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.

***HAPPY DANCE***

I just got a full-time job teaching at our local community college! SO HAPPY!!!!

So looking forward to getting caught up in therapy payments... I mean, teaching lots of students!!! ;)

Just wanted to spread the joy. Sending all my readers happy hugs!

Assumptions and the Point of View

I live in a world where we question and challenge basic assumptions all around us, every day, simply by existing. We challenge what people think it means to be human, to be intelligent, to be functional, to be autistic, to be "normal", to be happy. We make these challenges because it becomes quickly obvious that our lives and experiences are different from what appears to be a vast majority of how those around us think, feel, and experience the world around them.

I have lived my life this way.

When I was very young, I figured out very quickly that I understood the world, other people, and even space differently than other people around me. It has been a constant struggle to relate and connect, because I relate differently, I make connections others don't make, I live is a network of connections and assumptions others don't have. As I grew, I found it wonderful to discover other people who, though they didn't see the world like me, still saw it in ways that were unique, interesting, and diverse. This may make for a lot of difficulty trying to connect with other mommies at the park (I'm not fond of Titanic and have no interest in reading Shades of Gray), but it makes for a wonderful world of friends and experiences- never a dull moment, always something new to think about, even as they fade in and out, coming into focus and out again, spinning like stars in the void, little nestlings, oases if you will, in a vast press of banality.

I may not have many friends, but each of them, I assure you, is a jewel, in their own fascinating facets and flaws. We hang together like Indra's Net, a constant glint and dazzle of cosmic gems. Meeting a new friend is always a wonder for me, an earthshaking event to be marveled at, wondered about, explored, and relished.

Some years ago, I stopped by a friend's house; I was bringing her something, and just stopped for delivery. She was having a little book club in her house. They were discussing a book I had never heard of, but I was invited to stay because it had some connections to South Asia and my friend knew I am a South Asianist. I would say I was one of the few neighborhood women who hadn't been included in the club invitation- which for me is par for the course, really.

The scene they were describing was, to me, almost surreal. A man had kidnapped a kid and apparently forced the child to be some kind of sex slave (no, really) and had somehow managed to injure the child and thus put in the hospital (people read these books?), where he was now lamenting that bad things always happened to him (not the kid, to himself), and how terrible and miserable it was that the kid was injured, because now he might have to go without his little sex buddy for a while.

They got about halfway through this description, and had started on how was feeling badly, and I thought sure this was going to be a moment when he realized what a misery he was making this kid's life and then do something right for a change- but no, the character was a complete and utter selfish jerk who could only think about himself, crying over how he was being inconvenienced.

Then came the part I found really surreal. All of these women started chiming in about how they related to this character, and didn't we all feel this way when things happened? Everybody thinks of their own inconvenience first, their own self first, after all...

And I knew, instantly, that I had nothing in common with these women.

The flippant attitude, the idea that all people are, by nature, selfish and mean, and that everybody feels... well, the way they do- there is something inherently arrogant in that. I won't judge them based on a single conversation about a single character in a single book, either- the scene I describe is not absolute in who in that room I ultimately liked or disliked or whatever. It was just a keen, and somewhat embarrassing, reminder of differences, and the fact that other assume everyone else is like themselves.

Which brings us to this week.

There have been a lot of broad brushing, painful, ugly generalizations running rampant over the internet, as buttons have been pushed and surprises popped upon us. I get tired of reading them. Whenever I see those catch phrases, they make me cringe, make me somehow angry that everyone assumes all people see things the same way: "Just admit it..." "You know you do..." "We all do/feel/know it..." The article that assumes all white people get defensive when they see a black kid in a hoodie at night. The article that assumes at all autistic people want to be "cured." The article that assumes all men want to have a affair. The article that assumes everybody thinks of themselves first.

I now put out my own broad-brushing, painful, ugly assumption: people who assume everyone is a selfish, selfist jackass tend to be selfish, selfist jackasses.

And I don't like being told I am a selfish, selfist jackass by people who are selfish, selfist jackasses, and know nothing about me, or how I see the world, or what I experience through my own senses and thoughts and emotions. Studying culture and society and how they color and influence experience and understanding is interesting and fascinating- but even more so are those who stand out, who help us question what is cultural and what is not, and what it really means to live and to be.

