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ASAN Update on Restraint & Seclusion Legislation National Call-In Day

15 Jan

I just received the following email from Meg Evans of the Autistic Self Advocacy Network (ASAN). ASAN is working on legislation to reduce seclusion and restraints within the schools. This alert calls for action next Thursday to call your representative (should you be a U.S. citizen) to support upcoming bills.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. To increase support in Congress for the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860), ASAN and APRAIS are asking disability rights advocates and others who favor the legislation to call members of Congress on Thursday, January 21st, and ask them to co-sponsor the bill. You can also help by reposting and distributing the announcement below.

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network
mmevans@woh.rr.com

Here is the letter:

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress — please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

To find out the names of your US Senators and Representative, click here (link to www.congress.org)
Ask for the offices of your US Senators and Representative
Ask to speak to the person working on education issues
Identify yourself as a constituent and the organization that you represent (if any)

Message: ” I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

Forbes on “Stars Vs. Science” once again the autism community looks bad

15 Jan

Forbes Magazine has an article, Stars Vs. Science, From Jenny McCarthy to Tom Cruise, some Hollywood hot shots are leading a war against modern science. The opening paragraph is pretty telling about the tone:

When the medical journal Pediatrics released a consensus report early this year concluding that autistic children do not benefit from special diets, ABC News’ Diane Sawyer knew just whom to call. Jenny McCarthy, former MTV game host, nude model and now mother of an autistic son Evan, enthusiastically denounced the study. “Until doctors start listening to our anecdotal evidence, which is it’s working, it’s going to take so many more years for these kids to get better,” she opined

Or, you can just take a look a the URL–science-jenny-mccarthy-business-healthcare-hollywood-autism.html

Once again, the Autism community takes it on the chin that our representative in the public eye is, well, in a league of her own when it comes to understanding science. Even though the story is about celebrities and science in general, autism plays a big part in the story as a whole. Take a look at the celebrities that were selected for the “slideshow”

Of course, there are Jenny McCarthy and Jim Carrey (click to enlarge and read the caption):

Ms. McCarthy and Mr. Carrey have been trying to shake loose the anti-vaccine image for a while. It doesn’t appear to be working. From the article:

But some of the best-known celebrities use their soap boxes to spread scientifically dubious–and potentially harmful–messages. Jenny McCarthy believes vaccines cause autism, despite numerous studies to the contrary. She campaigns against child vaccines that have been shown to save lives. In 2008, the Centers for Disease Control reported that measles outbreaks had spiked because more parents were deciding to leave their children unvaccinated, thanks to the burgeoning anti-vaccine movement.

Others who made the cut? Arriana Hufffington, of the Huffington Post, (again. click to enlarge):

It is worth reading the caption to that one. Dr. Rahul Parikh is quoted from his Salon.com piece, The Huffington Post is crazy about your health, Why bogus treatments and crackpot medical theories dominate “The Internet Newspaper”.

The quote:

But Huffington has distorted science and facts…fairness and accuracy in health and medicine take a back seat to sensationalism and self-promotion

In his piece, Dr. Parikh had noted the Huffington Post blogs by “David Kirby, Jenny McCarthy’s pediatrician Jay Gordon and detox advocate Dierdre Imus” and also spends a considerable amount of time discussing a piece by Jim Carrey.

The Forbes piece also discusses Oprah Winfrey (click to enlarge):

Once again, autism is prominent in the description given by Forbes.

I’m sure some readers will assume I’m putting this up to embarrass these celbrities. Yeah, like being in Forbes is so low profile that LBRB is going to be the embarrassment for Oprah and company. No, this is just another vent of anger. Anger that the autism community is once again seen by the public as the home to people who are “leading a war against modern science.” Tell me how that helps us advocate.

One notable entry outside of autism is Bill Maher. (click to enlarge)

I bring this up because Forbes notes that Bill Maher has been discussed by “quack busting doctor-blogger David Gorski”. That’s the same guy you can find on Science Based Medicine,

The article does seem to be following a recent trend: they aren’t looking for “balance” by quoting groups from the anti-science side. Instead, qutoes are had by:

William Schaffner, chair of preventive medicine at Vanderbilt School of Medicine:

“These are folks who really don’t have the best information, but because they are vocal and well organized their message has gotten out” [as a result] “around the country pediatricians and their staffs are having to spend more and more time persuading parents to have their kids vaccinated in a timely fashion. It is an enormous problem.”

