Advocating

I'm looking into some information for my friend Robin on a situation that's happening with her little sister.

Her little sister is 6 years old and in grade 1, in a regular classroom in Catholic school. She was diagnosed as ("severe") Autism Disorder when she was a toddler, and in the past year, she was able to attend school regularly with an IEP and an EA (Educational Assistant, aka, a one-on-one aid). She got along well with that EA.

Sometime last year, the school was asking for more documentation of her diagnosis, even though the documentation that was provided the previous year was enough for her IEP. The school was needing the further documentation for her IEP, her EA and a special assistitive technology laptop.

The family got documentation from their family doctor and held meetings with the school, which resolved that particular issue.

However, this year, her sister no longer has the EA that she got along with so well, and has a new EA who doesn't seem to be actually helping the sister. She and the EA do not get along, and it has gotten to the point that she does not want to go to school.
The school, now, wants her to go to a different school, because they do not want to provide her with further help to find a different EA.

As it is, Robin's sister was working up to attending school full-time, but now her education plan as been completely disrupted. From what I can see, if the school gets its way, either Robin's sister remains with her dysfunctional EA and descends into meltdown and behavioural problems, or else is forced to start again in a different school, which, as you know, can be traumatic.


Now, the question is, is the school allowed to do this, and what can the family do?

Does anyone with knowledge of Canadian education laws know anything that we can do about this?

Please support Zakh

I want to stress this issue more. Zakh is an 11 year old autistic boy who is being charged with a felony for pushing and kicking two teachers who were attempting to restrain him as he was trying to calm down from a meltdown. The two teachers in question was, at the most, only bruised and did not need medical attention. Yet this boy is being threatened with being placed in a mental hospital that is not equipped to support autistic people, and even has caused Zakh to regress.

There is more information at http://zakhs.blogspot.com/

Please, spread the word about this to the media, and if you even have a few dollars to spare, please donate, as his grandmother is in need to funds for legal fees.

Bit delayed in posting this, but things have been a bit rough in the recovering from holidays period. Anyways, I received this email on FaceBook, and I decided that it's important to bring this issue to light.

I'm not going to say much, except that if you don't know about the case with Zakhqurey Price and what we're talking about here, please do a quick search to get caught up on the details.

From Ari Ne'eman of ASAN

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

Merry Christmas

MERRY CHRISTMAS!

I know that I should be saying Season's Greetings and Happy Holidays, and get away with saying Happy New Year.

However, this is my holiday which I'd like to share the celebration. If you are celebrating a holiday, feel free to comment with your greeting. I know that Hanukkah is over, but better late than never?


Updates are going to be delayed right now, as the holidays are causing massive dysfunction in my ability to do things in general. I expect to be holed up in my room playing Kingdom Hearts, or trying not to fall on my ass skating, for quite a while.

Til then, have a good one!!


**Characters are from my comics the Lord of the Shepherd and Amhelaki Misadventures. Also, this image is available on DeviantArt

Youngest Autistic Nominee on National Council on Disability

Not too long ago I posted the Press Release from the White House announcing that Ari Ne'eman of the Autistic Self Advocacy Network has been nominated by President Obama to the National Council on Disability.

As a part of the NCD, Ari will be representing the neurodiversity perspective in advising the President, Congress and executive branch agencies

"to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society." (National Council on Disability website, main page)

If you haven't gathered from all the ruckus that's being made across the Internet, this is a big deal, for two reasons:

The first is that he is the first openly autistic appointee, breaking the unsaid barriers keeping autistic people from being a part of the decision process regarding, well, everything about our lives. This marks a major step in the inclusion of autistic people as a part of society, not just in terms of social inclusion, but also on the political and governmental level, and recognizes us as citizens of the countries we live in, with the rights, freedoms and responsibilities that being a citizen includes.