Which brings me back to my friends, my family, and my sons, and why I find them fascinating and wonderful. Keep thinking, folks. Keep questioning. Keep wondering.

Challenge those assumptions.

Good Signs

We returned to speech therapy today after a three-week hiatus. Last day of school was a half day, then Joey had two weeks of camp that interfered, and there was no day to do a make-up. The appointments went OK. Joey had a few minutes of not so good, but they both got done what they needed to get done, so we'll call it a win and see them next week.

As I was waiting for them, a gentleman came in to make an inquiry about his own appointments. As I have a hard time blocking out voices, I soon learned that he was deaf, and was there to help with his speech so he could better communicate with hearing people. I smiled politely as he turned from the window and sat down to await resolution of an issue, and he smiled back, and we returned to ourown activities.

Then Andy came out, and his therapist told me he had done a great job. Out of habit, and as part of his praise, I signed to him, "good job." The gentleman perked right up, and caught my eye; he asked if Andy was deaf. I felt a bit awkward, as I suddenly could not put together the signs to tell him that we use signs to support speech, but I did manage something (and fortunately, the gentleman was very good at reading lips, and could fill in for my not-so-great signing). I think I signed something to the effect of not-deaf-signs-learn-talk. Yeah, not a great performance, but I find it really hard to sign and speak at the same time- and the gentleman figured it out.

Then Joey bobbed out. He realized I was signing, and the man was signing, and I said something like, "Joey, this gentleman signs!" and Joey was so excited! He turned and started a little conversation while his therapist tried to tell me what he worked on today. I know the gentleman asked Joey's name, and Joey asked his, and then there was something about orange- not sure if it was the fruit or the color. About halfway through, Joey turned and sang with great enthusiasm, "he really can't hear me!" and I managed to sign (and I am a terribly slow fingerspeller) that Joey is autistic, but I was pretty sure whatever Joey was signing to him probably seemed as random as Joey's conversation openers are to most everyone.

I will never be able to thank that gentleman enough for his patience with us. He was totally awesome. I am totally writing a note to take with us the next time we are up by the speech office to thank him, and let him know how happy he made Joey.

Joey was so excited that he actually could talk with the man, even though the gentleman could not hear him. In fact, he was so excited, he talked about it all the way home. I might even take him over to the local Deaf club, which meets once a week (they welcome hearing people who are learning to sign to join them). If Joey can handle the social part, I think he would really like it now.

Even Andy, who has been a bit put off by the signing lately, went over and seemed interested.

I want that gentleman to know what he did for us, because we certainly know what it is like to be a "teaching moment" for others, and know it can be uncomfortable. And whether he was comfortable or not, I just think he ought to know he gave somebody some joy just by being himself, and being there. People need to know those things. And maybe the next time we see him, we'll have some more conversation. After all, that's how friendships start.

Overrun

I have some new lilies for my garden. My awesome mom bought them for me- an array of rebloomers, the shorter kind so I can use them as borders. The box came, and I managed to get hers into the ground in her yard. Not all of them looked that good, but I hope they do OK. My soil is better, so I have high hopes for mine.

Then I went out into the yard this morning. The planting turned quickly into an emergency garden rescue. Virginia creeper has completely overrun everything, with its choking broadleaf cover and strangling vine. And after almost two hours of tugging, pulling, pruning, and praying, I managed to at least see some of my plants. I know I have lost some.

I only managed this in one small corner of the garden, and not the one I wanted to put the lilies.

Too exhausted to continue, I returned to the house. The boys are still sleeping. Joey's new interventions caused a late bedtime, so even he was still asleep. I looked around. stuff piled everywhere. Boxes of me trying to get control of stuff stacked everywhere. Trash from Joey eating popsicles strewn over the floor. An attempt to organize a snack control center, half done. The couch torn apart because the cats hit it again, and I had to spray it down. Bags with random items needed from the store stacked on a chair- none of the projects having yet been attempted.

I poured myself some cold tea, sat down, and cried.