Stephen Barrett of Quackwatch.org

“Talk shows don’ t pay any attention to whether the advice on their program will kill people. … Producers consider it entertainment,” he says, adding: “Never take health advice from a talk show.”

and

Dr. Paul Offit of the Children’s Hospital of Philadelphia:

Why do celebrities feel the need to spout off on medical or scientific matters? Because they’ve excelled in one field, stars “think they’re an expert in many things,” says the vaccine expert Offit. “That part doesn’t bother me. It’s the part that we listen that bothers me.”

I’m inclined to agree with Dr. Offit. It is the part that we listen to celebrities when they talk about things far outside their expertise that bothers me.

National Council on Disabilities meeting next Tuesday

15 Jan

I realized a while back that I should be posting the announcements of the NCD (National Council on Disabilities) as well as the IACC announcements I post.

The NCD meeting is being held at the same time as the IACC meeting, for the first day at least. The NCD meeting starts on the 19th (the day of the IACC meeting) but goes on to the 21st. The meeting is being held in Houston, Texas.

Dear Friends and Colleagues:

On behalf of the National Council on Disability (NCD), it is my pleasure to invite you to attend NCD’s next quarterly meeting, which will take place at the JW Marriott Houston, 5150 Westheimer, Houston, TX, beginning at 8:30 a.m. on Tuesday, January 19, 2010, and ending at 11:00 a.m. on Thursday, January 21, 2010. This meeting is open to the public.

NCD’s purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. To carry out this mandate we gather public and stakeholder input, including that received at our public meetings held around the country; review and evaluate federal programs and legislation; and provide the President, Congress, and federal agencies with advice and recommendations. NCD is an independent federal agency, composed of 15 members appointed by the President, by and with the consent of the U.S. Senate.

NCD believes it is vital to hear from communities around the country on what works and what does not for people with disabilities. This meeting will provide another opportunity for that exchange. The agenda will include, among other things, presentations by the Honorable Kathleen Martinez, Assistant Secretary of Labor for Disability Employment Policy and Lex Frieden, Professor of Health Informatics and Professor of Rehabilitation, University of Texas at Houston; presentations on emergency preparedness and youth with disabilities in transition; and two releases of NCD research projects: Workforce Infrastructure in Support of People with Disabilities and The State of Housing in America in the 21st Century: A Disability Perspective.

Specific times are also designated to receive public comment, supported by a toll-free call-in line, and input is encouraged and greatly appreciated. Individuals or organizations can also provide written comments by e-mail, fax, or mail. A public comment session will be held Wednesday, January 20, from 11:30 a.m. until Noon, CST. The toll-free call-in number is (888) 790-6568, and the pass code is “NCD Meeting.” Written comments on disability-related issues of concern or interest can also be emailed to mquigley@ncd.gov at any time.

You are also invited to join us for a reception at the hotel for meeting participants, audience members, and stakeholders from the disability community on Wednesday, January 20 from noon until 1:30 p.m. Additional details about the meeting will be posted on the NCD Web site at http://www.ncd.gov as soon as they become available. You will also find the meeting agenda posted there approximately 10 days before the meeting is scheduled, and written comments for Council consideration can be submitted at any time by writing to ncdinfo@ncd.gov.

For more information, please contact NCD’s Director of External Affairs, Mark S. Quigley, at mquigley@ncd.gov or by telephone at 202-272-2004 (V), 202-272-2074 (TTY), and please visit our Web site at http://www.ncd.gov. At that location you can also sign up to become a member of our extensive listserv, where you will get frequent updates about NCD activities, reports, and news of importance to the disability community nationwide.

We hope you will attend and participate.

Sincerely,

John R. Vaughn
Chairperson

IACC meeting next Tuesday

14 Jan

As always, you can submit comments for the meeting. You don’t have to wait for them to request comments. They will be voting on the Strategic Plan. This is a good time to submit comments.

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20892-9669
Phone: 301-443-6040
E-mail: IACCPublicInquiries@mail.nih.gov

Here’s the announcement:

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, January 19, 2010 from 9:00 AM – 5:00 PM ET at the William H. Natcher Conference Center, NIH Campus, in Bethesda, MD.

The purpose of the IACC meeting is to discuss and vote on recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research. The meeting will also include a presentation on epigenetics and autism by Dr. Andrew Feinberg of Johns Hopkins University School of Medicine.

