Autism Myths I Get Tired of Hearing

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

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

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

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

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

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

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



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

Thank goodness.

Happy Birthday, Little Man

Where has the time gone?

Last Day of Being Eight

Joey will be nine years old tomorrow.



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

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

Happy Birthday, Little Buddha Buddy.

Bullying, Part II

So Joey has stood up and taken his stand.

Now it's Andy's turn.

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

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

Welcome to this year.

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

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

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

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

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

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

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

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

Standing Up and Saying No

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

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

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

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

Doomsday Averted (We Hope)

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

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

Whatever.

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

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

IEP Weekend

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

It is going to be a long weekend.

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

Disaster.

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

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

My Proud Little Patriot

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

Eval Meetings Just Suck

How did the eval meeting go?

I learned nothing new.

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

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

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

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


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

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

The Big Story of Angry Birds, by Joey

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



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

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

Coming Soon: Re-Eval Meeting

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

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

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

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

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

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

Our Saturday: First Games of the Season!

Alternatives Planning

IEP season is upon us. Run.

You may have noticed we have not had a stellar school year. We started with the disaster summer program, and spiraled into disaster from there. We have been "in the system" seven years now. This is the first year joey will meet none of his goals.

None.

We've had all sorts of promises made about next year, but nothing on paper yet. We have a meeting next week about all the updates to his evals and his testing and that sort of thing. We know what was working for him. We now can say clearly what does not.

Knowing that he thrives in a model offered at another school, is it "adequate" if he only survives in a new model? What if we think is not, in fact, surviving? And what do we do if all those promises are not worth the air moved to suggest them? What if we walk into that IEP and there is no new autism resource person to help for the next two years? Even delaying it a year would be a disaster we would need to reckon with.

If I need to pull Joey out of the school because of his deepening depression and deteriorating mental health, what options do I have for support and education for him? I had started a gameplan for having to do that when we hit middle school. Not now.

Having alternatives is not just about being prepared for the possibilities; there is also something of having a fallback position that strengthens your current one. It is easier to fight a school when you know you're ready to pack up your toys and go home if you need to. There is something to be able to say, "Give him what he needs. If I can dig up these resources to do it, you can do it- or pay for me to" and slap down that plan with the budget and costs, ready to go. Do it, or due process.

We're getting our ducks in a row. It's IEP season.

Bring it on.

Date night? Date Day!

JoeyAndyDad is off tomorrow- a personal national holiday! Woo-hoo! Woo-hoo!

We plan to clean, re-arrange furniture, and maybe have lunch. What, that doesn't sound romantic to you? Lunch, people! Together! By ourselves!

Hey, I have a husband who takes a day off of work to spend time with me. I don't think it gets much more romantic. Plus, I'm going to have something cleaned and new furniture arrangements into the deal.

I plan to talk the whole time, of course. IEP time is fast approaching. Joey sees the dentist again this week. We have baseball and soccer to coordinate. I have some new diet restrictions to replan meals around. And I have a whole day to flesh this stuff out with JoeyAndyDad.

JoeyAndyDad rocks.

The Autismobile is back!

Our new Jade Lady. She seems in pretty good shape, so hopefully she'll last a while.

The testing dance

In two weeks, our IEP team will meet to discuss a variety of testing the team has been doing to evaluate Joey. When we last met, it became glaringly obvious that completing such evaluations had been overlooked by the school. He hadn't been properly evaluated since he entered the system... six years ago. There is a big difference between a 2-year-old and an 8-year old.

One of the section that had been done was some intelligence and talent testing for the gifted program, because I insisted it be done. I was told he didn't qualify. Yes, he was excellent in math and above-average in reading, but his intelligence testing was only 58%.

Right.

How do you test a child with a communication disorder?

I know there are many "non-verbal" tests out there, but we need to consider how those tests are administered and what they are testing, especially in a child with communication disorders. Showing Joey a picture instead of words and then asking him questions is still testing his disability rather than his ability- because for Joey, it is expressive language and processing questions that causes a problem.

How do you test someone who has a problem answering questions?

For many of us, solutions may seem obvious, as many of my readers deal with their child's communication disorders every day, and we fight to get needed information from them. We know how to win those battles, at least some of the time. And many of us know the tricks: rephrase the questions, make the question into an instruction, try a different activity where the skill must be displayed, use visual cues or language to elicit response, give the child plenty of time to process and respond, pay attention to the responses as a whole. I could go on.

Did Joey's test administrator know these tricks? Did s/he use them? To what extent? How much processing time was permitted? At what disadvantage was he put, and still come out at 58%?

And what do with a twice-special child who has trouble communicating?

The Trouble with Books

You may have noticed that last week was Read Across America. And this week is some other reading-encouragement problem. And next week will be another one. And there was one a couple weeks ago. We're a literacy society- specifically, written literacy (as opposed to oral culture), and reading is a highly regarded life skill. Reading, writing, arithmetic. With al the emphasis on this in educational programs, I'm often surprised how little of it my students have when they arrive at college. But that's for a different blog.

Joey reads. There is no ifs, ands, or buts about that. I would go so far as to say he is hyperlexic, reading far above what he can understand. Trying to figure out what he can understand is highly problematic, as he has processing difficulties that make answering questions a huge challenge. I have learned to listen for comprehension in many ways, in many observations, many of which his current teachers have yet to understand or notice. With that kind of difficulty, I'm not too fussed about him having a B on his report card for reading, as those report cards throw him into the general stream, and that means he's above-average/strong even among the whole of his class peers. I'm a little fussed because I don't think it tells me much about his actual reading and comprehension skills, though.

The real problem, however, isn't evaluating what he can do. It is getting him to do it. Joey hates to read.

No, that's not exactly right. Joey hates to read stories.

He loves reading dictionaries. He's had a couple of books he reads, but he reads them a couple times, and then he's done with them- I suppose he has the story memorized in his head, so why read them again? Sometimes I can get him to read a science-fact book. Reading history, narrative, stories? Pulling teeth would be easier.

