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!

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?

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.

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!

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.

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.

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.

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.

New Friends Around the Corner

We have made an auspicious discovery- a couple of very nice kids we often see at the park, and who was on Andy's soccer team, live around the corner. We haven't known this before because the kids are homeschooled, so we didn't see them at the bus stop or at school activities; we knew they lived in town, but not so close.

We discovered this yesterday when the boy (who is about Andy's age), was coming up the street. Andy ran to say hello, and M announced, "T (his sister) is roaming free!" We agreed to help look for her, as we know the panic of not knowing where your child is. The result was I had Andy going one direction, Joey going the other, and only one of me. In the end, we all ended up at M's house, and T was found safely fast asleep on a couch, missed because she was next to a pile of folded afghans.

Andy is ecstatic. So is Joey, for these kids actively try to play with him, and they like to hug. Also, there is a baby, To, and Joey has been showing him things and "taking care of him."

We had another playdate today, It was supposed to be here. It was like a tornado was raging in the house. It was fabulous, if breathtaking. But I learned a lot.

For one, if I forget to lock the front door, trouble ensues. These kids don't quite understand, and run freely in and out of doors, and have no clue why that might be a problem. As Joey got tired and excited, he got touchy- and bolted. They figured out he was running and I was trying to catch him, and handled that pretty well. After all, To likes to run, too.

Two, Joey bolted straight for M and T's house. I gave them our phone info in case it happens again. They were very kind, and the playdate shifted to their house. T's room is all in orange, and Joey liked that a lot. Its also someplace new to explore, which can be very exciting.

New friends are always a delight, and I hope we get to play together alot. The mom is awesome, and has lots of interesting ideas about children and learning and playing; I may not agree with everything, but it is always interesting to hear a new perspective. I am thinking we might have a good party in the making, as there are several other kids on the street we know from school and whatnot now. Besides, anybody that shows this much patience and acceptance of Joey has turned out to be totally wonderful. I'll keep you posted!

Missed Blogiversary

Oopsie, I forgot to toot the horn on the 9th for my blogiversary. And it was a big one- five years!

Five years ago, I was a mom getting bearing in a sea of anxiety, misinformation, discrimination, and panic. I saw others floundering all around me. I decided the information I had might help somebody else who was feeling lost, alone, scared, angry, disappointed, and floundering. I picked up my blog account from a blog I didn't make a go of, and started writing.

It was cheaper than therapy.

Joey was four years old. He was still in preschool. He had been going to preschool for two years. He was still mostly non-verbal- every word, every sentence was celebrated here, with you. Our school situation was in IEP crisis mode. We still get that. Our lives were dominated by Oobi, Pinky Dinky Doo, Little Bear, Potty Power, and yellow school buses. Meltdowns were a daily thing, so much so that they went unblogged.

The contrast in those early posts between Joey and Andy was so marked- Andy could talk, Andy could interact, Andy could point. He was only two years old.


It's been a long road, and we look forward to the overgrown thicket of a road ahead. Hopefully we can improve on the pruning of the folks who blazed the trail before us. My boys are the most awesome people, and I just want the whole world to be warmed a little from their sunshine, especially on the cold and raw days that so many of us struggle through.

Thank you for all the positive support and comments that have kept us snuggly on our bitter days. Feel free to make yourself at home on the comfy couches of this corner of the internet!

House Rules

So we're working on a new system for helping the boys understand expectations: pick up the toys, don't kill each other, that sort of thing. So we took them to Friendly's, sat down with french fries and paper, and hashed out what we think is fair and helpful. We wanted no more than ten rules, and if they get through the day obeying those rules, they get a check or a sticker or something. And in the end, if they earn enough checks or stickers or something, they get a Prize Box. Woo-hoo!

Here is what we've come up with:

Make the bed every morning.
Except for apples and water, ask for food or snacks.
Don't do anything that makes anyone else scream or say "ouch".
The bathroom floor must be clear and dry after any bath.
Keep hands and feet to yourself.
Speak respectfully to everyone, using only respectful words.
Do what is asked, right away, and with a smile.
Treat others as you wish to be treated.
Homework first.
All toys must be taken upstairs and put away at bedtime.


This is kind of a first draft, but not bad for being discussed over ice cream.

