Autism is...

Answering questions all day, such as "What's 40 plus 100?" and "Do you like the number zeeeee-ro?" (Answer: no. Why? Because there's nothing to it!)

Understanding that sometimes you have to give a little extra time to get an answer, or ignore words that seem to slip out in frustration.

Time. I never have to worry about not knowing what time it is, ever again. I just ask my walking scheduler; and if we miss an important time, we hear about it.

Interesting pretend play- mixes of scripts from shows, movies, games, even books, stitched together to create new scenarios. He's being Buzz Lightyear and Scud at the same time, while watching out for the snappity-snap fish, using teamwork.

Small things done in great ways- such as having little fingers eagerly buttoning my coat, that first time he came up the stairs and called me Mommy, that first point across the room at a pumpkin. The pride he takes him his accomplishments, in meeting his challenges, in knowing he is moving forward.

Making the world around him smile, because he just beams his joy in being. Joey loves everybody, and makes sure they know it.

Easter Fun

The dyeing of the eggs.

Joey kept getting put off by the term "egg dyeing." We finally had to just go with "egg coloring." Death is a bit of a trigger around here these days.


Hunting for the eggs

Both guys did a pretty good job with the egg hunt this year. Visual scanning is not Joey's strong suit, so egg hunts are a bit of a challenge. I did a mixed bag of hidden eggs and eggs just sitting out, and they got a pretty even share of eggs between them, with minimal help for Joey.


After all that hard work, a boy gets his just reward. Don't worry, Andy did the same thing, the photos just didn't turn out as well.


Then we worked off that candy with a good round of toss-the-ball-on-the-roof. He tosses it as high as he can onto the roof, and then catches it when it rolls back down. Should be good practice for basketball season.


A Boy and His Dad.

Happy Easter!

If your guides claim
that the Kingdom is in the sky,
The birds of the sky will be there before you.
If they say it is in the sea,
The fishes of the sea will be there before you.
The Kingdom is within you and without you.
When you know yourselves, you will be known.
Then you shall know that you are
Sons of the Living Father.
But if you do not know yourselves
You are in poverty, and you are poverty.

(Thomas 3)


Happy Easter.

Letting things unwind

As we race towards our IEP date (I always get mine done early so I can plan and check and process and stuff), I am working on our new powerpoint. We are changing schools again, so we head into a new world with new people, who really don't know Joey. It is time to think about his strengths, his weaknesses, and most of all... his human-ness. The point of this powerpoint is not only to help focus my own thinking, but to emphasize Joey as more than a number and a list on paper, but as a real, living child.

Both of my kids have after-school moods. I am sure yours do, too. Andy comes home, ready to bounce off the walls and chatter about everything. Joey comes home and is often out of words, out of energy, and ready to hop onto his computer and play games there- nice, predictable games like Wow Wow Wubbsy- complicated enough to be entertaining, but clear enough to be predictable and complete-able. He's going to totally rock at Sonic the Hedgehog when he gets around to it.

I sometimes wonder if I should allow the computer time after school. If I let him, he would play solidly from the time he gets home until bedtime (Joey does his homework at school while waiting for his bus to arrive). It can be a real challenge to draw him back into doing something else, especially if he has had a bad day. With the sunshine returning, playing outside does have appeal, which helps a lot.

On the other hand, letting him unwind is also important. The stress he must go through keeping himself together and focused all day must be incredible. That is one of the things I'd like to think about with the new IEP. The problems of regression I witnessed at field day is another.

I wonder how worried people get about such things when there isn't special education in the picture. That balance between meeting needs and micro-management is a fine line to walk here. Perhaps that line gets crossed with lessons and sports and what-have-you these days.

Autism Awareness Month: Here it IS!

Welcome to Autism Awareness Month! Happy April!

What is autism to us?

Autism is a big smile that greets us every morning, often with a "Good morning, Mommy. I got a 764! I won the game!"

Autism is a big hug and kiss, you just have to ask.

