Joining Camp Stimey in Jamestowne

So the gracious Stimey came and picked up the JoeyAndy Clan, and we were off to Jamestowne! Woo-hoo!

We picked the hottest day of the summer, of course. And Stimey lives over an hour north of me, and Jamestowne is almost two hours south of me. So we were already kinda hot and tired when we got there. Well, I was good, because Stimey didn't let me drive, and I had her to chat with. And the Zhu Zhu Pets. My kids insisted on bringing theirs, so we thought it would a good idea for Camp Stimey to include a general and complete round of Zhu Zhu Sidekicks, and then Andy had to bring two, so we had six Zhu Zhu Pets cooing and squeaking all the way up and down the road. Whee!

(By the way, Stimey has an awesome car. I recommend roadtrips with her. In her car.)

The only real hiccup we had was when we initially arrived, and Joey's Zhu Zhu Pet fell out of the car, and onto the pavement. This really gets Joey upset when his toys touch the road and get "dirty". However, we assured him that the Zhu Zhu was fine, and could come with him into Jamestowne (because he's hurt and needs to be cuddled!), and the world righted itself. So we were off and running!

We decided to head straight down to the boats, which is the farthest point, and thus be there with the least amount of heat. It almost worked. We wandered through the Powhatan Village first. The boys liked ducking into the huts and seeing how Native Americans lived and where they slept.

We soon also had a running theme of "where's Jack?" Jack is such a wonderful little guy, so quiet, so patient, and so very curious. He has a mind that is turning a mile a minute, and he wants to go see what this is, or what caught his eye there. Because he is so quiet, he is easy to lose- the other guys, you just take a listen and you know where they are without even seeing them. Even Joey is motor-mouthing, especially with the heat. With Jack, visual contact is must. Stimey and I spend a good deal of time making sure one of us had visual contact.

Then we made it down to the boats. They have three replicas of boats the original Jamestown settlers crossed the ocean on. They are very small, especially considering there were some 40-50 people on them for four months solid. You can go on the boats and have people in costume telling you about the boats and the crossing and that sort of thing. I stationed myself at the only on/off ramp to ensure we had no escapees while running about the decks and cabins.

The boys bobbed and ducked all over the boats, down in the hold, through the cabins, onto the decks. The decks weren't too bad, but the lower hold, with none of the deck breezes, was pretty stifling. Joey liked the cabins, he came in and out of this door a few times. It was also pretty shady on the middle deck, they had canvas stretched over it like a tent, which made it more inviting.

Here's Quinn on the boat. Kind looks like Peter Pan to me, complete with Zhu Zhu Pet. To keep folks cool, I brought along drinks in ice in a cooler, and dipped washcloths in the cold water. By the end of the day, Quinn was running around with one on his head, then around his Zhu Zhu Pet. Absolutely precious. Those boys take good care of their Zhu Zhus.

Andy was having a grand time running about the boats. There is something about boys and the call of the sea, swinging about the rigging and running up and down the decks of ships. Pirates, ahoy!

Andy and Sam were, as usual, mostly inseparable. Andy luvs him some Sam. I wouldn't be surprised if there were more letters and pictures exchanged between them this week.

The heat was coming on fast, and we kind of had to hurry the boys along instead of letting them run about in complete happiness.

Joey and I share sun sensitivity, so I surrendered my hat to a hot and tired boy as we headed up to the fort. We weren't there long before I started giving the signals of Joey being done with the heat (something to the effect of, "Eep, Stimey, Joey's done! Where's Jack?")

We did discover the good-sized and airy church structure, which I found architecturally fascinating, but will have to spend time going over the quick snaps I took rather than being able to wander at my leisure to admire the wood work. This was a reproduction, mind, but it was still lovely. Andy liked the pews. Even my bouncy one needed a break.

Yes, Andy and Sam definitely had a good day. They got to see a musket fired, they got to play on three boats, any one of which could have been directly out of any pirate tale you like, they got to pretend to be Powhatan Indians and even try out the beds, and they got to be with each other! Total WIN!

WE then strolled back up to the museum, where you aren't allowed to take photos, and found some places to stretch out, watch educational films, and play with our Zhu Zhus while we cooled off. And as we drove off into the sunset, we saw the thunderstorms building and ready to strike, so our timing was fabulous.

Being with Team Stimey is always a pleasure. We should do it more often. And when it's cooler, so we can make it together longer.

Then The Morning Comes

My good buddy Stimey and I are going to Jamestowne tomorrow. And she isn't going to read this post, because she is WAY too busy packing stuff for her kids to eat and stuff, and getting ready, so she's going to just mosey on along to maybe NIksmom's site, or Xtreme Parenthood, or somewhere else cool supermoms hang out, she's not reading this one here.








