Christmas Visions Past

Pop Perrygo selling Christmas trees on Eastern Market, Washington, DC

This was a small tree for us.

Uma Puma plays with the Christmas tree.

Yes, that is the real Santa and Mrs. Claus with my grandparents. :)

My brother selling Christmas trees on Eastern Market with Pop Perrygo.

These are the Budweiser Clydesdales. They were in town for area parades.

Talking to a reporter before the National Tree Lighting. They showed my clip instead, but Joey loved talking to the reporter.

A bit of good cheer

Holiday Madness

I loved Christmas.

JoeyAndyDad used to tease me about starting up the holiday movies in August. I collect versions of A Christmas Carol. I spend hours making garlands of glass ornaments over the doorways of our house, wiring each ornament individually, each year, to glistening perfection.

When I was young, my folks put up a ten-foot field pine in our livingroom. Dad would take a whole day just getting it up and the lights on. Two more days to decorate it, with Dad doing the very top on the ladder. I remember the first year I did the top, the pride and feeling of being grown-up and competent to go up that ladder and get the topmost branch glittering. The table under the tree held half a dozen paper house villages, plus an array of rubber and lead animals, arranged as farms and fields and aluminum pond with swans. The train had real smoke, puffing as you pushed the transformer lever forward, and watched it turn endlessly through the Christmas wonderland.

I remember the first time I crept out, so happy to have a stocking for my mom to put out. I had been distressed that my mom never got a stocking. A neighbor helped me gather up all the little treasures, and I wrapped each one. I crept out into the moonlight, not using a single light, because I didn't want to ruin the morning surprise. The wooden villages were in every sill of the bow window, the bare branches of the woods dappling the moonlight that shown behind them.

I put those villages out for my mom every year until I went to grad school. As soon as Thanksgiving was done, they could come out. One year, my brother took all the extra wooden trees and made a great woodland for the manor house. I always put it that way every year after, in his honor. Even after he stopped speaking to us.

Every year, I would try one more thing, try something new and beautiful, a new display, a new corner decorated and sparkling. The shelf in my kitchen became my Christmas garden, full of paper houses and all sorts of Christmas trees, the wilder the better. I even have bright glittering pink ones with fruit stuck in them. The mantel also became a garden, though it used to alternate with my Christmas dolls, more in the tradition of an old nativity creche- all the different people coming to celebrate. I have a display of angels, for atop the bookshelf. The buffet was a three kings display until we let the buffet go. I have a scene of a Christmas ball, with figures that move and music that plays. I have one of those penguin toys where they march up the hill and slide down.

The week of Christmas, I make the greens arrangements, the live ones, to go all over the house. I have now been making them for thirty years. Layering in the textures of the greenery, the selection of the highlighting picks, the structure of the line, the bow, handmade by me, as many loops as I can get from the bolt. I even found a little glitter spray does wonders, without harming the greens. There should be one for every flat furniture surface- every table should have one, every side nook.

Mom would make the most beautiful trees from a styrofoam cone and a special kind of weed, one that when dried seemed to be tufts of little stars. Sprayed gold, tucked with old fashioned glass balls and beads, it was the star of the display. I have made a couple, but nothing like what mom could do.

Christmas made the world glitter, brought in the joy and reflected it back like Indra's net, each facet glittering in all the others. Everything was beautiful.Everyone was happily busy, with decorations and cookies and songs.

I loved Christmas.

Every year, now, when the first of the ornaments appear, Joey goes bananas. So much change. Familiar things become unfamiliar, like stepping through the looking glass. School lets out, destroyed familiar structure. There are many things that are only done, seen, said, smelled this time of year, keeping them all new and strange, and only to be whisked away as soon as they become familiar.

He's a ball of anxious mess.

And I find more and more, I just want it to be over. The magic of it gets lost in the screaming. The joy is drained by the meltdowns. Instead of being wonderful, it is overwhelming, terrifying. Too much noise, too much new, too much, too much, too much, all amplified by glitter and glass. Nothing is ever just fun and right. Every outing that should be a delight is instead a carefully orchestrated balancing act, and all too often, I fail at balancing. The smallest thing, unlooked-for, sends everyone over the precipice and into the spiraling abyss.

And I look at the boxes of glass, and wonder why I do this to him, year in, year out, tearing up his world. It isn't that Joey doesn't like the decorations and the whole Christmas thing, but navigating it remains beyond his grasp. And lately, it has been getting worse, not better. Even familiar events have become too much, the outings and activities he loved are minefields. Instead of enjoying the glitter, I find myself constantly poised for fight or flight.

His fight or flight.

I wonder how long he will last. What I will do to help calm him, keep him safe. Wear shoes to run in, in case I screw up and he bolts. Try to get those around me to understand, when it is time to go, it can't wait, not even just one more minute.

I start wondering what and who I am doing this for.

I loved Christmas.

A Different Path

When discussing function and progress with autism, one way people divide the autism community is by "verbal" and "non-verbal." This is one way to avoid the whole "high functioning" and "low functioning" debacle, but it has become like the whole "CE/BCE" thing- it just changes out one set of terms for another, without really saying anything new or insightful. In fact, it skews the whole problem of communication disability and disorder, so that the terms aren't useful for much of anything.

After all, Joey talks. Therefore, he is "verbal."

Then there is this morning. He was talking, therefore "verbal." But he was mostly scripting, or chatting about his own agenda without being able to respond to me. When I asked a question, even a simple one, the best he could do was stare at me. We even had Blankface, which is never a good sign. He ws having trouble processing the question and the response. He just could not do the whole question thing.

I know he was processing the questions, albeit a bit slower than you might expect from someone without communication difficulties. When I asked if he was cold and needed a coat, he went inside, and then let me help him into a heavier coat. When I told him about picking his own learning activity for the afternoon, he started chatting about Cool Math Games. But directly answer a question? It wasn't happening this morning.