The lady at the next table actually stood up as they were leaving and kindly expressed approval of our boys, of our parenting, and how we were discussing the matter. How's that for awesome?

Rampion, Rampion...

For our first serious venture into gardening, we decided on lettuce, turnips, and radishes. The lettuce is ready, and the radishes are ready. They are the most beautiful radishes I have seen ever, and big ones, too. I'm impressed. That's what happens when you fill your old sandbox with miraclegro potting soil and plant radish seeds in it, I guess. We have a serious bumper crop of big, beautiful, red radishes.

Unfortunately, the boys have decided they don't like radishes. (The lettuce is still loved by Andy, but if you want some, come help yourself.) So... what does one do with a bumper crop of radishes? I am seriously considering learning to carve those cute little flower garnisher thingees. I have plenty to practice on.

A Bit Of Spring

Some Advice To Parents In Making the World A Little Nicer

Based on observations and situations from this past week.

1. Teach respect in all situations.

If you teach your kid it is OK to rejoice in an enemy's death, you'd be surprised how quickly that translates to spitefulness and rejoicing in victory over anyone they decide is even mildly annoying. Treating others the way you would want to be treated is a basic lesson in respectful values. If you don't want anyone to dance on your grave, don't have a party on someone else's. I don't care what they did. Don't stoop to that level.

2. Don't use the word "retard."

Or "nigger". Or "spic." Or "fag." Or any other word intended as immanently offensive to another group or person. It isn't funny, it isn't casual, and I do not care who you are or how you think you are using the word. When you teach kids that "retard" is OK to use when you think something is dumb, stupid, ugly, nasty, etc. then you should not be surprised when they start treating people they regard as "retarded" or who act differently as if those people are dumb, stupid, ugly, nasty, etc. If you use these words in any way, don't be surprised when they start bullying kids they view as not even human beings- because that is what you taught them- with any of these ugly words. With rights comes responsibility, and we in this country have the awesome and wonderful right of free speech- and the awesome responsibility that comes with it.

3. Be aware of your child.

Home is not the only place kids pick up bullying and nastiness. Their own insecurity makes them sensitive to language and behavior of others. Pay attention. If another parent approaches you with an issue, address it immediately. Be sure your child understands what is acceptable and what is not. Would your child want to be ignored on the playground? Would they want to be called an ugly word? Would they want their pretend play laughed at and scorned by others? Would they want others throwing sticks or mulch at them? No? Then they shouldn't be doing these things. Would they want others to help push them on the swing? Would they want other kids to invite them to play, and explain the game to them? Would they want others to say hello to them? Would they like it if others shared their toys with them? Yes? Then they should be doing these things. Kids need help negotiating this, because they are developmentally wired to be selfish as natural self-preservation. Reminding them to treat others as they wish to be treated is an excellent way of helping them understand that other people have feelings and peers make potential friends.

4. Be aware of other children.

Is your child being bullied, picked on, teased, ignored? We can't control what others do, but we can control ourselves. Teaching your child appropriate responses to unsocial behavior and language helps that child understand how to show respect in all situations- including unfortunate ones. Steer clear of other children who are mean to you. Recognize when they are being mean and let adults know there is a problem. KNow who your friends really are. Peers have a potential of being friends, but not all of them are friendly. I have a Plan B whenever we go to the park, because there are some families that simply do not get the idea of treating other people with respect, and think it is funny or "just being boys" when their child is mean and ugly to other children. When I see them coming, we just leave.


What would the world be like if we showed respect to other people, no matter what?

HAPPY BIRTHDAY, MOMMY!!!

Happy happy birthday to the most awesomest Mommy that ever ever was, the coolest, most wonderful Grandma ever, and one of the most fantastic ladies you'll ever meet (and probably the nicest).

I love you, Mom. Thank you for being supportive, understanding, caring, and snuggly.




I love you 44.

A Great Challenger's Day

Joey was a totally awesome player, and Andy was a totally awesome buddy, and it was a totally awesome day.

That's your cue

Empathy. It is one of the markers people use in judging others. Does this person empathize with me? And how do I know?

Did you know that those cues for knowing how others feel, and whether they are empathizing with you or not, is culturally and socially determined? It is not totally universal? That the way we express emotion- or fail to express it- is also cultural?

