Lessons applied

So, one of our cats (Mitzi), had some sort of major health crisis a little while ago. Something made her kidneys and liver shut down, which led to a horrendous vet bill and a prescription of two pills a day. When she was on death's door getting her to take these pills was a fairly easy task. Happily she started recovering and the pills got to be a little more difficult. In the last few days she has come back to herself - the cat who can't be held, much less controlled enough to jam a pill down her throat. With two adults holding her there were many scratches inflicted. At one point she flipped out and bit her tongue. There was blood everywhere. The absurdity of the situation hit me (halfway killing an animal in the process of giving her life saving medicine) and I realized that this seemed a lot like life with msk.

The idea of directing msk has always been a challenge. For a while scooping him up or holding him was an option, but it always seemed to make him more pissed off. Slowly we learned that you don't stop msk, you divert him. You follow his lead and if at all possible; you don't yell or grab things away from him. There are some situations, walking into traffic for example, that take decisive action. Generally though, the price of getting him to abruptly follow your will is too high. We've learned that you need to finesse a change in course.

Applying that lesson, I can now single-handedly get Mitzi to take her pills. Very calmly I hold her and stick a pill into the side of her mouth back to the molars. She gets annoyed and spits it out. I repeat this as many times as required. No pinching her mouth open. No forcing her to swallow the pill. I just get it into the back of her mouth and eventually she swallows and we're done.

Maybe I always knew that fighting wasn't the right solution, but I've got to thank msk for a multi-year program that has taught me patience and redirection.

The other way msk has influenced our cat's life is more humorous. When she repeatedly launches herself at the backdoor, batting at the doorknob and willing you to let her out, our response is: "What do you want Mitzi? Use your words. What do you want?" We've been trained to encourage verbal communication when obvious non-verbal communication is in use. Sometimes I think the behavioral training in our house has been for everybody besides msk.

Parental Involvement

There's always lots of talk about how "bad parents" make it impossible to educate kids. That's the kind of post on Inside Ed that's guaranteed to get a swift retort from me, usually something along the lines of - there's plenty of blame to go around; public schools, by their definition, must take all kids; how can you so quickly condemn people you don't even know? etc. I don't think there's uniform agreement on what a "bad parent" is, so let's leave that for another post on another day. What I'd like to talk about is parents who don't ever come to school. Borderline parents - they'd like to come but somehow there are always schedule conflicts with the PTA meeting or the back to school night. These are parents that I think would come to school if they just felt a little more welcome or needed. After attending close to 10 schools between three kids there are some things that I've noticed have made a difference to my husband and I.

Value a parent's input on controversial topics
I realize asking for parent's input about something that is going to make people mad delays the decision and robs some of the absolute power from school administrators. In my opinion, dropped out of the sky decisions that have big impacts on my kids rob me of any sense of control. If I do come to future meetings I'm going to be skeptical that communication is honest. I'm not saying parents should have control, but honest, open communication when an issue comes up works wonders. This communication the hallmark of "good" and "bad" principals IMHO and I'm betting it's a reflection of the kind of communication going on between teachers and the administration as well.

Consider logistics when scheduling meetings
Having gone to local schools and far distant schools I've got to say that this might be petty, but it's usually the excuse I use when I don't want to attend a meeting. Things to consider include. If you've got both local and distant parents don't only consider one group. Realize that single parents are the norm as are families with more than one kids and often that kid will be younger. That means even if you're running a middle school or a high school consider elementary school kids. Realize that people work in jobs that will not give leave for school actives. There are people who take buses and do not have cars. If rules are made that don't take family's needs into account you might have good teacher turn-out or good discussions, but don't be surprised if your percentage turn-out is low and this lack of consideration will make it much harder to turn around attitudes if you schedule a better meeting in the future.