Joey is not "verbal." He is not "non-verbal." He is differently verbal. That can be really hard for people to grasp. He uses language in his own unique ways. Some days he can use language in ways we find familiar. Some days he can't. Some days he uses it the way he wants, some days the ways we want. Speaking Joey can shift and change from hour to hour. Its a complicated communication system.

We need to understand that being different is not bad. We expect him to learn to understand us; we should also take the time to understand him. We need to consider what people around us need, how they see the world, how different perspective changes the view. We teach about cultural diversity in our classrooms, we expect our college students to take humanities classes. But culture isn't the only defining factor in experience. Seeing the world differently gives us wider vistas, more tools for understanding the world and solving issues that arise within it.

Understanding Joey and his different verbality, his different functionality, his different point of view is part of that, and gives the world crucial new vistas. We should take the time to explore different paths. They have so much to teach us, and give us, and create new wonder for us.

And wonder is good.

This is Joey: This is our autism.

I fight hard against the fear people are taught. Have no fear- autism just is another way to be. And when we accept Joey and give him what he needs- the respect he needs, just as we all do- life is awesome.



We love you, Joey. Every second of every day, ups and down, ins and outs, all the time and always.

The Truth, the Whole Truth, and Nothing But the Truth

When I read Suzanne Wright's blast of autism on Veteran's Day, I was smacked in the face. I was so stunned, furious, and despondent that I haven't been sure what to say. Others of my tribe have been far more on the ball, being able to twist their emotions into words so beautifully, so clearly, so... quickly. All I could do is look at my son and cry.

Yes, we are coming out of one of those rough patches. The ones described by Ms. Wright, where you lay awake at night- sometimes sleeping in your livingroom- listening, waiting, your knuckles white and your mind racing. Will he try to get out tonight? Is he safe? What is going on in his head How do I help him? Why can't I seem to get anyone else to understand what he needs?

And for a parent, that can quickly devolve into that negative self-talk that Joey wields so well.

We didn't need any more of it, thank you very much.

See, Joey is not lost. He isn't some other person, stolen away from us by autism. Autism is part of who Joey is. There is no Joey without autism. He would be a completely different human being than the human being he is now.

Joey is not a tragedy. He needs help, he needs support, he needs love. You know... like the rest of us. The difference is that he needs supports in a different way than most people do, so we can see it- it is more obvious that he has needs, because they aren't readily met. Like so often in our society, others baulk when we move beyond the one-size-fits-all, when we have to individualize and think about what we do and say. Being an academic, I see this problem all the time. It is the problem I tell my students to shy away from. Not all paleolithic painting was made for the same reasons- there is a span of thousands of miles and thousands of years between sites. There can even be a stretch of thousands of years at a single site. Saying all the paintings were done according to one theory is just laziness. Plain and simple.

To think all people learn the same way, think the same way, and are motivated by the same things is laziness. Yes, there is commonality between human experience; but that should not discount the individuality of the human experience.

Our family is not merely existing. We are a growing, loving, living family. In fact, we learn so much from each other, I would venture that having Joey as part of our family has taught us even more than most of those "normal" families. Or perhaps we have just learned different things. We explore the idea of being human, the joys of living and breathing and eating and working in new ways, different ways, every single day.

Yes, we know families whose children are more disabled by autism than Joey. They aren't just treading water, either. Their experience is different from other families you and I may know, but that doesn't make their experience somehow less.

We anticipate Joey's next move, moment-to-moment. I have trouble working, because I have to be ready in case Joey needs me. This is not usual among autism families. But I do not wait in despair. I wait, wondering how to help, preparing the tools I need to help- not just Joey, but also those who work with Joey, who are trying hard to learn how to help him and support him in new and effective ways.

Do I get depressed? Sure I do. Does Joey get depressed? You betcha. The mental health system in this country is in shambles, which really doesn't help, either. But that's not an autism problem. That's a society problem. The tragedy isn't that people suffer- that's life. Just ask the Buddha. Been going on since time immemorial. The tragedy is the reluctant of people to move their minds and be creative, and think of others. The problem is Theory of Mind- and it is not the autistics that are having trouble thinking others may be thinking their own thoughts, having their own feelings, and needing their own supports and ideas. It seems to be everybody else having this problem. Funny that.

Do I think something needs to be done to help? That things need to change? That policy needs to be reworked and rethought, so that it is easier and more accepted by society to help Joey and his friends? Sure I do. I think it insane that insurance stops autism coverage at age 7, as if autism came to a screeching halt and that there was nothing more you could do if they are still autistic at age 8. I think it crazy that schools are not properly funded to provide free and appropriate education to EVERYONE, including Joey, yet we seem to be able to spit out money for tanks the army doesn't even use or want.


When Joey was very small, and first diagnosed, I received a letter from Autism Speaks. It was a fundraising letter, a request for money, with an anecdote of a father with an autistic son. I will never forget it. In the end of the anecdote, about putting his son to bed, the child dies in his sleep. I. Freaked. Out. I called the doctor who had just diagnosed Joey in a blind panic. Nobody said this could kill him, I cried. Nobody said anything like this could happen. Ohnoohnoohnoohnononononono....

And that doctor got back to me almost immediately. The child in the letter died of reasons other than autism. Because kids with autism are also human like the rest of us, they can have other health conditions, too. Some of those conditions can be, unfortunately, fatal, and yet have nothing to do with autism. No need to panic. Joey wasn't going to just stop breathing in the middle of the night because of autism.

