4/30/2012

April Ends...We Now Take You to Your Regularly Scheduled Program

April 30. The last day of Autism Awareness Month. The last hurrah, although let's be honest, the wider world didn't really notice all that much and probably didn't learn all that much, either.

The truth is that autism awareness happens at the individual level every time we, as parents, take our autistic children out and have them interact with the world. For autistic people, it happens every time they are out in public and self-disclose, but also when they don't, when the people they interact with don't know they have autism, or as they get to be known by others, when that label fades into the background, and they are just seen as uniquely themselves, perfect as they are.

My son has autism. He has an intellectual disability that creates greater obstacles, though, and these two things are separate--he had a stroke that damaged his left thalamus. He also has a blood clotting disorder. All three of these things are huge parts of him, although you wouldn't necessarily know it by looking at him.


If you look at him, if you interact with him, if you converse with him, you see a sweet young man with an infectious smile, a sense of humor, a robust laugh, and an intense desire to be of help. You see a young man who loves video games, Yu-gi-oh, Pokemon, and anime and being right. You see a young man who may not be able to spell or write with any kind of ease, but who is smart enough to figure out how to record his voice on his phone and text me the grocery list by embedding those audio files in the text. Pretty damn awesome, if you ask me. You see a young man who loves animals and willingly cares not just for the six cats here, but for my mother's cats and birds. You see a young man who's never too busy to sit down and hold and love on an animal or spend an hour talking to the parrots. You see a young man who loves to read and devours books, but often needs help straightening out his perception of the book because he didn't know enough of the words so that it's confused him and who misses all inferences. You see a young man who hands those books over to his mother to read after he has finished because he's eager to discuss the books for hours. You see a young man who's learned to cook, and who delights in concocting new dishes and who takes a fierce pride in successfully navigating a store on his own while his mama waits in the car, sometimes on the phone with him and the rest of the time with her fingers crossed. You see a young man who will be 23 this year who rarely focuses on what he can't do and who is continuing to grow and learn and develop skills.



My Lily has autism, too. Tomorrow we'll go to the neuropsychologist for the results and resulting decisions as to labels. She's struggled this year in school, and we decided it was time for her to be re-evaluatued to see if we were doing everything we could for her. She has a 504 plan now (like an IEP, but for when academics aren't really a problem and other services aren't needed), and that has taken some of the struggle out of the year, but not enough.

If you see her, you see bubbly, you see vibrancy, you see a sweet girl whose body is growing faster than her mind, but whose mind is incredible, capable of insights and the retaining of information that will blow you away, but who also has serious information and skill gaps that always leave you surprised. You see a girl who is super-easily distracted and who often gets lost in her own world, who loves SpongeBob beyond all else, but also collects everything else. You see a girl who is stubborn, persistent and fierce in her beliefs. She is an amazing young lady.


And then there's Rosie, sweet Rosie whose "Mama!" touches my heart every time I hear it. My Rosie has autism, much like her brother's version. Her kisses are still super rare, so whenever I get one, I know I've been blessed. Her hugs are given freely and often. She's the quietest of the bunch, but she can shreek louder than anyone I've ever known.
She's smart, friendly, and always complimentary to others. She's delighted to have made a second friend this year, and spent last week counting down the days till she went to her friend's birthday party. Making friends is hard for her because she has a hard time in continuing a conversation. She has a fabulous skill, when she either doesn't understand or doesn't want to answer, of pretending the other person never said anything at all. There's no pause, no gap, just a sweet little smile on her face as she goes on about what she wants to talk about. Don't underestimate her. She has depths to her, unfathomable depths containing a multitude of surprises. She will own the world one day.

4/28/2012

Why, No, They Aren't At All Comfortable


But were they totally worth it? Hell yeah.
From now on I want all my shoes to have 
decorations at the top.

4/27/2012

NARPAA: Official Statement On Judge Rotenberg Center

Steven Muller, President of The National Association of Residential Providers for Adults with Autism has released the following statement regarding the Judge Rotenberg Center:
The video of staff at the Judge Rotenberg Center applying electrical shock as punishment for teenagers with developmental disabilities is deeply disturbing and an embarrassment to those professionals that devote their career to helping people.