Joey's teachers are very concerned right now about his ability to empathize. The reason is that when he is reading a book or looking at a picture, he cannot seem to communicate how the character in the book or picture feels. When asked, he often tells the teacher how he himself feels, regardless of the story or the picture.

For example, Joey was reading about Nathan Hale, and they got to the end of the story- you know, when he is hanged by the British. They story was pretty matter-of-fact: he is taken to the gallows, regrets having one life to give for his country, and is hanged. There was an accompanying picture showing him with the rope around his neck. The teacher asked him how Nathan Hale felt.

Joey said he felt happy.

According to the teacher, this was the wrong answer, and that Joey said "happy" because Joey was happy, because reading was almost over, and so was the book.

I have another theory.

See, the problem is that Joey not only has empathy- he understands how people around him are feeling, and understands they might be feeling something different from what he himself is feeling- he also has the next step, compassion. When someone else is hurting, Joey gets upset. With a scraped knee, he knows what to do: go give the person a hug and ask if they are ok, and say comforting things. If that hurt is something more subtle, he has no idea what to do. The teacher is upset- I don't know why- what do I do? So his reaction can be unexpected.

How can he have empathy for people around him, yet seem unable to communicate empathy towards characters in books and pictures?

Well, how do we tell how a character is feeling? Perhaps we think about the details of the story, what we have read, and know that those things would make us feel a certain way if they happened to us. We look at the face of the person in the picture, or the way they are shown holding their bodies. We pick up on cues we have been taught to look for- scrunching eyebrows, smiles or grimaces, a look in the eyes.

We know many autistic people have trouble picking up on these cues. So how can they have empathy?

Did you see how those two sentences didn't go together? What does "pick up on cues" have logically to do with "having empathy"? Logically, there is a problem there: picking up on cues does not cause you to have empathy or not. They are two separate things entirely.

Joey is picking up on cues of some kind- he knows how people around him are feeling. Sometimes he is even hyper-sensitive to how others are feeling, and it overwhelms him- especially if he does not know how to react to those emotions or those people. My theory is that he is picking up on different cues than the ones we expect: ones that don't translate well into words and pictures. A still picture doesn't have a cue he uses to determine how the person is feeling. A simple set of sequential facts to relate it back to an experience he has never had (Joey has never been executed for being a spy, for example) is meaningless to him in determining how another is feeling.

But he has just been asked a question about feelings, and he knows- he has been hard-trained- that he must answer. So he gives the questioner an answer- the one that pops into his head as ready and relevant would be his own feeling.

Though with Nathan Hale, I am a little dubious. After all, the man just said he regretted he had only one life to give for his country- the logical leap that he might be happy about being executed is not a terribly gaping one for a third grader to make. I've had college students do worse.

Reading

While we are in the confessional here, I have a real shocker for people who know me:

I don't like to read.

I far prefer doing other things.

Reading is a tool- and excellent for gaining new information about all sorts of topics, for discovering new stories and new lines of thought. But I don't like it. That may seem really strange when I spend my life in academia, where reading is an absolute necessity. It probably seems strange to people who know that when I am disturbed in the middle of a book, I can be quite snappish and grumpy. I was up until 2 this morning reading a story I love.

Reading is an overwhelming experience. The pull of words and scenes and characters becomes a sensory overload. Tearing away from a book to come back to this world is like being shoved from a movie theater into the bright sunlight, when you are still processing and thinking about the movie. Ouch.

If they published good, interesting books as audio books- not just junk fiction and "nonfiction"- I would love it. I am very much an auditory or aural learner, not really a visual one. But from what I have read about auditory learners, I don't fit those descriptions. I keep reading (I didn't say I don't read, I said I don't care for it and I would prefer to do other things) that auditory learners think in words, are bad at math and good at foreign languages, and have trouble visualizing things. I probably do think in words, but creating pictures is not a problem, either. I stink at foreign language, but rock at math. I remember things better if I hear them rather than having to deal with words. Letters and words can get very jumbled on a page and overwhelming, and I have to stop and read it again, making it take longer.

I purchased a copy of Ivanhoe in mp3 because I had always wanted to read it. It was like having a whole new world, to be able to listen to the book instead of fighting with print. And besides, have you ever read Ivanhoe? Awesome.