Autism is leaping up, throwing that arm confidently forward, and proclaiming, "To Infinity, and Beyond!"

Autism is being proud to run around the bases.

Autism is the never-ending chant in the back seat- you might as well join in.

Autism is an invitation to play that starts, "It's 3:17! Do you like the number 48?"

Autism is a big, happy, "WOW!" when we discover something new.

Autism is a little flicky finger showing me where to look.

Autism is a whole list of numbers on my sidewalk. And someone being upset if you step on one, because they are "houses."

Autism is insisting on getting Ms. Leslie (our awesome speech therapist) a bag of swedish fish every single week, because she said she likes them.

Autism is our way of life. When we have downs, its always a good thing to remember the ups. When we take a step back, we don't forget we may turn a corner. Be aware: autism is not a tragedy. Ignorance is a tragedy. Autism just is.

Chikkin Adventurs

moar funny pictures

Autism Awareness Month: Here it Comes!

Tomorrow begins Autism Awareness Month. Last April, I did a little series of stuff about resources, and just thought I'd remind folks of those resources before we dive in; just flip through and see if there is anything useful.

Are You Aware?

Autistic Self-Advocacy Network
Whitterer on Autism
Autism Hub
Mother at the Swings
Where It Begins
Signing Time!
The ARC
Wrightslaw
The video on inclusion I linked to last year is gone. Here is an alternate.
Easter Seals
Welcome to Holland
The SPD Foundation
The Autism Acceptance Project
The Autism Society of America
No Myths
Uniquely Gifted
Twice Exceptional
Blogging Against Disablism (watch for 2010!)
Pop-Up IEP
Left Brain, Right Brain
tfh (Special needs toys)
Different Roads to Learning
Discovery Toys
Enabling Devices
Kaplan Early Learning
One Step Ahead
DLTK
Childcareland
Lil' Fingers
First School
Starfall
Enchanted Learning
Are You Aware? XXII: Links to Hate Crimes
Google Sketchup
NIH Autism Fact Sheet
Autism Watch
ABA (Kennedy Krieger Article)
Floortime
TEACCH
RDI
Pivotal Response
PECS
Sensory Integration Therapies
POAC
Organization for Autism Research

Let's Play Ball!

Joey had his first Little League Challengers Baseball game today! He was fabulous!

Everybody gets to hit, everybody goes around the bases, and everybody gets to field. And we as parents all get to cheer!

It was absolutely lovely to see Joey having such a fabulous time.

Joey was so excited to get and throw the ball, and to hit the ball and run the bases. All the kids were incredible!

I recommend Challengers; everybody had so much fun!

Hi, Stimey!

Judgments Aside

Sometimes, when I am out with the guys, I get the feeling of being in a fishbowl. People sometimes notice my kids are different. Sometimes people look at Joey askance. Am I dreaming it? Am I over-sensitive? Is it just me?

And every time I start thinking, maybe it is just me, I find stuff like this.** And it isn't just the post- its the preponderance of comments supporting the post. It's not just one person being ignorant and judgmental, it's a whole crowd of them, who think it's funny. The point about teaching kids manners? I'm all over it. Making fun of someone who is teaching those manners, simply because they are in the middle of the lesson instead of at the end of it? Not. Cool.

And it is one of the reasons we don't go to the library much, to be honest. After all, Joey does a similar thing- he notes his small steps to success. "I'm being patient, Mom!" "Look, Mom, I am keeping my hands to myself!" "Mom! I am being nice to my brother!"

But let's leave that aside, and instead come to the park with me and the guys. The sun is warm, there are people laughing, kids playing. A young woman, somewhere in her teen years, comes up to Joey and waves for him to follow her. The way she holds her hands, her head, the over-extension of her joints, her difficulty with speech, all speak of special needs. Joey doesn't understand, I prompt him that the girl wants to play with him. They start a game of tag.