I remember it for two reasons. First, I will never give a dime to Autism Speaks. They are trying to panic people into giving them money, and they don't even use that money to help people with autism. They systematically ignore autistic people, such as my Joey, and pour money into research of things such as causes and cures. If you are into those things, I would still not give your money to Autism Speaks, simply because they are holding you hostage, emotionally abusing you, to get your money. Emotionally abusing people is wrong. Period. Spreading panic for raising money is despicable.

Two, it was a reminder that not every little thing is an autism thing. Pervasive as it is, Joey is still a human being, and other things can happen, too. He gets colds. He has growing pains. He might even get the flu. Our hyper-vigilance may bring these things to light more often, or faster, than another child or family, but that doesn't mean they are connected with his autism. That is the Truth.

Experiences differ. We have out good days and bad days. We have our good weeks, good months; bad weeks, bad months. You know, like everybody else. We believe we shouldn't have to fight tooth and nail to get society to support Joey and help him be a happy, productive citizen, just as they help everybody else, just in a different way. And I do think we have a social emergency on out hands, because people are too lazy, ignorant, and selfish to change things and help others. However, I can certainly craft a message without a national plan.

Treat others as you would want to be treated.

Why is that so hard?

Follow-up: The Meeting

I wanted to pop in and give folks a follow-up on the Meeting. This was not an IEP meeting, but one to discuss "discipline." And I have a few important things to say about it.

For one, I am totally and completely grateful for the people who work directly with Joey, or as I prefer to call it TeamJoey. We only as the New Autism Person, the WonderPara, and Dr. Awesome (the vice-principal) from TeamJoey at this meeting, but we also had the other vice-principal and the principal at this one, because it was a discipline hearing. Also, I took my friend, who is acting as Joey's advocate (and is doing a FANTASTIC job keeping things moving when all I want to do is scream and sob wildly, and who knows what questions to ask), SuperDude. And the best thing I can say for all of these people is the highest praise I have:

They all love Joey.

So that's a good place to start. The problem is they have no idea how to help him. I came out of the meeting much happier with New Autism Person, because I felt there were lots of ideas coming from that quarter this time, and that they were definitely against this being a discipline issue. Its a disability issue, not a discipline issue. But I think I've already discussed that, right?

Finding that professionals do not know what to do in their professional capacity, however, is something I always find disturbing. Yes, they asked questions. So did we. The principal was accommodating, but a bit on the boast-side of being so, since I had specifically met with them before the year started about this exact very possible problem, and was told everything would be oh-so-fine. And I did get to look them in the eye and say, "you know, at home, every time Joey has a meltdown, I did something wrong. Every. Time." Because you know what? You don't punish someone else when you make a mistake. And Joey is the child. I am the adult. Doing the right things to de-escalate and support him is my job. Not his.

Teaching him to self-regulate and cope, so that when he is an adult and it does become his job he can do what is needful, is also key. It's also in his IEP. Punishing a child for failing at a lesson before he's been taught it is also wrong.

This is why using positive, proactive strategies is so critical. Try not to have the meltdown in the first place. If it starts, be ready. Try to counter-act, but be ready in case it spirals to a Level 10. KNow what to do to keep everyone safe.

This is what I am asking for. Don't suspend him. Teach him.

Now, we move on to another IEP (we already have the FBA underway). So I am putting together a Manual of Joey, to do some JoeyTraining, since what I've done so far has been... not ignored, but not taken to heart, either.

I'm a teacher, after all. I can do this.

Real Terrorism

I sit here, waiting. I had to cancel my work shift. There is no way I am going to risk scoring exams today, those are people's lives on the line. So I wait.

I haven't slept. I passed out for about an hour, but not slept. I spent the night trying to track down anything I can find online about autism, anxiety, aggression, meltdowns, positive behavioral interventions, you get the picture. I need to go to the library and get real information, but that got spun out, too, because Andy is sick.

Allan got a phone call Friday, while I was at work.  There was something about discipline, and an incident on Friday, and needing to discuss an earlier suspension. There was confusion about the phrase "need to meet before Joey returns to school." Of course, I went there at once, but no one was there on a Friday afternoon at 5pm. I emailed. I called. I finally got a response, with this same phrase in it, at 6pm on Sunday night. I emailed back as soon as I got that email, about 20 minutes after it was sent, to get clarification. I got no response.

So this morning, I had no idea if the bus was coming or not. I decided to act as if it was, and went through the normal morning routine. We were in luck. The bus came. No meltdown over that, but with my nerves, Joey picked right up on red flags- he was brittle. I emailed the school, but that did about as much good as it apparently usually does to tell them anything- none at all.

The phone rang. My heart dropped. Joey is having trouble at school. Joey's advocate can't get to school until 1, but can't I move it up? No, I can't. No advocate, no meeting. I'm not going in there, after having loaded them already with information about why they shouldn't be suspending my kid, without that advocate. There needs to be somebody on Joey's side in there who has had some sleep.

And then there was the reports this morning. h, I finally get the "report" I was supposed to get on Friday, but that teacher "doesn't know what happened in ISS", that was the para. So I ask for a report from the para, and get told, oh, the para doesn't send emailed reports. But she is the only one with the information. I am not walking into a meeting with admin with no information, how would that be fair to Joey?

Four times in four weeks. They have suspended him four times in four weeks.

With all this, how can he possibly be safe? How can he possibly be in a proper environment? If they keep suspending him, doesn't that say, loud and clear, that they cannot handle him or support him properly? And yet, if I go get him, the school "wins" because they don't have to provide him with his education and services for the day. Or the week. Or whatever. They don't have to service him when he is suspended, because, well, he's suspended.

I should have have pulled him from this system three years ago, when we first saw him regress from lack of support. He left second grade a happy, healthy kid, well on the road to being a functional, self-regulating person, ahead in almost every academic subject. Star in math, star in spelling, reading on the sixth grade level. Able to walk independently between classrooms, between class and cafeteria, between class and bus. I should have pulled him when, come September, none of that was possible. I should have hired a lawyer. I should have gotten him into a better school situation. I should have insisted on the model that worked for him: academics in the morning with teachers well-versed in Joey's needs and with his para on standby, lunch at noon, afternoons with autism-specific resource services. I should have done something. Anything.