There are a number of problems with stories, especially fictional stories, that made them not fun for Joey. The whole narrative sequencing thing is trouble. Being able to remember what order events took place so that they make any sort of sense is a challenge. With no reference to reality and immediacy, the story sequence loses meaning.

Joey doesn't connect with most narratives. WHy should he care what Fluffy the Bunny did or said? Why should he care that Sally and Tommy went to the store? The store isn't one that he's ever seen, he's never met Sally or Tommy. Its just a jumble of strangeness with no connection to him or relevance to his life. He sees nothing of interest there.

I don't think Joey is able to form images in his head to see the story unfolding, either. This is something many of us do, as we hear the words of a good book. Most picture books are too abstract for Joey to follow the illustrations, and he takes one glance and has them, so that he spend no time exploring them. The information is recorded and catalogues and done. Using that catalogue to create new pictures is not something his brain seems to do.

The definition of "cold"? Excellent stuff. Useful. Catchy.

We tried mysteries like Encyclopedia Brown, trying to give him connections to characters and a puzzle to solve. We tried Wow Wow Wubbzy books, thinking his favorite character might intrigue him. We've tried science readers, picture books, chapter books, books in a series he caught any interest to at all.

Joey once said that reading hurts. We don't know what that means. Is he in physical pain? Does it hurt his feelings to be nagged about a task he doesn't enjoy, or finds useless?

His teacher was so excited last week when he voluntarily read a book for her, she actually emailed me with the news. A few months ago when he voluntarily read a book at home, I emailed her just as excited. They are email worthy incidents because they are so rare.

I am thinking about getting hold of some encyclopedias for Joey. Not kid ones, real ones. I want to see if he finds them interesting, like his dictionaries. One must remember the goal: we learn to read in order to gain access to knowledge. Not everyone is interested in social relationships and history; some want just the facts, please. If he'll read them, I'm all for it.

Spread the Word to End the Word: Yes, It Hurts

It is March 2; the day we spread the word about how hurtful the word "retard" can be. It is always startling to realize how many people think Joey is retarded. Not long ago, he would have been labeled mentally retarded, and the efforts to educate him would have been curtailed, because it would have been assumed he couldn't learn. Not long before that, he would have been excluded from school altogether. Even now, trying to get people to understand that Joey is intelligent and wonderful is all too often a challenge.



All too often, we have moments where this hurtful word comes into our lives, and the need for more awareness, more understanding, more acceptance, more true diversity comes blazing up and smacks us in the face. Parents whispering at the spelling bee. Kids on the playground. People in restaurants, in museums, in malls, in parks...

The insistence to clinging to this horrible, hurtful language can be fierce and vicious. The violence of the response to my request for respectful courtesy increases the pain exponentially. It is one thing to be thoughtless and ignorant. It is quite another to know you have hurt someone's feelings, and have your response be that they need to shut up, or that they even deserve to be hurt. People treat their dogs better, and look upon them with more respect, than they sometimes look upon my son. My brilliant, loving, generous, intelligent, wonderful son, who tries with all his heart and soul to be a good friend to all and sundry, every day of his life.

If you still use this word, please stop. For respect of my son, for those who stand with him, and for any who are meeting their challenges the best way they can- including you- please, let this word fade into oblivion. We have so, so many more we can use, that are far more appropriate, and far less hurtful.

We have freedom of speech in this country. Use your freedoms responsibly.

Follow-Up: Toaster Friends

So I got a note from Mrs. C. Remember how she left the question box up in case anyone else had questions? Well, apparently someone put a note in the question box.

It read: "Joey IS a good friend!"


Toasters and hair dryers. They can live in harmony.

Many Angles

One thing I love about friends and friendship is that we don't always agree. Connecting with people, for me, is about having new eyes to look at the world and new views of experience, and sharing them. I don't mind if we disagree, even on some very big issues. There is nothing so much fun as having involved conversations where I present my evidence and views, and get to hear and see someone else's, even if I don't agree.

Apparently, I am very weird.

I have some really excellent, intelligent friends. I love to talk about religion, and politics (though that is harder for me, because I always feel like I should more information). If we vary so very widely and vehemently that it would cause a problem, I'm probably not friends with you (for example, I don't believe you have the right to kill another person for any reason, though I will tolerate a difference in opinion as to defining "person"- but you probably aren't going to change my mind about my own definition). It sometimes takes me by surprise that others are shocked that I don't agree with them, or see the world a they do. For example, I was having a conversation with a friend the other morning, and she suddenly interpreted something I said as a personal comment. When I thought about it, I realized how I said what I said could very well be taken personally if you were taking the whole conversation very personally- and I apologized. I didn't mean it as personal, and I didn't want to hurt my friend's feelings; I just was trying to get a good look at her point of view, since we have very different political views and values, and she has a lot of information about her views that gives me something to think about (after all, media outlets all have their biases...) But I was surprised to realize that to her, it was personal. To me, it was just a discussion of possibilities, problems, and various possible solutions.

Religion is another topic I love that gets me into trouble. The fact that I am religious is potentially offensive to some folks. The fact that I don't take any religious narrative dead-set literally is very offensive to some other folks. Religion, by its very nature, tends to be interpreted personally. Take my post about how I believe in Santa Claus. What a variety of responses, opinions, and attitudes I got, and not just in the comment section! My head spun, especially with how personally so many people took the whole post... which missed the whole point.

To me, such conversations help get you thinking. It allows for connections, weaving thoughts and information together with a focus on a topic or hypothesis. To draw on a myriad of sources, thoughts, facts, and observations is the whole point of having discussions. You can't do that if everybody agrees with you all the time. Well, not very well. How would you really learn anything?

A Good Copy

Joey is studying animals at school. He was very fond of "herbivore", "carnivore", and "omnivore" the day I went to observe him at school. They now have moved on to include adaptations: hibernation, migration, camouflage, and mimicry.

