Weekend Endeavor: Win and Fail

Happy summer, everybody! School's out, and it is time to celebrate! We kicked off our summer season with a trip to the pool with our across-the-street-neighbor we adore, a rousing success. Then we got to stay up to watch a few extra Looney Tunes, before bouncing to bed. They were so excited, it was well after 9 before they dropped off.

Then we had Andy's game this morning. Coaching the T-Ball has been an adventure. The other team look snappy, but they are handling things in ways I just think aren't good for 6-year-olds. Encouraging base-stealing in T-Ball? Trying to play through a thunderstorm? Seriously, there are ways of teaching competition without teaching to put others down or that you're so-all-that and better than the other. Our team is learning about respect, teamwork, and having fun. We're working on hitting the ball and what the different positions are. We change up and let kids try different things, and rotate who is in the busier parts of the field so everybody gets a chance to make a play.

"You need somebody else on first base!" the volunteer-parent-umpire pulled me aside to whisper. Yes, we have a kid who is a great first base player. We decided to put him back on first base for the third inning, but let a couple other kids try it out for the first two innings. And yeah, they needed help and work and instruction and practice. So we gave them some. It isn't like we're keeping score, people!

Then there was the irate parent who had a kid who was supposed to be on the other team, but was then told they had moved him to our team, but the wasn't on our roster, he was on the other team's roster, and naturally the parents were upset. I solved that one quickly. "Thank you, Ma'm; he's now on the Red Team, and we're happy to have him. Here, dear, put on this shirt. You're number 6. Go Red!" Yes, the kid needed lots of extra help today. He actually hit the ball on his second at-bat, and was so proud. In the third inning, he made it all the way to homeplate. He was almost as proud of himself as I was of him!

Respect, Teamwork. Fun. It will take them much farther in life than "screw the other team."

Then we got Joey to Toy Story 3, and I believe my son is in love. He went with his Daddy, just him and his Daddy, and saw the movie he has been waiting for... for months. Dreams can come true, people.

Andy and I went to Walmart. I am making some trellises for my morning glories and I wanted paint. He wanted Zhu Zhu Pets. He settled for a couple new beds for the new pets Grandma just got him. We will not discuss how it might take me about 15 minute to stitch one up at home, and be a tenth of the price. No, we will not. We then went home and let him play with his Zhu Zhu Pets while I made fruit salad for a picnic-party for some folks I knew in high school.

Now, I must say the point of me going to this picnic was a little complicated. For one, I had actually been invited. I was never invited to anything when I was in high school. For two, the person who invited me was not only the person setting it up, but it is a person I would actually like to see and speak to, and there aren't many of those from high school. If you remember me mentioning it before, I hated high school. There was also a possibility of there being plenty of other kids there, since most of the folks I knew who had been invited to the party has micro-blogged about having kids.

So picked the boys up from the movies, picked up JoeyAndyDad's shiny new toy (a blue Jeep!), and then after a nice spin in the new car, we were off to the party. I am sure most of you are screaming or moaning at the screen already. How much of an idiot can I be? All that in one day? And Joey at a party full of people he doesn't know, after having been to the movies? Please don't break your computer screen bonking your head against it. They're expensive to replace.

So the picnic was Epic FAIL. Joey was hot. He was tired. They had a DJ, and the volume would be normal for most of us- we were having conversations without having to raise our voices or anything- but it was too loud for Joey. Andy made a little friends, but that was the only other child there over the age of, oh, two. I tried taking him to the far side of the house, to increased shade and muffling of the music, but it was already too late. I should have known when to pack it in. Poor JOey was completely overwhelmed, and the meltdown as dramatic as I have seen in a long time. My friend who invited me kindly helped me get Joey to the car, with our chairs and cooler, and grab Andy, and everything, to facilitate our hasty retreat. Thank you, thank you, thank you.