It is Fourth of July today. I have my awesome fruit salad to make, boys to take to Ferry Farm for another attempt at understanding colonial America this year, and a cookout to prep. Its just us and my mom, but I wanted the garden to be useable and the fireworks to be fun. And all I can see is mess. And folks, I ain't a neatnick by any stretch of the imagination.

I can hear the boys stirring. Time for a cold cloth on my eyes for a few minutes before they wander down the stairs. And I need a change of clothes if we are heading out to Ferry Farm today.

Art Needs No Words

The Sovereign Child and The Change of Plans

Joey was awesome last week in his Production Camp with Stage Door Stars. He rocked it, they rocked it, the week was awesome and the play was fabulous. He was Baloo the Bear in the Jungle Book. You know he rocked it.

So he was totally excited this week to be in Dance Camp. After all, Joey loves to dance.

No, wait, let me type that properly: Joey LURVS to dance.

Get him up on stage and let him dance? Oh, yeah, he was all about it. The theater productions are so inclusive, and wonderful, and fun, we were very, very excited to be doing a dance routine. Joey was all grins.

Better yet, we got the awesome young man who was Joey's assigned aide last year as his dance camp aide. Huzzah! Mr. Dan rocks the house! I watched him beam all the way to the auditorium, and then dutifully left to let Joey do his Joey thing.

Needless to say, I was confounded and saddened to be met at the door at five o'clock by the camp director and a person I believe was the special ed person for the camp, telling me Joey had refused to dance. He had been upset, refused to do anything, and finally they let him do some painting with his buddy in a break room. In fact, he had painted for a good half and hour. Did I mention that Joey isn't much into art projects?

We talked about making schedules and breaks and other stuff, and decided to just try again the next day. Today. I found out from another parent who had seen the initial issue that he seemed to think he had been teased, and that's where it all started. And I noticed as we were leaving that there was a little girl in the dance camp with whom Joey does not particularly get along. Hmm.

I should be more specific about that. I noticed the little girl's mother. (And I should also note that these are very nice people, and the little girl is just fine, she and Joey just don't mix well).

He wasn't so happy about it when I dropped him off, but I sent him in reinforced with a checkers set and a extra bottle of water.

The call came just before 3. Could I come get Joey? He was not participating and was being "defiant." Cussing under my breath that people who work with special needs kids don't know the difference between a defiant child and a stressed out over-anxious child trying to communicate, I left Andy with Grandma and headed over to camp to see what the flying flip was going on.

They were awaiting me at the front desk, confused. They know Joey loves to dance. The dance teacher came over, and insisted Joey could do all these things, he was just refusing to, and there was just something about her attitude that made my ears prick and set off me "doesn't get it" radar. One thing we have learned is that people who work with special needs kids often don't really understand autism. They can work with a lot of other kinds of disabilities, and completely miss how to work with an autistic child.The very wordiness of her manner put me on guard. When I asked if we could teach him his routine for the show one-on-one, she said something about not being fair to the other students. Something was not right here. I decided it was time to ask Joey what was going on, and I wanted to do it while we were still in the building, to see if we could fix the breach.

He was in an art room, pretending to drive a car and making rings out of pipecleaners "to pay for treasure!" He seemed actually pretty content, with his buddy, making stuff. I made some inquiries. They showed me a dance move- a Travolta-esque point, where he had to cross his body with his arm. Joey started getting upset when he saw it. I tried to get him to show it to me, but the cross-the-midline move was not helping whatever was wrong. Then the young lady from the dance class (not the dance teacher, but a helper-teacher) said something about "popping" her knee- ie, to bend it out in a quick motion. The word bothered Joey, and honestly I think it confused him. But I did get him to make the move, and asked if we could now learn the next one- perhaps I could help break it down and teach him. The dance teacher was called.

She came in, and said the next thing to do was a plié. Now, if you have never had a dance class in your life like me, this is what that is. Actually, if you go to that page, note that what they wanted was technically a "demi-plié." Anyhow, after the young lady explained it to me, and the teacher fussed about how she had told Joey what it was yesterday, and how awkward it was for me to do, I can understand why Joey might not be happy about this. What happened to fun stage-dancing and learning a little routine to enjoy being on the stage? Joey squealed that he would fall over, and the teacher said they had done it with a bar yesterday, and he could do it with a chair. Only she used a lot more words than that. I couldn't get her to be quiet while I tried to delve the mystery and perhaps give this a try.