One way they help the kids learn this stuff is to have them make "flip books." When I went in to give my little presentation, some of the books were posted on the wall. Here is Joey's:



Translation:

Hibernation*****Migration***** Camouflage*****Mimicry
***Bear**********caterpillar*****rattlesnake****Wiley Coyote

A Big Welcome: Hello, Doughnut!

My mom has a new cat. He showed up at the house and just kept sitting on her porch, staring in. So one very cold night, she decided to let him in. And fed him. And that, my friends, is how you adopt a cat.

His Majesty immediately took charge of the catless house and made it his own kingdom. So Mom asked Andy what his name should be. And Andy came up with the best thing he could think of: Doughnut. And that is what happens when you ask a 6-year-old to name your cat.



He now has thoroughly installed himself in the house and in our hearts. So welcome, Doughnut. All hail the King.

Answering the Big Questions

So today I put a toaster and a hair dryer into a duffel bag and headed to Joey's school. I think it went OK. The room was both Joey's inclusion class and his self-contained friends, minus Joey and his friend D, who is also autistic. We talked about toast and drying hair and the fact that Joey is learning about toasters just as they were learning about hair dryers. We talked about the fact that Joey was born a hair dryer, and that you can't turn toasters into hair dryers or hair dryers into toasters, that hair dryers are not "sick". We talked about communication, and anxiety, and things Joey doesn't do well that his classmates think nothing of doing, and things Joey does well (en chorus: "MATH!"), and how one might cope with anxiety and fear when one cannot speak well. We talked about Joey's need for consistency and predictability, and why he might not like sudden movements or loud noise. We talked abut echolalia and ways Joey copes with his world using sound and behavior. We talked about how autism affects Joey (such as speech, movement, and being able to make friends), and how it doesn't (such as intelligence and desire to make friends). We talked about how important they, as Joey's friends and classmates, are to Joey. We talked about why he is good at math and spelling and video games. We talked about why he sometimes needed a break away from people or in a room with a computer. We even had a young lady decide she was curling iron.

One of the Big Questions was "Does autism hurt?" It isn't a question I have a ready answer to. I don't know the answer. Does it hurt? How do you define "hurt"? Does being overwhelmed and uncomfortable "hurt"? Does constant frustration "hurt"? When Joey processes sensory stimuli differently, it could very well hurt. He talks about not liking to read because it "hurts." I didn't give a straight answer, but instead talked about ways Joey may feel things and understand things differently than other people. We talked about how it might feel to be overwhelmed all the time. We even talked about what "overwhelmed" means. We talked about how Joey uses language and words, and what it could mean when he says something "hurts." It isn't a yes or no question, really.

One of the kids asked if Joey took medication. Mrs. C and I explained that Joey does not take medication for autism, he takes medication for anxiety; that is, he had medicine that keeps him from feeling scared and overwhelmed all the time. Another question was what happens when he doesn't take his medication; and we noted he would be grumpy and anxious, so they would likely notice. However, most people feel grumpy or anxious sometimes, anyway. But it is a hard question to answer; how much do you reveal about Joey without him knowing you are telling people? What will third graders do with this information? Will they tell him to take medicine every time he gets grumpy?

The the biggest question was what to do about all the unanswered questions. I was really pleased that the kids were all very interested in Joey, from the Big Questions to little connections, like asking what video games Joey plays and does he have a Wii? Joey is important to these kids, just as they are important to Joey. And seriously, that rocks.

The plan of the Day: Talking to Joey's Class

Today I am going to talk to Joey's class about autism, an idea I suggested after thinking about Mom-NOS's great classic, Hair Dryer Brains in a Toaster World. I got the questions the kids offered this morning, so I don't have a lot of time to prepare and think. I hope my talk with Joey's class goes even half so well.

We are a very small school system. In fact, there is only one school per level. We have one lower elementary, one upper elementary, one intermediate, and one high school.The kids that Joey sees in class today are likely the same kids he saw for the last three years, and he will still be looking at them nine years from now. I was surprised to find how many kids did not know Joey this summer; or, perhaps I ought to be more accurate there. Everybody knows Joey. Not everybody has had to work with him in their classes, or are familiar with his differences. Since he is not in the mainstream classes right now, even fewer are getting to know him and learn to accept those differences. It is likely at this point that Joey will spend the majority of his school time in "inclusion" classrooms, where he will have access to a special education teacher all day. The majority of those kids are hand-picked to be supportive and benefit from that environment as much as the special needs children. Therefore, it is likely we will be seeing this particular group of kids for a long, long time.

I need to get this right.

I'll keep you posted.

Edit: I almost forgot, here's the questions I got:


1.) Why does Joey say "Infinity and beyond?" (I corrected misspellings!)
2.) Why does Joey want to run out the door? (2 asked that)
3.) How does a kid get autism? Is it because when they breathe their
brain doesn't get oxygen fast enough?
4.) Does it hurt them to have autism?

Downtown Adventure: Another Day

You may remember last spring I took the boys to see some of the sights of our town, including the Hugh Mercer Apothecary, and was very pleased to find the docents patient and willing to help accommodate us. The boys were off on Monday, so we fished about for President's Day stuff to do. Joey was not in a good mood for a long ride to Wakefield, and Ferry Farm was closed (why is the farm where George Washington grew up closed on President's Day? I have no idea). So I settled on another go at the apothecary.

Unfortunately, this time wasn't so pleasant.

When you enter the apothecary, the front receiving room includes a wall of medicines and a counter of jars filled with interesting herbs and such. The tour starts in the next room, which was apparently the doctor's surgery. There may be a couple more rooms in the tour, but I don't know, we've never gotten that far. They spent a very long time in the surgery, explaining what medicine was like in colonial times, quite graphically. It's a pretty nice little presentation for adults and children who can easily sit and focus.