We stopped at Grandma's for hugs and kisses and regaining our bearings before heading home for dinner and bed. The boys played with their Zhu Zhu Pets in the nice quiet, cool basement for a bit before being dunked in the bathtub and passing out. I then proceeded to read Joey's eval report that came in the mail today. Eep.

Ups and downs. And that was just the first day of summer. Whew!

End of an Era

Joey graduated from second grade today. He will be moving on the upper elementary, that new school where the idea of teaching social skills and increasing language development seem to be alien concepts, and waxed floors trump all else. Today, Joey finished his life at the lower elementary, and we said goodbye to the team of Ms. H and Ms. Macy, who have supported him and had his back for three years.

The second graders presented what they had learned in a serious of songs, by class, to the school. Joey's class did social studies, singing about China and Egypt (Joey's half of the class did the Egypt Song, and he was so happy, he loves Egypt stuff). Then they has a slide show of their year, each class showing a few pictures and set to music; Joey had some darling pictures there. The kids got excited to see themselves on screen, and sang along with some of the songs. It was adorable.

However, you can imagine the hub-bub when the lights came on. The noise crescendoed when it was discovered one of the classes was left out, and it was announced that the missing slides would be fetched and the children all get to see them. Joey was unhappy, and came to me to sit in my lap and be hugged. The noise was too much. Ms. Macy came for him, asked if he needed a break, and he said yes; and even after more hugs, and some wistful looks in my direction, he decided he still needed to get out of the noise and be quiet for a bit. I was so proud of him when he told Ms. Macy he still needed a break, that it was too loud. As the rest of school- including his other two autistic classmates- got to their feet in an impromptu celebration dance and sing-along while waiting for the missing slides, Joey and Ms. Macy slipped quietly away from the auditorium and the din.

My baby is growing up. He's leaving second grade. He can control himself, ask for hugs and accept a break instead of melting down when overwhelmed. He can stand in front of his school and sing and sign about Egypt. He's doing so well. But he can't join into an impromptu celebration, and dance with his classmates, and squeal and wiggle with them. In the midst of such progress, there is also that reminder of the gulf that stands between my child and his ability to live in a society not made for him. Will the next set of school folks understand? How long will it take for them to understand, to pick up on the communication and cues he gives us that are not words? How much will he suffer until they do?

School's Out!

Joey's last hurrah as a second grader:

IEP Worlds: Thank You Rachel

This post should be basic reading for all educators, all congressmen, anyone who has anything to say or think or do with special needs kids, with the education system, with IEPs:

I'm Sorry, Your Child Is Stupid

The assumptions of schools and school personnel that it is acceptable to allow kids to underperform, to pigeon-hole them into programs, that they "can't make a program for just one child!" and other such nonsense must end.

NOW.

Start with the assumption that given appropriate services, all children can excel. If the child is not thriving and progressing as any non-disabled peer would do, start thinking about whether you are providing appropriate services. Does the child have access to communication skills (not just speech skills- communication skills)? Does the child have an appropriate sensory environment? Are the methods being used to teach the child appropriate?

Only when all that is exhausted should modification to education be even dreamed of. And it should take years to get there. Just as it now often takes years to get appropriate services in place, if they ever are actually put into place and practiced.

With a proactive, positive attitude, creative solutions can be easier to find and implement. Assuming competence means you are more likely to push a child to competence. It works with non-disabled people, I assure you- if you expect them to do A, B, and C, I find the vast majority of them do. This should be no surprise to formally trained educators.

So why is it? Why is discrimination against people, simply because they have challenges, considered acceptable in our society? Are we really that stupid?

Following in tiny, doomed footsteps

Andy has had a penchant for collecting ants. At the bus stop in the mornings, he has scrambled to collect ants in various containers (including a pencil eraser...) and then handing them over to me as his "ant farm" for me to watch. Every afternoon I have had to break the news that Mommy didn't keep the ants.

