The Blues

Autism Awareness Month is upon us, just on that far side of Easter. With comes the Light It Up Blue campaign, bringing awareness to anybody who is actually paying attention or cares even the slightest bit about why your porch light is blue all April, and no other time.

I have noticed that the autistic adult community is a little torn about Light It Up Blue. There is a gambit of feeling towards it, from antipathy to appreciation. I can't please everybody- nobody can. But will I light it up blue?

Yes, I will.

Changing my light bulb actually started conversation in our neighborhood, especially since I was not alone in doing it. I think some of our neighbors were genuinely surprised to see so many porches go blue for April. They wanted to know what was up. And once you get someone to talk, you can get the reins of that conversation and start some folks thinking.

For me, it isn't about Autism Awareness. It is about Autism Understanding.

Many folks in our town know Joey, and they know he is autistic. Few know what that really means. They are surprised to find he loves to be around people, and loves to talk to people. They are surprised to find he is intelligent and observant. He laughs, he chats, he pretends. Part of the surprise is how many "autism awareness" campaigns teach people to look for kids who are aloof, withdrawn, or even violent. Kids who burst into meltdowns at the drop of a hat, who make weird noises, who flap their hands, who don't talk at all- those are the kids many of these campaigns push into the public eye. Any of these things can apply to a person with autism. Or not.

Seizing a campaign like Light It Up Blue and using it as a tool is an important way to educate the majority of folks out there, who have no clue what it means to be autistic. The majority of folks who have no clue even what it means to care about or be a person with special needs or disabilities. I always go back and think, what were my attitudes and opinions before I knew Joey? How do I get people around us to understand? How do you remove ignorance (the only real was to remove fear)?

If my blue light bulb makes even one person stop and think, stop and ask, stop and understand, then that is one more than had done that yesterday. It's one step beyond just awareness. It's one step closer to understanding being the norm.

Word Processing

"Ridicule. Say, 'ridicule.' Noun. To scorn or mock. To mock means 'to make fun of.'"

Joey has discovered that the vocabulary-building program he uses at school has a website, and he can access words right through "level 12" (I think that means "12th grade")- complete with parts of speech, definition, and even examples. He's delighted. He can now process out all the words he can digest, whenever he feels like it.

"Vain. Say, 'vain.' To think well of oneself. Or to be useless. Mommy, say, 'vain.'"

One of the good things about the program is that it is not spelling-only; it actually pushes kids to improve their vocabulary, to broaden their use and understanding of language. Plus, we can access it 24 hours a day- whenever we need a comforting activity.

"Misfortune. Say, 'misfortune.' Unlucky, trouble. Mommy, today I had a misfortune. See, Mommy? You know what would be the worst misfortune, Mommy? If you died. That would be a terrible misfortune."

I have been listening carefully to the words Joey has been picking to repeat. A lot of them have been... interesting. And negative. He seems to be not only processing words, but trying to process words that make him uncomfortable; something he has done, loud and proud, since he was pretty small. He now has whole sentences to echo, not just the word itself.

"Slay. To kill violently. Slay means 'to kill.' You slayed me, Mommy!"

Interestingly, he is also not always right. He's having trouble with phrases such as "in vain"- which seems to him oddly unrelated to the word "vain." Separating the two is very difficult for him. He's also running about testing us in multiple-choice format. Sometimes he even tells us what the question is. OR what the choices are. Or neither. Rarely both.

"Appall. Say, 'appall.' To cause horror. H-o-r-r-o-r, Mommy. Appall!"

Sometimes he looks up the signs for the words. He seems to think it funny. Or an excuse to get my phone. If he can't find a sign, he runs about finger-spelling the word. He's getting pretty good at finger-spelling... he's getting plenty of practice.

"Rout. Mommy, you routed me. That means you defeated me completely."

At least it's educational, right?
Right?

"Jeer. Verb. To mock. It means to make fun of, and not nicely, Mommy. It's not nice to jeer, Mommy."

No, my love. You keep talking it out, though. Some of us just have to do that processing aloud.

The Meeting Before the Meeting About the Next Meeting

Yep, you guessed it: IEP season is upon us. In fact, it has taken us by storm. And when I say "storm", I mean "seized by the throat and shaken vigorously in a tornado about to crash into a tsunami."

I told our new case manager that our IEP meetings tend to take about 3 hours. She didn't believe me. We're scheduled for an hour and 45 minutes. I have people hired to come to this meeting, and I do not want to have to have a continuance and try to coordinate these people again. Fortunately, they are there for a single purpose: the get Joey's placement right. And that is just one facet of an IEP meeting. Hence, I want to have our ducks in a row for the other stuff, like goals and accommodations. I want those all drafted and ready, so we don't have to have a long discussion about them that takes, say, an hour and a half.

Or maybe I do. Then I can just pop up and say, "And your school can't do all this, so here's a form to sign to send him to Awesome New School. Sign here. Thanks. Have a great day!" And the school folks would sign it and we would merrily be ready for next year.

Like that would ever happen.

What this means is that we- being the teachers who actually care about Joey- and I are trying to work in time to get the goals and accommodations hammered out properly. Or at all. I think its time for an independent educational eval, so we get a better look at Joey's education as a package- and have a clearer view of where he is, where he should be, and what skills he may need support with- including gifted support. We definitely need some notion of what needs to be in this IEP- its for Middle School, and I want everything spelled out exactly. IF we get stuck in the school, this will be a whole new world of people, a whole new culture with a whole new attitude toward accommodation. It is important that we leave nothing vague, no guesswork, no "well, I know what you mean by that, we can fiddle". They don't know Joey. They don't know me. And I am not a whit convinced they know what they are doing or getting into.

So we're having a meeting, to start hashing. Right before the meeting where we work out the ESY. Then we have the Big Meeting next week.

I think I really need a nap. But I have a meeting to go to.

How It Is Supposed to Be

This morning was Andy's annual IEP. I wasn't really dreading this one. Andy's got a rockin' team, and they know him and his needs well. We got a draft sent home to look over, and we were ready to go. We got to the meeting, and we talked about Andy, what he has accomplished, what he will need to succeed in school, and we got down to writing the IEP.

All was going almost party-like, until the admin looked at the screen and brought it to a screeching halt. See, Andy's official special ed category is LD- writing disability (dysgraphia). Apparently, instead of being able to consider the needs to the child as an individual despite the specific labeling, we instead can only address items directly related to the label- ie, to writing. As most folks are apparently ignorant of dysgraphia and do not understand it is a pervasive disability, and as it was written specifically as a "disability in writing", the IEP can only address problems with writing at this time.

And the entire team choked, coughed, and sputtered, and then turned to me and said, "well, we need to get his ADHD officially diagnosed..."

And I had a bovine. I pointed out that not only was he officially diagnosed, the school had the record of it. Although not mentioned in the eligibility meeting that was successful, it was recognized in the pre-kindergarten child study when we were turned down. And I said flat out that I believe that had we been given appropriate and adequate service then, we would not be having these meetings now. Early intervention really does make a real difference.

So without missing a beat, the other folks said, this is wrong, and it needs to be fixed. Immediately.

We closed down the meeting, and set up the next one. We put in requests for evals and testing. We return to eligibility, and get this made right, so that we can write his IEP properly, and his needs can be met. The organizational goals and sensory supports we had discussed could be put into place. This needs to happen, so he can access his education.

This is how it should work- the teachers and therapists see there are needs, the parent sees there are needs, and the paperwork is fixed to be sure it reflects those needs and the required accommodations. The case manager steps up and says, "this needs to say this, let's get it done." And then we put the cogs in motion to get it done. The team works as a team, not as a battle.

Yes, folks, this is the way it should work. You discuss the needs, and then make the paperwork say what is needful- not the other way around.

At the Aquarium

While I toss and turn over's Andy's IEP in the morning, a glimpse of the fun days.

Nowhere to Go

So you find yourself at an IEP meeting that you never really wanted to go to, having to say things that make your heart hurt, and trying to figure out what can be done to keep your child from losing ground until you can have another IEP meeting that will make your heart hurt and try to actually do something useful.

Wait, I think that might be every IEP meeting.