Then the next bomb dropped: Joey was going to be the star of the show, because he was the only boy, and the next dance move was going to be with a girl!

Ok, seriously? He's an eleven-year-old boy who has never had a lick of formal dance training in his life. So they sent him into a room full of girls, and then wanted him to dance with one, right away? But wait- it gets better. Because the class trooped in to do an art project for the stage set... almost a dozen young ladies, ranging from about eight to about fourteen, and all wearing adorable little dance leotards and stockings.

And they thought Joey would not feel something was amiss here?

Nobody mentioned to me that he should have special dance clothes. I am sure he was not expecting to walk into what, to him, looked like a ballerina school; and it is likely that those young ladies did find him amusing.

Naturally, Joey fled to the hall, and we had a chat. We talked about not having people laughing at you stop you from doing something you love. Then, we talked about being the only boy in the room, and that made him uncomfortable. Finally, we talked about art camp- perhaps he could do dance next year, and do art camp this year?

Because you know what? I wasn't going to force Joey to go back into a room full of giggling girls and try to learn to dance in front of them, when he was telling me he didn't like them watching him learn to dance. Especially when he was telling me so. As in, with words. He was pulling together the words to express what he had been telling us for almost two days. I am so, so proud of him for being able to do that, and work it out between us and find those words: I'm uncomfortable. They are laughing at me. I don't want girls watching me learn to dance.

The art class was working on Matisse collages- cutting out shapes and pasting them to paper. It was much more relaxed. We got Joey some orange paper (he's very into orange right now), scissors, and there was a box of markers. Cutting out the shapes directly made him anxious, so we let him draw some. I showed him how a random cut could look like something, like looking at clouds. Dan showed him that after you cut out a shape you've drawn, when you turn it over, its just a shape. We ended up with a masterwork: a bear with fruit, which Joey is calling "The Bare Necessities."

I can hardly wait for the art show on Friday.

Finding the right words

We walk together up to the school, Andy running circles (literally) around us. He is all grins and giggles, excited to be starting his drama camp, one of his favorite weeks of the year.

"Amputate! I know what amputate means!" he chimes cheerfully, my little human dictionary stimming on his newest favorite topic: word definitions. "To cut off! Rightmommy?" He tends to pick words that are uncomfortable and need extra processing.

"That's right!" I reply, half-automatic in my response, more interested in enjoying his ear-to-ear smile- the kind that have become increasingly rare, that light up his whole being and all the world all around him. "Can you think of a positive word for today?" I have been trying to encourage him to perseverate on words that won't make people around him uncomfortable, rather than trying to make him stop altogether.

"Negative words mean 'no'," he nods sagely, but the smile remains. "Is 'negative' a negative word, Mommy? Negative means 'no', rightmommy?"

"It is," I offer another affirmation. "How about 'exquisite'?" This was a favorite word a couple weeks ago, so I am hopeful he will pick it up, but he shakes his head.

"This is a blissful day, Mommy," he sighs happily, choosing another favorite positive word instead. "Bliss means, 'full of joy' rightmommy?"

"Just like you," I kiss his bright cheek, and we are in the door, Andy dancing in behind us.

Two minutes later, he is off to do his thing, with his friends. I can hear him as he heads down the hall, "I know what 'drab' means..."

That's my boy.

No Excuses

People love Joey. He's a sweet, loving, adorable child. He has a big smile and a big laugh and a way of letting you know the world is awesome. He wants to know you and accept you and love you.

Joey is also eleven years old, over five feet tall, and about 200 pounds. He's a big kid, about to hit puberty, big-time. His emotional and social development is as splintered as so many of his other skill sets- advanced, delayed, and everything in-between. The world holds a lot of frustrations for my little man, and self-regulation can be problematic.

