallen me? No, she had no clue. I got a lecture about how I was supposed to be so mature, how she needed this award to go to this girl who had worked so hard to get that all-C report card. How I would have this honor many times, and this might be the only chance this girl got. Oh yes, I remember. I could quote you the conversation exactly if I didn't think you'd find it boring. And I reacted like a 10-year-old might, left to pull myself together in that hall and chew on my disgrace among my peers, alone. To be honest, it still makes me tear up, that's how horrible it was. After all... I was ten years old. The reverberations from that disgrace actually did follow me for the rest of my school years, forever on the fringe.
At ten, I comprehended what the teacher wanted, and why this had happened. My brain processed it coldly, and still chews on it now. Someone else needed a reward. They needed something to work for. They needed a goal, a carrot before their nose. And apparently, I was undeserving of that. My work was worth nothing compared to the needs of another. My needs were not as important as another's. Clearly, my own pain was a frivolity, my own position of less worth. Why would a child who has talent need a reward for those talents?
We can, as adults, probably see clearly why that girl needed that safety patrol badge more than I did; I can already tell you who will tell me so, either in the comments or the emails I will get later, about how petty and childish it is to dwell upon that moment, or still feel it painful to do so. Certainly, that teacher did what she needed to do to help that other girl- she rose to be Captain of the Patrols (what a miserable six weeks that was for me), and a decent student through high school. I can sit here and reason it out and provide solid logic for it. None of that adult reasoning does anything to help a ten-year-old girl, I can tell you, especially one who was still considered new and trying to fit into social circles enough to at least not feel alone.
Joey came home today with his awards from school (we didn't go to the ceremony because he was at Mt. Vernon- he got his awards when they got back). He has certificates that say he knows multiplication 0-4, and 0-9. Woo. Hoo. He's known those for almost two years now. He had a nice Health Award, and a Most Improved Participation in Music award.
And that is what he got. No math. No reading.
Kinda makes you wonder about who gets awards and how it is determined, doesn't it? Your top math student gets no math award? What's that about? Do people not understand what powerful reinforcement these awards can be?
Trust me, I just spent a lovely twenty minutes hearing all about it. The field trip to Mt. Vernon? I had to pull teeth to get anything about it. That two other students got math awards, and he didn't? I know all about it. And I assure you, I will be giving him lots of hugs and kisses and working hard to make him understand how proud I am of him tonight. After a year like he has had, to have no recognition of his strength in math before his peers is, I know well, searing. Already being the only top math student not in the gifted program, plus being disabled with social interaction issues, is quite bad enough, without this. Add into it the loss of the spelling bee. And after the year he's endured? Come on, let him know you are proud of his academics. It's not like its even being a patrol- all it costs you is a piece of paper. Seriously.
*And just a little fault of vindictiveness here, boy did I prove that to be a joke when I became the youngest captain of the high school math team as a junior.
Wednesday, June 15, 2011
Kittehs Available to Good Homes
A neighbor has five lovely little kittehs up for adoption. If you are in the Baltimore-Washington-Richmond corridor/area and need a nice babeh kitteh, drop me a line, I'll hook you up with a little sweetie-petitey.
Monday, June 13, 2011
We Have A Winner
With the end of the school year comes those awesome awards ceremonies, where you get to see your kid get an award for being awesome. Last year, Andy got no awards. He was very upset, and I didn't blame him, since he worked very hard all year. But that is how it goes with awards- not everyone gets one.
This year, he got three.
Andy earned his Excellence in Reading and Excellence in Math awards, which are based on the testing the schools do. The Reading one also considers if you choose to read or write when you have spare time. What was super-cute is when they asked "and who will be doing lots of reading this summer?" he hesitated before tentatively putting up his hand... half-heartedly. Hmm. But don't worry, I have some awesome books for him for the summer, we should be fine. The math award is more rare than the reading one, so that was pretty cool.
He also got the Good Citizenship award- the one you get when you have behaved yourself all year and been a good friend to everybody. Suspiciously, the bully we had to contend with this year also got Good Citizenship. Hmmm...