I have been thinking about this more because Joey is so very visual, and yet seems to dislike reading. He sometimes says it hurts. I wonder if he means it is overwhelming. Perhaps he becomes engulfed as I do, though I have never seen him be engulfed in a book exactly in the way I get engulfed in a book and can't stop until I reach the end (even in books I have read many times before- did I mention I was up until 2 am?) Perhaps the letters jumble up, or make other kinds of patterns for him, and remembering they are words is something that requires more energy for him. Perhaps he is expected to read too quickly, and needs a lot more processing time to really understand what he is reading, just like me. And perhaps it is a totally different issue than anything I can right now picture or understand.

Trying to get Joey to understand that reading is a tool that provides him with information is has been a challenge. I think once he really understands what words and reading can do for him, he'll be happier. I wish I knew what the obstacle was, so i could help him get through it to the other side.

P.S.- Joey reads beautifully, when you can get him to do it. So it isn't an issue of ability.

Confession

I wish I could never hear these words again:

"I'm a bad boy."
"I'm an ugly boy."
"I'm so stupid!"
"You don't love me."
"Andy just hates me."
"I will never..."
"I will hit you SO HARD!"
"Just smack my butt. Smack it now."
"You hate me! Why do you hate me?"
"Just kill me now. Kill me."
"I want to die."
"Everybody hates me! Nobody likes me!"


That is all.

Handsome boys

Echo... echo... echo...

Andy is starting to do an odd thing, and I was wondering if anyone else has seen or heard this in the elementary school set.

He echoes the last one or two words he says under his breath.

So a conversation with him goes kind of like this (regular type in regular voice, italics whispered):

Hi, Andy, how was school today?
Good. Good.
What did you play with Kylie today at recess?
Oh! The blue thing was big and we slashed it and I won, because red is for bad guys. Bad guys.
Can you put these ninjas away for me? They are all over the floor and I'm worried someone might step on them.
I want to play Wii! I have homework (starts picking up the ninja figures). is there soccer tonight? Is Joey home yet? Home yet.
No, Joey isn't home yet. Let's see what your homework is. Where is your bag?
I don't know. Know.


You get the picture. Sometimes it isn't every sentence or conversation turn, but usually it is. Anybody else have a little one doing this? Especially one who isn't autistic?

A Glimpse of an Excellent Day

Yay, Team Stimey!!!

Joining Team Stimey!

Yay! Stimey is coming today! (think of me bouncing about like Daffy Duck on a sugar high.)

The fun of having friends come see ou is they find out all sorts of awesome cool things about you. Today, Stimey will learn:

1. When I say "my house is a disaster" what I mean is "Please don't call the health department on me. Pretty, pretty please with a cherry on top."

2. I can't hard boil eggs. But she may not find out that until she tries to eat one of the eggs we dye.

3. Joey is having a semi-good week. Which means he is having a semi-not-good week.

4. I bought her kids guns. But I still like her. She might not feel the same, though.

Here's to a great day! The plan is Ferry Farm, Lunch, Bug Box, and then Egg Dyeing, though who knows what adventures actually await!

Quiet week.

Its Spring Break for the boys here. I may not have a lot of posting time, but I should have some good stories when I emerge from it next week.

Autism Myths I Get Tired of Hearing

Ah, April. The month of Awareness. Lots more articles, shows, ads, and information bouncing around about autism, and not all of it accurate or useful. There are a few phrases and myths I just get sick of. And since I am grumpy this morning, here they are.

1. Autistic people do not feel empathy or sympathy. Horsehockeys. There is a difference between being able to empathize and being able to do something about that empathy, or being able to communicate empathy. Joey knows how people are feeling around him- often acutely. Being able to react appropriately is more of a problem. If someone is hurt on the playground, he is quick with a hug and kind word. When people around him are nervous and fretful, he gets anxious, too. When folks are sad, he tries to help make them feel better.

2. Autistic people are trapped in another world. Joey's problem is he is trapped in this one, where people seem to lack empathy for him. Who is the autistic one, again?

But seriously, communication disabilities aren't about being locked up somewhere else. They are difficulties in being able to communicate what you are thinking and feeling to other people. That's not being "locked up" somewhere else.