Find a way to let everybody make meaningful contributions
I understand that parents are being asked into schools to support these schools. Sometimes this is about about improving facilities. I'm happy that I'm in a position that I can pitch in monetarily most of the time. Not all parents can. Even when I can pitch in I'd like to know what the funds are being used for. There are parents who can help with sweat equity if you let them. Even if I can give money I feel more connected to the freshly painted walls if I held a paint brush. Even if you're buying computers or projectors parents can be involved in installation

Make meetings welcoming but efficient
I have a lot of things to do and typically I'm making choices. There are only so many long winded, disorganized meetings I can go to in a day and honestly, I usually do those while getting paid. Good meetings start on time, have agendas that are distributed ahead of time and are followed, accomplish things that require face-to-face communication (i.e couldn't have been done on paper), develop a sense of team as opposed to assigning blame. If there's going to be one-on-one discussions work on schedules ahead of time as opposed to making me wait in lines.

Consider divide and conquer
It's hard to meet all these objectives at the same time. Consider having several meetings to accommodate different schedules. This is more work for the school, but it shows that parents are valued.

How to make a blogger go crazy

I know that looking at Google analytics will make me crazy, and yet I am drawn to it. I'm curious about where viewers come from and how long they stay, but the hit count is what draws me in. I watch as the line climbs up and drops down. I say it doesn't matter, but I'm drawn to look and figure out why the line moves.

I remember taking Psych 101 almost thirty years ago. We learned about positive and negative reinforcement and how you could achieve a desired outcome. What really sticks with me at times like this was how you could drive lab animals crazy was to give them random rewards and punishments. They would try to figure out what they were doing right or wrong, but since the feedback was random their conclusions would always be wrong.

I am currently going mad. For some reason, about two months ago my hit count went up by a factor of three compared to my highest days. And it stayed that high. Why? Was it where I had been posting comments? I have no idea and decided it was a fluke. But the count stayed high day after day. Even when I went weeks between posts. I decided if that many people were looking I needed to do a better job of posting regularly. No sooner do I make that announcement (and start posting fairly regularly) then my hit count drops just a precipitously.

Whatever. I post and wonder if I'm talking to myself. I like to write and this is a place I can do that. So I'll continue trying to hit 300 posts this year. As long as I don't lose my mind in the process.

Same topic, different medium

I'm going to try something a different here, and I've got to admit I'm a little nervous. Sometimes I feel poetry does a better job catching the essence of what I want to convey. Yesterday's post was a bit of a lecture. Today's post is a poem that I wrote a few months ago. It addresses the same topic - abstract value, soul. Bonus points if you can identify where the picture (taken in August 2009) is from.




Urban Stream Sonnet II

Compelled to play, boy’s splash reviving, grab
Stream, foul green water turbid, half extinct
Pushed flow paints rocks, shows luster ‘neath dust’s drab
Not pure, but home - tenacious lives are linked

Disdainful tourists walk the path and sneer
Cup floating down, bags hang, high water’s line
Park shelters now the guileless child sincere
Accepting wanderers that don’t malign

We’re all alone, his proof makes others wince
Sparse struggling words and mingling left behind
As current tossed, was broken, now smooth rinsed
Soliloquies, more echoes, peace entwined

Though trash and isolation take their tolls
Both boy and stream survive with intact souls

Synchronicity

When the same idea keeps coming up over and over again I get the feeling that there’s something I need to look at, and think about, and eventually come to some sort of resolution. It’s not that I think some invisible hand is driving me, but that I think that society is grappling with an issue that I’m “tuned in” to. The issue for the last week or so has been “human-ness”.

It probably got kicked off by watching a PBS show – “The Human Spark”. Basically the premise is finding a dividing line between human and non-human. They started with genetics and I was thoroughly fascinated. When they touched on people with genetic abnormalities (micrencephalous) I started to feel a little uneasy. Clearly understanding why brains develop is important and the fact that genes were identified by a group of patients is good detective work, but I felt uncomfortable with the implication. Somehow this kid on the TV wasn’t “one of us.”