There's a lot to make my heart hurt right now.

I had to admit that Joey cannot hold his own in a "mainstream" classroom without support. And not just any support, he needs specialized, experienced, trained support to be successful in there. And that is something the school not only does not have, but has no time to create or hire for this year. A para, we could probably locate. An understanding teacher, apparently not so much.

But it got worse. If we take him out of this room, where do we put him?

Let me back up a minute to give you a better picture.

One of Joey's outstanding strengths is his grasp of math. He loves it. He breathes it. He perseverates on it. HE finds it logical, sensible, comfortingly regular and patterned. Math. It rocks.

At the start of third grade, I was called into the principal's office. I was nervous, as we had already been running into tough bolting situations with Joey by then- and it was a new behavior, so we didn't know the signs yet. TO my surprise, he was suggesting we might want to move Joey up a few grades in math, if we could find someone to teach him. He had just passed the end-of-year tests for both fourth and fifth grade. However, they didn't move him, because he didn't pass the third grade test, and there were some holes in skills- so hey, we had time to fill them, and use math time for social skills practice. I should have made them move him up.

Joey's favorite car riding game is to shout out math questions and answer them. Sometimes he does the shouting. Sometimes the answering. It's all awesome to him. And I'm not talking namby-pamby, simple-arithmetic stuff. I'm talking 34X78. No, you have to do it in your head. And you have about five seconds.

When Joey does well for his school speech therapist, she allows him, as his treat, to do a math problem. Right now, he's in love with long division. Only he doesn't like to write it all out, because that's messy. If he absolutely has to write it out, he'll flip the paper over, re-write the question, and the answer, so it looks tidy. He will work hard so he can have his math problem.

He also loves to watch other people do math. One of his favorite treats last year was to watch one of his other teachers, who was a bit of a math wiz, do long division on the white board. It made him giggle to see her do it so fast. I found out this week that he'll giggle when I do it, too. And he'll work hard for a treat of watching you do math super fast.

This past quarter, he got a C in math. And the reason? He was flunking math tests, big-time. He got 40 on his 9 weeks test. This quarter, we started off with a C on his fractions test.

Does. Not. Compute.

Was it one of those "holes" that needed to be filled? I looked at the paper, asked him the questions. He responded immediately- and correctly. So I asked more complicated questions. Still correct. Still immediate.

Does. Not. Compute.

So as part of the IEP meeting, we confronted this enigma. The excuse? Well, there are more word problems now, because the SOL is "more rigorous."

After we cleared up the meaning of the word "rigorous" (after all, the test isn't asking for more relevant skills or higher degrees of mathematical knowledge- it is simply adding a bunch of language to process), the conclusion was stated point-blank by our administrator: the problem wasn't the math. It was the disability. Joey has a language processing and communication disability, remember? And guess what is NOT accommodated when you plunk a bunch of language-heavy tests in front of him?

I'm not even going to start with the problem of doing this on the SOLs, and the discriminatory obstacle it is going to put in front of my child (what do they want to test? Math ability? Or language comprehension and test-taking ability? That's rhetorical, BTW. Unfortunately, we know the answer there). I just laid it out there that I don't give a damn about SOL tests, because they are useless. They are poorly designed and poorly administered. They disregard a child's developmental level- or even the appropriate developmental ability and level of any age group- making the tests nearly impossible to take in the first place. They are "scaled", but not to an scale that would be remotely useful for comparing the scores to anything else known to man. They teach kids more about how to get through testing than acting as evaluation tools or helping kids learn anything. They can't even be used as data points for a child's progress or level of ability. They are useless, stressful, inappropriate trash.

But back to Joey. If you want Joey to be able to handle word problems, you have to teach him how to handle word problems. We've proven that before. When you teach him the key words and what they mean, he does fine. They become part of the puzzle, part of the pattern, and it is all good. If Mary has six apples and Johnny eats three apples, how many apples do you have left? "Do you have left" means to look for a subtraction problem. The big number probably comes first. The little number comes second. Bingo, 6-3=3. Johnny and Mary are left with three apples. Almost every word problem has these patterns, you just have to teach them- especially to kids who have language processing disabilities.

I'm not sure why a decent teacher would not pick up on the problem here, or its solution. Kid has no problem with math. Kid failing word problems. Stop and teach kid to decode word problems. Problem solved. Heck, I'd be thinking of that even if the kid didn't have a known language processing disability. Lots of kids trip on word problems.

So, we have no trained, experienced support, and a teacher who has no concept of language processing disabilities or how to accommodate a child with them, she just flunks him. Then she lets him leave her classroom without even watching to be sure he gets across the hall, and thus he ends up in the parking lot. Or at least at the door. The story kinda got changed at the meeting. Again. Communication even between the staff appears to be in shambles.

Time to get him out of there, before someone gets hurt. Or has to be bailed out jail. You get the picture.

So, where to go? What do you do with a twice-exceptional child? Where do you place a child who has serious disabilities in language but is brilliant in math? The self-contained room is not designed for that. The inclusion room is not designed for that. Both of those are designed for a slower pace, not a faster one, in the lesson material. How do you keep the math coming, while working on the language? How do you fight boredom while addressing challenge?

The fact is, schools are not set up to deal with children as individuals in any way. Special ed is "so expensive" partly because regular classrooms are not designed to deviate or flex. Regular ed teachers are not trained to deal with a diversity of student needs, only a narrow scope of student skills- specific skills at that. Special ed is a whole different way of understanding kids and how to teach them effectively; a way that would benefit all kids. Most of the special ed "techniques" I've seen are just plain old good teaching. Yet, there are those who need something different. Something unique. Something individualized.

What, you mean, like an IEP?

Right. An IEP with nowhere to go.

Thank you!

A big THANKS to all my awesome Cafepress/Joeymom's Autism Awareness Bazaar customers. This last check paid for TWO therapy co-pays! You guys ROCK!!!!

Houdini Lives

He made it all the way to the parking lot this time. A guidance counselor, arriving late for work, caught him and escorted him back to his class. The para doesn't come until 9, so she wasn't there yet. No one seems able to tell me what happened. In fact, I wasn't told until 3pm (I got the call just as we were arriving for Andy's therapy).



The IEP meeting is scheduled for 9:30am on Thursday. Seriously considering keeping him home until then, for his safety.

NOT.
HAPPY.

Going In With Solutions, Part the Third

I look down at the report card, then at the homework sheet. My brows are knit, so that my eyes are scrunched; it hurts. I stare at it.

"Joey? Simplify five-fifteenths."
"One third." There is not even a moment of hesitation, of processing, nothing- the answer is immediate.

I stare at the paper, marked 40-F. It is dated a week ago.

"Joey, what is 6/24?"
"One fourth." No pause. No blink of the eye. He's not even looking at the numbers, the audial processing isn't even road-bumping him.

"What is 1/8 plus 1/4?"
"3/8."
"What is 1/3 plus 1/6?"
"One half." He is getting slightly annoyed with me asking stupid questions.
"What is 3/15?"
"1/3."
"7/14?"
"1/2."
I keep this up as he puts on his coat, toss in some laughter to fool him into thinking it is a game, one we we have played since he could talk- the math problem game, the sudden barrage of math problems, increasingly complex, which still ornaments long car rides. The air is chilly. I am still clutching the failed papers, the report card that has a C+ in the math column, but the only comment, "Your child is a joy to teach!"

Must not be, since you don't appear to be actually teaching him.

"What is 3/18?"
"1/6."
"4/5 plus 1/5?"
"One."
"What is 4/76?"
He pauses for the first time, scrunches his brow and then grins.
"Mommy! That's silly!" I purposely picked the oddball numbers, but also know the answer is 1/19. The problem is too complex for him without seeing it, but he doesn't freak out, he makes his "I want a kiss" face. I oblige as the bus pulls up.

I have requested a copy of his school records. I'm going to make sure my ducks are in a row, and make some visuals, so that the team understands: we are out of time. If our IEP is failing, we need to fix it, immediately. And there is no excuse for this child to be getting a C in math.