Some other young ladies, these girls may be fifteen, join in. The girl likes to tickle people. We tickle back. She likes Andy's new toy, and they play with it for a while, before he is distracted by another boy his own age. There is more tag, some hide-and-seek. Joey goes over to a bench where two moms are parked with their toddlers, and they let him play with a baby doll with their daughter. There is more running, some frisbee-tossing attempts, more tag, more tickling.

Are people thinking less of this young lady because she doesn't follow social rules? Because she flaps her hands, wants to play tag, likes to squeal when a dog barks? No, even the other teenagers here just join into the fun. Are people thinking less of my Joey, even though they can tell his speech in unusual, his social skills not quite on par? No, they let him be himself and join into the fun.

Compassion is a wonderful thing; acceptance is far more fun; and sunshine is for everybody to share and share alike. Everybody wins.



**Edit: If you really need to see the original post and comments, I have a PDF of the original post and comments, which have been removed from the original link. Or you can recall the original Google cached document yourself. But I don't recommend it. It really is depressing.

***Edit edit: Read this one instead. It's much better.

Wordless Wednesday: Rainy Day Games

Spring!

Sending you to the garden for a little bit of spring.

Planting Seeds

It's been Garden Week here in JoeyWorld and AndyLand, and we have been working on our garden. I got it turned over Friday, so we were ready to go! Woo-hoo! So we took a trip to the garden center.

The big attraction at the garden center is not the gardens. It's the fish. They used to have a beautiful, lovely fish pond in one of the green houses, but I guess they got tired of being a favorite rainy-day activity and have moved everything outside. Oh, and expanded to a larger pond with more fish. After our fish adventures, I can't imagine folks spending huge money on outdoor ponds with carp, but maybe they are easier than indoor aquariums. Or whatever.

The boys cooed over the new fish pond and the fish, and then Andy ran around the back to look at the trees. He wanted to know what some of them were, but I expect he'll be more interested when they really start flowering and leafing. They were more interested in running through the narrow aisles, touching the different barks, and singing. Yes, indeed. Spring is here.

Then came time to Pick Out Seeds. Its still the first breaths of spring, and we're not usually ready this early to get planting, so we had to explain the concept of Spring Seeds and Summer Seeds. We can't plant squash or pumpkins right now, we have to plant things like turnips, spinach, and swiss chard. That sort of thing. Andy selected lettuce, Joey decided on carrots, and I got turnips (well, the boys decided I would get turnips). I sprung for the overpriced organic seed packets instead of trying to explain the them the concept of bulk seed, since we were using the little packets to explain the kinds of vegetables we could plant. Besides, it's helping the economy, right? And this was a local store, not a big chain thing.

Anyway, we proudly got to plant our garden yesterday. We had made an attempt at the park, but Andy cut his foot pretty badly (but not a stitches situation), so we went home early and got our garden planted instead. Now, our garden is only about 4 feet long and 2 feet wide, so I divided it into zones, which the boys designated colors. Andy is Zone Red, with his lettuce seed. Joey is Zone Green with his carrots. And I am Zone Yellow, with the turnips. I had each of them plant their own seeds. Andy got to spread his and lightly pat the soil over them. Joey got to do rows, which he found really exciting, since it involved digging with a stick. Then I let them both spread mine, and pat them in.

It rained over night a little, and is supposed to rain today. Wish us luck!

Aches

I had a funeral to go to today. At my age, funerals are still rare things. You go to funerals for your older relatives, as the generations shift and your parents become the Grandparents and you become the Parents. Funerals are places where you see older people gathered about remembering the good old days. At my age, you can still count how many people are missing from your high school class, your college class. It stings to lose someone, but death is still something Over There, something that happens in a natural shift of the world in time. Then comes that first death when it really hits you, these people are gone, and its just too soon to start going to funerals for your friends. Seriously. I'm not old enough to be doing this.