When we arrived, the tour was well underway with a room full of children in the surgery. Since you have to pay for the tour ($5 per adult, $2 for kids 6-12), I thought it a good opportunity to let my guys try to settle and see if the tour would be a good idea. The docent was not the one there before, and she immediately started badgering us about how it was a paid tour and much to the effect of "pay up, lady." I explained that I would pay in a minute, as I was trying to get a handle on my guys. Andy was asking questions about the counter, Joey was asking questions about the furniture, and I didn't particularly want either of them running about the room while I was trying to get money settled. Both boys were being pretty good about their voices, so I didn't really see why the woman started fussing about us being in the room, but she did- "its a paid tour, and you're disturbing it" sort of comments. Why isn't she going to let us wait for the next tour, since it was a paid tour and already well under way? I wondered.

I started having my second thoughts, and quickly explained that my child was autistic and I wanted him to get used to the room for a moment. I think had the woman given us a couple of minutes to settle, we would have been ok, as I had gotten them both sitting on a bench and was working to determine if this tour was going to be something we could handle. But she didn't, so Joey picked up on the mood and decided he was done. He announced his wish to leave in a fairly loud voice- one that I would readily say was disruptive to the other room, where they were still going on about pulling teeth- and I was by now quite sure we were not welcome. Andy wanted to stay and ask more questions about the herbs and hear the tour, but we weren't getting the minute we needed to pull Joey together.

"Come on, we're not welcome here," I explained to get him out the door. Now the woman started saying things like, "I was a teacher for 29 years and know something about..." and "I'm just trying to help you..." and "You don't have to be so nasty about it!"

A teacher for 29 years? And you don't know an autistic child when you see one? Or offer to help accommodate a disability instead of running your mouth? This was getting worse by the minute. I finally got Andy gathered and out the door, and Joey made a break for the library just down the street.

Now, you'd think once I had removed my children from the situation, it would be done. She had her silent front room back, but was she happy? No. In her full colonial costume, this woman actually came out and followed us a way down the street, making similar comments about how rude and nasty we were being and how "some days it just doesn't pay to get out of bed in the morning!" No kidding, lady. You just made it that kind of day for us, that's for sure.

And guess what else is closed on President's Day? The library.

We gave up and went home to play Wii Sports.

IEP Season Comes Around Again

Getting ready for your yearly IEP? When Spring comes around, it is time to be thinking about what goals your child(ren) will be aiming for in the coming year. What is reasonable? What to ask for? How to prepare?

Here are some links to my previous posts on IEPs and preparing for them. I hope this helps.

Quick Guide to the Day After Diagnosis (In case you are just getting started)

The Crazy Season (A Quick Guide to IEPs)

Powerpoint Thinking (Putting together a presentation about your child)

For Stimey (The Rabbit Joke, IEP-Style)

Autism Awareness Month: Resource Links Post

You Are Not Alone (Just a Reminder)

And from elsewhere:

How to Prepare for an IEP Meeting

Preparing for an IEP: Organizing Your Concerns

Three Steps to a Successful IEP

Wrightslaw

Advocating For Your Special Needs Child

And the boys played on

Friday was Early Out. Early Out days often seem like odd, long stretches of lost time. The boys are home early, but getting them to engage in an activity or find something for them to do is next to impossible. They have had their taste of school, they want cartoons (well, MythBusters is the current TV favorite) and video games, but it is far too early in the day. The Witching Hour is often simply extended from one to five instead of four to five.

Hallelujah, Spring weather to the rescue. I tossed them both outside with our Awesome Neighbor to play. They took turns riding Joey's trike. They played in the sand. They chased each other in games. They bickered as boys will do, especially when they are 6-10 years old and all of them are powerful personalities. Another friend and his mom were taking a walk, and joined us. I had four kids playing in my back yard, being boys.

It was totally awesome.

There was no denying that two of them were autistic, and the other two were hyperactive. But holy cow, they just played like any other group of boys. The other mom and I sat on lawn chairs on the patio and played with our new phones (I have my new iphone, she has a droid), swapping app suggestions. And the boys played on.

Awesome Neighbor had to go home. JoeyAndyDad came home. We sat in lawn chairs together, talking about phones and apps and geeky stuff like that. Boys had drinks and sand and the tricycle.

And the boys played on.

Triennial again

We just had our second triennial. Has Joey been in school so very long? It was a fascinating meeting. We had all four of Joey's teachers there, the speech therapist, my private occupational therapist (the school one didn't even try to come!), and the school psychologist. Oh, and me.

We started with classroom updates. Joey has a regular ed teacher and a special ed teacher in his inclusion room, who spoke about his improvements, his setbacks since Christmas, what he is doing well and what is still a struggle for him. He is spectacular in math and spelling, not so much in reading. Since Christmas, he has been able to be in reading group only a handful of times due to behavior and sensory problems. (Remember this was a child in a reading group in a REGULAR classroom last year). It has been interesting watching these teachers realize what Joey can do, and how he is actually disabled. The one teacher has figured out that Joey's reading comprehension is not the problem, it is his ability to communicate what he comprehends, and to answer questions. She spent the meeting correcting folks every time it was mentioned that he was having trouble with reading comprehension. "It's not the comprehension- it is what he is able to communicate that he comprehends!"

He is doing better with noise and assemblies- the bigger problem is boredom.

Joey spends a good part of his day in self-contained, and that teacher is new. There was a whole different attitude towards teaching from that facet of the team. Mr. T takes his kids as they come, and works to make sure they are learning. He seemed surprised at some of the problems and concerns in the inclusion room, which he simply saw as not a problem, but just facts of the child. Joey likes to walk around and needs movement. The inclusion room attitude is, "how do we get him to sit down?" The self-contained attitude is "how do I give him opportunities to move?"

Then we went to look at the evals- except there weren't any. The last speech eval was done by my private therapist, and we were about to renew it when the office was closed- so it was from 2008. The last developmental? 2005. We had some info from his gifted and talented screening which placed him in the superior range, but the intelligence test they gave him- and they only gave him selections from any of the tests- only put him at 58%. The math part? Only "high average." Well, we knew those tests were inaccurate.