Anything but this. The waiting. The wondering. What is happening to him? What is he feeling? How is he being treated? Is he safe???

Out of sight, out of mind

Trying to fight for understanding of both Joey and Andy everywhere is a daunting task, often an overwhelming effort of fighting prejudice so ingrained, so pervasive, so accepted in our culture and society that we find ourselves at a loss for explaining why it is so inherently wrong. Our culture's experience and even language is geared to fully accepting the discrimination, takes the prejudice as accepted and fact, weaves it into the fabric of even basic communication and understanding.

It has been really rearing its ugly face this month, too. Joey has been suspended, either in or out of school four times in the last month. Four times. He has been so overwhelmed by anxiety that he has lashed out in frustration, melted down, with power, violence, and vehemence, that they have removed him and kept him out of his classroom- and once out of school- FOUR. TIMES. We're averaging once a week. I can't see how, even if this was a situation of simple "bad" behavior, this would be viewed as effective or acceptable; but being that Joey is autistic, and related to that has a severe anxiety disorder, it is simply insane.

Yes, I know he hit adults, shouted obscenities, and did some other things that were unexpected and inappropriate in his frustration and desperation. Yes, he was able to communicate that he wanted to go home, and did most of these things with that goal in mind. If you were trapped in a haunted funhouse of freaks and wanted out, you might try anything you knew would get people to help you leave, too- anything you've seen or experienced as successful in getting you the hell out of there. Having the freaks tell you that you aren't allowed to leave and have to do strange, overwhelming tasks (or monotonous, pointless tasks) you know are impossible for you to do that moment, upon pain of scorn and punishment (or even if they try to bribe you into doing the impossible tasks) would probably make you fight harder, or try something more desperate and energetic. Like hitting them. Like running out of the room, or trying to escape the building.

Now imagine you've been in the funhouse for years, and have to go through this every day, with no end in sight.  

See, Joey is disabled, and that disability includes issues of handling anxiety, processing sensory information, and regulating emotion. It also includes problems with effective communication, though I more and more suspect that is a problem that cuts both ways- he has trouble communicating, and people around him don't put in the effort to understand, which makes it a frustrating spiral of nonsense. He lives his entire life like Alice in the Mirrorworld, only he never wakes up from it. Wonderland and Mirrorworld are the realities he has to learn to deal with. And I'm not talking about the fluffified Disney version, either. I don't think it any wonder that these kids struggle with depression and anxiety. I don't think it any real wonder that Joey has been struggling with depression and anxiety for years now.

Trying to explain this disability, and the need for supports, to other people shouldn't be hard. However, I find it is like trying to have a long talk with the Caterpillar. After a while, you wonder who is the one not making any sense.

We have friends who are in wheelchairs. Yes, they are trying to learn to walk. However, I have never seen anybody punish them for not walking across the room, even just once; or take their chairs away for a day, because hey, they won't die without them, right?

This happens to Joey all the time.

Who would put the Deaf child in the regular ed classroom without an interpreter, because hey, they're smart, and shouldn't they be able to read lips? Why isn't that good enough for them to understand this new science lesson? Or maybe we can throw them in with an interpreter, but we don't offer signing lessons. What, don't Deaf people use sign to communicate? Why doesn't this child understand sign automatically?

This happens to Joey even more of the time.

And really, it boils down to autism being invisible. You can't see it. You can see clearly that our friends cannot walk. You can see their legs and feet aren't developed for it, and you can see they struggle when they try, even with fancy walkers and supports. A Deaf child tossed into a hearing classroom without support is also obvious. It's ridiculous. It is so ridiculous, it's stunning how often it actually and really happens- after all, you can't usually tell someone is Deaf by looking at them.

Autism is invisible. You can't see the processing problems, the neurological differences. The facets you can see are often overlooked- for example, Joey's weight, which is a combination of metabolic difference (due to neurological difference), dyspraxia, and sensory disorders (Joey is sensory-seeking with oral stimulation), is often just overlooked as too much ice cream and credited to laziness, bad parenting, or whatever, because our society is so totally accepting of weight discrimination and fat shaming. (Autistic kids who have the opposite issue, where they may be neophobic or otherwise don't eat or absorb calories, move constantly, have a high metabolism, etc. also are not seen to have any real "issue" either, because our society loves thinness and values it- so those kids get no help or support, either). The uneven ability to access skills is ignored by the adults who should be helping him and teaching him.

It's even in his IEP. Goal: to be able to cope with stress using behaviors appropriate and acceptable in a classroom. It's right there in his contract. He's learning to do this. Expecting him to do it is like tossing Alice in Wonderland at a kindergartener and expecting them to read it, because hey, aren't they learning to read?

Then punish them if they don't read it perfectly, aloud, in front of the whole class. Punish them in a very visible way, one that students find particularly threatening or humiliating. Like, say, sending them to the office and suspending them.

Think of how those other students might feel, seeing what happens.

Why are people shocked by meltdowns? Why aren't school staff extensively trained to deal with them? After all, it's not just autistic kids who have them.

Imagine how you'd feel.

Homework

Joey has a lot of trouble producing language on his own. Like Mrs. Who, Joey's speech is mostly quoted from elsewhere. I think often people is just how much Joey relies on scripted language to get through, and think he speaks a lot better than he actually can; but it is still quite noticeable that he has trouble with language.