I sat in the back, because to be honest, I'm not likely to be high up on this person's lists of People I Think About. When he graduated high school, I wasn't even there yet. He was in the band with my brother, who was in high school. He and his twin brother would sometimes come to the house; I was so young, I couldn't even tell you why they were there, probably something to do with band practices and stuff, and they were friends of my brother. I remember my brother thinking the world of them. I remember them actually including me, talking to me, joking with me, as if I wasn't just the Little Sister, but just another part of the Band Folks.

Think about your own high school days. Do you remember those seniors and juniors who took notice of you? Do you remember those kids who came after you? Did you even think about kids that came in to high school after you had left? Yeah, I doubt I was very high on the list. My brother, possibly; there was no forgetting my brother once you had met him, especially then, when his zany humor was at its zenith.

I went alone to this one. Bringing the boys would not be a good idea, spring fever is upon us. I sat in the back with another woman who was also alone. She was a few years older than me, so likely that she went to school with the twins. I scanned the room, wondering why there weren't more young people my age (well, slightly older than me, but close enough) in the room; everyone looked to be at least forty.

Did you just palm-slap your head in my honor?

So much for the amusing part. It was a really nice service, but it was really wrenching to see the family in so much pain, people I have such respect for, people I have looked up to since I was just becoming a teenager, people who, to me, embody the kind of people I want to be- loving, inclusive, welcoming, honest, honorable people. This was a loss of a hero. Did I really know these people now? Not really. But the memory of who they were, of that feeling of being a part and not an outsider at that moment, its one of those things that help you through the rough patches of growing up, and you think about it. A lot.

I think about these people every day, from the time I get up to the time I fall asleep, even though they hardly know me at all.

Rest in peace, David Cross.

And all my love and prayers for his brother and sister-in-law, Joey and Jennie Cross.

Tomorrow is Friday

List of things to do tomorrow, my day off (in no particular order; I have to write things down as the pop into my head or they're gone):

Mail shoes to Niksmom for Nik
Prune Roses
Dig Garden (if ground is dry enough)
Clean basement and organize art supplies
Clean livingroom
Needlepoint for mom's easter present
Mulch pruning clippings
Weed garden
Get cow or horse manure for garden
Spread same
Try to fix sandbox roof that collapsed in snowmageddon
Fix cheeseburgers for dinner
Find chairs for kitchen
Set up shelves in Andy's room, remove bin holder and baby toys
Ditto for Joey's room
Change fish water
Clean cat boxes

Hmmmm... I wonder how much of this I will actually get to?

Edit:
Got the garden done, the pruning done, the cats done, the fish done, started on teh basement... and put some polyurethane on my porch table. Forgot to put that on the list. :P

Revelations of Spring

So this morning as we took our short jaunt to the bus stop, we noticed the buds were busting all over the place. Yes, indeed, spring is here! And Andy wanted to know about the red things on one tree, and if they would be cherries. No, I explained, this was a maple tree, and these red things were blooms. On another tree, the beds were opening into leaves.

I was suddenly reminded of Helen Keller. I have always been struck with the story of her learning words. After several days of trying to teach Helen to spell, Anne held her hand under water at the pump while spelling 'water'; and Helen suddenly got it. Words meant something, and a whole new world opened up. Kind of like Andy understanding the sign for candy.

After years of pointing to and naming trees, it hit Andy smack in the face- trees had names. There were different kinds. Suddenly, he wanted to know what kind of tree this was. And what about this one? How about that one? What kind of tree is that? And that? And that?

Its amazing to see a little mind click into gear, with voracity and determination. There is meaning here, and I want it all now!

Unfortunately, most of the trees were different kinds of maple trees, and without the leaves, I'm a bit at a loss (I know you can tell which one is which without the leaves, but I'm not that good). I did get to point out holly, dogwood, oak, pear, and more maple. Hey, its a start.

Top O' the Mornin'!

Finian's Rainbow

On the day I was born,
Said my father, said he.
I've an an elegant legacy
Waitin' for ye,
'Tis a rhyme for your lip
And a song for your heart,
To sing it whenever
The world falls apart.