Go In With Solutions: Part 2

Yes, it's February- and time to start thinking about Joey's IEP for next year. Ive been thinking about what I think Joey needs, listening to Joey and his difficulties, and considering what he should be learning and doing. I've been thinking about the models that have worked for him, and what key components made those models work. Then I've been thinking about why he needs these models, and goals, and supports. I've been thinking about what we've seen, what progress we've made, what regression we've seen, and why we have been both successful and... not so much.

Most of all, I've been thinking about Joey's stress.

I think most people understand that too much stress breaks down anybody's ability to function, including learning. If we don't address the stress, anything else we do will fall apart. That's the first and foremost reason for almost everything I can think about for Joey's IEP: a setting that reduces stress. A learning model that minimizes stress. Social skills programming to include coping with stress. Accommodations to eliminate stress.

And this time, not only do I have to get it right, but I have to put my foot down. No budging. We've been through the ringer, and we are out of time for fooling around. We have the data. We know what works. Now, we just need to spell it out- clearly, concisely, and completely.

How many times have I told my students to do that?

The rows we hoe

I have been reading a few new blogs lately- ones that caught my eye in hopping about looking at other folks' blogs, or Facebook comments, or Twitter feeds. Without the massive mounds of time I would love to have, I am forced to be selective, so this is big news. Most of these new blogs have something in common with the experiences I'm having here- blogs with late-elementary kids, kids that seem to be at the same place Joey is in experiencing and understanding the world. The mix of eager emotion that rolls about my heart as I catch up on these new worlds, as well as keeping hold of the ones I already know and love, was something that seemed to be holding me to the ground as we take the latest hill of our roller-coaster.

I thought I was looking for some kind of understanding, some kind of familiarity, some kernel of how others are understanding their kids and perhaps hoping for a glimpse into what Joey is thinking and feeling. What I think I was really looking for was that "I'm not the only one here" that I hope my little blog lends to others. Standing on the edge of unknown territory, I so want to get a sense of what lies before my feet, and understand that others are at this same place.

Joey is in uncharted waters, and I don't want to fail him and have him drown... or not learn to swim.

And there are snatches of that out there. I'm not the only one with a 10-year-old who is still into preschooler characters, especially for comfort. We're not the only ones with ups and downs of echolalia, frustration, and discomfort. We're not the only ones walking that knife edge of being age-appropriate, yet letting Joey be himself. And Andy, for that matter.

But there is something I have not found- I know it is out there, but we aren't talking about it in ways that I can gain insight on- for helping Joey. We can't be the only ones.

Dealing with overwhelmingly intense emotion is difficult for most folks, but for Joey, who spends his life on the brink of an anxiety attack, the boiling-over can be explosive. Lately, Joey seems to have almost no defenses against intense emotion, and even immediate triggers can be difficult to discern. In November, we had the strange episode of the Not Dead Grandfather, where just imagining the loss of a grandfather- none of which he knows particularly well, and all of which I am happy to report are alive and well- totally overwhelmed him, to the point he even had his teachers upset. The pain he displayed was as if the event had occurred- it was so real to him, he had no defenses to cope with the emotion of it.

Last week, he told everybody he had to give a "last concert" of Signing Time songs because he was going to move to my hometown and go to a new school the next day- and no amount of reasoning would deflect him. Even confronted with the fact that he was not moving didn't help; he was in such a state that the principal called me in the middle of lecture to ask me what to do. (Why did he not call the school autism resource teacher? Because she is split with another school, and was not on campus). I finally struck on using the social skills language he has been practicing in his private OT to try to give him some words he understood to calm him and re-calibrate himself; and that seemed to work. He was at least able to go to class.

I could identify the script sources (Signing Time, plus Quack the Duck from Peep and the Big Wide World), but I could not for the life of me figure out what made him so unhappy and uncomfortable that he would invoke them.

A few days later, he said a friend on the bus had bitten him- certainly that would be an immediate trigger. But in investigating the matter, there is no support for it. The bus attendant and the driver have no clue what Joey is talking about, the friend he claims bit him sits far away from him on the bus and, though an unpredictable child, is not known to bite.

I honestly find myself at a total loss. Was he bitten or not? And if he wasn't, what triggered a two-hour meltdown of echolalia and imagined upset? Is he having trouble drawing lines between imagination and reality? How can I help bring down his anxiety level so that "imagined"* stress does not overwhelm him? Is it the imagined scenarios he is feeling the pain and upset about, or is he hiding other stress (just like, for example, when he pretending to be Buzz Lightyear instead of Joey)? Is it a whistle in the wind, like when he loses something and starts screaming that it is "on the roof"?

I just don't know. But we can't be alone in this. Please. Not that I would want other families having issues, but... please don't let us be alone.




*Although the scenarios he is describing in his speech are not real, the stress is.

Go In With Solutions

As you may remember, our last IEP meeting- which was supposed to produce a BIP- was... well, a disaster. I had requested to get the eval info ahead of time, but the school psych wanted us to "hammer it out in the meeting" and didn't send anything, so I went in with no info. When I saw the info, I realized I still had no info. What they called "data" was nothing of the sort- and even the interpretations and notes provided were basically "variable- variable-variable"- in other words, they failed to note any pattern in Joey's behavior. Which, of course, makes no sense and is completely useless when trying to figure out how to intervene. The only thing suggested looked to me like a data collection they should have been doing in the first place, trying to learn to read Joey emotionally by checking on his well-being regularly. This isn't an intervention. There was no plan for what to do if he had another meltdown.

I have been feeling like an idiot ever since. And I didn't sign that waste of time. I need to get together a letter about why.

And as I mull that letter, I struck upon an idea I should have remembered when I went to the meeting in the first place: I need to provide solutions. I need to state what I think needs to happen, what I want an intervention to look like, what services I believe are required should there be another issue. I need to be clear that suspending him is not appropriate. That when he is so overwhelmed that he loses skills and control of his mouth and his behavior, what needs to happen to calm him, guide him, and help him. We need a clear understanding that screaming obscenities is not OK in a classroom, but we also need to be sure we are doing what is needful to not let things get that far. What are the red flags, and what can be done for each one? What should be done so that you avoid escalation?

And since no one was interested in doing that at the meeting, obviously I need to do it myself. They can then try to tell me no.

Snow Day

Lookie! Snow!

The boys were totally excited. I was totally unprepared. I can't find the bag of gloves anywhere. Joey wore my boots, because he doesn't have any. But we still managed to hit the local slope this morning and enjoy the powder- perfect for sledding, especially if you have a metal snow saucer. We got to see how much faster they are than the plastic ones- and so did everybody else. Woo-hoo!

Then home for hot chocolate and movies, and in and out to play in the back yard for the day. The boys decided to start adding milk to the snow to make "milkshakes." Yum. Then they added M&Ms, so they had a chocolately, milky boy delight.

And at one point, I had two boys on me, with two warm, furry kittehs. That, friends, is what snow days are all about.

Take a Break

Outside, it is icy cold, but pouring rain. Joey is snuggled tight against me, we are signing to Signing Time together. He is home because first he had a cough, and the day he went back to school, he got a tummy bug. I've kept him home after having to pick him up from school yesterday. He seems happy, smiling, but the fact that he is curled on the couch this time of day and the circles around his eyes tell a different story.

"A. This is A, Mommy," he shows me the letter. Rachel announces a new sign, "imagination." We haven't used this sign in a while, he proudly imitates it. "Look, Mommy, 'imagination'! Make a 'B', and circle it around like this." He does this, and realizes it is not quite what Rachel was doing. "No, make a '4'. Like this, Mommy," he patiently shows me, waits for me to imitate him. We sign it together, beginning signing the song that goes with it.

"Look, Mommy, 'pretend.' Do it this way." He gives me some hand-over-hand help. Then he touches my face, since his hand is already there. "I love you, Mommy." He's been saying this a lot lately. He find the expected response to be comforting. I don't blame him.

"I love you, too," I reply, not out of duty, but- as usual- because it is true. "You are awesome."

"I am good at signing, Mommy. I am a good signer. I am better than you!"

"You are a fabulous signer, my love."

"I love you, Mommy."

"I love you, too."

"I can teach the babies sign, Mommy. I am going to teach the babies sign."

