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!

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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.

Happy, happy, happy.

You see to the left my arch-enemy.

Just a really quick post because this time of year is insane (book-keeping for Girl Scout Cookies, running the House of Ruth drive at work, buying gifts for teachers & aides and TSS's before the break, shipping packages to out-of-town relatives, making food for work holiday tables, going to work holiday parties, making gifts...you get the picture). Add to that fighting with my computer and IPod because of a virus (note to self - never put off renewing virus subscription especially when msk gets on the Internet and downloads all sorts of stuff all the time).

But that's not what I wanted to post about. Remember this post before, about my war with my washing machine. After weeks of grueling battles involving restarting and very slow drainage, I think I'm winning a round. I've done about six loads in a row without any error/pause/restart issues. It might not sound like much to some, but with a family of five, we generate some dirty laundry every week. Plus I hate doing laundry, so anything that prolongs the effort is evil.

I am currently doing the happy dance!

The path not chosen

So this study has put me on the defensive. Nothing like conclusions that point to things that should have been done differently in msk’s past to make me feel crappy. Should he have received 20 - 40 hours of intensive one-on-one Applied Behavior Analysis (ABA) per week when he was a toddler? Given that we had suspicions in pre-school should we have pushed for a quicker diagnosis and jumped directly into some sort of autistic boot camp? Should we have, then and now, followed him around with a notebook, counting and measuring and using every waking hour as an opportunity for therapy?

I could start with the fact that we didn’t and there’s no way to go back and therefore que sera sera. I feel like some people commenting on this study (over here) are in fact judging me as a “bad parent” so let me tell you why I feel ok about this path that we’re on. In no way does this mean that parents who have found a way to get intensive ABA have made a mistake, just that I don't feel guilty that we weren't able to.

Point one – We did go for evaluation as quickly as the normal system process allowed. There was the in-school evaluation, along with a follow up visit by city pschycologist. There was the several month wait to get an evaluation by Kennedy Krieger. There was the wait for the evaluation report. I cared and I followed up, but I was not the demanding parent who jumps ahead in line because honestly I was coming to grips with the idea of autism.

Point two – When the evaluation pointed towards Kennedy Krieger’s own preschool program I was skeptical. When I found out it was $40K for a half-day program I was even more skeptical. After a lot of long and intense phone calls it became clear that my very good insurance wouldn’t pay for this program. We also found out that there was a several year waiting list for the autism waiver that would have paid for the program, at which point he would have been too old. I decided it didn’t matter about my skepticism since there was no way he could attend.

Point three – This one might be sour grapes, but when I started looking more deeply at it, wrongly or rightly, ABA rubbed me in the wrong way. People are always quick to talk about autism robbing kids of their “human-ness”. ABA ,with its constant reinforcements seemed too similar to the dog training I had just completed. At this early stage in his diagnosis I was all about holding on to msk’s human-ness since I knew we were going to be much more closely involved for much longer than a typical parent/kid relationship.

Point four – As time went on I learned that one of msk’s biggest strengths was a sunny disposition. This drew people in to help him instead of being pushed away by his non-typical behaviors. One of the ways to change this disposition is constant microscopic analysis of his behaviors. I might not know how msk is going to function in society, but I want to know he will find a way and a place to be happy. It is counter-intuitive to me that he needs to be miserable now to be happy later. Life is a journey and not a destination.

Point five - Just because msk is autistic doesn't mean that he doesn't need the unconditional love and typical relationships with his parents. I'm not sure this happens if parents are cast as therapists. Add in two sibling that have their own needs for support from their parents.

On a more general note, I think we need to stand back and think about the practicality of this type of therapy. If 1 in 150 individuals are on the spectrum, how many really good ABA therapists are required in this country? If half-day preschool is $40K per child how much money is required to provide this for every child who needs it? Where are the cuts going to come from to finance universal intensive autism ABA therapy? Maybe I shouldn't ask that question, but it seems like it needs to be thought about.

So, I now have a child who is in a full inclusion setting and is on track (in my mind) to meet academic and social skills on a level with his peers with accommodations as required by his disability. Seems like a good outcome. Would the accommodations be different if he had received all the ABA that Kennedy Krieger recommended when he was 4? Who knows. Would he be able to pass for not autistic at this point? Seems doubtful, and I’m not sure if that’s really the goal we should be shooting for. If he was passing for normal, would every day and ever social interaction be painful and stressful for him?

So many questions and so few answers. Our choices are made and we move forward. Msk is loved child who is valued at home and at school. At this moment, what more can you ask for?

Advocacy, not anger

So, joy of joy, it’s time for another annual plan meeting. You’d think that the meetings for a kid with a lower level disability would be easier than those for a kid with a higher level. Honestly, I think it’s not as much a reflection of the child, as a reflection of the school. There are schools that feel that educating kids with IEP’s and 504’s is a legal obligation – something they have to do. As you might expect, this attitude leads to meetings where much is said but little happens afterwards. In contrast, there are schools that really see the value in educating kids that think differently. Schools that see these kids as an addition. It seems like this attitude spills over into valuing all types of diversity – racial, economic, gender, fast learners, slow learners, etc.

So this morning’s meeting is at a school where I'm not sure that everybody is on board about the value of kids that think differently. Already there are bad feelings about “special treatment” and that somehow a documented, diagnosed learning disability is more a matter of “not trying.” Not from the entire team, but from at least a few teachers. I’m all for holding kids responsible for their actions, but where is the responsibility on the other side? If the school has a plan for a student, shouldn’t they (down to the level of individual teachers) be responsible for reading and following the plan? If a student needs to learn through consequences, then should there be consequences for the school? Doubtful.