Then there was a fairly nasty discussion on a friend’s facebook page about a study (Actually this article about the study) that was looking at the idea that “miswiring” in a developing brain was the cause of autism. Several autists felt insulted by the idea that they were labeled as “wrong” as opposed to just different. Initially my reaction was that scientific studies were important, while the semantics of a Business Week article was not all that important. Understanding root causes can lead to better therapies and in the end inclusion of people like my son. But this comment from Kristina (who had posted the link to the article) – “I read plenty of the same "demeaning" sorts of stuff every day about all kinds of things, and have for a long time, and regret any insensitivity, which was not intended. I have plenty of mis- and dys- wirings of my own.” – really made me stop and reconsider my discounting of semantics.

Then this article in the Baltimore Sun really brought it to a head. In particular this passage –

Disorders like autism are not only perplexing to scientists, they're frustrating, Chakravarti said.

"We attach much more meaning to them than to other disorders, because they have to do with the basic aspects that make us human - our ability to feel, to think, to speak," he said. "It destroys, often, the sense of self that we have."

So there you have it, in black and white, the basis of my discomfort.

Here’s what I believe. My son has had some serious challenges in his life and the will continue to have them through his life. He will not be cured, because his autism is at the basis of how his brain functions. He, along with his autism, is the child that I love and I would not wish him out of existence. My son, with support from me and others, will continue to figure out ways to fit into our society and ways to find happiness. Regardless of how different he is, I know that he is human, and no less human than others who are not autistic. The level of problems that he has makes me judge his neurological issues as defects, but they do not stop him from being “one of us.” I know that thinking about “human-ness” is part of our humanity and I don’t think the thought and research cited above should end. I do think that it is important not to discount humans with disabilities, i.e. not to be “ableist.” I challenge anyone to spend a decent amount of time with my son (with an open mind) and come to the conclusion that he is less than human. I will speak against implications that those with autism are somehow not "one of us."

And in response I get...

See my last post for context.

I appreciate any response and the need for student privacy, but this emailed response seems pretty weak to me. My summary would be "this isn't your business and anyway we are blameless for this problem." Tell me if you think I've got that wrong.

I have received your message regarding a specific student which you characterize as a student with disabilities. Unfortunately, it is not possible for me to respond regarding any individual student—even to acknowledge the presence or absence of a disability—or to provide any additional information.

I know that you are concerned about all students—especially those with disabilities. Please be assured that we share your concern. You should know that the Fort Smith Public Schools have a long history of providing for the needs of all students and that it is our intention to comply with all applicable requirements of state and federal law as we seek the best level of educational service. It is also important to know that while our staff are well trained to address a wide range of student needs, we also utilize the services of a number of other professionals and agencies to access the appropriate diagnostic and educational services for each student.

Thank you for your concern.

Benny L. Gooden, Ed.D.
Superintendent of Schools
Fort Smith Public Schools
Box 1948
Fort Smith, AR 72902
Phone 479-785-2501

I realize that my perspective is biased, but I find the injustice of this situation heartbreaking. I really wish I could figure out a way to bring this into the national spotlight. Any help or suggestions welcomed.

Help Zahhquery Price

After reading the ASAN Action Alert (reposted below the line) I just sent the following email:

Dear Dr. Benny Gooden (Fort Smith School Superintendent) -

I am writing you to ask you to help change the disastrous direction that Zakhqurey Price's education in the Fort Smith Public Schools is taking. If there is any way that your actions can make the charges against Zakh can be dropped, please do so. Autism is a complicated disability and it is understandable that mistakes can be made, but it is important that at this point actions that could seriously hurt Zakh, including incarceration and institutionalization, are stopped. An IEP that helps Zakh get a Free and Appropriate Public Education in the Least Restrictive Environment needs to be created immediately with input from his grandmother. In this IEP there needs to be concrete steps taken in terms of training and support to keep this type of situation from ever happening again.

As a mother of a child with significant autistic challenges I feel the pain and fear that Zakh and his grandmother are going through. Please, if there is any way for you to help them, I am asking you to do so.

Sincerely,
SNIP

Please, if you can, help Zakh with emails and/or calls!