"I think you would be excellent at that, sugarplum." He smiles, snuggles, starts going through the alphabet. He gets distracted part way through, shows me a few more signs.

"I love you, Mommy," he says again, absently, watching his fingers form the shapes as he settles in closer to my side.

"I love you, too." I sign it, he sees it in the corner of his eye.

"You are so very loved, Mommy."

"You are, too."

He gets up, goes to his computer, and starts making videos of his signing. The break is over, he's back to busy.

That's my boy.

Social Skills Aren't Just About Doing It Right

Our private social skills "group" has hit a snag. I put the "group" in quotes, because until next week, it is only two kids- Joey and "Buddy." Next week, an old friend returns to our group, "Mr. Man." (I hope to have some more posts up with Mr. Man in them, because he and Joey have a very interesting relationship.) The two currently there were matched up by our OT, who works closely with them in a program called Social Thinking. They are learning about important things like body language, expected and unexpected responses, and how to tell when someone is talking to you, etc. etc. Buddy has some similar language patterns to Joey, but in some ways is more verbal, but in some ways far more inflexible. Both have difficulties with processing, and need a lot of external processing support and time. I was told this pair was a good match for the group, and Joey likes to go.

Over the two-week break, Joey informed me that he doesn't like Buddy. He was so clear about this that I decided the OT needed to know, to head off any problems.

You know you are about to have an interesting new conversation when you pull your OT aside after group, and say, "Miss L, Joey told me... he doesn't like Buddy..." and she cuts you off with a cheery, "Oh! Good!"

Often enough when we have Joey in groups, it can be very difficult for us to figure out exactly what Joey is getting from the other children. He seems to be modeling for the other kids, but not having much modeled for him. I know things are working because of the improvements we see, but I haven't figured out exactly why it works. What's in it for Joey?

IN our little pairsome, Joey is again the model. Joey is very good at learning the proper way to do things, and modeling that in controlled settings. Buddy is not. He needs the foil of Joey to work on how things are done right. Hence, he often makes "unexpected choices." Buddy does not respond in the ways JOey is being taught he should be responding. For example, if Buddy is sitting in the middle of the hall, and Joey wants to get by, we have taught him to politely ask, "Can you please move over so I can get by?" He then expects the response of the child moving aside so he can get by, because the other children have been taught that when someone asks you to move aside so they can get by, you move aside.

Buddy ignores him, and stay right where he is. Sometimes he may be playing a game in his head, and says something that seems arbitrary to Joey, like, "Pow! You lose a turn!" This is very confusing for Joey.

However, this is a common issue to think about in any social skills or anti-bullying campaign. You are being taught to react to situations in certain ways, do certain things, with the denouement being the bully starts being nice and everyone lives happily ever after. Right?

And yet we have all figured out it doesn't work that way. People do unexpected things. The bully keeps being mean. The co-worker keeps stealing your lunch. The neighbor keeps letting the dog bark. Mom still doesn't buy you the toy. Now what?

For the past three years, Joey has had in his IEP a goal to deal with bullying. It is an unfortunate truth that bullying will likely be a fact of life for Joey, and he needs to be specifically taught the coping skills most of us learn just by having to deal with jerks all the time. What do you do when you do everything right, and the situation is still wrong? Or unexpected?

This is one of the things Joey has been discovering and learning in group this year. How do you deal with the anti-social behaviors of others? If people make you feel uncomfortable, what is the appropriate and expected way to respond? What is a proper way to resolve an unexpected issue or response? Buddy stays put; Joey has to learn how to step around him, and perhaps go do something else. When Buddy says something that seems not to make sense, Joey is learning how to respond. When Buddy isn't nice to him, Joey is learning what to do. He is learning that not everyone in a class or group is a friend, and that it is OK that not everyone you meet, or who is in your classroom, is not your friend. You don't have to be friends with everybody. People who treat you in mean ways are not friends, and you do not need or want to be friends with them. He is learning to deal with people who are not friends, without being rude or unexpected- and how to be safe in dealing with people who are not your friends.

These are skills the school keeps saying they can't teach Joey because "no one bullies him."

I call hockey pucks.

Call a lawyer

I've been in this special ed gig for 8 years now. I've gone to good meetings, nasty meetings, confusing meetings. I've spent weeks putting together presentations, binders, handouts, and data graphs. I've sifted through evals in techspeak, observation reports that have some or no observations, and IEP goals that are measurable and unmeasurable. I have fought, planned, co-operated, held my ground, given ground, compromised, and even thrown a hissy fit.

I am not an OT, a PT, an SLP, a neurologist, a developmental specialist, or a special educator. I am an art historian. And educated person, but not an expert at this.

Our back-up plan, like so many other special ed parents wrestling with an uncooperative and ill-funded system, is that great mantra, "Call the lawyer!" There lies the secret weapon, the person who can come in, look over all the mistakes you have made, and tell you to do next- or if the next step involves, say, the lawyer.

This is such an ingrained mantra that we have taken up Wrightslaw as a banner, reading the books, going to the workshops, making sure we were ready, making sure we had done all we could do before... well, calling the lawyer.

This morning, I called the lawyer.

When your back-up mantra is "call the lawyer", you also recognize that calling the lawyer is an admission of defeat. That despite trying to be an expert at the system, trying to keep the ducks in a row, trying to advocate for your child as best you can, something is terribly wrong. The question is, "what am I doing wrong? And how do I fix it?"

And so you call to make an appointment with a lawyer.

Sounds idyllic, yes? Well, what no one tells you is what happens when you make that call.

See, when you call, apparently you have to be ready, like a lawyer yourself. You have to know exactly what is wrong and exactly why you want to speak to the lawyer. "Something is wrong" won't even get you past the receptionist. Even, "this meeting went badly and I don't think what they gave me is appropriate" isn't enough.

Seriously, I never got past the receptionist, who kept interrupting me to say, "I don't understand why you want to see a lawyer."

We've had a blow, folks. The back-up plan just told us they don't know why they should help us or have our back.

Just the Truth: When Life's Journey is Unexpected

There is an article bouncing around social interwebs which claims to take a bald-faced look at the "truth" of having a child with autism. That "truth," according to the article, is that having a child with autism destroys your life.

It is the most horrible article I have ever read in my life.

For one, it is not the truth. It is the opinion of a person watching a family with an autistic child (not even their own child), noting how the parents had to give up their careers and have no one to help them but a set of retired parents- who are now at odds with each other, because Grandpa resents having to spend his retirement money on his grandchild. I will spare you both the details and the article. It is a waste of valuable time and will just skyrocket your blood pressure.

No, raising a child with special needs is not easy. It is very different from raising a child without special needs, because most people understand and know what to expect in raising a child without special needs. We spend a lot more time in "therapies", rather than "extra-curriculars." We know fancy words such as "propioceptive input" and "pathologic encephaly." We understand plenty of weird acronyms, such as "IEP" and "BIP" and "FAPE".

I still watch the kids at the park and think "wow, that kid needs some OT."

My life is not what I had thought about and planned for. It is, in fact, very, very different. No, I do not have a full-time job, but a string of part-time gigs and contract work. My husband and I go out by ourselves about twice a year, though we have finally found someone we could use for babysitting (an aide with our OT office does babysitting on the side, and is awesome with our guys). Up until now, it was Grandma or else we stay home. Sometimes, that is how life goes. Not as planned.

Does that mean my life is "destroyed"?

My life is different. I don't know many people now without special needs kids, so I am not quite sure how different. For us, this is normal. To go on a trip, you don't just get in the car and go. You have back-up plans in case the trip doesn't work. You pack familiar items, even for a day trip. We are in love with Steve Jobs and Apple for making our lives so much easier. Did you know there are some really awesome apps to help kids with pincer grips and eye-hand coordination and... wait, am I off topic?

Do I sometimes feel sad about not having a full-time gig in a nice little college somewhere and running off to India with my family every couple of years? Well, yes. It was a nice dream. But that's not how life worked. And I will get him to India. It just needs a lot more planning, and won't be happening very soon. However, I did manage to get my passport updated last year. Just in case.