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. The meeting will be remotely accessible by videocast and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

To access the conference call:

USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.

The latest information about the meeting can be found at: http://iacc.hhs.gov/events/2010/full-committee-mtg-announcement-January19.shtml

When toxic metals are in products there is outrage…isn’t there?

14 Jan

Imagine products that tested positive for a metal which studies have reported linked to autism severity. Imagine those products were supplements marketed for use with autistic kids. Would you expect some outrage, especially from the groups linking autism to toxic metals? I would.

Have you heard about the possible antimony contamination in some supplements manufactured by Kirkman Laboratories:

NOTICE TO OUR CUSTOMERS:

Jan. 7, 2010

Dear Kirkman Customer and Distributor,

It has come to Kirkman’s attention, that a raw material vendor has supplied Kirkman with stevia that has a higher content of antimony than may be acceptable for our special needs customers.

The problem is limited to only two lots of stevia, which were used in several Kirkman® products. These products affected by the high antimony levels are:

1. Zinc Liquid – – Product # 387/8 and 387/16
2. Super Nu-Thera® w/o A and D Powder – – Product # 447/454
3. DMAE 50 mg. Chewable – – Product # 489/90
4. Super Nu-Thera® Powder Orange – – Product # 410/454
5. B Complex with CoEnzymes Pro-Support Powder – – Product #399/7
6. TMG w/Folic and B-12 Powder – – Product #413/4 and 413/8
7. Vitamin C 250 mg Chewable Tablets – – Product #389/100 and 389/250
8. Trial sizes of the above seven products

You should stop using these products, destroy them and request a credit or replacement from Kirkman®. Please call our customer service department to make this request.

Raw material suppliers or nutraceutical companies are not required to test for antimony levels, so Kirkman® was not aware of this problem until two of our physician customers brought the issue to our attention as a result of their metal testing. We immediately had our laboratory research the issue. They quickly isolated the problem to two specific lots of stevia leaf extract. Kirkman® immediately stopped using the affected stevia and stopped shipping products that tested out at high antimony levels.

So that this situation does not reoccur, we have implemented a new policy that every raw material we use in our products will be tested for antimony.

Kirkman® apologizes for any inconvenience we may have caused because of this issue. We have instituted this voluntary action regarding the suspect products because we feel it’s the right thing to do. Kirkman® will not compromise on the quality standards we have been known for throughout our more than 60 years of business.

Sincerely,
Larry Newman
COO Technical and Regulatory Affairs
Kirkman Group

and

NOTICE TO OUR CUSTOMERS:

Jan. 12, 2010

Antimony Update

What are the effects of ingesting antimony?

There are still unknowns regarding the ingestion of antimony. Antimony is not typically a contaminant in raw materials. It is not part of the USP heavy metal screening that raw materials are typically tested for by importers or food and supplement manufacturers. Furthermore, there are very few studies that define what are safe or potentially harmful levels of antimony. Kirkman® has spoken with government regulatory agencies regarding safety issues from the use of antimony. Their response is still forthcoming. As a result, we don’t have all the answers currently.

Orally consumed antimony is typically eliminated by the body through urine and feces in several weeks and probably isn’t bio-accumulated. If this is the case, the levels in Kirkman’s products would pose no risks. The few clinical studies reported in the literature tend to indicate that levels less than 1 mg. of antimony per kg. of body weight are eliminated without side effects. Kirkman® will continue to update our website as more information becomes available. Thank you for your patience in this matter.

Larry Newman
Chief Operating Officer
Technical and Regulatory Affairs
Kirkman Group, Inc.

If you are like me, you’d be wondering if anyone in the alternative medical world care about antimony. The answer: You bet. A recent article touted by many in the biomed community, The Severity of Autism Is Associated with Toxic Metal Body Burden and Red Blood Cell Glutathione Levels claimed “this study demonstrates a significant positive association between the severity of autism and the relative body burden of toxic metals.” (for more on that study, see Prometheus’ analysys, Is DMSA safe and effective?). One of the toxic metals reported in that study…antimony.

The regression analysis found that the body burden of toxic metals (as assessed by urinary excretion before and after DMSA) was significantly related to the variations in the severity of autism, for each of the four scales. The metals of greatest influence were lead (Pb), antimony (Sb), mercury (Hg), tin (Sn), and aluminum (Al).