The speech therapist stepped in and gave an overview of her experience in lieu of a formal eval. It was interesting to hear how different her assessment of concerns were from those of the classroom. The classroom teachers noticed trouble with communicating understanding of the feelings of others, ability to express narrative sequence, and expressing the main idea of a passage (Joey tends to place equal emphasis on all the details instead of being able to capture the larger picture in reading a passage; I understand this is pretty common in autism). The speech therapist was interested in his struggle to make predictions, create or understand narrative, or answer complex questions. Sounds like IEP goals to me...

Then my private OT stepped in with her eval, which was from the spring, and yet still a good snapshot of Joey and his abilities for functioning. Funny what info you can get from appropriate evals done in a timely manner.

We decided to update all the evals, do some cognitive testing, and have him take the complete tests provided by the gifted and talented people, even though he "doesn't qualify"- we want to understand why these tests are not accurate, what skills he does have, and how to support and teach him to help them be accurate, with the goal of having him graduate with a regular high school diploma, not a provisional/special ed one. He needs to be able to take SOL tests to get a "real" diploma (what? a special ed diploma is a piece of pity paper? Do people have any idea how much work these kids do?)

Then came the good part.

My OT piped up to ask a few questions. Or drop a few bombshells. Whichever.

Since Joey needs to move to learn, he will do it whether given appropriate opportunities to do so or not. What appropriate opportunities were being provided? Math is done in centers- plenty of opportunity to get up and walk around. Reading is done seated in a group... no wonder he has a harder time there! She provided some suggestions, such as allowing him to read standing up. Mr. T apparently was doing that already, and hadn't really thought it odd that Joey likes to read standing up. I remember when he had to stand up to eat. (I'll never forget it, as we were accosted in a restaurant once because of it!) Yep, different attitude.

Then we discussed Joey having communication alternatives for when he is excited, angry, frustrated, upset- times when he is likely to lose his ability to access language. This is a sticky point for me. I have a terribly difficult time getting others to understand that just because Joey is verbal, doesn't mean is he is verbal all the time. His ability to access language and use it effectively plunges when stress and anxiety come crashing in. I think that is true for most kids, but for Joey, it is an extreme. We talked about cards and items he can take with him from classroom to classroom, and items that can be copied for each classroom. He likes to carry things on his head. The notebook made for the self-contained was being used in the inclusion. Many of the interventions we had developed had faded into the background and needed to be reinstated. When Joey doesn't need a certain support for a long while, it can be easy to forget to leave it in the toolkit- but when he needs it, he needs it NOW. Our OT also suggested training Joey to use a card to indicate when he is processing and needs extra time to respond. It can take Joey up to three minutes to process through information to the point he can answer a question. Teachers expect answers within 5 seconds. That is a huge gap, and there is concern he is being upbraided for not listening or responding when he is processing. The card would be cue to the other person that Joey has heard them, and needs time. Apparently, our OT went to a conference with an autistic woman who used these cards to great effect, and she instantly thought of Joey.

Then came the Big One. We know Joey is gifted in math and spelling... so what gifted programs are available for him?

Gifted programs are not made to be accessible. They assumption of being "super-able" pervades our attitudes, and that of society. The gifted program is designed "for kids who are generally gifted... kids with pocket talents are handled through differentiation." In other words, the program is designed for super-abled kids, not kids with specific gifts. Hmmm.

I doubt I will fight this battle, though. The gifted program is another pull-out, another transition, and not designed to meet Joey's needs. It is another set of people to train, who probably have even less interest in learning what is needful or dealing with disability in their program. A program where kids are given a project and just told to "go for it" would be an anxiety-ridden disaster for Joey at this point.

Yet the issue remains hanging there. Why can't someone like Joey participate in the gifted program, when he is clearly gifted? Why is he cut off from that social circle? And how can that be addressed? And if boredom is a problem, how is that being addressed?

Am I Really This Old?

One of my friends from high school is going to be a grandmother today or tomorrow.

A grandmother.

Wow. My kids are still in elementary school.

This is Joey 2011

Thinking Forward

It's February. Time to start thinking about what Joey will be doing this summer.

Whether the school wants to or not.

Report Cards: Night and Day in Usefulness

It was report card day Friday, but I forgot until I opened the bags this morning to pack lunches and, hey, look, report cards! Which for us are report papers. But whatever.

Andy's "grades" are based on the Satisfactory System. It works like this:

S- Satisfactory.
P- Progressing with Effort.
N- Needs Improvement.

Apparently, this school system assumes kids (or their parents?) can't handle real grades until third grade. Andy got all S reports this time! Even in handwriting! Woo-hoo!!!

Joey's reports ar a little more complicated. First, we have the grade report. This mixes real grades with the Satisfactory System grades. Academic subjects get real grades. Other benchmarks, such as social skills and specials (music, art) get Satisfactory System grades.

How accurate is it? He has a C in science and a B+ in spelling.

Excuse me? The boy who won the spelling bee has a B+ in spelling?

That probably has more to do with the N in "turns in work on time" than his actual grasp of the subjects. Or his N in "self-control." Which means that the report card isn't very useful for gauging much, other than, hey look, my kid is autistic and needs support in turning in his homework! Really? No kidding!

The other part of Joey's report is his IEP report. Not much has changed. Again. Which really does make me angry and continues the frustration. This is ridiculous. It is frickin' FEBRUARY, people. This time, no one bothered to put in comments except the speech therapist. We have another "no instruction" for dealing with teasing and bullying. I'm sure the excuse will be "it doesn't happen here!" I now think the only answer for that from here will be, "and what have you observed during PE and recess? How much observation has been done? And why were people laughing at him at the start of the spelling bee? How have you helped him to cope with people laughing at him in large groups like that?"

Middle school is closing in fast. And the more "no instruction" I see on goals to help him cope with the social and emotional onslaught of pre-teen angst, the more I prepare for a few years of homeschooling.

Things That Make You Go "What?"

I'm sorry, I can't hear you.

Only according to the ear doctor- the one in town who is supposed to be super-good- I can hear you just fine. Except that I can't seem to hear. Is it hair in my ears? Or random wax? Funny, I was in the ear doc's office because my family doctor eliminated those things already. But my audiology tests came back perfectly normal, so obviously I can hear, right? Right?