Look, look
Look to the rainbow.
Follow it over the hill and stream.
Look, look
Look to the rainbow.
Follow the fellow
Who follows a dream.

'Twas a sumptuous
To bequeath to a child.
For the lure of that song
Keeps my heart runnin’ wild.
“Tis a rhyme for me lip
And a song for me heart
And I sing it whenever the world falls apart.

Look, look
Look to the rainbow.
Follow it over the hill and stream.
Look, look
Look to the rainbow.
Follow the fellow
Who follows a dream.

So I bundled me heart
And I roamed the world free
To the East with the lark
To the West with the sea
And I searched all the earth
And I scanned all the skies
But I found it at last in my own true love’s eyes.

Look, look
Look to the rainbow.
Follow it over the hill and stream.
Look, look
Look to the rainbow.
Follow the fellow
Who follows a dream.

'Twas a sumptuous
To bequeath to a child.
For the lure of that song
Kept her feet funnin' wild.
For you never grow old
And you never stand still,
With whippoorwills singin'
Beyond the next hill.

Look, look
Look to the rainbow.
Follow it over the hill and the stream.
Look, look
Look to the rainbow.
Follow the fellow
Who follows a dream.
Follow the fellow,
Follow the fellow,
Follow the fellow
Who follows a dream.

Update: Zakh Price

I've been jaunting about the internet trying to find out what happened with Zakh Price. Apparently, he won his due process hearing, but the felony assault charges are going forward. I hope they have a judge with some sense over there.

Energy Bottoms Out

If you aren't into whining, move on to the next blog. Nothing to see here. Thanks.

Still here? I'm now going to whine. Like a little spoiled drama queen girl who doesn't get her way.

I have a lot of things I am supposed to be doing. Normal, regular things that got out of hand, out of control, and outer space. The fault is entirely my own, because my nature is not the neat and tidy kind. In fact, I think I put pack-rats to shame. When I see a house in worse shape than mine, its A. on TV and B. on a show about how to clean out a packrat nest, and usually involves a team of 3-5 people and a large skip.

Not only am I naturally a disaster, but keeping on top of the pile takes time. Time around here is a tradable commodity. I'm not a stay-at-home mom, I'm a work-around-the-kids'-schedules mom. I put the kids on the bus, grab a shower (usually), check my email and tweets, and hit the road. Mom's office, where I do stuff like track our genealogy research cases, prep manuscripts for publishing, and light cleaning. My classroom, teaching intro art history to a variety of students at a variety of levels of college-readiness (and fewer and fewer of them are college-ready for my college class). If I'm lucky, I might get a few minutes to do some normal errand stuff, like pop into the grocery, or peck at my garden. The weekends are usually dedicated to my essay scoring job. Then I have the guys home, and I try to peck at some stuff. Usually I'm trying to engage them, picking up their toys, or taking Joey to speech (the OT is on temporary* hold), and trying to get Andy to do his homework. I try to sneak in some email and stuff if they get occupied with their own stuff. I'm on a kick to cook dinner better instead of tossing sandwiches, hot dogs, or something from the freezer at the boys and hope to get around to feeding the adults later, because my sugar numbers don't like me eating after about 7, and besides, its better for everybody. However, cooking takes time. Then its bed-time, and Andy still insists someone be in the room with him to go to sleep. Now it's 8:30, which isn't bad, and I have my online classes to do. When I have some time, I read some blogs, and somewhere between 11 and 12, unless my nerves are bad, we get some sleep. I'm supposed to have Fridays off. That's now a big joke around here.

Yeah, I could clean instead of reading blogs. I am aware of that. Thanks.

