Saturday, May 24, 2008

Alex Barton

Holy crap. What does the Florida state attorney's office consider emotional child abuse???

Not only was Alex Barton emotionally abused, but so was his entire class.

There's alot of buzz about how this child may have autism, and that autism caused behavioral issues, and this incident stems from those issue and behaviors.

I don't give a flying flip if he was from Mars and spit on the grave of the teacher's grandmother. You don't use a classroom of children to publicly humiliate a child. If having every peer a child has stand in front of him and tell him that he is not liked for various specific reasons and then vote him out of the class isn't emotional child abuse, folks, what the hell is??? It isn't like he wasn't just in the principal's office, for pete's sake! Don't you think he was already appropriately reprimanded? Do you have rub his nose into the dirt, too?

We always know when there has been a problematic incident at school; Joey comes home very upset, often repeating phrases such as "You're going to Ms. T!" or "Do you need to see Ms. T?" or "Ms. T... room 44." Ms. T is our principal (whom he actually calls Ms. T- I'm not hiding her name for FERPA. That is Joey's name for her.) We had a pretty long stretch after Christmas when it was so bad, and he was so perseverative on this, that I called and asked if he had been sent to Ms. T for something. He hadn't.

But other students in the class had. Some of them go quite regularly, even when in self-contained situations. If the strategies for dealing with behavior run out, that is where a student must go, so everyone is safe and the situation can be addressed. However, it doesn't just impact the student in distress; it also distresses the classmates- including Joey.

All of those students were part of beating up on a classmate. How many of them now live in fear that they may be next?

So I don't even see this as one count of child abuse. This was an assault on an entire classroom of children, with Alex Barton as the focus. If our current information is correct, and the teacher confirmed that this incident occurred, I have no idea why she remains employed. Even if the police do not know abuse when they see it, surely the school administration can clearly see a case of intentional causing of emotional distress in a child? Surely immediate suspension for a investigation is warranted? And if our information is, in fact, correct, a speedy dismissal?

Why aren't all the parents- not just Alex Barton's- up at arms about this, calling for this teacher's immediate dismissal? If this was either of my kids, they would not be returned to that class for any reason. And if immediate action wasn't taken, I'd be thinking "lawsuit" too.

Since Google seems to have picked up on this post (thus channeling a good bit of new traffic to this post), allow me to direct folks to some other excellent posts on the subject. All of these blogs are worth reading. Sorry if the list is not inclusive of all the great blogs and posts which have addressed this, but you should make the rounds of most of them after checking these out and the posts and blogs the refer to:
Whitterer on Autism
Club 166
Mom- Not Otherwise Specified
Maternal Instincts
Big White Hat
A Room of Mama's Own

Once upon a time, five minutes ago

He sits in the middle of the living room in a sea of paper, wielding the blue marker. He is writing large letters on the papers, blocky poster-style ones.

"I make a R for Ralphie," he announces. "I make A for Arnold." He turns to me. "What is your name?"

He isn't asking me for my name. He is asking which Magic School Bus character I want to pretend to be.

"I'm Liz," I reply semi-automatically.

"I'm Ms. Frizzle," he nods and draws another letter.

"I'm Dorothy Ann!" his brother lisps happily and dances around, making his dinosaurs fight.

He grabs his blue sand bucket and puts it on his head, with the handle under his chin. For some reason, this is part and parcel of being Ms. Frizzle. Some days he's the bus. Those are fun.

He makes a series of short and long lines- a road. He spends a moment driving on it, then turns back to me.

"I'm Arnold!" he announces. "I should have stayed home today!" This is Arnold's catchline.

"You are a perfect Arnold," I assure him.

"You're Arnold, too," he grins. "Are you coming to my house? Can we stick it?" He holds up a big A drawn on the paper. I pull off a little bit of tape, and he sticks it to his chest. "I am Arnold."

He carefully draws another A, considers it, removes the old one, and makes another demand for tape.

"This is the better A. Is this the better A?"

"It's lovely, dear. You are a very good writer." He beams. He sticks the other A to my chest.

"You are Arnold, too."

"Yes, my love."

"Can I be Phoebe?"

"Of course you can." He takes off the A, and gets to work to make a P. I prepare the tape. He proudly presents his P... and I stick it on him.

"At my old school, we came to my house." Phoebe's catchline: 'At my old school...'

"I'm Ms. Frizzle," he sighs and makes an F. "To the bus! Single file, please!"

He changes personalities every few moments. He labels himself with the appropriate letter. He recites the catchlines, with slight variations (such as the "we came to my house"). The afternoon wears on, shifting from character to character to character. His brother interjects now again with "I'm Dorothy Ann!" His dinosaurs fight on.

Ah, nice, quiet afternoons, full of chatter. Sometimes dreams do come true.