Yes, my life is different, and it changed our plans and dreams and ideas of the future. But we will never say we no longer have one. We have a life, and it is an awesome adventure of a life. We will work through the challenges- just like everybody else. It has ups and downs; even if the downs dip a little lower, the ups rise a little higher. Or perhaps, they just dip and fly at different moments, for different reasons. Life is more unexpected in many ways.

But you know what? Different is not demolished. Unexpected is not always bad. And like Bilbo Baggins, I'll never be the same... but I'll have plenty of good stories to tell.

Stampeding into a New Year

Goodbye, 2012. See ya. Don't let the door smack you on the behind.

Seriously, we've had worse years. And we've had better. But altogether, we seem to be holding on tight and taking the roller-coaster in stride.

We now get to face new and ongoing programs for improvement and progress. With a new year, its a good time to think over what is needful, and getting the balances right for a good beginning.

I've been having a lot more anxiety lately, and that leads to an odd sort of depression. I'm anxious about our current Joey mystery, moreso after seeing the report from Kennedy Krieger, which seems to ignore it. We thought the doctor was more receptive to what we were saying than this report reveals. I worry that I worry too much, that I'm finding demons in shadows that aren't really there. I worry about over-medicalizing and over-analyzing and being over-bearing.

With a spate of good days, it can be hard for me to remember the bad ones. After all, I'm a mom who's been through labor, and then decided to have a second kid, anyway. The good crowds out the bad, and to be honest, I'm usually glad. But then the anxiety comes. Should I be something something more? Something else? Is everything I should be doing getting done? Do we have time for all the interventions I've been told to do? Are they all necessary and helpful, or am I being... what do you call a person who is a hypochondriac about their kids?

And then there are the things that can't be turned aside as over-worrying. Joey needs help with his reading and testing, with his social skills, with his ability to function in a highly complex social world. He's not picking up important cues by example or model; he has to be specifically taught. Middle school is coming, and watching him among his peers is increasingly terrifying when my goal is to give him the skills to cope and survive as an independent and self-advocating adult. I know what model will work, I can see it, and I can see a place that will give it to him. How do I get him there? How do I get the folks at school, who are working so hard to help him, that he needs to be somewhere else? That they are not doing enough, not giving him the appropriate education and support he needs to learn to survive? How do you convince people who are totally sold on inclusion that it isn't working for your child anymore?

Anxiety. And that's just the Joey saga. Andy has an entirely other set of challenges and anxieties. I worry about his mental health, his world dominated by the challenges of his brother. I worry about his own coping with his own challenges. I worry about his arsenal of nerf guns.

Then there is the employment situation. We are dependent on a contract that is in-between projects, and have no timeline for when the next project will get started. We have no idea how long we have to hold on before income resumes. We have no idea how long we can hold our breath, waiting for others to decide to get started. Do we close down the main office, and save that rent money to last a little longer, hoping that the client won't come to inspect our location? Can we come up with new revenue streams, enough to tide us over, and fast enough? What if we don't survive the gap?

Anxiety means insomnia. It means things forgotten and things left undone, to create more anxiety. It means a constant feeling in your stomach that everything could crumble around you any instant. It means looking at the overwhelming tasks before you and being... overwhelmed. To think my kids feel like this every day of their lives is one more anxiety. The spiral begins, leading down into the dark. I didn't even get all my Christmas decorations up this year, and I look around and want normalcy. There isn't any, anywhere.

I am not a normal person living a normal life. I'm more of an Alice wandering through life trying to convince the Cheshire Cat that I don't want to go among mad people, and finding myself at the foot of the caterpillar's mushroom.

Who are you?

So it becomes time to rush into a new year, with new plans, new programs, new ideas. We have Joey and his new suggestions from his new nutritionist. We have a a new school to look forward to, though we are not yet sure which new school it will be. We have new ideas for keeping the house in order (well, the first floor, anyway). We have some new hopes, and new dreams, and new possibilities.

And new anxieties.

Did I mention I don't like roller-coasters anymore?

Happy 12th Anniversary of my 29th Birthday

My poor mom was due at Thanksgiving.

Tangled Emotions

On Facebook, the prompt is now, "What's on your mind?"

As I sit here, staring at what the school is telling me is a behavior plan, but which says nothing about what anyone will do if Joey melts down in school again- a high likelihood come the spring; as I think about the day Joey stepped out in front of a garbage truck, and what game plan I have in my head should there be a repeat (and all the echoes of people saying 'why can't you get over that already?'- with words, eyes, and quiet shakes of the head), and think about those beautiful lives lost in Connecticut this week (not just the kids, but also those teachers and admin who gave everything for those kids), I think about... this. I think about the possibilities of where we could be going, if I can't get the school program to function. I think about the needs Joey has, and the possible avenues he could take, especially if we can't get the depression in hand and the frustration under wraps.

What's on my mind? The other day, when Joey imagined that one his grandfathers died. The pain he felt, as if really had happened- and the breakdown he had in school over his inability to cope with raw emotion... even in an imaginary circumstance. That's on my mind.

The long road ahead to get the school to understand that inclusion isn't working for Joey. He's being lost- socially, academically, he's drowning. The little progress he makes still leaves him lagging behind at an alarming rate- even as he steps forward, he is falling farther and farther behind. We've never recovered from our major third grade regression. I have to make sure I have every scrap of paper in order, ready to go. I'm not doing this one alone. How am I going to pay a lawyer? No clue. But it must be done. That's on my mind.

Having to admit to myself that inclusion isn't working for Joey. Sitting here thinking about it, I could just cry. We want him to be able to function in the world. We had been doing really well with it. But then third grade came, and it was sold to us as "well, things are different." Guess what? In middle school, they are different again. To have to sit here and say, "This environment is not supportive enough. He isn't safe there." I don't think many people understand how hard that is. What makes it harder is knowing those kids are at least used to him. There is some social value to having those kids learn beside Joey. There is also the future to think of- Joey's social future, after being pulled out of school. That's on my mind.

It's a tangle- the kind that steals your sleep and leaves a hollow in your chest.

No, That Didn't Go Well.

Today's IEP meeting featured the FBA. Yeah, acronyms suck. So did the meeting.

When we set up this meeting, I was unhappy about the idea that we were getting together at 2pm to "look at the data and decide what to do." I asked for the data and a draft of what they thought they should do before the meeting, but that didn't happen. So I had no idea what the data would look like, had no time to process it, and was unable to have my own professionals look over it and discuss it so I could be a useful team member. We actually spent a lot of time talking about how the behaviors that originally set al this in motion have mostly ceased. You know, the threatening language, cussing, and self-deprecation. In fact, during their 2 weeks of data, he had mostly "good days."

And so the meeting was a waste of time.

The only thing I could get across to anybody was the need to help Joey communicate when he is on the brink of being overwhelmed, because you can't tell by looking at him. So they agreed for him to have a notebook with his well-being check-in color and number scale, and have him do regular checks of where he is on the scale, and possibly talk about why (so he can connect emotions to things that happen and proper language). The idea is that this will help him process and communicate, to avoid the behaviors.

Great.

Most of the meeting was filling out a form about these behaviors and lack of data, which can mostly be summed up as "Joey is autistic." To the point they'd say something and I wanted to say, "NUH! He's AUTISTIC!!!" or write "Look! My autism is showing!" I mean, seriously, just write "autistic" across the paper and be done with it.

And what is the plan should he have another meltdown incident?

Oh, well, um... that wasn't discussed.

I had no urges to throttle anyone. I just felt like no one there who understood Joey was being heard, and those who didn't made their cluelessness clear. Nothing was done to actually help Joey should he again be in crisis.

It is never a good thing to be walking out of an IEP/FBA meeting thinking, I need a lawyer.

Weighing the Options

You may have noticed we've been having a lot of dips in the roller-coaster lately. In fact, the past three years of Joey's schooling have not been the rosy, well-progessing days of the three years before that. Even with teacher we think are excellent in the last two years, we have lost ground.

It really struck home the other day, when his current Awesome Teacher, Ms. F, was praising gained ground. Joey is now independently walking from the bus to his classroom in the morning. Woo-hoo! Independence! Yay!

But wait. He was doing that in second grade. We're just now regaining skills we had in second grade?