I am super-proud of my soon-to-be-second-grader. He is awesome, and worked hard this year to be super-awesome. Go, Andy!!!
This year, he got three.
Andy earned his Excellence in Reading and Excellence in Math awards, which are based on the testing the schools do. The Reading one also considers if you choose to read or write when you have spare time. What was super-cute is when they asked "and who will be doing lots of reading this summer?" he hesitated before tentatively putting up his hand... half-heartedly. Hmm. But don't worry, I have some awesome books for him for the summer, we should be fine. The math award is more rare than the reading one, so that was pretty cool.
He also got the Good Citizenship award- the one you get when you have behaved yourself all year and been a good friend to everybody. Suspiciously, the bully we had to contend with this year also got Good Citizenship. Hmmm...
I am super-proud of my soon-to-be-second-grader. He is awesome, and worked hard this year to be super-awesome. Go, Andy!!!
Saturday, June 11, 2011
Take Me Out to the Ball Game
It was Joey's last game of the season. How quick was that? Andy went out to play, too.
Joey is really running, now. There is something lovely about running those bases, especially with an awesome buddy!
Andy likes to field with the best of them! Especially looking cool.
Joey fields the ball.
Andy going for a ball He's pretty good at getting it to one of the real players, so they can throw it to first or home.
Joey and Andy make a great fielding team!
Andy got the ball a few times this game (sometimes he doesn't get one, and feels sad.)
Joey makes a sharp-looking outfielder, too.
He also played first base. No catcher today, it was too hot for anyone to put on the pads.
Joey got two excellent hits today! (We only played two innings.)
Joey gets on base.
Andy taking a break in the dugout. There must be other Little League games today, because the Little League set up its concession stand while we were there. Andy got some cool candies.
Joey, about to be safe at home! Go Joey!
We will miss you, Challengers! See you in the Fall!
Monday, June 06, 2011
Snickers is not just a candy bar. Unfortunately.
It happens to kids at all ages, all abilities, all over. The snickering. A little knot of kids glances at you, lean together, and it begins. You just know there is something about you that they think is weird, odd, ugly, funny. What really gets you is that they have their own quirks, and would be just as hurt if the snickering was about them.
Some kids get more snickering than others. I remember the snickering myself, the tall fat girl who knew too much. The curvebreaker. The weird kid. It can be very hard to see it so obviously aimed at Joey, to hear what the snickers are: Weird kid. Retard. Fat. Stupid.
Most of the snickering is a passing thing. Like driving along the road, I hardly even notice it anymore, registering as ignorant person is here-snickering-gone-forgotten. The effort needed to interrupt and educate would be seen only as further annoyance, the lesson lost on those who couldn't care less what pain they cause. The weird kid's mother is saying something, but it sounds like Charlie Brown's teacher: "wa wa wawa waaaaa."
Yet they stick like little pins, even in good times. Especially in good times.
A child, older, at the Beach Party. Joey said hello. The kid responded off-handedly, then mumbles something to a friend. Did I blanche at hearing those terrible snickers fall from the lips of a child Joey bothered to speak to, called by name? The friend says, "hey, that's the kid's mother!" and the kid turns his face to me. There is no point in saying anything, the child might be eleven, he knows his words are not something he would want "that kid" 's mother to overhear. I restrain myself to simply glaring at him. He stares back, he doesn't know what to say or do. I pass him to go say something about a picture Joey has drawn. Hint, kid: if you wouldn't want the kid's mother to hear what you are saying, you should be thinking hard about why are are saying it. Or thinking it. Or how you would like it if someone said that about you to someone else. Especially in front of your mother.