I have often seen it bandied about medical blogs that people would rather die than live with a communication disability. The idea that a person who can only move their eyes or who can't communicate should be abandoned for dead is horrifying to me- can you imagine being in a room and hearing, "Well, she can't communicate, so let's turn off this respirator..." and you want to scream like Horton's Whos, "I am here! I am here!" and your life being so little valued simply because you cannot speak? Are you "locked in another world"? Or are you trapped in this one? What if someone took the time to teach you another way to communicate, work with you to move your eyes, your hands, anything at all? Would you still want that respirator turned off? Or have them stop all food and water and just "let you die"? How scared and frustrated would you be?

How many kids live that way every day, because people who are not autistic, who are supposed to be special needs professionals, have no empathy for them? And then they wonder why the kid melts down?

3. Autistic people are violent, or prone to violence. Prove it. Show me the studies. Autistic people are likely more prone to frustration and acting out because of communication difficulties, but "Acting out" and "prone to violence" are two very different things. They are likely more prone to depression because of a lack of understanding, acceptance, and empathy towards them, but "depressed" and "violent" are two different things. Frustration and depression can result in increased aggression, but not just in autistic people. See #2.



Seriously, people, let's look for some real awareness. When going about your everyday lives, try to empathize with and respect others instead of judging them. Try to help rather than scorn. Know that we all have our own challenges and our own strengths, and try to share your talents and meet your challenges, will helping others do the same. We are all unique.

Thank goodness.

Happy Birthday, Little Man

Where has the time gone?

Last Day of Being Eight

Joey will be nine years old tomorrow.



Today, he got to be the catcher for his baseball team. He was awesome. But that is no surprise to any of you, I bet.

Tonight, I try to make Angry Birds into a cake and birthday decorations.

Happy Birthday, Little Buddha Buddy.

Bullying, Part II

So Joey has stood up and taken his stand.

Now it's Andy's turn.

We've been having trouble with Little Annoying Dude (LAD) for a while now. He was in Andy's class last year, and proved himself Totally Annoying to Andy. He delighted in calling Andy names that would seem innocuous to adults (Andy Apple was a favorite), but drove Andy nutso-bonko. There were other small issues, little annoyances that suggested the child simply doesn't like Andy, finds Andy's reactions funny, and isn't very nice. Once of LAD's favorite modus operandi was to act really nice to Andy for a while, and play with him, and then start in with the annoying bits.

We spent some time with Andy talking about staying away from LAD, even when LAD was pretending to be nice. Find other people to play with, tell him that he's being annoying and mean, reporting to a teacher, that sort of thing. Things seemed to be going along as normal, everyday, playground antics. You know, kids, who don't always get along sort of thing. No big deal, right?

Welcome to this year.

Andy has been doing the "I don't want to go to school" dance for a while now, with the excuse of "there's too much work!" This sounded odd to me, and he was resistant to our advice that learning was supposed to be fun and makes you smart. But this week, the tune changed; instead of being too much work, it was too much LAD.

LAD is no longer in our class, but we still see him in the cafeteria and on the bus. Far more concerning is the widening of the stakes: LAD has recruited his little friends into the game. Some of those friends are in Andy's class. And on Andy's bus. And in the cafeteria. And on the playground. And...

Its one thing when you have one kid who is annoying you. It is a whole new problem when you have a whole group of kids who pop up throughout your day pulling the same annoyances, playing with you until LAD appears and then they turn away from you, poke you in the back of the head with pencils, I could go on.

We took several steps in quick succession. We made sure Andy told the child to stop. Andy felt if he went to the bus driver, the group would make it worse, so I stepped up onto the bus and said something myself. I then emailed Andy's teacher to warn her of the issue, as well as the guidance department.

And Andy had another hard day. So the next morning, we "missed" the bus, and I marched around to the office to write a note to the guidance counselor who had worked with Andy before in all his testing. Sometimes emails end up in the spam filter here- but notes go directly into the mailbox. I made the note fairly detailed- more than I have given here- and asked for help for Andy. I was unhappy that he was being bullied in this way, and that it had gotten worse. I was unhappy that he felt he could not go to an adult at school for fear of reprisals. I was unhappy that this had apparently gone on for a fairly long time with no one at school noticing.