I haven't said anything yet. I need to chew on that some. We're just now getting back to some of the independence he had in second grade. Some. Not all.

Yes, we have had some skills move forward. And he's grown up some. Not at the pace of his peers, but some. And yet, there are still these moments, whole days, whole weeks, when I feel like we're trying to regain lost ground. We had it. Then we lost it.


This fall, we may have the opportunity to get Joey into a new school- one that seems designed just for him. Academics in the morning, tailored to the child's skills (so if Joey wants to go gangbusters in math, he can! and if he needs help in reading, he can get that, too!). Afternoons dedicated to movement, therapies, and specialized education (social skills, extra speech and language work, fine motor work, etc). Movement and sensory breaks throughout the day. Classrooms of 5 students, with one teacher and two paras. Plus full-day OT, speech, and vision therapists on site (and perhaps PT, depending on who the students are). All of these people would be trained not only in special education, and not just in autism, but specifically in Joey.

Sounds like a dream come true, doesn't it?

But here are the cons.

We've been lucky to be in a small school system, and many of Joey's classmates have gotten used to him. They know him. They can at least tolerate his quirks, even if it is more in a mother-hen fashion than a friend fashion. Interaction with non-disabled peers would plummet, restricted to activities I could arrange after school.

I have an answer for this one, though. We are entering middle school. Much of that tolerance is about to evaporate in the world of the selfish, nasty pre-teen hormone rush. We are already seeing bullying and nastiness; it is about to get serious. This may be the time to rethink inclusion, which is already looking shaky. It is no longer a safe space for Joey to learn to interact with non-disabled peers, or for them to learn to interact with him. It is about to become even less so. This may be the moment to go ahead and give him more controlled environments to practice the skills he is being taught, and spend more energy on carefully controlling the "on the job" interactions he has to deal with- after all, it isn't just his classmates that are about to hit Hormone Central.

The other con is the price tag. At $40K/year (which is a bargain, by the way), we have to put together the data that supports our observations: that as we move away from the model we were using, and that the new school will use(with morning academics and afternoon pragmatics and highly trained staff on site at all times), Joey's ability to access both his academic and his functional curricula plummets. When he is in those reg-ed math classes, he's supposed to be being instructed how to function in those classes; yet it seems that the school's idea is to just toss him in there and hope he "picks it up." He needs a lifeguard to help him practice his social skills, but his para is green from school and untrained. And note how little I just said about learning math. We've seen his reading go from being at "above 6th grade level" in second grade to "below basic" in fourth. No one seems to be able to even tell me what progress he's made in reading. I've seen none. In fact, I've seen major regression- he won't read for me. He is again tolerating me reading in the room, but is not paying any attention to what I am saying/reading.

I worry that putting this down in black and white will somehow be considered a reflection of the teachers he has. What I feel is that we do have the A-team; these are the best teachers this school has to offer. And here we are, even doing our best and working our hardest. This isn't working for Joey. He's falling behind more and more, even as he moves forward, because everyone else is not only ahead of him, but they are moving faster. Yet his strengths get tossed to the wayside and left to stagnate, unchallenged or minimally challenged. He already passed the end-of-year test for this grade- two years ago. Has he moved forward at all?

So it is time to start gearing up for battle. This is going to be a tough, nasty one, which could be all for naught if we can't 14 others to win the battle, too. 15 students are needed to open. What a disaster it would prove if I can prove the schools are failing, yet have no where for him to go. Burned bridges are tough to recross.

Mean People Suck.

Things I wish people would think about before opening their mouths (or keyboards).

1. You can't just walk up to your family doctor, say, "I think my kid has XYZ", and walk out with a diagnosis. This is true of the flu, of a broken bone, or even an ear infection. It is also true of diagnoses such as autism and ADHD.

2. You can't just walk into a school and demand your child have an IEP, and walk away with one. even when something is wrong, it can be very difficult to get the school to acknowledge that it has an impact on your child's education.

3. Just because you have a diagnosis does not automatically qualify you for an IEP.

4. Not all children with autism or ADHD take medications.

5. Most of the kids with autism or ADHD who do take medications are on anxiety medications. Think hard about what you take anxiety medications for when you do not have autism or ADHD. Guess what? That is what kids with autism or ADHD are taking them for. Think hard about that.

6. Kids with autism or ADHD are not lazy, crazy, or stupid. You can't beat the autism or ADHD out of them.

7. Not all kids with autism get a government check.

8. Kids with disabilities have the same rights to life, liberty, and happiness as everybody else. In this country, that includes education- even if you think they are "uneducate-able". They are still human beings, and they are still members of your community.

9. Using foul language and ugly words just emphasizes that you are a mean, ignorant, ugly person.

10. Saying/typing any of the above, and then justifying it by saying you work with special needs kids of any kind, have a medical degree of any kind, or have an educational degree or experience of any kind, also emphasizes that you are mean and ignorant. It also makes me want to track down who you are, to make sure your degrees and licenses are reviewed, and to be sure you do not really work in direct contact with any vulnerable population of any kind.

Because, seriously? Mean people suck. I wish we could put them in a nice social skills class, so they would have a chance to become constructive and positive members of society, rather than blood- and soul-sucking leeches.

Joy to the World

Joey and I went to the holiday parade! We get there a bit early to get a good parking spot, and hang out to see what is new for the holidays. There was also a craft fair nearby, so we wandered over there for a while. It was in my old elementary school, so I got to show him where I had classes and things. I hadn't been in the building in eons, so that was kind of surreal, but it was just as I remembered it.

This year's theme was something about tropical or Hawaiian Christmas, which is really weird, too, since we aren't tropical. And I hate tropical theme Christmas stuff. The point of a parade is to get us into the spirit, and it is cold here, so having people wear hula costumes and put up palm trees- it just doesn't do it. Fortunately, there were plenty of non-float stuff to see.

The other weird thing they do now is have all the high school bands just combine whomever wants to march in the parade into one band- so there is only one band. It is a shame, because parade bands are awesome. Also, hey, we pay for their uniforms and stuff, and it is a marching band, so come march. We all marched separately when I was young, and it was part of the deal of being in the marching band. Buy long underwear and know you are going to be in the band. We also memorized our music. And though we only had 28 horns at my school, we still rocked, even in parades.

Joey loved it all the same. He loves baton twirlers and bands and tractors and baton twirlers and ladies in costumes and trucks and baton twirlers...

About halfway through, he started singing Christmas carols at the top of his lungs. He even got some of the younger ones around him to join in to Jingle Bells. His favorite, however, is Joy to the World.

As in, Jeremiah was a bullfrog.

Everyone around us was in hysterics. That's my boy.

He did manage to catch some candy, but it was the folks giving out pencils that really made him grin. I think if I filled his stocking with sticks, he would be the happiest kid on earth. Pencils make great sticks.

I also liked the folks who were giving out paper bags they had decorated- so kids could have a bag for their candy and pencils.

One had to love parades, especially since Joey loves them, too. He was a little more reluctant this year, with the call of the Wii, but having some 1:1 MomTime turned out to be not such a bad thing, after all. Especially when Mom plays Pier Pressure while waiting for the next part of the parade to go by. And sings with you.

Merry Christmas!!!

Happy Thanksgiving

Turkey, by Mansur. For Emperor Jahangir (r. 1605-27). India.

Bus Bullies: The Saga Continues

Yeah, I'm not happy about it, either. We're getting to the end of our rope, fast. Apparently, the Gruesome Threesome are still causing trouble, and it was getting bad again- Andy was being tripped, pushed, and told ugly things, his friends insulted, the works of just nasty bus bullying. I emailed the principal that it was continuing. Then when Andy came home yesterday in tears, I called.

So how was it handled? Technically, I have no idea. I have no note from the school, no phone call, nothing.

But according to my son, they moved him to the back of the bus. Not the bullies- my son. He was moved away from his friends, who he now sees as unprotected, and to the back of the bus, with kids he doesn't really know.

Is it me, or did they just punish my child for being bullied?

AGAIN?

Andy certainly sees it that way. He has to readjust to new bus companions. He is worried about his friends. He wants to know what he did wrong.