Yes, there are some individuals that display extremely aggressive behaviors toward self or others. Yes, some families are grateful that this center has accepted responsibility for treating their loved one.

But in what world are these “treatments” acceptable?

What outcry would we see if such “treatment” was prescribed for our incarcerated criminals? Would we accept this type of “training” at our local animal rescue shelter? The method of “treatment” displayed in the video is violent and inhumane – for animals, criminals and those who struggle with developmental disabilities.

Close examination of the video reveals that these individuals were either completely subdued or had withdrawn from any form of aggressive behavior. These are not individuals “in the act” of a violent incident. Tied to a cot in four point restraint or sitting motionless at a computer does not require submission to prevent immediate danger.

These actions are violent assaults, whether performed by an angry mob or a team of calm professionals. To tie a teenager face down on a cot and then shock him into submission is not much different than strapping him to a post and using a whip.

The fact that the “professionals” in the video appear calm and controlled does not change the outcome; no different than if they applied retribution with a baseball bat.

Fortunately most professionals find outrage in these video examples. Using positive supports many organizations have found success treating individuals with severe challenges without resorting to cruel and unusual punishment.

If the violent electric shocks produce no long term effects and are as effective as reported on the Judge Rotenberg Center web site then would these employees be willing to submit to such “treatment” to improve their diet, decrease smoking, or correct their golf swing?

Violence begets violence. These wise words have been offered by many including the great Martin Luther King. “The ultimate weakness of violence is that it is a descending spiral, begetting the very thing it seeks to destroy. Instead of diminishing evil, it multiplies it.”

I join those who challenge the Judge Rotenberg Center to immediately discontinue these acts of violence and explore humane ways to support and inspire personal growth.

Steven Muller
President
The National Association of Residential Providers for Adults with Autism
www.NARPAA.org

4/26/2012

Cats...





Good thing cats don't read blogs,
or Mabel would be mad at me 
because she's left out here.
:)

4/25/2012

Judge Rotenberg Trial Ends In Settlement: Nothing Changes For The JRC, Though

Although the jury had the case, the Judge Rotenberg Center settled with Andre McCollins' mother yesterday. Fox 25 News in Boston has covered this case diligently, and its article about the settlement writes, "But the attorney representing the Judge Rotenberg Center is not owning up to any mistakes."

The Judge Rotenberg Center has a long history of defending its actions, wrapping their use of skin shocks and restraints in sunny graphics and opulent reward centers that make Liberace's home look like understated elegance.

But what now? Andre McCollins now has an undisclosed amount of money to help with his care, but what about the other residents of the JRC who still wear the backpacks that hold the apparatus to deliver the skin shocks whenever an employee decides it's warranted.


Because, after all, the JRC provides "unusually large and rapid changes in students' skills and behaviors.unusually large and rapid changes in students' skills and behaviors." Of course, they do. Make sure to check out this particular page because it's claiming that the JRC has provided "39-Years Documented Effective Treatment" and then links to testimonials. Yes, that's right: the gold standard in any scientifically-based endeavor and what all ABA providers believe in: testimonials. Oh wait, behavioral analysts believe in documenting everything and charting the behaviors to see if there's a positive change and then fading out the prompts and the rewards so that the client is doing the task independently? They don't believe in testimonials as proof of effectiveness? And they certainly don't think that a client wearing the skin shock for twenty plus years to be proof of anything but ineffectiveness as a treatment for changing behavior?


If you think shutting this place down will be easy--remember that it's been operating for over 39 years, and that as of 2007, it brought in $56 million dollars and employed 900 people. That would be a big hit in terms of employment and the benefits to the local economy derives from the JRC.