Is she gone?








OK, I'm a little anxious about tomorrow. I mean, if you knew one of the super-coolest, most awesomely awesome jazzy wonderful fabulous people on Earth was coming to your house, even for just a minute, you'd do some prep for that, right? Maybe clean, get some wine, put up decorations, something. I've done nothing at all. Poor Stimey is going to get hit full in the face with my glorious lack of housekeeping skills. And all sorts of other skills. I don't usually have folks over to my house, especially this time of year. Christmas is better- the house is cleaned and decorated and sparkling, literally. But the beginning of summer? Not a chance. I'm lucky to see my livingroom floor. Except that I think it has playdough smeared on it right now. Oops.

My plan for prep is to take a shower. That's a rare thing here, a real shower in the middle of the week! At least she won't know I'm normally stinky on top of being messy.

I know it is going to be a rockin' day, even if our plans get turned up-side down by the heat- because we'll be in Camp Stimey. And if you are still here reading, Stimey, I can hardly wait- this is better than Christmas!

Happy Father's Day!

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

Taking all the help we can get

We're back from the big OT eval. I managed to get a script from the doctor's office this morning (I forgot to ask for it yesterday during the annual checkup, because I am, yes, an idiot), so off we went!

After Ms Lisa took a good look at the little guy, we had a chat about what he needs to be productive in school. I told her the bare and terrible truth: we need all the help we can get, so we can provide proper guidance to the new school folks. Stuff that we've done on the fly now needs to be formalized and simplified. We discussed sensory needs, we discussed social skills, we discussed lunch bunch, we discussed the problems of skill generalization (what good is a skill being performed before the school OT if he doesn't perform it anywhere else? Sometimes I wonder if the school OT thinks, "Well, see, he can do it... he must not want to!"... ie, "What a spoiled brat!"). I'm hoping for a fabulous report in 7-10 days which says he needs these things to access the curriculum. She was particularly interested in the phys ed curriculum that he is clearly not accessing in the general phys ed program... having something more geared to him would be fantastic.

I'll keep you posted!

New Directory of Autism Blogs: Come Join Us!

When the Autism Hub went down, I had no idea what happened. I still have no idea what happened. I'm kinda clueless about stuff like politics and gossip and drama and stuff like that. I always have been. When stuff starts hitting the fan, I'm the clueless one going, "Huh? What fan? And why am I all damp?" Yes, I often wonder how much I might have contributed to the problem; I often never find out because I never find out what the problem was. How much of being clueless made it worse? Am I really that much in La-La Land? And I have this problem all the time in real life situations, when I should be able to read the social cues swirling about me, and just don't. Online? Gah!

So apparently the Hub went down, and I didn't know about it for a few days. And now it is back up, and I found out because someone on Facebook mentioned they weren't on it anymore. In fact, a couple of folks mentioned it- folks I consider very central voices to the parent discussion side of things. I wasn't surprised to find my own blog gone, after all, I'm just a little blog, and I did kinda crash the party instead of being invited. In fact, the vast majority of the comfy-couch section seems to have been axed.

But salvation is here! Kim Wombles has put together a new lovely directory of autism blogs, and it looks fabulous: The Autism Blogs Directory. Lots and lots of blogs, so you can check out plenty of online voices saying lots of thought-provoking things about topics I never even knew might be an issue! Do I agree with everybody? Heck, no! And I think that's a good thing!

So come check it out, find some new blogs to read, grab some hot beverage of your choice, and join us on the comfy couches!

Boys at the Faire: Movie Version

Renaissance Faire

This week's adventure was a trip to the Renaissance Faire, which opened at the Lake Anna Winery this weekend, and runs (weekends only) through June. It is $8 per person for everyone 6 and older, free for under 6 (Andy was free! Last time!), and we had a roaringly good time. Maybe a little bit of a roller-coaster, but what did I expect for taking two kids who decided to wear long sleeves to a strange place full of people wearing funny clothes?


Andy started shy, but Joey jumped in with both feet. He learned about sword fighting, and then played tambourine with the wandering minstrels (who really do stop and sing to you!), and then got right down to business learning to write with a quill, and showing off how well he can already write with a quill. That's my boy!