What? I didn't catch that.

I took my mom with me. I'm glad I had a witness, or I would have thought I was crazy. The ear doctor sure seemed to think I was. The only suggestion he had was that maybe I was having trouble with "background noise", an auditory processing issue; but he didn't want to give me that test, because hey, what could we do about that, anyway?

What? I can't hear you. Can you repeat that again?

I'm not saying there isn't some possibility for this theory. I thought about when I have the hardest time hearing. After a summer of fluid in my ears (which the ear doc says couldn't have been fluid in my ears, because it is really rare for adults to have fluid in their ears, it must have been hair or wax or something like that, even though I had a doctor check out my ears and apparently my ear canals are particularly clean), I started having trouble. During, in fact, but I attribute the during to the "fluid" (which, by the way, hurts, and can cause my ears to become sensitive to high-pitched sounds like boy squeals. It was a long summer). My mom noticed it. She found talking to me in the car, I sometimes didn't even know she had spoken. My students noticed it. They have to repeat themselves a lot, which they find annoying. When my doctor checked my ears, I think she thought I was being silly, too, until she tried to tell me something while she washed her hands, and it was obvious I didn't hear her.

What's the connection there? Sure enough, noise. The staticy white noise: the rush of the road and wind in the car, even with the windows up, plus the heater blowing. In my class, I am video linked to another classroom, and for reasons unknown, they placed the microphone next to the heater/air conditioner, so that there is a constant sound of blowing air or static in my classroom. The sound of the running water with the aerator. Like TV snow.

It may not explain the occasional pain, why it seems to come and go (I have days I can hear better than others, and sometimes it is one ear, sometimes the other, sometimes both), or why it suddenly appeared. But it is interesting as a theory.

So, the good news is that apparently, my ears work. The bad news is I still can't hear you.

What?

The Meaning of Hugs and Kisses

His lips brush my cheek, ever so lightly, yet with careful deliberation. The child has appeared from nowhere, materialized into my space.

"You're my sweet goo goo," he half-whispers, a sort of stage whisper he has acquired for these kinds of moments. Perhaps he means to whisper, but is instead using the tones demonstrated to encourage him to whisper in certain contexts. I could go into the origins of the odd intimate-title, but it would be pointless, the origins have no meaning into his use of the words now. He pauses for the expected and anticipated reply.

"You are my sweet Joey-Boy," I complete the exchange with a kiss on his cheek. He rubs his face on mine, nose-to-nose, cheek-to-cheek, then brushes the lips again.

"My sweet goo goo," he repeats. He leans his head against me a moment. Then he is gone, back to play his Poptropica or with his Toy Story figurines.

In the midst of anxiety and craziness, Joey has also hit a lovey-stage. He wants lots of hugs, lots of attention, lots of closeness. He is doing this to one of his teachers, too. As Andy has hit the "Mom-leave-me-alone" stage, having Joey to smooch on is lovely; but like so many other shifts in behavior and attitude, I worry. Is he feeling lonely, or left out, or needy, or somehow downtrodden? Does he need the deep pressure, or the attention, or both? Is this another sign of depression?

I try to make no snap assumptions, but try to give him what he is asking for- lots of hugs and kisses, lots of assurances that he is still a sweet, handsome, intelligent person. I take the opportunity of having him so close to my face to give him specific praise ("I was so proud of you for getting dressed so nicely this morning!", "Thank you for throwing out your chip bag, that is so helpful!", "I saw you got a 100% on your math quiz, great job!") I let him run his hands and face over mine, an exploration that he has delighted in since he was a babe. I so desperately want him to know he is so very loved, so treasured, so wonderful.

I want him to carry that understanding with him even when this lovey-dovey mood is gone. I will miss it.

Happy New Year: Year of the Tooth Fairy!

It's the Year of the Rabbit! I hope it means lots of ice cream, not lots of lost teeth.

Sensory Overload and the Red Cheek Wonder

Everyone knows Joey gets red cheeks. One of the signs of him going into sensory overload is that his cheeks flame with color. It isn't just too much of everything everywhere; there can also be an intensity of sensory input that can send him into Red Cheek Wonder. Combined with his naturally pink cheeks, he would be an excellent poster child for Campbell's Soup.

He's just like his Mom.

I have to be careful about going to movie theaters. The overload can give me a high fever, and almost always gives me the cheek flush. The other thing that drives my blood pressure to flaming? Meetings. Trying to listen to not only what is being said, but what is being said between the lines, what is not being said, what is being meant but not actually said, the implications of the ideas being said, especially in a meeting where all those things can have consequences for my Joey or my Andy?

Overload.

So I sat there this evening trying to pretend my cheeks weren't burning and my temperature was not going through the roof, listening intensely to the changes being proposed for the middle school here (where Joey will have to be in two more years). Then I got in my little tweets into ears about the miscommunications about Joey's therapist coming in for observation, and that I would like to come in for observation next week. I sometimes wonder if others can tell when I am in overload, or if they just assume I have very red cheeks like Joey all the time. I bet they don't know that the red cheeks are a sign of overload. They probably think it is something else, like being nervous or not being truthful.

I wonder how often Joey goes through his days as I went through this evening, trying to function through the overload, trying to follow everything and process it without being fully overwhelmed. Only he has processing issues I don't think I have, making it that much harder for him to get through.

Through the Cracks

There is definitely something wrong in a society when people with disabled children have to choose between paying their rent or paying for the care of their child. I have a couple of friends in this catch-22. Technically, so are we, but we manage to bring in enough to not have such a touch choice. The people I know really caught in this crack are children with very severe disabilities, where the children require a lot of medical care and equipment as well as therapies and other specialized care. The way the system works, they can't make any more money- one parent needs to be home for the child(ren), and if they make over a certain income, their children lose important medical support and services, such as Medicaid or Social Security. Parents self-train because they cannot afford nursing or to hire care, some have to homeschool because the special education system takes too long to fix serious issues that threaten the health and education of the child who is already severely challenged and endangered. Respite care costs money. Wheelchairs cost money. Alternative communication costs money.