So the teacher thought it appropriate to send home a worksheet where Joey had to change "Plain Jane" sentences into "fancy" sentences. This would require Joey to make up his own language, based on a sentence given- a task that is, to be frank, impossible for him. I braced for the screaming, but he happily looked over the sheet, and selected it as one he would do this evening (they sent home 6 sheets and a math project- we are NOT getting through all that today). Pleasantly surprised, I said ok, and braced again. But he started right in on it.

And here, folks, is Joey's interpretation of his homework sheet:

Hey, he made 'em fancy, yes?

Published by Joey's permission. 

Joey the Artist

Down By The Corner

I sit on the porch, trying to remain calm, my eyes following every movement of the bright orange shirt as he moves down the walk. He sings, "ding! ding! ding!" as he looks both ways, Oswald-style, before crossing the street. He ambles across, a sure sign that there are no cars in sight. I watch.

And I hold my breath.

There are several families at the corner, they are waiting for the school buses from the elementary and the upper elementary. Andy is on the upper elementary one, and Joey declared he is going to go pick up his brother today, just as Andy often used to "pick him up" by meeting Joey's bus as it stopped at our door. After all, Joey is the Big Brother, he reminds me. He's eleven years old, now, and has to take care of his Andy.

He wants me to stay on the porch. He wants to do this himself. He wants to go to the corner and play with the smaller kids waiting there for their big brothers and sisters, talk to the moms and dads. He wants to be himself, with other people, with his friends.

So I stay on the porch, and watch, ready. Triggers can be so small, so sudden. I cannot let my guard down, especially with him half a block down the street. I know the adults there know not to let him run, but I would not want the burden to be on them. And though I am ready, I am optimistic. If I didn't think he could do this, I wouldn't let him walk across that road, down that street, all by himself. In my heart, I know he won't run. I know he wants to do this, he wants to be happy and hang out, like all the kids and adults he sees down there. He wants to be a part of the world, and he knows other kids his age do this.

I watch the orange shirt, even though I have brought the iPad out as I usually do, though I have the mail to read, both are idle in my lap. I watch, my heart with my eyes.

The first bus comes. It is the younger bus. I can hear his happy squeals of greeting, as kids he doesn't really know come off and hug their parents. He's just glad to see kids. They seem happy to have such a big kid who is happy to play leaf-battle and tag with them. They can communicate, they have even communication skills. They can relate to each other, and he's happy, and he's playing... at the corner.

The second bus arrives. I can hear the joyous "ANDY!" clearly. There is some more leaf battling, but the group begins to break up now that all have arrived. They amble back together, brother with brother, arms around each other's shoulders. Well, actually, they appear to be wrestling. But at least it's friendly.

It's a brother thing, down on the corner.

It's the Small Things

Morning routine. I rouse the Boy, who turns and blinks at me with that sleepy-head look, then grins a little.
"Time to get up, little man," I say as cheerfully as I can, wishing I were also still in bed.
"Hi, Mommy!" he is suddenly wide awake, ready to start. I head out to the hall, make sure he has his clothes laid out in the right order. He tumbles out and hugs me, a big bear hug, a good-morning hug. There are no more words yet, but that's OK, he'll have some by the time he comes downstairs.

Together, we sit ont eh porch,waiting for the bus. It is still dark. He repeats what he told his father the night before.
"I like middle school. It is much less stressful than elementary school." It is a statement, a fact, something to note and share. I smile, and he starts fingerspelling as fast as he can. His fingers can move faster than his mouth, and his fingers are through the alphabet before his voice.
"You are getting really good at that," I praise him.
"I love you, Mommy," he sighs, and lays his head gently on my shoulder. What can one do, but kiss that head?
Then it snaps up again. "A-p-p-l-e i-n my p-o-n-d!" he sings. "Apple in my pond!" It's a script, but it is the end of it, no response is required on my part.
"Red and yellow make orange!" he chimes after a brief pause. I try to think of something to say, to help him feel connected, to let him know I hear him.
"Colors mix above my head..." I start to sing, thinking fast. "Like orange made with yellow and red!"
He giggles. I hope it was what he was asking for, though I suspect it didn't matter what I said, he just wanted me to speak. I don't have many words in the morning, either.
The bus comes. He wants another kiss before he goes off on his new adventure. He wants another hug. Then he's gone, as he has been since he was two. Off on the big yellow bus.

And I am left here to miss him.

The Right Words

Self-deprecation rears its ugly head around here, whenever things aren't going the way Joey wants them. It has become his go-to echo-script whenever he is feeling bossed around, or is told he can't do something, or is asked to complete a chore. It gets very wearing to hear him saying these awful things, and we have been working hard to get him some more effective and constructive self-narrative and internal monologue. The folks at school have been working on it, too.

So apparently, JoeyAndyDad had a little trouble with Joey this evening. Something about an eleven-year-old not wishing to bathe. That, of course, will not do. JoeyAndyDad finally got Joey scrubbed and tubbed and into his room. Joey, being angry, of course reverted to echo-scripting to communicate. And then there was this:

"Dad, go to your room!"
"I can't."
"I don't want to hear that negative self-talk! Tell me something positive! Tell me why you can't go to your room!"



Dear School Folks: You rock. And thank you.

Bare Necessities

Joey had a hard day.

We started with me running some advil over to him for a (highly unusual) headache at school. He got better, there were reports of unusual behavior- OK, but unusual- all day. Then he came home.

That's when, as usual, the Witching Hour began. It just never let up.

So when I caught him with his tablet after lights out, and he lost the privilege for three days (second time he's been caught!), it was not a surprise to us to be facing a Level 10 meltdown.

Yep. Long day.

So I'm grappling with his self-deprecation and other unpleasant language, and trying to stay quiet (trying to do social skills work at 11pm on a school night is just not a good battle choice), when JoeyAndyDad comes in, singing "I Wanna Be Like You."