The Mother Jones article noted, and how does anyone read this and not be horrified: "The Rotenberg Center is the only facility in the country that disciplines students by shocking them, a form of punishment not inflicted on serial killers or child molesters or any of the 2.2 million inmates now incarcerated in U.S. jails and prisons." Why is the Massachusetts legislature protecting the JRC? Why hasn't the DOJ stepped in and shut them down? One answer is the parents. Yes, the parents: "Massachusetts officials have twice tried to shut the Rotenberg Center down—once in the 1980s and again in the 1990s. Both times parents rallied to its defense, and both times it prevailed in court. (See "Why Can't Massachusetts Shut Matthew Israel Down?" page 44.)"


What matters most to these parents isn't that their children are being protected, but that they are controllable--parents are sent home with the shocking device so that they can administer the shocks when their children come home for a visit.


Why is it that things that every one would scream is abuse if it was done to a normally developing child is excused and explained away when it's done to the disabled, especially the disabled whose care is difficult, the disabled who are aggressive and self-injurious?


Mother Jones looks into the history of the center and its founder Matthew Israel: "In 1971, he founded the Behavior Research Institute in Rhode Island, a facility that would later move to Massachusetts and become known as the Judge Rotenberg Center. Israel took in children nobody else wanted—severely autistic and mentally retarded kids who did dangerous things to themselves and others. To change their behavior, he developed a large repertoire of punishments: spraying kids in the face with water, shoving ammonia under their noses, pinching the soles of their feet, smacking them with a spatula, forcing them to wear a 'white-noise helmet' that assaulted them with static."


Nice, right? California investigated Israel and his "school" after a patient died. Other patient deaths followed, the Mother Jones article details, and then shares how Israel decided to kick it up a notch, literally: "He decided to increase the pain once again. Today, there are two shock devices in use at the Rotenberg Center: the GED and the GED-4. The devices look similar and both administer a two-second shock, but the GED-4 is nearly three times more powerful—and the pain it inflicts is that much more severe." Yes, that's right, the original device he used he decided wasn't powerful enough, but the manufacturer declined to make it stronger, so Israel came up with the GED, but then decided that wasn't enough, so he made an even stronger one. How this man stayed out of jail, how staff psychologists didn't resign in ethical and moral indignation is baffling, until you remember that our country has a long history of abusing the disabled. Think Cuckoo's Nest for a vivid visual of what institutions thought of problem patients (yes, it was fiction, but it was a catalyst for change, as well, because it was based on Kesey's experiences working in a mental institution).


The author of the article at Mother Jones received a tour of the JRC, was shown videos of before and after, and then is surprised to meet two of the individual in the videos--one from 1977 and one from 1981:


"This is Caroline," one of my escorts says an hour or two later as we walk down a corridor. Without an introduction, I would not have known. Caroline, 39, slumps forward in a wheelchair, her fists balled up, head covered by a red helmet. "Blow me a kiss, Caroline," Israel says. She doesn't respond.
A few minutes later, I meet 36-year-old Janine, who appears in much better shape. She's not wearing a helmet and has a full head of black hair. She's also got a backpack on her shoulders and canvas straps hanging from her legs, the telltale sign that electrodes are attached to both calves. For 16 years—nearly half her life—Janine has been hooked up to Israel's shock device. A couple years ago, when the shocks began to lose their effect, the staff switched the devices inside her backpack to the much more painful GED-4.
 Imagine the horror, the hell, of being trapped in that place, shocked year after year. 
Just because the JRC managed to settle this latest case without a jury finding doesn't mean the public should turn its attention away from the center. Nothing's really changed there. Restraints and shocks are routinely used.
This is no time for moral indignation to quiet down.

A Fun Time


Saturday was our first Swing 4 Autism golf tournament.
Bright and early, we were out there to volunteer.
And even happy to do it!


Man, this golf cart sure is a sweet ride!


And lunch was divine!
Barbecue sandwiches!

What a blast!
Even I had a blast, 
although following the shade was important!


But Saturday wasn't just golf tournament fun!
Lily went to a birthday party and came home happy!


And then loved on Daniel.
The boy missed the fun at home, 
as he was on a camping trip with his grandparents, 
where he got in some kayaking.

Of course, there's nothing like getting together for 
a picture with my kids and Aphrodite!




4/24/2012

Issues That Span Generations

High strung.

Nervous.

Candy-ass (not the nicest way, but one I heard enough to ingrain it and one she will never ever hear).