I certainly understand reserving government assistance for the neediest families. The problem is that no one in the private sector picks up the slack. The system is made is actually create needy families. It becomes a vicious cycle for families who make too much to qualify for assistance, but not enough to pay for both household expenses and therapy. What happens to them? They have to move back in with their parents, if they have that resource. They have to quit jobs to qualify for the assistance, instead of continuing to support themselves as much as they can and stay off other assistance programs, just getting the assistance they actually need. They drain any saving they have, trying to keep their children off those same assistance programs as much as they can. They spend their days being nurses, caretakers, lawyers, advocates, social workers, coordinators, therapists, educators... because no one can afford all of these services, and yet they are all needed because of the way our society views and treats people with disabilities and their families. Even with families who step up to the plate, no one wins a game on their own.

The attitude of the general public seems to be "sucks to be you." The idea that someone might need assistance means that person is somehow less, somehow a parasite. How very Victorian of them. Instead of being grateful for good fortune, opportunity, and talents, too many in society are spiteful. We need to advance as a society, and look at the basic ideas that move societies beyond the every-man-for-himself attitudes of might makes right: that we are all in this together, and none of us make it out alive. When we stick together, and support each other, everyone's needs can be met and everyone can contribute. Everyone has talents and challenges, and we can all do the best we can if we all help, and don't leave anyone shouldering their lot alone. We can't just assume those who need help are somehow not as good as those who have the opportunities to not be in need. You'd be amazed how quickly those tides can be turned, and the one who thought themselves self-sufficient suddenly and unexpected becomes one in need.

It's a simple rule, folks. Treat others as you would wish to be treated. And it works wonderfully well.

Changing the Rules

Well, the short of it is Joey was totally awesome. He stuck it out, spelled his words, and would have won the whole thing if they didn't change the rules for the last round. But, they change the rules for the last round, so he wasn't the Grand Champion. He totally, totally rocked the house.

The long story... well, it was one of those experiences that have ups and downs and odd moments and great moments. This was the third grade spelling bee, so all the third grade came to watch it, and most of the parents of the kids actually in it- 24 of them (two from each class). For their "practice round", each child stood and spelled their name. Most of the kids got up, precisely spelled their name, and sat down. Joey did this Joey Style, which was a lot more fun, with a lot more awesomeness. He got up there with enthusiasm and relish.

And then the whole room laughed. Most of the parents laughed because, hey, he was cute. But the laughter from the kids, that was different. You could tell by the little undertow of jeer and imitation, that there were an awful lot of those kids laughing at him, not with him. All the talk about teaching kids about diversity, about respect, about creating supportive environments... these are the kids Joey had to deal with all summer, or the ones that didn't know him at all. Some of the parents, who didn't know me from a turnip, whispered something about wondering why "that kid" was up there. I knew they wouldn't be saying such things an hour from then.

By the time Joey was the only one to spell his word correctly of the final four, those cheers were for him, not at him.

But in the final round of a spelling bee, the rules change. When you spell your word correctly, but everyone else does not, you then have to spell another word, or everyone else gets to come back and have another round. Unfortunately, Joey's word was "dignified," and he mis-spelled it completely (it was not a word he had seen before, it's not on the spelling word lists). Everyone got to come back, and this time, he was discombobulated enough to mis-spell the next word ("salute"), so he was out. The two kids who went on? They both mis-spelled their next words, before finally the one child spelled two words correctly in a row and was proclaimed the winner.

Joey was a little upset, but I brought a prize to reward him for even trying the bee. He ran at first, saying he was a loser, that he lost. Mrs. C got down and looked him right in the eye and told him that he was winner, that he was the best speller in the class, reminded him that he had spelled the words correctly when everyone else had missed theirs, and told him how proud she was of him. We sat with the other bee contestants and let him have his present, and all those kids were cheering him and saying things like, "you know you really won, Joey- you were the first winner!" and telling him how great he was. And his class? They lined up and everyone insisted on giving him a high-five, and cheering.

Parents stopped me in the lobby and the parking lot to say, "To us, he was the real winner! He was the one who really won that spelling bee!" If nothing else, he earned his respect, and showed a lot of his peers (and their parents) that he was no pity participant, but a true contestant; one who had, by all rights of the rules of the majority of the game, won. He showed them what true diversity means. We all have strengths. And it is awesome to be unique.

Preparing for the Bee

Joey is going to be in the third grade spelling bee tomorrow. We're really excited. He was in the first grade bee, but we had some miscommunications about his needs, and he got over-frustrated and threw it in the fifth round. The memory made him anxious enough that he purposely threw the classroom bee last year, so he didn't get to be in the second grade bee. So the fact that he's decided to give it another go, that's a big deal- especially with all the anxiety he's had this year. Seriously. Wow.

So I've been trying to help him prepare. Most kids, when they prepare for a spelling bee, practice- well, spelling. Not us. We practice things like sitting, listening, facing a person who is speaking to you. We talked about getting a prize if he spells all the words right. But mostly, he looks at me like I'm insane; you can almost read in his face: "It's spelling, mom. What's the big deal? What's to practice?"

This afternoon, he actually came home excited about it, saying, "My spelling show is tomorrow!" So I managed to say, "That's right! I bet you win it!" He blinked, and gave me one his processing looks, then happily cheered, "Yes! I will win!"

I think he is just now realizing it is a game, and that there is a "winning." I think I might just get something to bring with me tomorrow as a prize, whether he wins or not. Because seriously, he's already a winner for giving it another try.

In Which Momma Realizes Her Boys Aren't Babies Anymore

Though they will always be MY babies.

I tend to do spring cleaning during January. We're not in the middle ages anymore, after all. You get things done when you have a minute to get things done. This year, I am tackling the boys' rooms. We have a bad habit of tossing all the toys the boys have brought downstairs into big bins every couple of weeks, and then sticking those bins upstairs where-ever there is free space, and then they just sit there and the boys pull out the toys they want from them and leave the rest in a jumbled bin in the floor. The floorspace is getting filled up, and the boys are getting older. It was time.