Friday, May 23, 2008

Busy busy busy

We've had quite a month. ALlan was away for two weeks, one being the first week of this month. We went to see him at the beach, and went to the zoo, and saw big boats, and fed fish. The boys went to the circus. They went to Williamsburg. They went to the aquarium. They went to the circus again. They went to the Rainforest Cafe yesterday. Andy had a birthday. They are right now camped out in their tent in the livingroom. Yes, it's been quite a month.

Additionally, my mom's cousin is in the hospital; she was on a respirator for a while, but is now improving. at one point, she had to be revived. This week, mom's Uncle Bob (the cousin's father, no less) suddenly died. We were at the funeral yesterday. (Hence all the drives to Baltimore).

Spring semester closed, finals had to be graded, and grades calculated and turned in. My summer semester started. We had a pre-IEP meeting. We had the IEP meeting.

The boys had their checkups. I went to the doctor with a funny spot on my leg that wouldn't go away. That turned out to be nothing, but the nurse detected PVCs when she took my pulse. One EKG later and I was having blood drawn. All normal there; so off to the cardiologist. In the wake of the costochondritis episode, no less. More tests on Wednesday.

Plus our regularly scheduled activities and fun.

Why am I tired? I don't understand.

Fine lines

In our runs and reruns up and down the road between here and Baltimore (yes, I know Stimey, all those miles and I haven't stopped in to meet you. Bad Joeymom. Bad. No doughnut.) my mom and I have been getting in some good chat-time. We talk about Joey a lot. We talk about autism. We have slightly different views of autism, but I think both perspectives are good for helping Joey.

One thing we've been talking about is the fine distinctions in our experience of autism. Where is that line between social construct and "real" disability? At one point does one take stock of limitations and deal with them?

I know that there are people- including several of you all- who believe that all disability is social construct. I find that view interesting, and sometimes helpful. However, it isn't jiving with my experience. If Joey was perfectly happy and fulfilled not speaking, not being able to interact with his peers, not being able to self-regulate, well, maybe I would think differently. But I see the frustration. I see the struggle. I see the work he puts in, the enthusiasm, the desire; and the (very upsetting to him) fail. And the increasingly rarer Epic Fail.

For us, Joey is Joey. He's my son. I want to help him learn to be happy, help him succeed, help him be the person he wants to be. He's only six years old. Helping him become that person is part of my job as a Mom. Choosing who that person will be is Joey's job. If he wants to be a marine biologist and swim with dolphins, then by God, I am going to do everything I can to help him succeed in becoming a marine biologist and swim with dolphins. What will he need to succeed? How can I help?

I have navigated the world of academia. We can argue about how social skills should or shouldn't be necessary, but they are. Speaking shouldn't be a requirement, but effective communication is a must. Melting down because he can't have a blue folder is not going to be acceptable behavior when he reaches college or grad school. He is going to have to communicate to his professors that he understands what they are trying to teach him.

Enter occupational therapy and speech therapy. OT helps him self-regulate, helps him learn to interact with others, learn how to control his own body and perform important tasks for daily living, such as following instructions and coping with overload. Speech therapy should never be just about speaking- it is about communicating. For us, it is more about speaking because Joey now speaks, but I'm firmly in the camp of it being about communication first and foremost. A speech therapist who can't use AT isn't very helpful for an awful lot of kids who need it to communicate, or even springboard into speech.

When we start talking about the need to teach Joey to speak and interact, remember most kids learn these things by natural imitation and assimilation. Most kids do not have lessons in how to ask another child to play on the playground. They figure it out by walking up to other kids and testing some strategies they saw other kids or adults use. They figure out which ones work best for them, and go for it. Joey has lessons, practicing carefully with other children in staged and controlled situations. He never figured out how to do it on his own (though he tried hard- he just loves other kids!)

As Joey's communication skills and social skills increase, his ability to imitate and assimilate also increases- he can figure out more things on his own, because he gathers tools for figuring things out on his own. Just as he learned to speak initially by imitating Oobi- then shifting the words or inserting words to fit what he saw around him (making the scripting nearly transparent to those not familiar with Joey and Oobi)- Joey incorporates the rehearsed interactions and alters them to fit the situation at hand. Slowly, the rehearsing will become transparent, as it does for us all.

So where is the fine line? Is Joey disabled, or is here a social construct that results in his own frustration? Is apraxia a real disability, or just a label we slap on him to keep him in special ed? If it is just a social construct, should I be able to break down that construct and have him be happy- or is it instead a real disability, that needs to be addressed (usually by therapy) and supported (via accommodations and educational strategies)? If I tore down the construct, would Joey be happy? Or would he remain frustrated with his struggle to communicate?