Andy started warming up when he found the toy box and dress-up center. The Faire is arranged in a large ring of Stuff to Buy around an open field, but there is a back walk in the woods, with more Stuff to Buy. Among the Stuff to Buy are various stages with something always going on, and in the field, they are playing Renaissance games (you can join in!) or dancing (you can join in!) or putting on impromptu naval battles (yep! Join in!). For folks who remember the old Virginia Wine Festival, it isn't as big, but very similar set-up, and yeah, it works very well for the Ren Faire, too. :) The back woods also had stages and things to do, including some games (throw battle axes, 3 throws for $2!) and a lot of the children's stuff, and the Queen's Court- really smart, as it was shady and lovely. The kid's section (Poppet's) included crafts that changed every half-hour or so, and could be done for free (though donations for materials accepted).


We did catch the Archery Show (there are folks who wander around in costume telling you what's going on when, and what shows are about to start and where they are), and the boys liked the arrows and the shooting. The archery guy wasn't too impressed with us, however, and seemed to have minimal experience with children. He kinda got annoyed that JOey was moving around and asked questions over and over.


We started off as the only ones there, which worked OK, but when more folks came and he basically restarted the program (which was understandable- it was a cool trick shot with four arrows!), we took our leave and got out of the way. Andy wanted to toss axes, so we did that instead.


We got some ice cream and a drink, and then wandered back over to the armoury to take a peek. This was out in the sun more, and it was getting pretty hot, but I hoped the ice cream would hold them until I could scout around for food stalls, which were not immediately apparent. Joey got interested in the helmets.


So this is what I saw: a happy Joey trying on helmets and giggling, and a gentleman enjoying watching him giggle and trying on the different helmets. Happy child. Not ten feet away. Lovely.


Let's turn to the other child, who is busily pestering the guy talking about the pikes and spears. What's that one? What's that one? Oooh, why is that one all spiky? Happy child, not ten feet away, but ten feet away in a slightly different direction. What could go wrong?

Both of these photos are prelude to a melt down. I have no clue what happened. I was taking the picture of Andy when the Wail of Warning went up, and I turned to find Joey making a break for the woods at top speed. Much to the annoyance of the staff, I darted into the woods after him, with Andy on my heels, both of us calling for Joey. Oh, and several folks in funny clothes right on our heels, explaining to me none-too-patiently that we weren't allowed back there. No kidding! I finally had to stop and explain that Joey was autistic, that I would get him, that I understood we were not allowed back there, this was not me allowing him to run (what idiots are these?), and could they please back off, they were scaring him?

I managed to get him back to a tent and calmed down some, and Andy went back to the pikes (and the folks, once they understood, were actually very helpful), and one of the folks who hadn't run after us, but remember Joey from earlier, came over and sat down to talk to him a little and help calm him down. After another brief melt, I figured out that Mom the Idiot needed to feed her children lunch.


So we found the food, bought some, and headed back to the woods to consume it. Corns dogs, fish and chips, cold drinks, yay! With everyone feeling better, we returned to Poppets to see what craft was happening and take a breath. They boys rediscovered the toy area.


Since they were happy, I let them dress up and play to their heart's content. Andy became a cowboy. Joey was a "boy princess", which I explained was a prince, so he became "Doctor Prince"- who helped animals who are sick, and wears a beautiful crown. Happy boys.


Joey talked to himself in the mirror, and announced himself to all and sundry, as Andy played on the horse and explored the other toys. At one point, we had a good crew of dressed-up kids running about, though most of the kids (and most of the adults!) came already in full costume!


Then we had a puppet play, and the boys now want me to make a stage and puppets. I have a surprise. They are going to make the puppets.

Then the craft of the hour was making dolls, and the boys wanted one, so they got busy making dolls. That was lovely, though Andy wasn't so keen on knots, and wanted his doll to have a red hat. I made him one when we got home.


Then came the Knighting Ceremony! Joey was knighted by the Queen, along with many of the other children. We got cool certificates and Joey got a pin, but Andy was too nervous to be knighted at the ceremony. Too many people in funny (but gorgeous!) clothes. Oh, and there was a real sword involved.


After the ceremony, we were permitted audience with the Queen. Joey got up and let everybody know he liked math, and the very gracious Queen chatted with him for a minute before sending him to the treasure box for a present. These people knew what they were doing with this. During the Knighting, they knew where parents needed to stand to get good photos, and insisted on waiting until parents were in position and ready before doing the knighting. Then they made sure everybody was happy with the photos before moving on. She did the same for the audience, making sure everyone got the "portraits" they wanted with their "faerie boxes."


Joey picked a coin from the treasure box. He was very pleased with it, and ran about showing everyone in the glade. Seeing a treasure box made his brother bolder- a chance for a toy! Wow! We were all about that!


So up brave Andy went, and even gave the Queen a hug! She talked to him for a while, then asked if he was ready now to be knighted. He said yes, so the ceremony commenced! So I now have two Defenders of the Realm, Sir Joey and Sir Andy! Andy was also fascinated by the jewels on the Queen's gown, which she thought amusing.