Two boys, nine? ten? one might be eleven? playing at the pool. The youngest says hello to Joey. Joey is absorbed in his own activity of shoveling water and barely responds. They move away from him- but if I can hear it, Joey can hear it. Weird kid from school, that's what he is to them. They play a sort of odd play with him-shun him pattern most the afternoon. I'm not sure he notices, he is busy with his own play, and seems unperturbed when they swim away from him after addressing him. He has a friend to play with, a girl with Downs, the boys refer to them as the "retarded kids". I probably turn purple. If I get up and fuss at them, would they hear me? Would they care? Would their parents simply back them up? I know these boys, I have seen them at the pool before and the playground, and I know the answers to these questions. Consequently, I save my breath. There are plenty of other kids for Joey to play with, he steers clear of them, he knows.
These aren't run-of-the-mill child-jibes. This is serious. My child is going to have to go through his life dealing with these people, because there are people who believe it is OK to make fun of people with disabilities. They think people like my son are of less value than themselves, or think so little of themselves that they want to devalue Joey in an attempt to inflate their own. People believe that to be disabled is to be broken, to be less, to no longer be worthy of being human, or even having the right to live. People see no value in including those with different abilities and challenges, fail to learn the lessons of understanding, acceptance, faith, perseverance, strength, and hope that my child has to offer- in addition to the lessons he offers in reading, writing, and arithmetic, those all-important school subjects. To so many, Joey is a waste of time, a waste of money, a waste of resources, a waste of breath. Those many miss so much, lost in their ignorance, spreading it to their friends, their neighbors, their children. They don't understand that it is wrong, because they have been taught by our society that it is OK to snicker. Everyone snickers. Everyone gets snickered at. We all learn to just cope with it- ignore them, or worry about them, or poo-poo them, or whatever. What's the big deal?
Those standing in similar shoes as mine know exactly what the big deal is, as we struggle to teach our children to cope, as they don't just "pick it up" and are at a loss to defend themselves. The cry of "get thicker skin!" is such a sad one, a cry of of despair, one that shows complete ignorance of where I stand or the challenges my child faces. Trying to communicate the problem sounds incredible to those who are ignorant of it. We all get teased, it's what kids do, learn to deal, all kids have to, its a phase, they'll get over it. It is like trying to explain the difference between a tantrum and meltdown. The difference between a picky eater and a neophobe. The difference between a child wanting a toy to hold and a child needing a toy to hold. The limitations of human language become frustrating, but waxing mythic doesn't help. Most people don't want to think about things on the slant, don't want to deal with narrative metaphor. We seem to think it a deficit when autistic people only think concretely, but when non-autistic people can't move beyond the concrete, it's our problem that we can't communicate.
Then they snicker about how stupid we are. How's that for weird?
Some kids get more snickering than others. I remember the snickering myself, the tall fat girl who knew too much. The curvebreaker. The weird kid. It can be very hard to see it so obviously aimed at Joey, to hear what the snickers are: Weird kid. Retard. Fat. Stupid.
Most of the snickering is a passing thing. Like driving along the road, I hardly even notice it anymore, registering as ignorant person is here-snickering-gone-forgotten. The effort needed to interrupt and educate would be seen only as further annoyance, the lesson lost on those who couldn't care less what pain they cause. The weird kid's mother is saying something, but it sounds like Charlie Brown's teacher: "wa wa wawa waaaaa."
Yet they stick like little pins, even in good times. Especially in good times.
A child, older, at the Beach Party. Joey said hello. The kid responded off-handedly, then mumbles something to a friend. Did I blanche at hearing those terrible snickers fall from the lips of a child Joey bothered to speak to, called by name? The friend says, "hey, that's the kid's mother!" and the kid turns his face to me. There is no point in saying anything, the child might be eleven, he knows his words are not something he would want "that kid" 's mother to overhear. I restrain myself to simply glaring at him. He stares back, he doesn't know what to say or do. I pass him to go say something about a picture Joey has drawn. Hint, kid: if you wouldn't want the kid's mother to hear what you are saying, you should be thinking hard about why are are saying it. Or thinking it. Or how you would like it if someone said that about you to someone else. Especially in front of your mother.