Perhaps I should take up the issue of how many different ways we can view a single person, how many facets we can juggle, how we can use a variety of lenses and perspectives, and still be considering the same person. Joey is Joey. When I walk into an IEP meeting, what does that mean? When he crawls into my bed at night? When I take him to the zoo? When I take him to the store? When I visit him in school? When he sits down to eat his dinner? Yes, he remains the same Joey, but I have to consider different aspects, different needs, different roles.

After all, I'm a mom, a wife, a daughter, a blonde, a niece, a sister, a Virginian, a professor, a student, a woman, a rater, a score leader, a Caucasian, a chairperson, a PhD, a researcher, a genealogist, a citizen, an American, a patient, a customer, a client... what is real? what is a construct?

Wednesday, May 21, 2008

Wordless Wednesday: Happy Birthday Andy

Tuesday, May 20, 2008

In case you were interested...

According to Joey, who can claim to be an expert as he has now seen her twice in the last week, the Tooth Fairy is actually a large blue bunny rabbit.

Just in case you wanted to know.

Monday, May 19, 2008

On the Edge

If you are stressed out, it's your own damn fault.

That's the message running around these days. Modern lifestyle is too hectic- if you'd just slow down and simplify, you wouldn't be stressed. If you'd just take a minute for yourself, you wouldn't be stressed. If you'd just take a nap, you wouldn't be so stressed. If you'd just accept life as it is, you wouldn't be stressed. What's your problem? Why are you so stupid? Get out of the rat race and you wouldn't be stressed!

Yes, and when these things drop from mouths and screens around me, I start wondering about how that would sound if I turned it around on someone else. Replaced a few choice words. But offending others isn't going to help my stress level. It isn't going to get me any more sleep. It's not going to do a thingy-dingy for my blood pressure, or my PVCs, or my asthma. Nor will it help Joey or Andy.

Yes, modern life asks me to do things differently than they did once. Not too long ago, a child with communication issues like my Joey would have been probably labeled mentally retarded, and ended up in a group home (at best), working menial jobs (at best), and probably not spoken about. Children not much more severe than my Joey would have been locked up in institutions and forgotten. Or perhaps a kid with Joey's communication issues could have been found a place on the farm, if he managed any form of communication enough to understand directions. If not- well, those farm kids probably ended up locked up, too- in institutions, in homes- like Boo Radley. Having enough receptive language to understand "muck out the stables," he might have gotten by and survived, scorned as the local idiot or weirdo. We have people walking around our town suffering this fate right this minute. Today. Is this the life I want for Joey?

I see plenty of parents who do little to support their disabled kids. They refuse special education services. They send them to school, and trust the school to provide all the necessary therapies. They assume the state will take care of their child, help their child reach their potential. That's not even what schools do for non-disabled kids! I look at these kids, and glimpse echoes of what might Joey be like if I did the same. If I just went about my "normal" life, instead of what I do. I haven't seen any current outcome that is positive. None.

So I drive him to speech therapy. I drive him to occupational therapies. I work four jobs, so I can pay for them, and for the little ABA he gets. I take him with me all over town. I take him to the store. I take him to the farm. I take him to Williamsburg. I take him to the zoo. I take him to the beach.

It was almost two years ago when we last took Joey to the Aquarium in Baltimore. We went again yesterday. What a difference a couple of years can make. You might remember the disaster we had last time. Basically, meltdowns at every scale level throughout the day, but mostly in the 8-10 range. Dark, crowded rooms are not Joey's thing.

This time, he had a blast. He loved the fish. He's very into fish right now. It can sometimes be hard to tell what Joey is really interested in, so I'm tickled to discover something he really likes, and isn't just saying he likes because other kids say they like it. He's very into the beach and sealife. Maybe he'll be a marine biologist! He looked into the tanks, and saw the fish, and pointed at them, and wanted Andy to see them, too. He laughed. He looked for Nemo and for Dory. We saw Dory-fish (blue tang). We saw sharks. We saw anemones.

Then we went to the dolphin show. It was far better than the show we saw before- and we sat in the splash zone. We got soaked. Andy freaked. Joey was ecstatic. He proudly proclaimed himself wet to anyone who would listen. He laughed and squealed with glee at the tricks, and wanted to get in the water and swim with the dolphins. He's been pretending to be a dolphin all afternoon today. How's that for success?

Yes, he's growing up. That makes a difference. But he's also doing a lot of hard work, because he wants to know about the world, he wants to communicate with us, he wants to be in on the action of life. Did he blend in, look like other kids, act like other kids? No. No need for specifics. He's Joey, and he was Joey at the aquarium. But he was happy.

That's worth a lot of stress on my part. Modern life is still life, and I still think it is important for him to enjoy it.

Sunday, May 18, 2008