Reading about caregivers who murder their autistic children is not only terrifying, depressing, and frustrating, it is horrifying to see how many people believe that such murders are justified. Lack of services, lack of support, the child was getting big, aggressive, unmanageable... people, these are not good reasons to murder someone.Would it be acceptable if the victim of the murder was not disabled? NO. And believe me, lots of teenagers can seen big, aggressive, and unmanageable, without being autistic. Somehow, when the victim is disabled, is autistic, all the sudden the caregiver becomes the victim, and victim becomes... what? The aggressor?

Yes, the aggressor. That is what we can conclude by the "poor caregiver!" attitude prevalent in these news items: the person murdered brought it on themselves, by being big and "unmanageable" and needing care and services. They get swept aside as a sort of sacrifice to our society's greed and cold capitalism. After all, people with disabilities are often seen as a drain on society, needing support and services and hey those things cost money and poor caregivers...

Yes, we need to fix the services, and make it easier to get services. But we shouldn't be murdering children to prove that point. No one should have to be some kind of sacrificial lamb, dismissed as a blood offering to... who? Our poor, poor taxpayers?

Joey is getting big. He's getting increasingly frustrated. Teen angst isn't going to help. He's come at me before. He's likely to come at me again. I'll probably have some bruises before we get through these next few years. Who will be to blame for those bruises?

I am the adult here. No blame, no shame. Just do what is needful, as best I can.

There is no excuse for murdering a person over "lack of services." Being a teenager is not an excuse to murder a person. Being poor is no excuse to murder a person. When we claim these are justifications for murder, we are denying the personhood of a human being. There is no excuse for that.

No matter how big, frustrated, hormone-fueled, and yes, even aggressive Joey may get, he is still my baby, my son, my love and my joy. I am his Mom, and would gladly give up my own life to give him every possible minute he can have. His life is his, not mine.

His life is worth living.

No excuse would ever change that.

Starting the Day The Non-Verbal Way

I got a big reminder today of something that had been faded into the background for a few years for us. A big reminder of something that should always be remembered.

Today, Joey started his day non-verbal. For a good twenty minutes, he was unable to speak.

It was a little startling. I noticed he was quiet, but he had woken up grumpy, so I just thought maybe he had calmed down and was thinking or something. So I asked him how he was feeling. This question has become part of routine for us in the last couple of weeks, and it refers to a color chart associated with emotion; I was expecting a color word (red, yellow, green, blue). I was particularly interested in this particular zone system because color words are something Joey tends to retain, even when he has few words to use; and this has been so since he was very small. There were a few early months of speech when he would answer questions with colors- especially if he didn't understand the question.

"How are you feeling?" I asked again, realizing I had gotten no response, even though I was searching for his raincoat. I waited; processing can be a little delayed in the morning, especially a grumpy morning. I stopped searching. I looked at him. He was looking at me, his face slack, but his eyes... I remember that look. It was the one he used to give us when he came home from school, and was silent for 20-30 minutes because he was out of words. I blinked.

"Are you in the blue zone, baby?" I prompted, trying to feed him a word he could cling to and echo for me. Instead, he turned away, picked up his backpack, started playing with the door.

This is a phenomenon we have trouble getting Joey's teachers and friends to really understand. I know Joey could speak ten minutes ago. However, he cannot do it right now. Trying to force him is just going to overwhelm him. This can be true of any number of skills, but language is particularly crucial- and notable. He understood what I was saying, but he could not answer the question. He had no language for that. I still don't know why.

With the raincoat MIA, we sat outside together, me clutching an umbrella, he with his head on my shoulder. Often in the morning, we chat together for these few minutes. I let him tell me anything he wants to say, ask me anything he wants to know. Sometimes we just script, sometimes we have real conversation, sometimes he wants me to read something, sometimes he wants to sing. It's all good. Today, we sat in silence. I didn't want to burden him with words. He nuzzled my shoulder, silent. It was the "I love you" script, just wordless.

When the bus came, I opened the umbrella, and out we walked together. Halfway, his words returned.

"The rain is getting on me!" I moved the umbrella, but the usual stream of script I would normally hear was absent. We reach the bus door, and as he climbed up the stairs, he called out, "Thank you, Mommy!"

You'll be happy to know the rest of his school day was green.

Sometimes, you just have to have some time to be silent and get that brain together. No problemo.