Huzzah, Sir Andy! For being so brave, he got to pick two prizes- a red glass pebble and a coin! (He didn't get a pin, because he didn't get knighted in the first ceremony, and the girl with the pins was gone).


We went on to play more games, and buy wooden swords. I couldn't take pictures because I was holding two iced lemonades and handing out money.

So overall, a good time had by all. Put on your medieval duds and head over there. Oh, and they serve beer, wine, and hard cider, they card you at the front and give you a bracelet, and the pub looked lovely, and had lots of singing and stuff going on. The folks at the front laughed when I explained I didn't want a bracelet- I had two little guys to keep up with, I needed my wits. Definitely worth the $8. Much better than a movie.

While you wait...

While you are waiting for inspiration to strike me, please take a nice stroll in my garden. Lemonade is on the deck.

Non-Update: School Incident

You may remember that we had an incident at school a couple weeks ago; Joey was taught a bad word and then paraded about the class to repeat it, to the amusement of his classmates. Want a textbook example of bullying a child with a disability? Here it is.

You may remember I was assured there was teaching, there was "consequences" for the other child, there was discussion. However, with such an event happening even when the next school is assuring us that "our kids aren't like that", and the possible supports I could arrange through his OT and speech therapists, getting a report on the incident has been... frustrating.

I went to the school office and requested a report. I was told to see Ms. D, and someone went to tell her I was there. I waited. Then I was told Ms. D was busy and had appointments waiting, so I put my request in writing. The response was an email to the effect of, "I have no incident report on this incident." Um... wait a minute, I thought there were "consequences" for the bully involved? If there were "consequences", surely there was a report, and the victim should have access to such a report (with the name of the other child's name and ID info redacted for privacy- we are talking about minors here)? Or since I have requested one, perhaps one could be created to document the incident? No, I was referred to the gym teacher, Mr. P, who left a message on my phone.

Talking on the phone is not documentation.

What, I'm not happy that Joey is fine and the other child has had "consequences"?

Well, no. No I'm not. Joey isn't fine. I want a frickin' report. In writing. Now.

I stumbled upon the teacher in question when Joey missed the bus one morning, and I had to take him to school. The teacher was upset, and perhaps a little nervous to realize who I was, and not knowing whether or not I knew who he was. I certainly know now. I was promised a summary of the incident via email by the following Monday.

Sound good? Yeah. Too good. Two weeks later, I've got nada. Last week, I contacted our awesome case manager to make sure the email I had sent confirming the conversation had not fallen into the nethers, and had her re-forward my email. I still have nothing.

Today is Tuesday. If I still have nothing come Thursday, Hell breaks loose on Friday. Just saying.

The Hardest Half Minute

When I take pics and film of my guys, it is a rare thing to see them doing anything but being their smiling, happy little selves, being boys and doing stuff boys do. When I send out movies and slide shows of my kids, it becomes hard for some folks to believe that our lives are so divergent from normal. It spreads a sort of myth that my kids just do "more of the same".

I don't use the word "myth" lightly, as many of my students can tell you. That general misuse of the term to indicate "complete falsehood" makes properly talking about myth difficult. Myth is not false. Myth is about deeper Truth. Perhaps Truth on the Slant. An oblique view of realities, in terms that are understandable to the audience. The image I put out of Joey and Andy, that "like other kids, only more" is an oblique look at the Truth of living with my kids. But what does it mean to have "more of the same"? Does intensity make a difference?

I took footage of about 30 seconds of the start of a spiral today. Joey fell and scraped his knees, poor little guy, and the instant overload commenced. Few get to see this part of Joey, that "everything is perfect until something goes wrong; then I'm completely D.O.N.E." side. Those who do see it, see it so often, we're used to it, it just becomes par for the course, and you know what to do to mitigate and have the best chances of avoiding meltdown.

However, our new school folks have not seen it. The folks who think none of their little darlings would tease a special needs child have no clue what this looks like, or what to do; and it becomes so matter-of-course to the old crew that I think it gets overlooked. It is a part of our lives left undocumented, and I worry about it being ignored. Ignoring it can cause a whole host of problems; not having safeguards in place to deal with the unexpected spiral means meltdowns are on the way. Meltdowns are scary- for Joey as well for anyone around him. They are also avoidable, if you know what you doing and how to diffuse a situation (which is hard enough to do when you are prepared and keeping it mind!) I'd say, prepared, you have about an 80-90% chance of averting meltdown. Unprepared? Eep.