This last week, I actually made some progress. This is partly because the boys are in school an extra 20 minutes, though that's only translated to about 15 minutes later getting off the bus for some reason. Anyway, I managed to dig out my kitchen table, which I needed to do to support my Cook Dinner Better campaign. I was hoping by this time in the school year, I would have my basement dug out and set up for the boys, my garden mulched, pruned, and ready for spring, and perhaps have made some progress on my guest room, but so far, I've gotten the kitchen table dug out. Kinda. Oh, and the utility strip out front mulched, so I can keep down the dog poo. I need to add the herbal spray that discourages the dogs from using our utility strip as a latrine to my list of things to get at the store. That's about it.

Oh, wait, I actually cooked dinner. Twice.

Yeah. Yay for me.

*We hope.

Pulling the brain together

Tomorrow is supposed to be the first pre-IEP meeting, that touch-base where I hit up Joey's case manager with things I think the school folks should be thinking about as we start to do the IEP jig. These things are still mostly vague nigglings of things being wrong. Some are more solid ground, some are harder to lay a finger on. These are things I am still trying to process enough to express, because time seems to flash by before I can get a grasp on anything these days. It is time to rev the processing a bit, and get moving on the new powerpoint, because Joey is going to a new school next year. The new people kind of know who he is, because I get titchy about playing phone tag with the school principal (which I am still doing!) and kinda complained to the director of student services, who kinda let it be known that balls better start rolling or heads would. I understand they have sent some folks over to observe Joey, and that's fine. But even if they spent the whole day with him, they have seen him for, oh, seven hours, max. They need to know who this child is, and who I am, and what expectations we have for Joey and for the school.

One thing about making a powerpoint, it brings focus to the processing. It also is an exercise in balance. We want people to know both the good and the not-so-good, the strengths Joey has as well as his weaknesses. We want folks to know what kind of grasp we have of the situation and of Joey. We aren't one of those parents who never shows up for meetings and uses the school to baby-sit the kid. We expect progress, we expect support, we expect education.

We have been pleased with Joey's team these last few years, and we're going to be sorry to lose people who not only know Joey so well, but have a solid sense of how to support him and keep him on the straight and narrow. We've also been lucky enough to have an aide who can sign, and that helps more than people understand. With all the good, I'm a bit in a funk about the bad. Its a shock to see Joey not doing things, unable to do things, he was doing, or at least trying, in kindergarden. There is a lot of frustration that need to be addressed. Social issues of group play and dynamics, skills he needs to get on in the world, need to be considered. How do you teach a child how to figure out what a group of kids is playing? The isolation needs to be addressed.

With the warm days, we have been playing more outside, and have more neighborhood children around. One of these children is an older child with Asperger's Syndrome. I was supervising the little group of children, watching their game. It had something to do with farmers and bunnies, and chasing each other, and being tossed into a stew pot. It was really amusing. Then Joey came home. Joey didn't understand about the rabbit thing. He reverted to the little game he's been playing this week, where he pretends to have a pet mouse in a cage. Our aspie neighbor didn't miss a beat- he was the farmer, the other kids were rabbits, except Joey was a mouse, no problem. The game continued, but it became clear that Joey couldn't figure it out, and in the end, though he was in a swirl of children, he was very much alone. Attempts to get him to join the game were met with blank looks and confusion. Even trying to shift the game to meet his own didn't work. Our aspie neighbor wasn't totally blended in, but he wasn't completely isolated, either. He worked with the kids around him, they worked with him to all play together. Joey can't do that yet.

I want to know why. That may seem very obvious to many of you, but for me in the up-close, it isn't. It isn't as simple as being autistic. And why am I concerned? After all, I remember wandering off from other kids at that age, not interested in what they were playing, feeling isolated from the children around me. If he wants to be alone, is that so bad? Yet I can tell you that this is affecting him in ways that need to be addressed. It feeds into the frustration. It is feeding into some psychological issues that are being expressed in negativity. It is heartbreaking to hear Joey suddenly yell out, "I am a STUPID BOY!" every time he thinks he has done something wrong. He wants to join the game. You can see him trying to join in, trying to play with the other kids, trying to figure it out... and giving up.

I've got to pull my brain together and figure out how to help him keep trying, how to help him learn how to do this. We can't give up.