The second is that Ari is also the youngest appointee in the history of the United States, as being 22 years old, Ari is younger than the previous holder, Mike Lopez at the age of 24. However, while his critics are citing that his age makes him ineligible for his nomination, I would argue that age is not an indication of ability in this case.

Just looking at the UMBC, Newsweek Magazine and New York Magazine articles, Ari Ne'eman has been working in the cross-disability civil rights field for quite some time, and while he's not actively involved and outspoken about every issue (or at least, the media hasn't picked up on it), Ari still spearheads and pushes forward on many campaigns. In the very brief mini-bio that the White House produced:

"Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder."
(Press Release, Office of the Press Secretary, 16 December 2009)

I'm going to forgive the White House for the slight slip with the "neurodiversity movement", since we're not an organized movement, per say, but we are a thought movement. We agree, more or less, with the same flow of thought that we seek to advocate in our daily actions and lives. However, I have to point it out that we are not an organization, because somewhere out there, some one is thinking that this is a part of some grand evil plot towards world domination, or something. Right, because we renounce autism as a tragedy to be avoided and cured, and want all autistic people to have equal civil rights and access to accommodations and supports, is part of a conspiracy...

Anyways, ending tangent there and moving right along.

The point is, we have a very experienced young man (younger than me, too) being nominated into a position that allows him (as well as other disability rights advocates) the ability to give advice and input directly to the President, Congress and other executive branches, a young man who is dedicated to promoting the human rights of all autistic people across the spectrum and works continually for this cause.

Yet, because he doesn't see autism and disabilities as an automatically negative element, but instead as a person's difference that can result in unique challenges and difficulties in a setting that is ill-suited to accommodate and support individuals, there are groups out there who would rather Ari not be a member of the NCD. Actually, that's a bit of an understatement; they are venomously against Ari and the neurodiversity movement of thought.

But of course, for returning readers of this blog, this really should not be a surprise. And of course, these people are exercising their right of free speech and protestation to encourage people to write to their Senators, stating that they are against Ari.


Now, this is up to each of you, but I would people who support Ari, even marginally, to contact their Senators and give them a balanced view on this, in that there are members of the autistic and cross-disability community who support Ari. Being that I'm Canadian, I don't really have a Senator to contact, but Nicocoer has provided me with some excellent resources to get in touch with Congress here , the various U.S. Senators here, and even President Obama at the White House.

And since the form on the White House site allows for people outside of the US to submit messages, here is mine:

Dear Mr. President,

I would like to let you know how much I am very pleased and delighted in your nomination of Ari Ne'eman to the National Council on Disability.

As an autistic self-advocate myself, I have always admired Ari for his dedication to promote the causes of the Cross-disability community and the best interests of all autistic people in the United States.

It heartens me to see the United States take such a progressive step towards including and accepting autistic people as citizens involved with the nations, and I hope that the rest of the world takes notice and learns.

On behalf of myself and other like-minded autistic individuals, I would like to thank you for including our voice in issues that concern us.

Yours truly,
Corina

.

B-Calm Sounds Review

If any of you wander over to my profile page here, you will see that I identify myself as being ADHD as well as on the Spectrum. So, I have problems with concentration and paying attention, alternatively randomly wandering off and hyper-focusing, and problems with some sensory issues. I may not be as sensitive as others on the spectrum, but I have my days where the smallest thing can distract me beyond reason and I get nothing done (batteries and spoons). Of course, this doesn't help my anxiety issues.

So I was really interested in B-Calm Sound when they were on the AWA Radio Show not too long ago. Okay, I'll admit it; I was skeptical. I've been in and out of anxiety therapy for a couple of years and for the most part, I've picked up a couple of breathing exercises, relaxation guides and alternating medications. I've also tried those nifty relaxation music tapes; I tended to turn them off since they were being the sensory aggravation. So you can understand I was initially skeptical about their AudioSedation tracks.