One of our strategies for pulling Joey out of meltdown spiral is complete distraction and redirection. This is more difficult than it sounds, because you are trying to address a potentially explosive situation, and you can be so focused there, that it can be hard to come up with something to distract. Completely random, unexpected behavior, however, is a good trick for us. It kind of sets a shock to Joey's system. Here he is, upset about his tablet and not wanting to sleep and wanting his game and not feeling well and AAAAAAA.... and here is his father, singing and pretending to be an orangutan. You might see how that might be distracting.

And then we broke into a duet of "Bare Necessities", and having been Baloo in his play, how could Joey resist joining in? And then giggling? And then getting mad because he is giggling when he is supposed to be mad, which then makes him giggle more?

Sometimes, you just have to pick your battles. Joey and I can talk about what he said when he was in the red zone later. First, we have to get back to green.

No Excuses: Part Three

Yes, I have something else to say in this matter. And it is a matter that comes up way too often. To be clear and honest, having it come up even once is "way too often." For it to keep happening, for there to be whole web pages dedicated to the lives lost because there are lives shattered and lost is "way too often" by an exponential of "way". And I have something more to say on the matter.

That is the growing war between Families and Self-Advocates. It is a war that is not only devastating and horrible as any other war, leaving useless casualties in its wake, but it is completely self-defeating and purposeless as it is being waged. Instead of growing understanding and co-support, lines get hardened and people get terrorized. Both sides, people. Terrorized on BOTH sides.

The real problem is a misunderstanding of how we both contribute to our common goal: getting people who know nothing of the matter and are in need of education and compassion to move further along on the path to that ultimate goal, acceptance and understanding. If we could achieve that goal, that ultimate understanding that All People Are People- and it is, unfortunately, still a highly radical idea on all fronts- then most of this would go away. It would be so much better in our world, where people would be properly supported, educated, and employed as they needed, and everybody just took others as they are, instead of how they think others and even they themselves should be. Imagine it. Just take a minute to imagine if you could just be you, and get what you needed, and even if people don't like you, they at least understand you. And you, them. Just think about it. Imagine it. That's where we want to be. No, I'm wrong. That is where we need to be.

The job of a self-advocate is daunting. They have the job of helping people understand this concept that all people are people, and it is their very lives that are on the line. They risk everything to rock the boat. They are, understandably and reasonably so, extremely angry. If the world told you that you were subhuman wastes of resources and oxygen, and reminded you of this opinion every single minute of every single day of your life, you'd be angry, too. People deal with anger in many different ways, and self-advocacy is an important one for fixing the problem, at its very core. They are the people who understand, despite being told otherwise all their lives for generations immemorial, that they are people. They are the ones who know it best, and can teach it best. That is their job- to watch and guard their personhood, and communicate it to those who don't understand. And ultimately, that is everybody.

Self-advocates are at a wide variety of places and understandings in themselves, in their roles, and in their methods and reactions. Folks, this is as it should be, and must be. We all must understand that, or we get no where and start masticating ourselves, like Saturn devouring his children. 

The job of a family advocate- usually a parent- is to make sure that personhood is respected and try to translate missed messages between the self-advocates and the ignorant, often hostile people who haven't understood that All People Are People. And parents, like self-advocates, are also fighting that deeply ingrained social lesson, so thoroughly accepted by the followers of Ayn Rand, that some people don't count. Some people are lesser, and trash to be used and tossed. And if they aren't useful and productive, or useful and productive to a certain standard, they are wastes of time, resources, and effort. How thoroughly our society and culture has swallowed this! Yet when you have that loved one in front of you, how incredibly fast you learn how ugly a lie this is. People are people, and they, every single one of them, have worth, value, and deserve respect, love, and support. And we know how hard it can be when you are fighting battles for someone else. Parents and family advocates are angry. Their job is to protect those who cannot protect themselves, and protect the rights of those who cannot fight for themselves, against those who do not understand, and think others are a waste of time. And ultimately... that is everybody.

Rarely is a lesson learned in complete epiphany. It is a process, and parent-advocates are at a variety of stages and places in the learning process. They have a variety of methods and reactions, and a variety of learning styles. As is should and must be. We all must understand that, or we get no where.

Pillorying each other is not going to help. Teaching and learning is a process that takes time, effort, and support of each other. We need to face obstacles that are complex and make sure we all get through this together, as best we can. We will all make mistakes. We need to keep it civil and supportive between ourselves, or we just end up crucifying each other, reinforcing the idea that some people are not worth effort, or time, or resources. It is self-defeating to try to silence other voices.

Self-advocates, keep up the good work. In these times of crisis, keep up your voice. There is no excuse for killing anyone. All people are people. Keep educating, keep pushing, keep making sure the message is out there.

Family-advocates, keep up the good work. In these times of crisis, keep up your voice. There are reasons people become desperate, and until we all understand All people are people, we need to try to strip away the other obstacles that keep our loved ones in the silence. Keep pushing for services and understanding. Keep getting the message out there.

And together, we can get this done. I believe it. Keep the faith.

No Excuses: Part Two

Back in June, I wrote my manifesto on the role of a parent, and a child's right to live.

Now we need to take a look at another facet of the problem. That is the common claim that, somehow, a lack of services is an excuse to murder your child. It is not.

What I find more frustrating is how those services are described: services for the family, services for the parents, if only that mom had more support and services...