I have been pecking at i, rather than sitting to it all at once. I sort the toys into Actively Played With Toys, Toys to Go to the Basement, and Baby Toys to Donate. I cleared Andy's closet of baby blankets and oddments so he can use it for his own things. The last of the Baby Stuff is being swept away.

When I was pregnant, my mom warned me that babies grow up, and they grow up fast. I knew it would be a blink of an eye. I had no idea how fast eyes can blink. I remind myself that Joey is actually growing up slower than most children, and it makes me want to hug moms everywhere, who have their children grow up faster than anyone can ever imagine.

My baby was reading my squirrel post yesterday, and he noticed my avatar icon. "Why you have your hand up there, Mom?" he laughed. I told him it was Uma. He didn't remember Oobi. It was his favorite show. So fast. So fast.

I took the old art down from his closet door. The closet door is coming off; Andy's room is quite small, and that little extra floor space will actually be a big improvement. I put the old drawings and pastings in a little box. There a cow, and a spider, and a sheet of dinosaur stickers that were rewards for training that he adored. He wants Star Wars posters now.

I put Joey's Toy Story toys in one bin in his room. I sorted out the Cars toys, but I am wondering if they go in the Basement pile or the Donate pile. Cars with eyes are apparently for little kids. What does Joey play with? Play for Joey is not usually like other kids. He likes wooden spoons, writing tablets, and sticks better than dolls or toys. But then, he and Andy played Toy Story all day yesterday, with his Woody and Buzz. Scripted pretend play is still pretend play. I leave the Cars stuff a little longer; Andy might still want to play with them, and having him go into Joey's room to get them may encourage him to engage Joey in the play. Good for both of them.

The Fisher Price bus? Donate. It's a wrench to put a bus in the donate box, as Joey loves buses. However, it is not Bus. It is a baby toy, a toddler toy, and it is still in decent shape. He hasn't played with it in ages. He's more into space stuff now. It is time to move on.

My babies just aren't babies anymore.

Happy Squirrel Appreciation Day!

Because we should always appreciate our small, furry friends.

*There are 365 species of squirrel. Maybe we should start a "Squirrel Species Appreciation Day" with a new species every day. It would make an awesome desk calendar.

*Once a female squirrel breeds with a male, she never breeds again with that male.

*Squirrels do not leave their nests at night.

*Squirrels sharpen their teeth by chewing on sticks.

*Squirrels laugh. They also use chirping sounds to indicate a wide range of emotion and alarm signals, in conjunction with tail movements. If a squirrel is chirping very fast and flicking their tail, it is laughing at you.

*When a squirrel finds a nut, they open it with their teeth, then rub it on their face. This applies a scent so they can find it later- even under a foot of snow.

*When a squirrel's nest becomes infested with fleas or other parasites, it will abandon it and build a new one.

*A squirrel's incisors grow 6 inches per year.

*Squirrels prefer to build their nursery nests in oak trees.

*The average life span for a wild squirrel is 3-5 years.

Happy Penguin Awareness Day!

Did you know:

*Penguins have been around for about 40 million years. The earliest penguins appeared in the Paleocene period in New Zealand. They appear in Antarctica in the Eocene.

*Penguins mate for life.

*Penguins can swim up to 25 miles per hour, though 15 miles per hour is the average.

*There are 17 or 18 different species of penguin in the world. There is debate about whether Little Blue and Fairy penguins are separate species.

*The average penguin spends 75% of its life in the water.

*Early explorers of the Antarctic mistook penguins for fish (and classified them as fish). Penguins are birds.

*Large, dense colonies of penguins are called rookeries. Penguins gather in rookeries to breed.

*There are no natural penguin populations in the northern hemisphere.

*Penguin eyes are made for seeing underwater. They work better under the water than they do in the air. This adaptation is likely due to the fact that penguins feed in the water, hunting fish and krill.

*Most wild penguins live 15-20 years.

Inclusion Attitude: Part of the Dream

"Inclusion is important because children with disabilities gain valuable social and academic skills by interacting with their non-disabled peers."

"It is important to include special education students in the regular education classroom, so they will have non-disabled role models."

"Inclusion helps children with disabilities, because they can interact with regular kids."

It's that little spark of abilism no one seems to notice. The language that hints at something deeper: a sort of slip, if you will. It is always to the advantage of the kids with disabilities to have inclusion programs. We forget there are also advantages to those "non-disabled peers."

A couple years ago now, we had a parent in one of Joey's classrooms complain that one of "those kids" was in their child's classroom. Special ed kids are seen as a burden, a drain on resources and attention for their "regular" and "normal" kid. It is an attitude that must be fought. Until everyone understands the advantage it is for everyone to have inclusion, it will remain a seething issue for the majority of families who do not have kids in special education, who do not understand what special education is or what it is for.

After all, what's in it for their kid?

I know why it is better for Joey to be around his non-disabled peers. Why is it good for those same peers to be around him?

They learn a lot about caring about others. Joey loves the world, and has genuine compassion for others, expressing that freely. If another kid gets hurt, Joey is right there to comfort them.

They learn about accepting differences. This is a vital social skill that often gets pushed aside, especially in middle school, when kids get that urge to be like everybody else. Teach them early. Teach them well. We are all unique, and that is a good thing.

They learn a lot about math. That's right. Remember academics? Joey even helps with academics!

I could go on, but the point is this: inclusion is about sharing strengths in order to meet challenges. Everyone has strengths to share. Everyone has challenges to meet. With inclusion, we all get those strengths, and learn to meet those challenges, often in ways no one expected. We strengthen the content of our characters.

Until everyone understands that, inclusion is under threat, because so many do not understand what inclusion is. They don't see how it is to their advantage, so they assume it is not. That assumption is backed up by media articles on inclusion, which stress the advantages of inclusion to people with disabilities, without noting the advantages to everyone. Inclusion isn't important because children with disabilities gain important social and academic skills. It is important because everyone gains important social and academic skills.