So I took about 30 seconds of footage of the beginnings of a spiral. I didn't catch the first initial shock and scream from the actual fall. I started with him hugging on his Dad and getting hugged, and yet things were still not right. He was D.O.N.E. It goes up to when he decides "I'm leaving now" (and says so), and I have to stop filming to go catch him. We didn't melt, and I'll probably never get footage of a melt. I'm too busy trying to help him to be filming something like that. But this was enough to see the storm clouds brewing. Hopefully dark clouds on the horizon are enough to indicate the strength of a potential storm.

Watching those 30 seconds was hard. I look over the clips, and erase ones that are better tossed to oblivion- unfortunate angles, bad focus, accidental exposures, that sort of thing. I also wanted to get an idea of what I had captured, because to be honest, I was paying more attention to Joey than to the camera, even though it was in my hand; those little markers that say "I'm about to melt!" are important to catch. I think it is important to get across to the school what skills we need worked on and able to generalize to home, and the potential issues over things we consider insignificant. It is also important to document the issue so we can measure improvements- or track regressions. I'm nervous about next year in a big way. The questions asked by the new teachers at the IEP made plain how unprepared they are.

It is all the harder to watch because we are through the early spring regressions, and have made our leap forward. Joey helped his Grandma make her bed- mattress cover and all. He is better able to locate objects in a room, even bringing things from one room to another. He is improving in his ability to control himself and cope. His language use is looking up. His attitudes are generally improving. He's doing so well. It makes the harder moments that much harder to witness, and to get others to understand. We've come so far, and yet have so far to go; we can't get stuck in a rut in the middle. Not now.

At the Park, Part II

After school, it was such a lovely day, we just had to wander over to the park for some serious playtime. There were some families we knew already there, so that was exciting, and I stood around with a bunch of other moms while our kids ran wild over slide and swing.

Its always a little odd to be in a group of "regular" moms. This particular group is very interesting, because the women are all so different, and here we are tossed together because our kids run in the same age cloud. One mom is a powerhouse who has her kids in Montessori schools. One is a health nut from South Africa who doesn't believe in vaccinating her child because she thinks it is "more natural" for her child to simply get diseases (but she's doing something right- her child is an absolute wonder). One is a hippie-type laid-back mom who doesn't say much, but hears much. The other is a very strict mom who doesn't seem to think her kids ought to get dirty... at a playground... One of them works, the others are all stay-at-home (though I suspect the quiet one is actually a work-at-home). The variety of life experience always makes for interesting insights and ideas bouncing about.

Then there is the odd part. The topics of conversation are odd to me. Working mom had a job interview, hoping her job goes full-time permanent, because she is in the process of a divorce. There was talk about working and giving up work. Having just had an interview myself, we managed to have some common ground there. Then there is the discussions of school activities. Since we have speech on Tuesdays, and the after-school programs require that you attend all sessions, we can't participate in them. Then there was the discussion of packing lunches. This was an extensive conversation about a fancy lunchbox that is divided into a lot of little sections, so you can provide a variety of foods, "not just a sandwich and carrots!" The swapping of lunch ideas was mind-bending. Do 8-year-olds really eat sushi and hummus? Does cous-cous keep well in a lunchbox? We're a bit of a sandwich, carrots, and fruit family. I'm not very creative with the lunch thing. Maybe I ought to be. Then the topic of movies and TV... I hate that one. I have never seen Titanic. I have seen exactly one scene of Desperate Housewives, and that is because Marlee Matlin is in it. And it didn't make me want to see the show. On the flip side, these ladies have never heard of Buckaroo Bonzai or Ground Force. They apparently have a book club, but I had never heard of the book.

No one talking about IEPs. Nothing about teachers, services, therapies, or odd behaviors. They let their kids run without even turning their heads to check them. A group of slightly older boys came straggling through, boys that have given Joey a hard time before, and I quickly clicked into watchfulness, and had to intervene. The other moms gave me a Look. There isn't a good way to explain that your kid was about to be seriously abused, and the words you heard suggested the abuse might go physical, and you had to do something because your kid doesn't understand to just walk away, doesn't understand that what was being said to him in that tone was intended maliciously. Also, how can you explain that your child is a little off-kilter because you are not sitting in your usual spot, even though you are in full and clear view?

The little group broke up, probably due to the time rather than my intervention in "playground politics". There were goodbyes and exchanging of new cell numbers amongst them, pleasantries. I'm perfectly welcome among them, but definitely different. I have very limited ground to share. I've spent my life that way, so it is nothing new, but it always feels odd.

Happy Birthday. Mommy!

Thank you for being a great Mom and an awesome Grandma!!!