This was discussed by the alternative medical autism community. For example, in Toxic metals related to more severe autism symptoms, the blog author wrote:

A new Journal of Toxicology study seems to confirm that children with higher levels of metals – such as lead and antimony – in their urine had more severe autism, suggesting that metal levels in their bodies may contribute to its seriousness.

I always hear a lot about “EPA drinking water limits” when it comes to mercury. 2 parts per billion is the limit for Mercury. The limit for antimony? 6 parts per billion.

Now, keep in mind that the drinking water limit argument is almost always used incorrectly and, to this reader’s eye, as a scare tactic. But, I wonder if the same measures will be used if and when anyone in the alternative medical community decides to discuss the Kirkman supplements.

Kirkman Laboratories is one of the well known suppliers of supplements to the autism biomed community. Let’s say that one of the big pharmaceutical houses had made the announcements above, would there be outrage voiced on the blogs?

Response to Jake at Age of Autism

14 Jan

Jake Crosby has written a fairly humdrum piece about me which contains a few errors (as do some of the comments), most notably his claim that he’s tried to contact me. I’ve not recieved any contact from him at all either to my personal email nor via the Feedback widget. If Jake wants to contact me to discuss his piece I’m more than happy to do so – you can get me at kevleitchATgmailDOTcom.

The piece itself is a rehash of some of the early comment threads on here – I used to think vaccines caused my child’s autism, then I changed my mind. Jake speculates about why that might be without coming to any firm conclusion.

Board ordered suspension, probation, for Dr. Roy Kerry

12 Jan

The Pennsylvania State Board of Medicine has ordered license suspension, probation, and a medical skills assessment for Dr. Roy Kerry, 71, who is linked to the 2005 death of a five-year-old boy with autism.

Tariq Nadama died of cardiac arrest in Kerry’s office following an IV push of disodium EDTA, a chelating agent indicated for, among other conditions, the emergency treatment of hypercalcaemia. But there is no credible evidence that chelation is effective for treating autism. It was the boy’s third chelation appointment in Kerry’s office that summer. Tariq’s mother was in the treatment room when her son arrested.

Under the August, 2009, settlement agreement, Kerry admits that he “ordered the treatment of a patient that was contraindicated in the manner and choice of delivery.” The agreement also called for a three-year suspension of Kerry’s medical license, “of which six months will be active, and the remainder … shall be stayed in favor of 2-1/2 years of probation.” He was further ordered to refrain from IV chelation of a minor.

Kerry was further ordered to start a clinical skills assessment at the University of Wisconsin School of Medicine within six months of the order.

You can download the decision here .

Tariq’s death was a huge embarrassment to the autism “biomedical treatment” movement, which tried to characterize it as an accident caused by a drug mix up. EDTA comes in two formulations, and the type given to Tariq removes calcium, which is necessary for cardiac muscle contraction. The other version, calcium EDTA, is used for the treatment of lead poisoning.

But Kerry told investigators that he only kept disodium EDTA in his office. From the medical board report: “Respondent stated… that disodium EDTA is the only formula of EDTA he stocks in his office”; he “admits that calcium EDTA is available but that he has never used this agent.”

Tariq’s parents were referred to Kerry by Dr. Anju Usman, a Chicago-area DAN practitioner. According to records, Usman diagnosed the boy with high aluminum levels, and prescribed calcium EDTA. But Kerry said he treated Tariq for lead poisoning, even though his blood lead levels did not indicate the need for chelation.

Kerry became a DAN practitioner about a year after he caused Tariq’s death. He remained a member until last November, when a Chicago Tribune reporter asked the Autism Research Institute, the parent organization of DAN, about Kerry’s membership. Kerry was reportedly dropped one day after the Tribune inquiry.

Kerry’s lawyers claimed, in their client’s defense, that “some physicians believe there is a correlation between environmental factors, including heavy metal overload, and a propensity to develop autism.” Such “beliefs” have no credible scientific support.

The Butler County, PA, district attorney brought criminal charges against Kerry two years ago, but dropped the charges in May, 2008. District Attorney Richard Goldinger said at the time that he “asked the court … for permission to drop charges of involuntary manslaughter and child endangerment against Kerry after new evidence was presented by his defense.”

Goldinger did not specify at the time what information led to his decision. Kerry’s lawyers have maintained that Tariq’s calcium levels were 6.9 mg/dL at the time of death, which is below normal range for children, but above 6.0 mg/dL “which is generally thought to be fatal.”

So what is ‘cure’?