Bullying is hard for adult radar to pick up. Innocuous names get shrugged off. If children suddenly change playmates in mid-recess, it is shrugged off as a new game. A child who might cry out in annoyance is told to hush and not interrupt. It is easy to miss the signs, to ignore them, to sweep them aside. All of these signs point to a very serious situation for the child being bullied and trying to get through their day.

Within an hour, I had an email from the guidance counselor. When I called another hour later, she had already pulled in the teachers- for both kids- and started identifying the other children involved, and was about to start pulling them in individually for a discussion of the situation. She was planning to get on the bus and make sure the kids were broken up. The cafeteria was re-arranged to keep LAD away from Andy. As our counselor said, "This is bullying. We don't play this. If you start seeing these signs again, don't wait. Call guidance in immediately. This is exactly what guidance is paid to handle."

We'll see how Andy's day goes on Monday.

Standing Up and Saying No

We've been having some issues with Joey this year involving new interest in showing affection- trying to kiss and hug his friends and pat them on the behind (who are, incidentally, mostly girls), etc. We have had a talk about what asking people to touch or kiss or hug them, and that girls have to say "no" to kisses in school, and what is appropriate in school versus what is appropriate at home, that sort of thing. We also talked about patting someone on the bottom or being kissed in public being possibly embarrassing to the other person. Things seemed to be going well on this front.

However, one of Joey's classmates apparently thought it was funny that Joey liked to pat people on the bottom, and worked really hard to get Joey to to this to some poor young lady today. Naturally, the girl was upset, and the whole incident was reported, and we got a call from our Vice Principal...

... to tell us how proud she is of Joey, because when this child tried to get him to smack the girl's bottom, Joey said, "No. That is not appropriate!" and refused to do it.

Joey's dignity and courage: 1.
Bully: 0.

Doomsday Averted (We Hope)

Well, the meeting wasn't nearly as horrible as we planned for, and we think... we think... we got the bottom line straightened out. We're futzing with the different environment possibilities for Joey to try to find ways to keep him small groups with few distractions and as much in the "main stream" as possible (where his academic needs can be better met). These changes require that he have an aide, the kind that knows when to stay in the background, and when to intervene: a "lifeguard." Understanding what we wanted was easy. Figuring out how to word it in an IEP was not.

The interesting resistance we got was about the use of sign language for visual cues. There seemed to be resistance to the use of signs from the speech therapist (how odd is that?) and resistance because "combining signs and picture cues might be confusing." We thought that odd, too. Joey is a smart little guy. He knows what he can access and use at a given moment, and he does very well with signs. It helps his speech and auditory comprehension immensely. Why would adding in using pictures for certain choices (such as what type of activity he wants for a break or what object he needs for sensory issues) to using signs as prompt (such as "listen", "wait", "ready?" etc) be confusing?

Whatever.

We are currently going over the IEP, because it is a lot of information and a lot of goals and a lot that could be misinterpreted by the next team, and we don't know yet who will be the teachers on that team. These teachers have had all year with him, and when they have a goal, they know what they "mean." But is this written to make it clear to the next teacher? Not sure.

Ah, IEP season. Just what everyone needs to lift their blood pressure and get the cobwebs swept from the mind.

IEP Weekend

This is it. IEP weekend. Our IEP is Monday. I need to run to the store and stock up on vodka and peach brandy. A little Grand Marnier would not be out of line. And plenty of wine.

It is going to be a long weekend.

The facts come to this: Joey's last summer program was a disaster. His year has been a regressive disaster. My style of working with the school and trying to be flexible while getting Joey the support he needs has been a complete and utter failure. We were promised a resource room and now we are learning that it is not coming, that they are going to jerry-rig something that looks like it is not only going to not meet Joey's needs, and not get the much-needed resource room in place, but may even be detrimental to several other students in the system.

Disaster.

So while I am here putting together my power point and going through the failed IEP and figuring out how to get Joey a proper aide and all the ugly, nasty, wretched misery of what will likely be a highly adversarial, nasty, ugly IEP meeting, know I raise a glass to all of you, who know exactly what I mean, how little sleep I am destined for, and how many tears are going to be shed the next few days.