Where the system is broken is not in the services the parent needed. As an adult, I take that responsibility for "services" myself. It is up to me to put together my network of friends and family, and make it strong. If you are unaware of what services are available to you, I recommend contacting family support services, whatever they are called in your area. In my area, we have a Disability Resource Center, we have the Community Services Board, and our school has a Parent Center. Heck, call the school guidance counselor, they know people to call. If you attend church, mosque, or temple, they are a good place to call. Need an idea of what kinds of services you need? Look into these: a therapist or counselor for talk therapy, respite services, support groups, local activities, and hobby groups (which are good for respite and support). If you can't find someone in the neighborhood to be a buddy, hop online. There are lots of support groups, pages, and people out there to help and welcome you. Even if your child has a rare condition, there is someone, somewhere, who is also looking for someone to talk about it and how it is affecting their family. You are not alone. If nothing else, drop me a line, I'll work on it for you. And since you are out there, check on all the threads in your networks, and make sure they are doing OK. Send them silly cards. Send them virtual hugs. Send them prayers. Whatever you think they need to make sure they are OK, and let them know that if they aren't OK, you want to help, and not judge them. Its kinda like the penny exchange. Have a friend, be a friend; need a friend, here's a friend. We are all in this together, people. Really.

No, that's not the broken part. The problem is not in services for me. It is the issue of getting services for my kids (or for your loved one... child, adult, cousin, friend, whomever). Services that they need, they deserve, and they have the right to get. As a society, we are all in this together, and so we all pitch in to provide means and services for those who need it. Fairness and equality is in making sure everyone gets what they need, not in making sure everyone gets the same thing. My kids need support to learn to do things independently and effectively. They need to be taught how to control their temper and communicate their needs effectively. They need speech therapy, occupational therapy, sensory integration therapy, vision therapy, extra teachers, paraprofessionals, and supports. They need certain equipment and specific methods and trained people. And if they get all these things, we will have adults who are as independent and living as well as they can, and contributing to the world around them as much as they can. If they don't, they won't. It really is just that simple.

But getting the services they need is not that simple. All of these things cost money. Everyone wants to pass the buck and no one wants to help pay for what is needful. Even when the costs are minimal, you have roadblocks: they take time, or patience, or understanding, or other effort that far too many people don't want to expend- mostly because they see your child as a waste of resources. You pay into the pool of medical insurance, but they decide they don't want to pay for the services your child needs to succeed and be independent. They pass it off as educational, and thus for the school to pay for. Or your child makes some progress and is suddenly not disabled enough to be considered eligible for service, even though they remain behind. The doctor prescribes therapy and intervention, but as soon as it starts actually working, the plug is pulled... and this is discrimination at its most devious. When the doctor prescribes a ten-day round of penicillin, the insurance company doesn't just pay for two days, since that's when your symptoms improve. You have to take the whole ten days, or the infection recurs, and often worse than before and penicillin-resistant. You may even need to take medication for an extended illness until the doctor proclaims you cured. But if your doctor prescribes occupational therapy, the company can simply stop paying- without recourse or warning- because they decide you seem to be improving. Or they can chop you off arbitrarily, whether you are better or not. Shouldn't my doctor be deciding if I am done with my cure or not?

Then the schools. Holy crap, trying to wrench your child's rights and services from the schools, it is enough to make you scream in the night. Even if you find a method that works, you have to fight for it each and every time, each and every grade, each and every teacher, each and every school. Ignorance is rampant, at every level. And then they tell you that a service is medical, not educational, so they don't have to provide that, you have to go through your medical insurance. You know, the insurance that just denied the service because it's educational.

And you know what? Medicaid and respite services are not for the mom and dad. They are for the person with the disability. There is a new person to check on them and work with them, and the caregivers get some breathing time to recharge so they are better able to help. Respite helps keep everybody healthy.

The constant battle to maintain the right to life, liberty, and the pursuit of happiness is wretched, ugly, and depressing. Depression kills.

And it is all completely unnecessary. If we valued our neighbors, our people, we would be investing in making sure their rights to life, liberty, and education were being met and upheld. Instead, schools hold bakesales to make ends meet. When a treatment becomes available and is prescribed, the person should be able to access it- the FULL treatment, without having to resort to bankruptcies (when the family goes bankrupt, how do you think that effects the person in need of support?), community fundraisers, and war with bureaucracies at every turn. My children should not suffer because I am a poor politician, or a bad negotiator, or even if I'm a complete ass. They should get what they need, and the supports that are their right. Period.

The reason they don't, the reason parents have to go to war and wage constant battle to get those rights respected is because too many people do not see people with disabilities as people. They see them as lesser, as wastes of resources, wastes of time. Or they view them as somehow forever children, to be patted on the head and seen, but not heard. They are seen as drains on budgets and stretchings of staffing, rather than as people with needs. The supports are viewed as advantages and perks, rather than access.

It always amazes me, however, how many of these roadblocks wear glasses. They would be aghast if I arbitrarily declared they were not permitted to wear their glasses during my IEP meetings, because those glasses give them unfair advantage, and look ugly, and do they REALLY need them, anyway? But they have no problem saying this about the accommodations our kids need. And adult support services? Talk about leaving people out in the cold...

So we need to start tackling these problems, from a lot of different angles. Everyone needs to understand that people are people. No exceptions there. That my kid has the same right to live and be educated in this country as any other kid in this country. Then we need people to understand the important in investing in that education, and the education system. At the same time, we need to make sure adequate and appropriate support services are in place so that everyone gets what they need, when they need it, and for the full course of the need. No one should be scrambling to pay for their last eight days of penicillin.

As parents, we need to know, to our very core, that our children are precious, and the owners of themselves and their own lives. We have no right to take that away from them, for any reason. Even when we make mistakes. Even if we are jerks and horrible at our jobs. Even if THEY are jerks and make mistakes. If we can't understand that through every fiber of our being, how can we expect those who stand in complete ignorance to ever understand it? You can't teach what you don't know.

Your children are my children. Your families are my family. We must understand the preciousness and respect the lives of all of us. Check on each other. Keep an eye on your own life and fatigue levels. Watch for depression to sprout up around you, and take steps to protect those who fall to it. If you feel you made a mistake, come to the boards and post it out, and we'll rally to try to figure it out and fix it. Because we love you, we love your kid(s), we love your family and your community. And we are all in this together.