He did nothing wrong. In fact, he is doing everything he is being taught to do- stand up for himself and his friends, report the incidents to an adult, when the bus driver did nothing, he came to me and to his principal. He is talking about it at social skills group and letting people know there is a problem.

He is learning that the bullying doesn't stop, and he is the one who gets punished. On top of that, the bullies are having their behavior reinforced, by removing the kid who was standing up to them.

I'm sorry, but after this long, those other kids need to be removed from that bus. I don't care what alternate arrangements are made to get them home- that is none of my business. But punishing my child for their behavior is not the answer.

Our Morning at Kennedy Krieger

Well, we finally did it: we finally got an appointment at Kennedy Krieger! We were up there to check out some issues Joey has been having, but also to get our foot into the door for support as he gets older. We could certainly have gone back to Kluge, but various issues, including the current upheaval at the center, made it seem not a good idea for the long haul. And we are now hitting that long haul.

The Kennedy Krieger building is impressive, with an airy reception and waiting area that has an aquarium and a playroom as well as a cafe upstairs. We were scooted in upon arrival (with free valet parking- yay!), registered in a jiffy, and soon munching bagels and waiting to be called. Everyone was totally nice to Joey, letting him start up conversations in his way, responding to him with smiles and comments and answers to encourage him in his interactions. Joey was happy as a little clam.

Dr. Rubenstein was also awesome. We went through the entirety of Joey's tale, in detail, starting with him being a non-verbal two-year-old. The tale of the First Speech Therapist, getting him into school, getting him into therapies, getting his diagnosis, etc. etc. etc. Joey was diagnosed with autism by Dr. James Blackman at Kluge when Joey was about two and a half- in November, no less. The name apparently holds some weight, because upon mentioning this fact, the conversation shifted into a different gear. It made me wonder how many people go in to him with a lot of assumptions but no actual facts... or evaluations. I also think Joey was his usual surprising self. He does not present the way people expect an autistic child to present, especially if you have only known him for five minutes. As Dr. Blackman once said, Joey has a lot of classic autism symptoms, but not a classic combination.

We got into sketching our current issues, and Dr. Rubenstein was definitely thorough and thoughtful, considering what we were saying and seeing, and what he could see for himself. In the end, we got no answers today, but an acknowledgement that 1. there is a problem and 2. we are going to try to figure out what it is, so we can help Joey. Also, we're going back to see the nutritionist. Let's see if we can get Joey eating more vegetables. ;)

I'm always anxious when trying to sketch out our experiences to doctors. You never know what they are going to say, or think, or even if they are going to believe you. Especially when they have Joey in front of them, being his happy little self, descriptions of problems and meltdowns seem so... bizarre. Unlikely. Out of character. Strange. Besides, I seem more and more surrounded by snake oil, and finding it more and more offensive... and more and more afraid of falling into the snake oil trap. When you start talking about Andy as well, and his issues, I often catch those sidelong looks... after all, these people don't know me. Am I serious and sincere, or a crazy lady who over-diagnoses her children, possibly to drug them into oblivion or get attention? On top of that, am I going to prove to be some batty woman who follows the latest in humbug and snake oil? Some of those folks who are into the quackery can be very... insistent. Every virulent. Dr. Rubenstein clearly had plenty of these types to contend with, from his reaction to mentioning a real doctor giving us our original diagnosis and to the therapies we have been providing. When he got to the part where he was explaining he wasn't going to be prescribing us any medicines, you could see the eggshells beneath his feet. It definitely made me wonder how many parents demand pills.

We were very pleased, and look forward to getting the clues together and solving our current little mystery.

42 Strikes Again

We arrive at Joey's OT, but the other child is a little late. To calm himself and fill the time, of course Joey decides to become Super Luigi, running about the office. In the meantime, Andy is trying to hunt zombies with his magic invisible zombie bullets (since we aren't allowed to have darts in our nerf guns unless we are in our own back yard). In assessing the situation, I make sure the boys have the equipment they need. Does Andy need a gun strap? Does Joey need his cape?

What, you thought I would have them sit int eh waiting room or something? They just got out of school! This is their usual scootering time! Get those wiggles OUT!

I cleaned the car out this morning in preparation for our big trip up to Kennedy Krieger in the morning, so I am down to basic car supplies. The cape got taken in. Fortunately, part of my supply kit is a towel. I tie it under his chin and off her goes.

"Wow, you have a towel in your car?" the therapist asks, amazed.

"Of course I do," I reply. "Don't panic. And never forget your towel."

Happy Birthday, Beau

Two people I miss something awful: my brother, Beau, and my Pop Pop Conway.

More Fuzzy Tummy

My mom's cat, Doughnut. He likes to flop over and have people rub his tummy.

After The Battle: Are We Losing the War?

I know some folks find the whole warrior metaphor ugly and inappropriate- but I'm not battling autism. I'm battling the need for Joey's autism to be accepted, understood, and properly supported in school. We have been bitterly reminded of the consequences of losing that battle lately. Joey cannot afford for me to fail, and it becomes increasingly clear that other folks trying to help him have limited capacity to fight, for a variety of reasons (including, unfortunately, job security).

The good news is that we have been mostly blessed with awesome teachers, not just now, but all along the way. A school is only as good as the teacher in front of you. Unfortunately, we are also stuck being something of a pioneer through our system- insisting on services, having a child with Joey's communication issues and social difficulties in "mainstream" classrooms, and even having a child like Joey who doesn't fit what people expect of an autistic child- these things work both for and (mostly) against us. We have teachers who love our Joey and are willing to try. That willingness has proven to be essential and vital to Joey's success, but also reveals basic discrepancies in training, understanding, and experience in many situations. Like the general population, school faculty far too often have limited exposure to and understanding of autism. And then they find a child like Joey, and it completely blows all of their basic training on the subject out of the water.

People forget the Joey has disabilities of a nature that are not readily apparent until need for support becomes dire. Or they miss the meaning of what Joey is trying to do and say. It makes for misunderstanding, surprise, and broad-siding that can have drastic consequences.

Allow me to conjure you an example.

One of the exercises at school is to give the children a "prompt" and have them write about it. Some weeks ago, the "prompt" was about Your Saddest Moment. We can discuss elsewhere why this might be a challenging and inappropriate writing prompt to present to my son, especially in the face of the difficulties we are having with him and his emotional well-being and coping, but hey, I wasn't there. To get the children started, the teacher offered her own example: her fish died.

Joey had a fish, and it died. He often perseverates on this in bursts, and has a great deal of trouble processing the idea of death. In fact, I can say with some certainly that this assignment was likely about three weeks ago, when Joey came home with perseverations on historical figures and the birth and death dates, their means of death, and then started looking up obituaries of random people on the internet.

So her fish died. Joey has a fish that died, and it made him feel sad. I bet the class talked a bit about the death of the fish and why it made the teacher sad.

Now she is surprised that he sometimes come into her room and tries to open up conversation with "I'm sorry your fish died."

The other day, when he did this, she attempted to seize the moment to show Joey why this might not be a good way to open a conversation. She reminded him that the subject made her feel sad, and asked if he was wanting her to feel sad.

His response? "Well, you can just kill me, then."

He picked up on the fact that the teacher was trying to tell him he had made a mistake, and that the mistake had hurt her feelings. HIs attempt to connect and capitalize on common ground had failed. His instant response was to be sad himself, and try to make it better by suggesting a phrase that he associated with being sad and feeling depressed: "Kill me now."

In shock at his words, she responded by arguing with him- she wasn't going to do that, etc. And so he moved on to a new shock phrase, to get her attention and make her stop... and unfortunately, that phrase was, with a smile of sorts still upon his face and a conversational tone, "Then I'll just kill you."

You can see where this might get ugly.

Fortunately, the teacher did not over-react and take this as a real and immanent threat. However, it was also fairly clear that she does not speak Joey, and had no idea how the conversation had gotten to that point. She had no clue that she was teetering on the edge, and playing with fire- that such a response, even with his apparent calm, was a huge bonfire signal of "DANGER, WILL ROBINSON! DANGER! ALERT! ALERT!"