Good health and good things to each and every one of you. Keep the faith. Light it up blue.

My Proud Little Patriot

In super good news today, Andy got the Proud Patriot Award for his class for March. This is a pat on the back for kids who have been very well behaved and shown "good citizenship." His favorite girl friend also won it this month. They came bouncing in together. It was adorable. Her mom commented to me that they would someday have beautiful kids together. Hey, they've been best buds since they were 3. Who knows?

Eval Meetings Just Suck

How did the eval meeting go?

I learned nothing new.

I still have no idea what Joey can do, only how he compares to his peers on evals.

The good news is that he mostly tests at an average level for his age and grade.

The bad news is that these tests are administered and normed to non-disabled peers, so we have no idea how far above his grade level he can perform if given appropriate accommodations.

I have no idea what we are going to do with this information.


The other good news we got was that Mrs. H, our awesome teacher from the last school, is going to be split between the upper and lower elementary next year, so she will be working with Joey again. The bad news there is that they were supposed to hire somebody to be full-time in this school as a resource, and now they are splitting the resource between two schools, so that no one has Mrs. H to support them the whole day, as may be needed. But we'll have Mrs. H at our IEP on Monday, which rocks.

So, there was good, bad, ugly, and just useless. I hate eval meetings.

The Big Story of Angry Birds, by Joey

I got this from Joey's teacher this morning. Click on it. It is worth seeing.



Translation:
Reading log account
The Big Story of Angry Birds (Rovio)

1. The Pigs stole the birds' eggs without asking permission. And they started to get angry. The Yellow Bird got angrier then the blue one. The Red Bird got angrier than the Yellow Bird.
2. They want to get the eggs! (everyone) The Birds have got to trick the Pigs! The Mighty Eagle was there to save the day from the Pigs! The Birds don't want to get hurt!
3. The Next Morning the Pigs Asked permission to get one egg. And the birds said "Yes, you may have ONE egg.
THE END

Coming Soon: Re-Eval Meeting

When we had our last school meeting, we all noticed that Joey's evals were all woefully out of date, or oddly inaccurate. So we ordered a bunch of testing done, and on Wednesday, we get to look over what Joey looks like on paper.

In many ways, I love evals. They give me a little snapshot of what Joey is doing, what he isn't doing, hat he can do, and what he won't do. It also tells me a lot about the folks evaluating him, as they interpret what they see (and don't see), and how numbers on a paper relate to real actions and skills. Since Joey has so many splinter skills, it can tell me a lot when people act surprised, or talk about the problems of the testing tool, or what they think ought to be done based on the numbers. Some folks are brilliant evaluators. Some are mediocre. Some are idiots.

In many ways, I hate evals. To me, Joey is so brilliant, so creative and intelligent, so hard-working and really pitching, that seeing what that means on paper can be startlingly depressing. When you see how far he's come, and how hard he's fought to get there, to see those low percentiles and scores really takes the wind out of you. Oh, right, he's still disabled. But wow, this disabled? Really? And when I see how many kids are in worse shape than Joey, I wonder what their evals look like. And how their parents feel at these meetings. I get the feeling it ain't pretty.

I worry when I can be reading a story and have Joey just stand up and walk away, as if I wasn't even there. Andy asks questions, wants to look at the pictures, wants to talk about what might happen or what he knows is coming up in his favorites. Sometimes I think Joey is listening, but then he abruptly leaves. Or I think he's busy wiggling, and he comes back with something parroted from the book (so at least he's hearing me!) He has a lot of trouble remember what happens in a story from page to page. I think when I write my Joey Story, I am going to put him in it (to give it appeal) and keep it on a single spread (so we don't have to turn the pages).

I worry when he can't find an object that is right in front of him, or when he can't hand me something I am pointing to. Joint attention remains such a challenge for him. Following instructions in a set sequence is so frustrating. Using a button is still impossible. He's eight years old, and can't tie his shoes or button a pair of jeans. He can't follow dynamic pretend play. He can't maintain a conversation. Answering questions is still a challenge. Communicating events in his day is a distant dream for us.

What will the numbers say? Will they reflect his abilities and disabilities? Or even worse, will they not reflect his abilities and disabilities? How does the Joey on Paper relate to the Joey who is trying to survive school?