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.

A Day Home

Joey was pretty sick yesterday. About 6am, he started throwing up- but since he hadn't eaten much, it was clear. He felt better enough to get dressed, but then I found him sprawled on the couch as Andy zipped about putting on shoes. No, that was not a child in condition to go to school. I kept him home. Shortly after Andy left, we had another bout of waxing, then the other end of the system became an issue. It was a good call.

We spent the morning watching Wow Wow Wubbzy on my bed, while I poked at a few things, but mostly snuggled him. Then he decided he wanted to move downstairs, so I set him up on the couch, and asked him what he wanted to see. He asked for Little Bear. We did a Little Bear marathon. I found this also interesting- he could watch anything he wanted, and instead of the high-power shows like Looney Tunes which have had his attention lately, he asked for a slow-paced, comforting show, most of the afternoon. I think my little buddy was trying to get some rest.

He was super-glad when Grandma arrived with soda and snuggled him on the couch- yes, a very snuggly boy. We got to sit with a fire in the fireplace, watching our Little Bear, letting the tummy rest and the boy rest... and the Momma rest. I did some picking up. I poked at the laundry. But otherwise, I spent the day snuggling my boy.

I only wish he wasn't sick.

Why Are Mental Health Services Important?

I am glad I am not a set of parents in Arizona today. I am glad I am not the Greens, who are suffering the unimaginable pain of losing their child. I am glad I am not the Loughners, who have likely been struggling to get their child the services he needs, and for whatever reason were unable to do so. There, but for the grace of God, go I.

Yes, we think about it. When Joey melts down and says violent things, we think about it. We could very easily lose him. He could be bullied to death (or worse). He could lose that line between speech and action and do something violent to himself or to others. As we scramble to get others to understand the need for service, the vital nature of those services, the potentially dangerous situations we face, we have these kinds of stories to terrify us into action.

That's not even counting in the autism factor. The autism factor just makes it that much harder to get our child help, because we can't just send him to any social worker with space on her schedule, we need someone who can work with an autistic child, understand his way of communicating and expressing his needs, his unique issues, on top of the angst. We need to find service providers who understand how autism amplifies the issues other children have with anxiety, depression, anger, frustration.

I had an appointment to see a psychiatrist in March, and we were going down the Charlottesville to see them. They cancelled. We haven't managed to get back on the schedule yet, as we sit on the waitlist for a client cancellation. We're not hopeful; it is just too hard to find someone to see these kids, the appointments are too precious. It is insanity.

So today I am thinking of the Greens and the Loughners, and sending them my thoughts and prayers with all my heart.

CNN again!

Our dreams of a school were featured in a CNN blog on the recent $380 million Megamillions jackpot thing.

Unfortunately, we didn't win. Maybe next time.

Life on the Short Bus

I just did my first 'unfriending' on Facebook. And it hurt. A lot.

I don't just 'friend' anybody. If I have allowed you to look at my life on Facebook, I have very good reason for doing so. However, sometimes relationships come to an impasse. Sometimes you have to let people go.

I got a very acrid message from a "friend" about some of my posts about the r-word and short bus jokes. I'll be straight up: not only do I dislike them, flinging about these words and "jokes" are very painful for me and for my family. You have the right to say them. That's Freedom of Speech. But I was always taught that with every right comes responsibility. You have the right to say anything you want- so take care when speaking. Use your right responsibly. You may have the right to drink, even to excess, but not to then drive a car. Someone could get hurt.

In recent testing, Joey passed the fourth grade end-of year tests for math. He's in the third grade. He can recite the birthdays of every family member, including ones he only sees a few times a year (and a couple he never sees at all). He reads dictionaries and encyclopedias for fun and comfort. So why does my son ride the special needs bus?

Well, because he has special needs. He has trouble with expressive language, so has difficulty telling us what happens to him during the day, and would have difficulty reporting problems he may have with peers. If he got upset, he might try to bolt, and the regular bus stop is around the corner and out of sight of the house, and no one is required to be at the stop to meet the children. In other words, he is on there for his safety.

Why would I feel the need to justify the safety needs of my own child? He's on that bus because it was decided he needed to be on that bus. He gets to school. He's smart as a whip and does good work when he's there. How he gets there should be nobody's business but ours. However, we've entered the moment where every year, a new variable pops up about his transportation: his social situation.

See, making fun of kids who ride the short bus is socially acceptable. Flinging around "retard" and "short bus" jokes is common, pervasive, even encouraged by adults. Joey cannot effectively defend himself from these types of jabs, but he feels them. He knows. Those words and jokes have been levied at him, and he's an easy target. And you know what? Even if my child embodied every single thing such jokes and jabs implied, they would be wrong. And you know why? Because my child would still be a fellow human being. Degrading fellow human beings for your own amusement is not only wrong, it's callous and heartless and cruel.

We teach Joey and Andy the importance of treating others the way they wish to be treated. it is a vital life lesson that so often falls by the wayside.

You can say anything you want. Having a right doesn't make it right.