Two boys, nine? ten? one might be eleven? playing at the pool. The youngest says hello to Joey. Joey is absorbed in his own activity of shoveling water and barely responds. They move away from him- but if I can hear it, Joey can hear it. Weird kid from school, that's what he is to them. They play a sort of odd play with him-shun him pattern most the afternoon. I'm not sure he notices, he is busy with his own play, and seems unperturbed when they swim away from him after addressing him. He has a friend to play with, a girl with Downs, the boys refer to them as the "retarded kids". I probably turn purple. If I get up and fuss at them, would they hear me? Would they care? Would their parents simply back them up? I know these boys, I have seen them at the pool before and the playground, and I know the answers to these questions. Consequently, I save my breath. There are plenty of other kids for Joey to play with, he steers clear of them, he knows.
These aren't run-of-the-mill child-jibes. This is serious. My child is going to have to go through his life dealing with these people, because there are people who believe it is OK to make fun of people with disabilities. They think people like my son are of less value than themselves, or think so little of themselves that they want to devalue Joey in an attempt to inflate their own. People believe that to be disabled is to be broken, to be less, to no longer be worthy of being human, or even having the right to live. People see no value in including those with different abilities and challenges, fail to learn the lessons of understanding, acceptance, faith, perseverance, strength, and hope that my child has to offer- in addition to the lessons he offers in reading, writing, and arithmetic, those all-important school subjects. To so many, Joey is a waste of time, a waste of money, a waste of resources, a waste of breath. Those many miss so much, lost in their ignorance, spreading it to their friends, their neighbors, their children. They don't understand that it is wrong, because they have been taught by our society that it is OK to snicker. Everyone snickers. Everyone gets snickered at. We all learn to just cope with it- ignore them, or worry about them, or poo-poo them, or whatever. What's the big deal?
Those standing in similar shoes as mine know exactly what the big deal is, as we struggle to teach our children to cope, as they don't just "pick it up" and are at a loss to defend themselves. The cry of "get thicker skin!" is such a sad one, a cry of of despair, one that shows complete ignorance of where I stand or the challenges my child faces. Trying to communicate the problem sounds incredible to those who are ignorant of it. We all get teased, it's what kids do, learn to deal, all kids have to, its a phase, they'll get over it. It is like trying to explain the difference between a tantrum and meltdown. The difference between a picky eater and a neophobe. The difference between a child wanting a toy to hold and a child needing a toy to hold. The limitations of human language become frustrating, but waxing mythic doesn't help. Most people don't want to think about things on the slant, don't want to deal with narrative metaphor. We seem to think it a deficit when autistic people only think concretely, but when non-autistic people can't move beyond the concrete, it's our problem that we can't communicate.
Then they snicker about how stupid we are. How's that for weird?
Saturday, June 04, 2011
The Good is in the Eye of the Beholder
Joey's school had an awesome end-of-year Beach Party yesterday. They had crafts, two moon bounces, an area for chalking up the sidewalks, a raffle, free drinks and snacks, and a DJ for dancing (who did an excellent job selecting music and being appropriate and silly). Party it up for summer!
Joey enjoyed the chalk. He liked drawing Angry Birds and writing things like "I love Dad" and "For ages 7-12 with adult." Whenever it got overwhelming inside, he did a pretty good job of going out and bouncing or writing. He also made himself an ultra-cool Angry Birds pinwheel. Self-regulation win! Our only brush with a real meltdown was right at the start. There were some super-sized beachballs for the kids to play with, and Joey was playing with one. Some of the bigger kids came along and knocked it away from him so they could play with it all over the dance floor. Joey was, naturally, upset, especially since the bigger kids were not interested in letting him play, too, but were concerned with knocking it away from each other. Hence, the distraction of making the Angry Birds pinwheel, and our first trip outside to discover the chalk and moon bounces.
With the dance floor so loud, I was very pleased to see the school also have quieter areas for the kids to retreat to, such as the crafts and the outdoors chalk and bouncers. It worked perfectly!