So today, I found an old ant farm thingee we got as a prize at the beach a few years back, put some sand in it, and shall await his return from school, triumphant. No, I am not going to order ants. I'm going to let Andy collect them and put them into the Chamber of Ant Death. See, I hate ants. I'm not into wholesale slaughter, as I know they are good for the ecosystem and stuff, but I hate ants. The least they can do to earn their keep on this planet is entertain my child.

So in the grand ant tradition, we are going to slaughter some ants today, by corking them up in a little plastic thing with some sand and seeing what happens. I plan to hide the bodies after Andy goes to bed.

Awards Day

Today is awards day at school! Joey is getting a math award this morning! We know because the school tells us with a little note when your kid is getting something so you can show up and take pictures.

Now folks, I am a great believer in awards and that not everybody should get one. An award is recognition of outstanding achievement, special effort, and serious work. If everybody gets an award, they lose their value.

Joey earns his awards, just like everybody else. When he gets the math award, its because he's done the same work and performed at the outstanding level like everybody else who gets it.

Andy, as far as I know, is not getting an award today. I have no note. I am going anyway. He may not be getting an award from the school, but if there is any little guy who has earned one, it's Andy. He has had a brilliant year of school. He's managed to stay in there all year, not one trip to Ms. T. He's made friends and been a good friend. He's gotten through the year being able to do his work, participate in his class, and enjoy his year. For my little guy, whose ADHD has gone mostly unrecognized by his school, this is huge. Absolutely stunning.

So I'm going in to cheer for both my little dudes. They've done fabulous. They are both my heros.

Too Hot Outside? Craft Time!

It was Way Too Hot today. Its only June, dangnabbit! On top of that, we had a thunderstorm about noonish, which only served to make everything steamy. Oh, and I had a flat tire. I mean, seriously flat. Like, it came off the rim flat. It was FLAT. Pancakes would do it no justice.

So while we waited for JoeyAndyDad to wave his magic wand and get the tire fixed so we could go to the pool, we got out our Handy Dandy Craft Box and pulled out... paint-it-yourself clocks. I love paint-it-yourself stuff. Hand them the thing, the paint, and stand back. Woo-hoo!

We're waiting for them to dry before putting on the final touches, but they are both very happy. And when the tire got fixed, they got to go swimming, too. Win!

Mama Bear Ain't Happy

In honor of our new school, I have added to the shop!

And Sometimes You Feel Like You're Selling Out.

Tomorrow is ESY IEP Meeting, Part Two. The purpose of this meeting is to settle what the school intends to do about five weeks of no available programming because they have to wax their floors. And waxed floors are so much more important than educating their students, you know. Must have those floors waxed. Would I be evil if every time I went into school this year, I made a snarky comment about how beautiful the floors look?

The offer is one hour a day for four days a week for two weeks at our OT, in a social skills group. At noon.

I called other parents. I tried to get things moving. We worked to get the school to do something. But the floors won.

So the question comes down to: do I take it, or leave it?

I feel Joey loses either way.

Promises promises

This morning, Joey discovered the Zhu Zhu Pet website. He shared this information with his brother, and they began plotting together, true brothers, whispering and point, squealing, more whispering and squealing...

And then Andy announced that he wanted the Zhu Zhu pet rabbit, Fluffy. And if I procured a Fluffy, I "could have all the tummy smooches you want!" Joey concurred- all the tummy I wanted, if I could lay hands on Fluffy.

They walked to the bus stop hand-in-hand planning on how they would prepare for and care for their Fluffy.

As he got on the bus, Andy commanded, "Go get Fluffy now, Mommy. Go to the store and buy him now."

Getting off the bus, Joey had a hard day and was in tears, but didn't forget to ask, "Where's Fluffy?"

I spent the morning trying to locate one, but had to order one (two, actually). Of course they want the one that's a Hallmark Exclusive, and which no Hallmark in my town has any of.

I expect to OD on tummy smooches in 2-7 days. Stay tuned.