I assume at that point it was time to start the day and the natural distraction of having to attend to the schedule and daily tasks averted disaster, since the meeting was the first I had heard of this incident. That such an exchange might have been important enough to report to me and to the other staff immediately was something that seems overlooked even in the midst of the meeting.

Yes, we are starting on an FBA, which will take at least a month to complete, and who knows what might happen in that (very busy with schedule changes) month. But somehow, it is incidents like these that ring in my head with the potential for disaster. It is stark reminder that I could win every single battle- go in and throw fits and stomp my feet and get the school to do study after study and make plan after plan- and still lose this war to their basic and profound ignorance and lack of training, understanding, and experience. And BIP only works if it is just right, and followed with understanding and acceptance. And I have no magic wand to wave and get people the experience and exposure they need, right now.

Consolidation?

I am considering closing down some other blogs I have started elsewhere, but rarely get to write on, and just making them pages here- My Garden Gate, Cooking for the Kids, etc. What do you think? Would you like to see some other stuff I write about occasionally?

Warm Fuzzy

We all need more warm, fuzzy tummies in our lives this time of year. Especially after IEP/FBA meetings.

Preparing for Battle, Part Two.

Forty minutes. Then the battle commences.

I have my powerpoint ready. I have my list of issues. I have my list of goals.

I am ready to fight for respect for my son.

I'll see you on the other side.

Gearing Up For Battle

I don't expect it to be a long meeting. Obviously, neither do they, as they have slated it for 2pm knowing I have to be home for two kids getting off a bus at 3:30. It won't take long.

We go in to address the recent behaviors that have erupted, the dramatic meltdowns that, to me, is evidence of a serious support issue. After all, Joey isn't learning much when he is screaming obscenities and exploding from frustration. Well, not much about math or history, anyway.

My goal tomorrow is to crunch some data. I want to be ready with some nice graphics when I get asked if I might be wrong, if this might really be a discipline issue. He is getting older, after all. Puberty is upon us, after all. Perhaps...

And before I smack someone, I am going to come up with my nice little graphic. The one that shows him reading on a 6th grade level in second grade, compared to reading below grade level in third, fourth, and fifth grades. The one showing him able to write in full sentences in kindergarden, but now unable to pass a reading SOL* test- in fact, scoring "below basic." The graphic showing his IEP goals being met, and what they were, and his new goals- from being nearly independent in regular classrooms, to returning to the need for a para in every setting.

And then I'm going to have printouts. Each and every powerpoint I have made for these people, starting with the one I made for the third grade IEP. And we're going to take a look at all the times I told them about the red flags for meltdown, and then go through the documentation for the latest incident. Then a little graphic with those red flags actually IN RED- and at what point in the narrative they each appeared. A nice correspondence to the interventions that should have occurred at each of these flags, versus what was actually done, might not be amiss.

A nice graphic about the successful models of support for Joey, versus the time we have moved away from that model, would also be good.

I don't expect to sleep at all tomorrow night. Might not get much tonight, either. Too much work to do.

It is time like these that I am reminded of everyone who told me I ought to be a lawyer. Building a case in clear terms and overwhelming evidence, that is what I have learned to do as an academic. Prep to respond to critique, have the evidence clear and connected, keep it all clear, coherent, and cohesive.

And when my child's life is on the line, don't back down.



*These are our state's standardized tests, "Standards of Learning."

If I Were King

As the election looms near, I start working out what battles I will fighting, whether one candidate wins or the other. And I get to sit here and whine about it, because I vote.

But what if I were voted in? What would I do? It is a game that is kind of like “what if I won the lottery?” Because I am not a multi-millionaire/billionaire, and so will never be able to run for president, I can play all I want. There something sad in the idea that you have to be wealthy to be given a chance to run the country, but that's a discussion for another time. After I win the lottery.

So here is what I would do.

I would have a huge census project completed, pronto. Not of citizens- of the government itself. What does each office do? What does each worker do? What is the job description, and how does that compare to what the person actually does? How much money does each program have, and how much of that money ends up back in the hands of citizens? An in what form (how much is actual cash, how much is service, how much is infrastructure?) Which law dictates each program, office, position? A nice database would make the information quickly available and analyze-able.

With this information, the goal would be to simplify programs so that access to services would be streamlined. We probably would not lose many actual workers in this streamlining, but the rules for accessing government and programs would be clarified and simplified. Instead of having to beg for support from five different agencies in three different departments to try to find services and support for your child or your aging parent or your farm, you would know the one office, which could determine your need and meet it. The time savings all around would be huge- and time is money.

Next, we have to decide what services the government should be offering. That is a more difficult thing, because different people hold different views of the role of government. Having studied many ancient and modern cultures, and see which ones were successful, I would suggest that government’s roles are these:
Common defense of citizens. This includes defense against invasion from others countries, but also defense from disaster, crime, etc.
Infrastructure. Roads, schools, communications, etc. Make sure you can get information, people, and resources where you need it, when you need it.
Standards and commonalities. This includes things like money- a dollar in Maine is a dollar in California; measurements, definitions, and quality.
Social care. We all have ups and downs. Every successful society in the world had means for ensuring its citizens were healthy, fed, and housed. That way, they could work towards other things, like commerce, self-improvement, and progress. Also, since I am of the view that we are all in this together and none of us get out alive, a government should ensure care of its vulnerable citizens through education, health care, food assistance, and housing assistance.

Programs would then be considered in light of these roles. Programs and benefits f programs would be for citizens. Programs and services for non-citizens can be paid for privately- a government is set up to protect and serve its citizens.

The entire tax system would be overhauled. The federal taxes would include current “payroll tax” (supporting Medicare and Social Security) and the income tax, and custom duties/tariffs. I wouldn’t have an estate tax, because that money had already been taxed- it isn’t really income for the family.
The payroll tax would not be capped. I believe that is currently at 13.3%, capped at the first $106K. Let’s put it at 10%, but no cap.
The rest of the personal income tax would also be flat-rate. Everyone would pay the same rate, period, on income, period. I would have to have more data on the needs of federal programs to know what that rate would be. Let’s say, for fun, it would… 12%. That would means everyone would be at an absolute rate of about 22%. Yes, some folks would see a tax increase with that, but most of those folks would be the ones used to getting out of paying any tax at all, because of fancy tax accountant deductions.
Corporation income tax would allow for losses for be deducted. This would otherwise also be a flat rate. Let’s say, 15%. Again, for companies used to taking advantage of lots of deductions, their taxes might go up. Also, it would be for income. You operate in this country, you pay. I don’t care that your factory is in Tahiti, because you are being taxed on your income. All income must be accounted for, including foreign income (as a private citizen, if I make money in France, I still have to pay US taxes on it).

In this new world, immigration would be different, too. There would be very clear guidelines about how to gain citizenship. They would be very simple- learn the history of the country, obey the laws of the country, learn the language of the country, etc. In other words, take the time and effort to become a citizen. Then you get a chance to actually become one. When I was growing up, I was taught this process took 7 years- about the time to get through, say, a graduate program. That sounds about right. Persons who apply to be on this track to citizenship will be provided certain benefits of citizenship in emergency situations (ie, emergency services, etc). Children of those registered as tracking to citizenship would be permitted services of citizens (ie, they could attend public school) if the family chooses to also pay citizen taxes during their immigration period. At the end of the seven years, with the simple and clear goals met, these people would be considered citizens, and go through the brief ceremony of swearing their new allegiance, etc. Anyone born in this country remains a citizen of this country. In case of marriage, the newlywed may choose American citizenship, provided they immediately pay citizen taxes, take the allegiance pledge, and can otherwise function as a citizen.

Yeah, I know, down and dirty, and too many details left blank, right? But hey, I’m also not likely to become the President of the United States any time soon. I’ve got plenty of time to think out a lot of unaddressed issues and possible scenarios. But if I ran the zoo, it would definitely not take a week for helicopters to bring aid to hurricane-stricken areas of our country, when we had a week’s notice of an impending hurricane. Babies in need of medical care to survive would get it, period. So would you, as you get older, and need services and care. Bridges would not be crumbling, anywhere in our borders. And all citizens would have access to free and appropriate public education- and “appropriate” would never, ever be synonymous with “minimal.”