I won't say it wasn't hard to watch him, though. All the other kids were dancing, laughing, shouting at each other, tangling and mingling and getting into groups. There was lots of line dancing, which Joey showed some interest in but clearly couldn't keep up with (I may track down some of the songs and see if I can teach him the steps, though there was one called the "Cha Cha Slide" and that, when they told you to "cha-cha", the step everyone did was not a cha-cha, but a cross box-step. Kinda weird.)
Anyway, otherwise, Joey pretended the floor was sand and that he was a dunebuggy or a car, with his pinwheel as the steering wheel, and walked circuits around the dance floor, ignoring everyone (including his best buddy who followed him around trying to get him to dance). One exception- early on, about half a dozen little girls saw him, squealed as if he were a rock star, and joined into a huddle of hugging him. Over the course of the evening, these young ladies each did their best to get him to dance, made sure he met their parents, and often gave him hugs if they found him (and he's return the hug quickly before driving off).
I let him know that if he wanted to leave, he was welcome to do so. He did go outside a few times. However, he spent most of his time doing circuits in a room that was clearly overwhelming for him- dark with flashing lights, lots of people moving, and incredibly loud music. He knew his friends were there. He knew that is was a party, and he was supposed to be having fun. He wanted to be there. He wanted to see his friends, and be part of the party. He did his best to cope and be a part of the party.
Towards the end, as he got very tired, he and his buddy grabbed a hula hoop, sat down, and pretended to be Porky Pig at the end of a Looney Tunes cartoon. They laughed. They enjoyed themselves.
I won't say it wasn't hard to watch him doing circuits when everyone else was dancing and interacting. It was hard to see him ignore the world and be alone in a sea of people.
But he had friends, who tried very hard to include him. They were happy he was there, and he was happy to see and be with them. Joey had fun. He was happy. His way.
We are SO going to this thing next year.
Joey enjoyed the chalk. He liked drawing Angry Birds and writing things like "I love Dad" and "For ages 7-12 with adult." Whenever it got overwhelming inside, he did a pretty good job of going out and bouncing or writing. He also made himself an ultra-cool Angry Birds pinwheel. Self-regulation win! Our only brush with a real meltdown was right at the start. There were some super-sized beachballs for the kids to play with, and Joey was playing with one. Some of the bigger kids came along and knocked it away from him so they could play with it all over the dance floor. Joey was, naturally, upset, especially since the bigger kids were not interested in letting him play, too, but were concerned with knocking it away from each other. Hence, the distraction of making the Angry Birds pinwheel, and our first trip outside to discover the chalk and moon bounces.
With the dance floor so loud, I was very pleased to see the school also have quieter areas for the kids to retreat to, such as the crafts and the outdoors chalk and bouncers. It worked perfectly!
I won't say it wasn't hard to watch him, though. All the other kids were dancing, laughing, shouting at each other, tangling and mingling and getting into groups. There was lots of line dancing, which Joey showed some interest in but clearly couldn't keep up with (I may track down some of the songs and see if I can teach him the steps, though there was one called the "Cha Cha Slide" and that, when they told you to "cha-cha", the step everyone did was not a cha-cha, but a cross box-step. Kinda weird.)
Anyway, otherwise, Joey pretended the floor was sand and that he was a dunebuggy or a car, with his pinwheel as the steering wheel, and walked circuits around the dance floor, ignoring everyone (including his best buddy who followed him around trying to get him to dance). One exception- early on, about half a dozen little girls saw him, squealed as if he were a rock star, and joined into a huddle of hugging him. Over the course of the evening, these young ladies each did their best to get him to dance, made sure he met their parents, and often gave him hugs if they found him (and he's return the hug quickly before driving off).
I let him know that if he wanted to leave, he was welcome to do so. He did go outside a few times. However, he spent most of his time doing circuits in a room that was clearly overwhelming for him- dark with flashing lights, lots of people moving, and incredibly loud music. He knew his friends were there. He knew that is was a party, and he was supposed to be having fun. He wanted to be there. He wanted to see his friends, and be part of the party. He did his best to cope and be a part of the party.