A Different Road

I applied for a full-time gig this week, the position my college opened up was an awesome full-time prof position, closed, and now has re-opened as a full-time teaching slog. The good news is, I love teaching, so I'm all about the slog. Shame they did it so they don't have to pay as much.

The other good news is the change is likely to keep the grubby paws of academic hotshots off my job. Most academics aren't really into teaching. They are into their research, the world of publish-or-perish, the slog of conferences and journal publishers. They don't want to have a 6-7 course load each semester. And hey, since I haven't published anything, I'd be at serious disadvantage if it was a real prof gig.

Sitting in the park, I find myself in a sea of talk about therapies, strategies, methodologies. Our little group is planning how to get through the summer with our little group of kids. They have been together all year in a social skills group, but the facilitator left at the end of the program and won't be replaced until the fall. Andy is ADHD, the other kids are autistic, all of them less affected in oral communication than Joey. We are at the park, letting them play together with one of the attendants the one mom hires through her Medicaid waiver (though for the two hours we are in the park, he's being private-paid, since we're all using him), and the guy is awesome. Meanwhile, we are looking at our options, reviewing programs, tools, ideas for getting us together through the summer.

I'm fond of the program they have been using, Social Thinking, and we're going to adapt the Movie Time curriculum for abbreviated summer. The table is scattered with other tools. They all look awesome. There's a whole kit for emotion recognition, complete with velcro charts. There are lesson plans for programs, including the one we're going to do. There is talk of websites and camps and programs designed for our kids.

I wonder what parents of kids without special needs talk about.

I've never gotten to write my article about pilgrimage, I think sadly. I have all of this to learn about now. I don't even have time to think about India or stupas or ancient inscriptions. I now have to be an expert occupational therapist, speech therapist, behavior therapist, and psychologist. Oh, and a lawyer, teacher, and intervention specialist. It's a good thing I'm trained to research and analyze; and even so, I find myself drowning in a sea of information. I have to sift through the sands to find what works, and separate it from the woo and semi-woo. Instead of traveling to conferences and writing about art, I spend all my energy traveling to therapies and listening in waiting rooms, trying to understand why certain strategies work and think about whether or not they would work for either of my boys. I try to find energy for putting the strategies and programs in place, or get my boys to the opportunities to grab their attention, focus their energies, and allow for growth. Or at least a taste of something good, a break from the constant challenge and work that encompasses their lives in meeting their challenges. Respite is good for the soul, even for the kids.

Once upon a time, my plan was to be in Varanasi this summer. Joey is eleven. Andy is nine. It would have given them a good taste of the world, a new look at their lives and their values. Such avenues to open and look down and wonder about, new ideas to think about, new visions, new smells, new sounds, new foods. I would take them over to the silk shop and have kurtas made for them. They could watch the geckos on the walls at night. We could dip our feet in the Ganges. There are plenty of children there, new friends to meet. We could have taken a ride in a motor rickshaw out to Sarnath, or just wandered along the ghats.

But that's not my life anymore.

I'll be super-happy if I get the full-time teaching gig. Even though its just teaching 101 and 102, maybe 106 (Modern/Contemporary art), I'll still be opening up eyes and minds to the new world of art- observation, analysis, and communication. There's plenty to do with that, too, keeping abreast of the latest ideas about Michelangelo or Archaic Greece. And maybe I can get it together and take the boys to the Freer/Sackler one weekend. At least give them a little taste of what Mommy dreams.

On Sixteen Years

I've been married 16 years today.



I've learned some things in 16 years.


Split the load. One cooks, the other cleans. One does the laundry, the other scrubs the bathroom. One picks up, the other dusts and vacuums. One deals with this meltdown, the other deals with the other one happening at the exact same moment.
Warm up your toes before bedtime.
Dream about winning the lottery- together.
You never really run out of things to say. You just sometimes run out of energy for using words to say them. And that can be OK, as long as you communicate.
Coming home to find one of your chores done for you is awesome. Do it for the other person once in a while, too.
The person who works all day is not the person who should be planning dinner.
Headphones are your friend.
If it bothers you that it isn't being done, do it. If it hasn't been getting done, it's not bothering the other person.
Never miss an opportunity to smooch.
Let the other person do the stuff they do best. You don't have to do everything.
Cats make good chaperones.
If you take good care of each other, you are both well cared-for.
Listen.
Cellphones with texting rock. Being able to text something to the spouse when you think of it in the middle of the day is awesome.
It's OK to let the other one move the furniture around.
The best present is time.
If it's about the in-laws, leave it to the spouse. Support the spouse in their position, no matter what it is.
Blog about their awesomeness.