The Utter Chaos that is T-Ball

Yes, it was my first official practice as one of the assistant coaches of T-Ball. Here is what I learned:

1. Even if one of the other coaches says they have coached multiple levels of t-ball and baseball before, that doesn't mean they have done it in the last 20 years, or remembered what kids know. Or don't know.

2. Six-year-olds who have never played baseball or T-Ball before have no idea what the field positions are. Or what a base is.

3. 11 out of 12 six-year-olds have never played baseball or T-Ball. At least, on our team that is true.

4. The 1 child who has played before still doesn't know the field positions, or what a base is.

5. 11 out of 12 six-year-olds don't own a baseball glove or hat, and therefore must borrow the coach's.

6. Even if you have no idea what a base is, or where to stand, or how to catch, or even to run around the bases, hitting the ball is fun. So as long as everyone gets to hit the ball, we're all good.

A little shine

Joey is going into third grade in the fall, and that means a new school, because our little system breaks up elementary into upper and lower. Yesterday was the Parent Orientation for the new school. Of course I went. Turned out to be something they could have emailed us, but whatever. I did get to see some folks, and I took Joey with me so he could see more of his new school.

But the best part was the slide with the mission statement (which I notice is not their official mission statement), some ramble about providing the kids the best possible education blah blah blah. And all I could think of was, "... unless we're waxing the floors that day."

And then connected that with Joey's use of the word "wax."

People looked at me funny when I started giggling, but whatever.

Because That's The Way I Roll.

I signed Andy up for T-Ball. This is very exciting, and Andy is very happy about it. When I got the phone call about the practices, it was a little odd. "You're on the Red Team," the message said. "Practices start next week. Oh, by the way, we don't have a head coach for the Red Team yet. If you know anybody who can help us out, give us a call."

Well, I thought, I don't know anything about baseball. It's a pretty popular program. One of the dads will hear that and pick it up, no problem. Besides, I'd like to be able to just sit with some of these other moms and dads and get a little taste of normalcy for a bit.

We turned up at the first practice, and Andy was happy to find he knew several of the kids (there are 30 kids, and only one is a girl). I knew some of the moms, and even a couple of the dads. I got to talking to one older gentleman, a granddad; Andy didn't know the boy, but soon made buddies with him. We all stood about chatting, waiting for the coaches to show up, and realizing there were two teams here- Gray and Red. Some of the moms were in book clubs, chatting about the books they were reading. Chatter of TV shows I have never even heard of. Some talk of who would be "suckered" into being the "team mom" for each team (and thus organize post-game snacks each week). Guess where that conversation was heading. After all, these were all busy people. They had jobs and kids and bookclubs to do.

When the coach (note the singular) showed up, we all gathered in to hear what was up: the program had called him pleading for him to please coach a team, and then they decided he would coach both teams, but he needed assistant coaches. He wanted two from each team, and he had two from the Gray team already signed up. One was a young dad who seemed to know a good deal about baseball, and a mom who was already wearing a gray shirt and a baseball cap. Could he get two volunteers from the Red team? Because if he couldn't, the program would have to be cancelled, and there would be no season.

There was a moment of deafening silence. Eyes found the ground, the kids, the cars, the sky. Just a moment, when things became very, very clear. Given the choice between volunteering or disappointing their kids by canceling the program, crickets were starting to chirp.

No, I didn't speak up first. Remember, I know nothing about baseball. Or coaching. And I am very, very fat. Did I mention I am not an athlete in any way, shape, or form?

Granddad spoke up first. But I knew from that moment of silence that without another voice, Andy wouldn't be able to play, and that wasn't the right choice. These kids should be able to play. It wasn't their fault that coaches weren't lined up for them. And it's T-Ball, how hard can it be?

So you can just call me Coach Andymom. Granddad and I looked at each other and laughed. In a sea of parents, we knew it was the right thing to do. But I know it's going to be a fabulous experience, because Granddad waved me on to the field with him saying, "Well, they're ours, now. Let' show all these folks what fun really is!"