Towards the end, as he got very tired, he and his buddy grabbed a hula hoop, sat down, and pretended to be Porky Pig at the end of a Looney Tunes cartoon. They laughed. They enjoyed themselves.
I won't say it wasn't hard to watch him doing circuits when everyone else was dancing and interacting. It was hard to see him ignore the world and be alone in a sea of people.
But he had friends, who tried very hard to include him. They were happy he was there, and he was happy to see and be with them. Joey had fun. He was happy. His way.
We are SO going to this thing next year.
Monday, May 30, 2011
At the Faire
Took Andy to the Virginia Renaissance Faire this weekend. Joey didn't want to go. He was worried people would chase him. Andy and I had a really good time, though!
Thursday, May 26, 2011
After the Fact
I was hugging those boys today, and thinking how proud I am of them. They have lives so different from what I had thought they might have, so different from my own, with challenges I never imagined when I was young. They come through with the grace and dignity and strength that takes my breath away sometimes.
My grandfathers and grandmothers never knew my boys. That seems somehow really strange. My last grandparent died two and a half years before Joey was born. Pop Conway would be proud of my boys. I do my best to make them all proud. They show respect to other people as they can (hey, they are only 7 and 9)- please and thank you and bright smiles go a long way in a world where they seem to be fading from general use, especially in young children. Joey is smart and sweet and ready to help his friends and please his teachers. Andy cares for his brother, loves animals and gardens and light sabers, always ready to include new friends. People remember my boys when they meet them, they have presence and character. There are skills that come from parenting, which combine with solid character and personality to create good little people.
We work on those challenges of growing up together. We work on the hiccups and potholes and trips and falls.
Andy wanted a snack at bedtime, and was told that wasn't appropriate. He had eaten dinner, and hadn't asked for more, only an hour before. He was actually hungry, and not just bored and trying to prolong bedtime, and blew up. What other stresses were in play? He went upstairs dutifully, but with his mouth going.
"I hate Mommy!" we heard quite clearly downstairs, as we prepared to go up. He was instantly recalled, and affirmed that he meant this, and was sent back upstairs with no prospect of a bedtime story.
He figured out really quickly that he was in trouble. Bath was done in record time. There wasn't a peep from that room until Joey was done his own bath, then a little boy creeping to the top of the stairs.
"What do you need, Andy?" JoeyAndyDad stopped the little feet coming down.
"I want to hug you," came the little voice.
Dad put an apple in his pocket and headed up to have a chat.
"Your Mommy loves you. That really hurt her feelings," I heard, and waited. There were tears, remorse, grief. Down he came to tell me he loved me and get hugs and kisses. I told him I loved him and gave him all the hugs and kisses he wanted. Back up he went.
"Did you tell her you were sorry?"
"No."
"Get your bottom back down there!" JoeyAndyDad ordered in a loving, almost teasing tone. Down he came again.
"I'm sorry I said I hated you," he said in a small, teary voice. I hugged him more, kissed him.
"I know. You'll learn soon to only say things you mean," I assured him. "I love you."
"I love you, too."
And up went that little man, just a little more grown up.
My grandfathers and grandmothers never knew my boys. That seems somehow really strange. My last grandparent died two and a half years before Joey was born. Pop Conway would be proud of my boys. I do my best to make them all proud. They show respect to other people as they can (hey, they are only 7 and 9)- please and thank you and bright smiles go a long way in a world where they seem to be fading from general use, especially in young children. Joey is smart and sweet and ready to help his friends and please his teachers. Andy cares for his brother, loves animals and gardens and light sabers, always ready to include new friends. People remember my boys when they meet them, they have presence and character. There are skills that come from parenting, which combine with solid character and personality to create good little people.
We work on those challenges of growing up together. We work on the hiccups and potholes and trips and falls.
Andy wanted a snack at bedtime, and was told that wasn't appropriate. He had eaten dinner, and hadn't asked for more, only an hour before. He was actually hungry, and not just bored and trying to prolong bedtime, and blew up. What other stresses were in play? He went upstairs dutifully, but with his mouth going.