11 Jan

All I can offer is my own opinion, so thats what follows. Unlike some bloggers I’m not interested in a lawyerly fillibuster designed to ‘win you round’, just in presenting my own opinion.

Cure is by its very definition a total removal of something that ails somebody. Anything else is therapy. So now we need to ask if theres anything about autism that makes someone medically ill to the point of non or poor functionality. Of course there is. People who struggle to communicate such as my own child are ill in two ways. One is the fact that societies failure to accomodate more than one type of communication means that society ‘makes’ my child ill. Two is the fact that autism has affected xyr ability to communicate in an NT world and that to ignore the fact that xe exists in an NT world is futile and that therefore ‘therapy’ is required to address this.

Does this mean that speech and language therapy is a cure? No. I don’t think its possible to make that claim. SaLT doesn’t address autism, it addresses communication.

There is, despite what some will tell you, no cure for autism. No pill to take, no drug to inject, no strategy to follow that will remove autism. There are a variety of differing therapies, some of which are valid and some of which are not which will help an autistic person function in an NT world.

However, what we must never forget is that it is not only up to the autistic person to try and learn to adjust to the NT world, it is also up to the NT world to try and accomodate *all* types of divergence including autism (and schizophrenia, bipolar. quadroplegia etc). This will have an enriching effect on society which largely fears difference.

So we come to the question: would I (hypothetically) cure my autistic child? No. Its not my choice, its xyr’s. Would I would like to do is raise xyr to the point where that choice is able to be seriously considered by xyr alone. Is that likely. No its not. My child has severe learning difficulties. So what do I do? What is the correct strategy? The correct strategy is to live in the reality we have. There _is_ no cure. I give xyr every chance by ensuring the education and therapy xe recieves works as well as it can. And I have seen for myself in my step child just how affective such a strategy can be. Better to live in the real world than exist in a false world of quacky cure.

Update: Read Casdok’s post on the subject. Excellent. As is Clay’s post also.

Act now: Autistic Child Charged with Felony

6 Jan

Below is an email I received from Meg Evans of the Autistic Self Advocacy Network on a situation involving a child who is being charged with Felony Assault for resisting restraints in his school. Worse yet is the possibility that the student could end up being sent to a mental hospital pending a competency hearing.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. ASAN has created an Action Alert regarding the case of an 11-year old Autistic boy in Arkansas named Zakhqurey Price, who has been charged with felony assault after a school restraint incident. There were no serious injuries, and the incident occurred under circumstances where the use of restraint would not have been legal if recently introduced federal civil rights legislation to protect children in schools had been in effect. We are asking that you take action by contacting the school principal and superintendent to inform them of your concerns and by reposting the ASAN Action Alert set forth below.

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network
mmevans@woh.rr.com

Below is the statement by Ari Ne’eman:

By Ari Ne’eman, ASAN President.

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. His 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!

I usually avoid posting names and phone numbers like this. All to often blogs post such information in an attempt to intimidate. Take to heart Mr. Ne’eman’s call to be polite but firm when you call.

Autism people of the decade: special educators

6 Jan

Just in case you didn’t notice, it’s 2010. The first decade of the new millennium is over. After Mike’s recent post, Autism Personality of the Year, I kept thinking about who I would consider stand-out in the autism communities. Yes it is rather presumptuous for me as a non autistic parent whose child wasn’t even born at the turn of the millennium. As you can see, I’m not letting that stop me.

Time Magazine set a good standard with their “Person of the Year” category. “Person of the year” isn’t necessarily an honor, or a statement that the person was a force for good. That opens up a lot of possibilities when considering the past decade, and given that you can probably guess at a number of the people I considered.

A lot of money has been pumped into autism research in the last decade. There are a lot of excellent research teams. There has been a lot of excellent work done, but to my recollection nothing stands out as truly breakthrough. I am quite open to being corrected on that opinion, though.

When I ask myself, who really has made a difference in the quality of life for my autistic kid, it isn’t the researchers, the advocacy groups or the “personalities” in the autism community that I can point to. What has made a difference are the efforts of a group of therapists and teachers who have devoted themselves to low pay and hard work.

Unfortunately, all is far from perfect in special education and it is the bad stories that make the news. Stories about abuse, seclusion and restraint, bullying and the like are the stories that get discussed on blogs like this one. Add to that school administrations that are underfunded to the point of sometimes making some very bad decisions. But those stories reinforce the fact that good placements and good teachers are worth their weight in gold.

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