They all obliged by standing outside the field fence chatting together and reading their books while we had a blast playing with their kids. The Red Team may not win many games, but we're going to have a lot of fun playing them.

Wordless Wednesday: Mommy, Take My Picture!

My nose knows

I think my body is trying to tell me something.

I have been really sensitive to smells- like, the way I was when I was young, or pregnant. Strange things bother me. I can't take the smell of potato chips or Cheetos. I took the boys for half-price Happy Meals, and gagged as I passed the food back, the smell of the fried food! Argh! Two weeks ago, neither of these scents would bother me. Today? Gag. Chocolate hasn't turned me on, either, lately.

Fortunately, staying away from chips and bad junk food isn't much of a loss. But please, dear nose, don't take away my love of gingerbread or grandmother's rose. Leave me my honeysuckle. Don't mess with my sandalwood soap. Thanks.

All for one, and one for all

Trying to find programs and settings that are appropriate for Joey can be very tricky. He is something of the poster child for "if you've seen one child with autism, you've seen one child with autism." His use of language is unique, yet he does speak and communicate. He has the social disability of autism, but craves being social (That autistic kid who stares out the window? That's not my kid). He can handle a variety of settings and an elaborate schedule, have 15 different teachers and four whole different classes of schoolmates, but he has to know exactly when he will go to which place and what to expect there. In trying to piece together placements, I get a lot of comments to the tune of, "Oh, let's put Joey here, he'll be such a big help to [someone else's kid]!"

Riding out to Grandma's, the boys are already hot and tired, and its not even 10 am. Andy is screaming for silence. Joey is chanting, but there are no words there, no soundification, just odd tones and squeals. It isn't his usual stim. The more Andy squeals for quiet, the louder Joey chants.

"What's up, Buddy?" I call back, a cue to them that Mommy has had enough of the noise and bickering.
"I wan Doey t'stop dat NOISE!" Andy complains.
"I'm being Ethan*!" Joey giggles, and goes into another round of the chant. I frown. Ethan is a child in Joey's class, and it hits me how exactly Joey is copying the non-verbal child. I know Joey gets upset when he knows he is being mocked; but this isn't exactly mocking, it is taking on another's oral stim, though he has taken it on partly because the sounds amuse him.

Joey helps Ethan. He is a good model for classroom behavior, for oral communication, for regulation, compared to where Ethan is in his development. What does Ethan do for Joey?

"We need to be respectful of our classmates and friends, even when they aren't here," I remind him. "Please find something else to say." But there are no current chants to redirect him, and he soon lapses into Ethan Sounds. He's hot, he's tired, the sounds are amusing and comforting, and they vibrate his mouth in a way I know he particularly likes.

Last year, there was a parent who complained about Joey being in a mainstream class with their child. They were unaware that I was the parent of "that child", standing next to them as they demanded what my child did for theirs. If teaching their child acceptance and patience wasn't enough for them, perhaps Joey also taught their child math? After all, Joey's a shining star in the subject. But what do other kids teach other kids? Social skills? Language use? The latest cultural trends? Can't my child have something different to offer? Another way of thinking about the world and expressing those thoughts, maybe?

Yet we face the issue of Ethan Sounds, and often the behaviors of other children. Just like normal kids who pick up bad habits and bad words from school, Joey picks up on what his classmates do. Only to be honest, if a regular kid grows up to say "damn!" (or worse), they won't become a social pariah, even if we find the word crude. But a child who picks up biting, or soundification, or a plethora of ritualized and repetitive behaviors to then ritualize and repeat, will find themselves in a difficult position to find employment. When a non-autistic child picks up a poor adult behavior, it blends in with the crowd of poor adult behaviors that have become social norms. When an autistic child picks up on poor adult behavior, it appears to be magnified and make them stand out all the more.