Happy Anniversary, JoeyAndyDad. You rock.

Happy Birthday, Andy!!!

To my little man, the best son and best brother on the planet. We love you.

For Mikaela, Owen, and their families... from ours.

We lost two beautiful lives this week. Mikaela was lost in California, Owen in Florida, and both to the nightmare we have discovered for our own family: eloping.

And to those families, who have been slammed with the judgment of the ignorant on top of the pain of losing their beloved children, I say this: You are not alone. We are praying hard for you, and know it could easily be us next.

There are several reasons kids with autism elope. There is the fright-flight response to stress and anxiety. There is the wandering behavior of their own curiosity and lack of impulse control (for those of you who think autistic people aren't curious, come stay with us for a few days. We can debunk that one for you super-quick.) There is the active attempt for escape and retreat, the need for freedom and control of a life that is often controlled by everyone else around them. All of these can be exacerbated by other skill delays- communication, social, sensory... the list goes on.

What we have learned as parents is that you can't have eyes everywhere. Safety issues can arise when you least expect them. Constant vigilance is absolutely essential- and not enough.

Joey can disappear in seconds. A blink of an eye. A minute of distraction. A moment of panic. Or those five minutes when you think, you are so sure, that everything is locked up and all is fine and you can get that sip of water or that moment to pee or that second to actually acknowledge your other child's existence, only to find he's discovered a way out. You didn't even know he was stressed enough to want out, and he's gone.

He's faster than you think, too. I made the mistake not long ago of assuming I could walk to the end of the street and would see him turning whichever corner he encountered next. He was already out of sight even of that corner. I think he may have even ducked between houses, but he could have simply begin to run the minute my eyes had been turned from him. By the time the immediate area was checked, he was long gone. We knew his paths and his favorite destinations, and we were incredibly lucky. We found him.

49% of families with autistic loved ones go through the panic, the terror, the pain of those minutes, those hours, when the person is gone. The rate is four times that of a non-autistic child.

We have been lucky, and we have always found Joey, safe and sound. From 2009-2011, 22 families in the USA were not so fortunate. 91% of those unfortunate families lost their autistic wanderer to drowning. The other two were stuck by a vehicle.

Both are outcomes that are awfully close to home. We live a few blocks from a large river, a smaller creek, and several pools. My mom's property is edged by a smaller river. When Joey escaped from us on the beach two years ago, we found him on the beach, in the breakers. He had gotten out because each adult thought another was watching him, while my husband and I went for a short walk along the boardwalk, a rare few minutes alone together. He was missed within about five minutes. The time of the search gave Joey plenty of time of cross the sand.

Those are the minutes people dismiss. Gone in a second, and then you begin the search. That search takes time. And each minute you haven't located them is another minute they are heading in an unknown direction, and into those dangers that can be fatal. A bolt into the street. A slip into the water.

Once you get through the ignorant people screaming that you should have had your doors locked (as if you didn't) and your eyes on them (as if you could stare at anything 24/7/365), you then have the helpful folks recommending preventatives, like Project Lifesaver.

This is a program where they fit your loved one with a GPS, and you call the police when the loved one elopes, and they can then find them quickly. Sound good? It is. Except that the program is completely volunteer, and there is not enough equipment to go around, and not always enough manpower at the local level to run it. The police officer who came to our house in August when Joey disappeared pressed us to get into the program, and friends had been praising it as saving their own wanderers for some time. We called. We were promised we'd have it within a week.

We're still waiting.

Families of Mikaela and Owen, and to those other 22 families, and the ones before and since, who have lost their children, we stand with you. We grieve for your loss and pain. We know it could so easily be us.