United we must stand.

Bad blogger. No doughnut.

I know, i have been totally remiss in blogging. We've been a little busy here, doing this:

And this:

And this:

And this:

And, well, this:

And then today, we started this:

I might have some time tomorrow. Or the next day. No, really...

Hark, To the Store!

Joey was up and ready, JoeyAndyDad and Andy were not, so I decided to take Joey with me to the grocery store this morning. Impromptu adventure awaited! Working on life skills 1:1, while get the grocery shopping done! It's a win-win!

He insisted on taking his shovel with him (by the way- anybody need sand pails? We just need the shovels. I've quite a collection now). We made our list of needfuls, got ourselves to the store, and proceeded to the adventuring. Joey was happy to pick out his own grapes, bananas, and apples for the week. He was excited to discover we were also shopping for Grandma, and he got to pick out her weekly treat (coconut danishes!) There was a train to watch for a while, and people to talk to, and the cart to push.

Happy boy.

But also anxious boy. People to talk to means people everywhere, and not all of them are happy to talk. Some might bump into you. You might bump into them. The store has high ceilings and wide spaces. The lighting is odd, high and flickering, dimmer some places, brighter in others. The din of the people and carts and music is constant. You are surrounded by a new place, full of unexpected surprises.

What better way to get through this than by singing and dancing, right?

So my boy and I sang "Bare Necessities" through the store, together. And sometimes, Joey did his Baloo dance. And when he started getting tired, he started making up sillier lyrics for the tune. I took the cue, got in line, and got us out of there, even though there were a few more things I wanted. Success for Joey- a pleasant trip to the grocery store- was far more important.

So I leave you with a new image- my boy and me, singing away as we thread through the supermarket aisles. We make a great team.

All To Himself

Andy spent the night at Grandma's. Mostly because he loves being at Grandma's/ Partly so he could avoid cleaning his room. But you know how that goes. No, I didn't touch it.

Joey came home to find no Andy.

"Where's Andy?" he demanded.
"He's at Grandma's," I told him with a smile. Joey hasn't been able to stay at Grandma's since he started bolting, because Grandma can't chase him down, so he's been getting a bit grumpy about it. Therefore, I added, "Since its just us, we can do anything we want! What would you like to do?"

"Go pick up Andy."

****

Artiste at work

But what this meant was Joey had me all to himself all afternoon. So we went to lunch at his favorite spot, and picked up some more paints and some tiny canvasses he saw at the craft store, and spent a good amount of time painting and mixing colors. All this time, we mostly scripted Blues Clues episodes, to his great delight.

Then he looked at me and said, "Let's go to D's". I called up D's mom, and they were delighted, so off we went. He got to spend a few hours with his buddy down the street, who isn't in ESY this year for reasons unknown.

To end this perfect Boy Afternoon, we played some Joey's Clues to find out what Joey wanted after playing at his friend's house, and it was Take A Nap. So I tucked him into bed. He asked me to read him two books- one was Goodnight Moon- and sing. I haven't been asked to sing in ages. He wanted the ones he liked best when he was small: Michael Row Your Boat Ashore, and The Fox, and Shoo Fly, and Wheels on the Bus, complete with our own special silly verses. If he didn't take up the whole bed, I would swear he was 5 again.

Summers are hard. The schedule is up in the air, even if you are actually liking school for the first time in a long time and getting to indulge in your new art interest. Now having your constant playmate at home is hard. Having long afternoons to fill is hard.

Sometimes, its nice to have a Mommy break, and be little again-- when things weren't so hard, and they were familiar and happy and simple to process (at least it seems so now, when you have already processed them). So we spent the afternoon having a break, with plenty of hugs and kisses and Mommy all to ourselves.

Now, its time for me to go get Andy, and see if I can get him to pick up the trash in his room.

The Spirit of Adventure

A very dear and respected friend wrote to me this week, and ended his letter with an invitation to join him in India. He is getting older, and I worry that each visit he makes to India- and each letter I get from him- may be his last. You know I would totally get a ticket and go, if I had the money.

The invitation included the boys.

I read it, and re-read it, and turned it over. How much I wanted to be taking the boys to India now! The boys are old enough for the trip to really mean something to them, to be a watershed moment of their lives, for good or ill. But life has intervened on my plans. I am just now getting a full-time gig, and it isn't a permanent one (its a year-to-year contract- the new "trend" in academia). And then there are the boys' needs- Joey and heat don't mix well, and there is one thing India is- hot. Even in the coolest part of the year- which would them bring in the problem of crowds- it would be, for Joey, hot. Not to mention the new, the unexpecteed the unpredictability, and the shear overwhelming different-ness of India...

But I also know my friend has a child of his own, now grown, with special needs every bit as great as Joey's. I don't know if he has ever taken his child to India, but somehow, I suspect he has.

And he invited my boys to go to India. What an opportunity, to have my boys be in India with my friend and I, and exploring India...

So I put it to them: would you like to go to India some day? Not today. Not this summer. But someday. And Joey came back without skipping a beat, " Yes!"

Andy put in some rambling no-ness, which was distracting. Had I really heard Joey say he wanted to go to India? Did he understand what it meant? We talked about India being a different part of the world, a different country, and what travel might mean- a long airplane ride (my kids have never been on an airplane), a stop in London (they love their London Olympics video game, so I thought this might perk interest from Andy), and... the heat.

"Yes," Joey chimed in cheerily. "I would like to go to India!"

That's my boy. I know what I'm saving up for this year. And we may not go this year, or next. There are a lot of challenges to be met and considered. I know there will be challenges we won't think about until they appear before us. But Joey wants to go to India. You know I need to make that happen.