Yet we must weave together strengths and weaknesses, create a fabric of services and educational models that can hold everyone, and act as a safety net when they stumble. Everyone has something to share. That is what inclusion is all about.


*Name changed.

Wordless Wednesday: Zoo

Out in the Challenger Field

I got to stand out in the field and be Joey's buddy on Saturday for his baseball game. Apparently the Courtland baseball season is coming to a close (Courtland is first seeded!), so the volunteers are now thin.

He had a nice game, even hitting a ball to the outfield! He's becoming one of the big hitters for his team! He's also running better. It is amazing what a little focus on a skill can do for Joey, and a little motivation. He is losing that toddler trot and even leans forward a little to run to a base.

It is striking to see all the Challenger kids working so hard, even as they are having a good time. I suppose all play and activity is really "therapy" for everyone, but most folks don't call it that, or even think about it. Joey gets upset when he doesn't get to field a ball, but he's still learning to pay attention to the game enough to know when it is coming- before one of the other kids gets the ball. We have a child who goes around the bases in a walker, their dad cheering them on every step of the way. We have a child learning to pitch, working on coordination. We have a child in a wheelchair who likes to play shortstop, and lets folks know it. We have a child who can spin the bat around their hand like a fancy sword move. We have a child who is a runner, and just being out there playing a game is a challenge. We have kids who have been doing this for four years, and some, like us, who are new. They are, each and every one, absolutely amazing. Maybe I ought to write a play.

Joey and I worked on playing second base, but that wasn't really good for him, not enough balls coming his way to hold his interest. JoeyAndyDad had him more in the infield later on, and that was better in some ways- more balls hit his way- and not in others- more kids up there trying to field the ball and crowding Joey out. He also doesn't like getting tagged (he knows from school that when he's tagged, he's supposed to be out).

We still encourage him to steal home. He's our little hero.

The New School Waltz

Our little school system is set up with a split upper and lower elementary. What this means for most kids is that the older elementary kids- third, fourth, and fifth graders- are not housed with the wee ones (K-2), so that programming and instruction can be more focused on the needs of the two age groups. What it means for us is we have to start from scratch trying to claw for the services Joey needs, with a whole new group of people with a whole new attitude towards special education, special ed students, and what services should entail.

And so far, I am not impressed.

We had a separate meeting for ESY, partly because there was this huge gap called August, five weeks of black hole in service that would be a disaster for Joey. And what I learned was that our new crew believes my son's education is less important that waxing the floors. Really.

Not. Good.

I've listened to these folks at the Sped Parent meetings. The impression I get there is no better. There is a sense of dividing and isolating cases instead of a broader view of service in which the children's services and strengths are interconnected and interwoven for an effective educational netting- or better yet, fabric. You can't have social skills for one. The problem is I know they have at least three, likely more. Can't do this for one, can't do that for one. If I hear it again, I'm going to stand up and say, "You have one that needs this. Not wants. Needs. Figure it out." I'm starting to look up the numbers for lawyers again. I suspect I will need one in the next, oh, three years. And it is likely to be sooner rather than later. Better to go ahead and put in a retainer, rather than have to come up with one in a super-hurry.

As I left the meeting, the new administrator made the usual "Everything is going to be fine" speech. I think she meant well. However, if she thinks she's building any trust here, she is sadly mistaken. When your concern is about having to have a whole month to strip the floors, rather than being concerned about the needs of your students- even just one student, if you must- there is seriously nothing trustworthy there.

I'm going to have to start seeing some serious effort and creative support soon if we're to get any trust going on this side. And folks, it's looking like its going to be a long three years ahead.

Happy Birthday, Andy!

When I was one,
I just begun.


When I was two,
I was nearly new.


When I was three,
I was hardly me.


When I was four,
I was not much more.


When I was five,
I was just alive.


But now I'm six,
I'm as clever as clever.

So I think I will be six now,
forever and ever!

-A.A.Milne