-----------------------------------------------------------------------------
Reposted from ASAN

ACTION ALERT: Fight Inappropriate Restraint - Free Zakh Price!

Hello,

In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to.

Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools.

Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now.

Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. Carole's grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely.

That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org/
info@autisticadvocacy.org
(202) 596-1056

How much worse could it be?

Quite a bit worse, it turns out.

Sometimes it's pretty easy to feel sorry for yourself. We just had a fall-out-of-the-sky $900 vet bill, I'm not so thrilled with being fourty-seven today and a little extra sleep would be nice.

Then a little perspective comes and I'm left thinking how lucky I am. Zakh Price's story makes me feel that way. Here's a short YouTube that will fill you in:



Basically you've got a school system that knows nothing about autism mistreating a 5th grade autistic child until he explodes and then charging him with a felony. There's past institutionalization and threats of future incarceration - things that makes me shudder just to think about. It's horrible beyond belief but I can totally identify. Clearly legal council is needed and that's why the family is asking for help.

Having an autistic child can make you worry, especially when you're in Baltimore City public schools - not know for excellent education in general and specifically under a court order for special education problems. But honestly, I can't imagine anything this bad happening here. I'm lucky I'm not asking for this type of help and I'm lucky I can afford to pitch in. I hope some readers of this blog can do the same.

You can go to this webpage for more information. There's also a gadget to let you contribute to the cause as I did today. There's a good summary here and a more detailed account here. Whether or not you pitch in you can send an email here.

What's so bad about perserverance?

Anyone with a kid on the spectrum is familiar with the "problem behavior" called perseveration. A by-the-book definition would be an uncontrollable repetition of a phrase or activity. In practice the uncontrollable part gets left off, or maybe the point is that the observer can't control the behavior by saying "stop it." And usually it's more about the observer's annoyance than problems being caused. Msk perseverates (or focuses or repeats) quite a bit. He's drawn to images or dialog and copies them over and over. He experiments with small changes as he mulls these objects over and over. Drawings become captured images of an animation. Repeated dialog gains a ritualized meaning.

If I was dreaming of a cure or recovery from autism for him these behaviors would probably be a place to start. Since there are activities that aren't perseverative and speech that isn't echolalic, I suppose a warrior mom would be struggling mightily to erase the "bad" and bring out the minimal amount of "good" behaviors. I'm afraid I'm more of a "bad" autism mom. Those repeated phrases with their ritualized meanings are about the only clue I have of msk's feelings and thoughts. Typical speech is reserved for concrete objects and actions, but emotions just aren't conveyed that way. And I treasure his drawings. It's the hours of repetition and the stacks of paper that he goes through that have honed his idiosyncratic skills.

Last week msk spent at least an hour typing on my netbook while flipping through the pages of Dr. Seuss's ABC's. A few furtive peeks (msk is not into being interviewed of even observed when he creates) let me know he was doing some sort of transcription. When it was time for bed MS Word was quickly closed. The next time I opened Word it asked if I wanted to recover a document and I found that he had, page by page, recreated the book, including font style and color. It was an amazing amount of work for a kid who barely speaks.



When I see msk lying on the floor filling up page after page of a notebook I'm reminded of painters learning their craft. When I hear the same phrase repeatedly spoken, with all it's associated meanings, I think of a poet, endlessly working over a single page of words to develop a perfect poem. These "problem behaviors" don't subtract from msk's humanity, they add to it.

Resolution Time

Why has it been so long since I’ve written a post? There are plenty of interesting things going on kid-wise and school-wise. I’ve been struggling with putting things on this blog that are too personal when talking about my kids. They’re all over 10yo and although none qualify as “mature adults” they should expect a certain amount of respect from their mom.

That, and the fact that the holidays are always crazy.

Enough excuses. Time to man-up (horribly sexist phrase - makes me cringe) as a fellow blogger said. I don’t think there’s any reason I can’t post daily this year. Maybe the posts will be shorter and a little less thought out, but I’m setting a goal of 300 posts in 2010.

Wish me luck.