Hopefully this vent on my blog will allow me to go into this meeting as a peacemaking advocate for my child. To get what’s needed and what’s constructive and what’s legally called for. Take a deep breath, visualize good outcomes and… ready to go.

Post Script - All went well and I am left with a feeling that even if individual teachers have issues with special needs students, this is not a school-wide problem.

Moustache time again

So once again Baltimore City Schools are participating in Moustaches for Kids. This is a fun project to help raise money for specific projects at specific schools in Baltimore via Donors Choose. Donors Choose is a great idea. Teachers put in proposals and donors search for projects that interest them. The direct connection is wonderful. You get personal emails, detailed descriptions and you feel totally connected to the classroom that you're helping out.

What's the connection with moustaches you ask? Several brave men involved in City Schools (there's a list here) pick projects and grow moustaches. As time goes on they post pictures of their endeavors.

I've put a widget on the side of my blog for the grower I'm supporting - Nick Greer. You can also get to his page here. He's a great teacher - Baltimore's Teacher of the Year in 2008. He was also the grower I supported last year. By making a donation your are:

1. Supporting City Schools
2. Showing support for Baltimore's Teacher of the Year
3. Supporting teachers in Baltimore's schools
4. Letting me know that people read and are influenced by my blog

I admit reason 4 is pretty lame, so let's focus on 1 -3. Baltimore's schools need all the help they can get. Nick is an outstanding teacher. But for me the biggest reason is - Who can turn down teachers who are putting in extra work to support their students and student's in their colleges' classrooms?

"For Absent Friends"

Some words I wrote in comment on an Inside Ed comment (in italics below) got me thinking:

"Remove the politics from education" - you're kidding, right? What in the world is more political than education? We've got public education which is obviously funded by politicians with poor districts vying for fair funding vs. rich districts with a political formula that is used to decide funding. You've got the wealthy and those who aspire to raising their standing in the class structure opting out of a failing public education for an expensive private education. Is there anything more political than class structure? You've got parents and their tax dollars moving to districts with "good schools" and abandoning districts with "bad schools". You've got NIMBY attitudes about schools and students from neighbors who are victimized by crime (or a perception of crime in some cases) radiating from schools. You've got astonishing disparities in school buildings, technology, social service needs etc between schools and between school districts...

Having and raising kids is an activity that's bound to change your perspective on many things. My two "neurotypical" kids did a good job convincing me that the path I had taken (public school education while my non-public school peers and their parents were appalled) was really about the same 30 years later. In the same way that I could find ways to connect to people outside of public school then, my neurotypical kids have non-public school friends now. Because of them I have friendships with parents of non-public school kids.

The new perspective has come from my autistic child. Integration and inclusion were things that were new and were pretty idealistically approached when I was a student. For msk they are a concrete need and a legislated right. When friends that are parents opt out of public schools (and I've got to say about 95% of friends that I knew before kids have gone that path), they are opting out of letting their kids be educated alongside msk or other special needs kids. Special needs kids like msk will not be found in private schools, whether they are the prestigious ones or the liberal ones or the arty/experimental ones. No school that any neurotypical kids of friends attend, would ever consider allowing msk to attend. No homeschoolers will ever interact with him in an academic setting and the chaos of parties is not the place to get to know msk. Honestly, we don't attend too many parties with msk except those related to his school friends or family affairs.

There's a social justice issue going on here and I'm saddened that so few of my pre-kid friends can be directly involved. It's a passion for me - education is a right for special needs kids and for the economically disadvantaged that make up the majority of kids in Baltimore's schools. When friends opt out they push msk and myself out of their lives. I am saddened.

What made this weekend insane

I love my life and kids, and I'm not complaining, but I just want to write down the agenda from this weekend. This was an especially tough one because my dear husband was sick and incapacitated for the duration:

Friday

• Leave work early to make it to Fells Point to buy corn husks (middle school kid volunteered me to make tamales for a Day of the Dead party on Tuesday)
• Go home to whip up pot luck dish for a dinner meeting for elementary school kid parents
• Go to meeting with all 3 kids, older ones acting as chaperons - ends around 9:45 which is a late night for msk
• Get msk to bed pronto so he won't be a disaster on Saturday
• Count money and do book-keeping to prep for Girl Scout Cookie booth sales

Saturday

• Get msk to Special Hockey in Reisterstown - spend an hour cheering and encouraging
• Rush home so that msk can make it to a movie with his aide and classmates
• Rush to Girl Scout leaders home for cookies for a booth sale
• Spend 3 hours at a booth sale with high school kid
• Drop off remaining cookies and pick up pre-packaged salad for Halloween Pot Luck
• Take 2 kids to Catonsville for Halloween party
• Come home and take msk trick-or-treating - a challenge for an autistic kid, but he loves it
• Wait for midnight to pick up kids from Catonsville

Sunday

• Normal grocery shopping with msk while kid #2 does Sunday school & church
• Figure out some books that look new enough to give as a birthday present for a 5th grader
• Start laundry
• Rush to birthday party in White Marsh
• Spend 2.5 hours trying to keep a very excited autistic kid in line in a hyper-stimulating environment
• Come home and continue laundry
• Start cooking pork and Chile sauce for tamales, finish with kid #2 when she returns from youth group meeting
• Fix dinner
• Help get a school project to print-out right (adjust columns for a tri-fold brochure)
• Stay up too late doing laundry

Monday's plan (post script of the weekend)

• Take msk for a haircut- often a challenge for an autistic kid
• Roll & steam tamales with kid #2 into the wee hours