"I hate Mommy!" we heard quite clearly downstairs, as we prepared to go up. He was instantly recalled, and affirmed that he meant this, and was sent back upstairs with no prospect of a bedtime story.
He figured out really quickly that he was in trouble. Bath was done in record time. There wasn't a peep from that room until Joey was done his own bath, then a little boy creeping to the top of the stairs.
"What do you need, Andy?" JoeyAndyDad stopped the little feet coming down.
"I want to hug you," came the little voice.
Dad put an apple in his pocket and headed up to have a chat.
"Your Mommy loves you. That really hurt her feelings," I heard, and waited. There were tears, remorse, grief. Down he came to tell me he loved me and get hugs and kisses. I told him I loved him and gave him all the hugs and kisses he wanted. Back up he went.
"Did you tell her you were sorry?"
"No."
"Get your bottom back down there!" JoeyAndyDad ordered in a loving, almost teasing tone. Down he came again.
"I'm sorry I said I hated you," he said in a small, teary voice. I hugged him more, kissed him.
"I know. You'll learn soon to only say things you mean," I assured him. "I love you."
"I love you, too."
And up went that little man, just a little more grown up.
Tuesday, May 24, 2011
Happy Anniversary to Us
Fourteen years ago, right this moment, JoeyAndyDad and I were partying it up with our friends as a new married couple.
We're thinking of all of our friends, old and new, and raising a glass to you.
Saturday, May 21, 2011
Happy Birthday, Andy!
Can you believe that Andy is now seven? Where did the time go? And who is this tall, handsome dude in my house? Andy had, i think, a lovely birthday. He started off as bat boy and buddy at Joey's baseball game. He likes being included in the games. We actually gave him the option to not go, but prep for his party instead, and he chose to go help his Joey. That's our birthday boy!
We gathered for cake and ice cream in the back yard after lunch. We had an awesome Darth Vader piñata (our theme today was Star Wars Ninja Pirates), with candy, super balls, parachute dudes and ninja dudes in it. That was hit. I am definitely doing the piñata thing again next year. Maybe I'll have time to make it myself, though- they're a little pricey. Joey was the one who broke the piñata. It was pretty cool.
Andy decided to try the dark side out for size. Well, at least Darth's helmet and face from the piñata. He had spent the morning asking if he could wear it, and we kept telling him no, but we hadn't planned on it failing catastrophically. Since it did, he got to wear it after all. 
So we spent an afternoon in the yard, defeating the Evil Bubbles of Doom, playing with moon dough (which I recommend- it is pretty cool stuff) and general hub-bub of wild playing-with-our-friends. It was pretty awesome. And I periodically punctuated the frenzy by adding more sugar. 
We had ice cream sandwiches of different flavors (neapolitan was a favorite), candy in the piñata, and of course, cake. Andy asked for a yellow cake with chocolate icing. Nearly blew me over. He doesn't usually like chocolate. He got it, and ate it, so hey, I'm not complaining. I put the ninjas on the cake since the rest of the decor was Star Wars, with a splash of pirate tossed in. I hoped the blue marchmallow stars would be spacey enough to connect it. Who cares, it all get eaten, marshmallows being bonus. And everyone wanted a ninja. 
Andy got lots of cool stuff. He still has a couple things he didn't open, but we wore him out. He'll have fun opening them in the morning. He got plenty of awesome legos, nerf guns, Star Wars stuff, and these weird little plastic things with faces that come off. Seriously. No clue what they are called, but they sell them alongside the trading cards. He's been wanting them for weeks. So, Happy Birthday, my little man. We love you.
Thursday, May 19, 2011
Hail, hail...
You don't often see hailstones around these parts, so when we heard them come crashing into the house, we of course ran outside to see them. They were pretty good size, too- about the size of largish peas. Big enough to be impressive, nt large enough to do serious damage.
Andy thought they were delicious.
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