Anxious.

I tried to hide my vomiting issues as a teenager. Maybe I did well at it so that my parents didn't know, but maybe I didn't. High school was a roller coaster for me, and as soon as I was driving myself to school, I'd stop along side the road and vomit. I repeated this when I taught in North Carolina, in my twenties by then and no better at handling the anxiety.

At one point, at many points, I simply caved, and quit working and stayed home with Bobby. Homeschooling him was for both our sakes--at that point I was in the school with him, and it wasn't good for either of us, and after his stroke, something in me cracked. Faced with a child with a blood clotting disorder who could stroke again, I brought him home. If there were no guarantees of a long life, then we were both by gods going to have a good one together at home. Every doctor's appointment, every evaluation, every dentist appointment left me with crippling anxiety and GI issues that had me writhing in agony. Didn't matter who the appointments were for, either.

They still do. Here, now, in my 40s, still fighting the monsters and making sure I give them the finger as I rush to the bathroom and then out the door to face work, to face appointments, or to the computer to face confrontations I know are coming.

Lily's anxiety issues have been increasing over the last two years. Yesterday, she had a bout of nerves and threw up at school and was sent home where she spent a delightful, non-stressed day watching Phineas and Ferb. Today and tomorrow are the STAAR test. Guess who was up early battling her demons? Lily. I understand, oh so totally and completely what she's feeling, why's she's feeling it, and why that means she absolutely had to go today despite being extremely nauseated and vomiting. She's not sick--she's wracked with nerves over today. And she has to go. I know she does, because I know that when we cave to our anxiety, we make the next time harder to do.

We have to fight it each and every day, sometimes all frakking day long. And we learn that they're just nerves and extra bathroom visits, that physical misery because of a long-set pattern of activation of the sympathetic nervous system does not have the ultimate say in what we can and will accomplish.

I do not want my ten year old daughter to reach my age and still be battling the crippling, agonizing demon of anxiety, even though cognitively the battle was won long ago; the body is still held captive to it. I do not want that for her, and so because I love her and because I understand precisely what's going on in her mind and in her gut, I sent her out the door, letting her know I understood and that was why she was going. And why I immediately emailed her teacher and prepared her. And why I'll be by the phone all morning, all day, ready to run to my daughter, to her aid, to reinforce to her that these demons are won simply by choosing to fight them.

And why, when I am in the midst of a battle, I think of this young lady's delightful performance:




I can face the world with that kind of energy and attitude, and when my Lil is a little older, I'll show it to her, and it can be her internal anthem, too.

Poor Dead Caterpillar


4/23/2012

The Sun Will Come Out...


Isn't It Wonderful? Isn't It Grand?

We stretch ourselves out a little--reach our grasp, offer thoughts without judgment and yet, all some will see are thorns of their own making.
We end up feeling forced to follow the paths others set up--deviating from the talking points leads to no good.

Even some of the shiniest things, the pretty things, that draw our attention and admiration, because they wax so poetical, can have hidden costs: prickly burrs when the flowering is done that stick to you by the hundreds and ruin everything.

Not everything that you taste, that you experience will have that sweet shock of sugar--sometimes, all that's really there is bitterness.

Sometimes we will destroy the very things that support us and yet defend that same territory at all cost.

Beware the hidden things that burrow in and leave destruction in their wake.

No wonder we have our defenses up and hide our inner selves.

The costs are sometimes too great and leave us worn and tattered.

Promises of rain--of fresh starts--of clearing the air--often remain empty promises. 

So we look for peace in the garden, a state of calm and remove.

Sometimes, blooming and sharing wears us out, spends us entirely.

Trying to find the beauty in a diversity of viewpoints shouldn't be so hard. 

And each time we do, we leave behind seeds that others will sow.

Perhaps it's a good thing when a path is suddenly closed to us, forcing us to go another route.

Just because others eat at us and pick at us doesn't mean we aren't of value and worth.

Even when it means we lose parts of ourselves.

Not everything requires a hissy fit.

Sometimes, it requires shaking ourselves off and moving on.