However, I was willing to give them a try. I browsed the site, looked over the sample clips, and asked about the "running shower" track that I heard about on the AWA show. I was interested in this particular track because I know from experience that I concentrate better while sitting in the bathroom with the shower going. However, it's not released yet, but lucky me, I get to review an advance copy. Woot!

So here goes:

My Review on B-Calm Sounds Running Shower as an Autistic and ADHD Adult

Since I'm taking courses, I decided to try the track out when working on my course work. So for a few days I listened while not taking my medication, and while I was taking my medication. Now, this is probably because of the difference between shower heads. I'm used to a stronger water flow, from both the shower and the faucet.
I'll also notice that during my initial testing period, I was going through a major mental block, so my concentration and attention, not to mention "functionality" was severely impaired, even on medication.

Description

The track is of a gentle, continuously running shower. When I put it on and started listing to it, I began to feel relaxed and more at ease. Actually, to be honest, when playing it at night, I started to feel sleepy.
I'll also note that the track acts as a filter more than a wall of sound. While the volume setting affects this, in general, I was able to listen to my parents, hear the dryer go off downstairs, and hear the doorbell while listening to the track. A slight side effect of it at this filter-type volume is that I would often think that it was raining outside.
Of course, that's if a person wants to use it that way. It's also very pleasant as a complete sound block.

Anxiety

So during my initial testing, which I gave feedback to B-Calm, I found that my anxiety was noticeably decreased, both with and without my medications. Now, it didn't completely eliminate the anxiety, but it did help me to relax, take a deep breath and keep things under control.

Concentration

I found that, other than relaxing me, the track did not do much for my concentration during my initial testing period. This may have been because of what I noted above, that I was going through a mental block. Also, as I continued to test out the track outside of the mental block, because of the type of work that I was doing while listening to it.

What I discovered was that as a concentration aid, the track had very little effects (both on and off medications) when I was doing work, such as writing assignments, articles, doing research and exercises. For that, it was useful for reducing and managing anxiety, but I saw no noticeable difference in my concentration.

However, I saw results when I started listening to the track when doing course readings and going through my lecture notes. It wasn't as strong as when I sit in the bathroom, listening to the tap in the bath running, but I could read and understand the materials easier. I saw a definite improvement to my concentration.

Conclusion

In conclusion, I would say that the track is very promising, as an anxiety reduction aid and selectively to help concentration, even by way of reducing stress. I think that there can be some improvements, such as a stronger "water flow" that would produce greater results, at least in myself, but as is, the track does act as a filter for stressing sounds and reducing anxiety. Personally, I am very pleased at the results that I have had with the track.



A note of caution for my readers, I would not recommend using this instead of medications or other treatments for anxiety. This is just a tool to help, not completely remove, and this is my opinion as an individual.

President Obama Announces More Key Administration Posts

THE WHITE HOUSE

Office of the Press Secretary


FOR IMMEDIATE RELEASE

December 16, 2009



President Obama Announces More Key Administration Posts



WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:



· Marie Collins Johns, Deputy Administrator, Small Business Administration

· Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation

· Jonathan M. Young, Chair, National Council on Disability

· Carol Jean Reynolds, Member, National Council on Disability

· Fernando Torres-Gil, Member, National Council on Disability

· Chester Alonzo Finn, Member, National Council on Disability

· Gary Blumenthal, Member, National Council on Disability

· Sara Gelser, Member, National Council on Disability

· Ari Ne'eman, Member, National Council on Disability

· Dongwoo Joseph "Joe" Pak, Member, National Council on Disability



President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”



President Obama announced today his intent to nominate the following individuals:


Ari Ne'eman, Nominee for Member, National Council on Disability

Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.



Dongwoo Joseph "Joe" Pak, Nominee for Member, National Council on Disability

Joe Pak is Vice President and Loan Officer of the Farmers & Merchants Bank of Long Beach, CA. Previously, Mr. Pak worked as the Director of External Affairs for SBC/Pacific Bell, representing the company to city officials and state legislators as well as to community and business leaders. He is currently a board member of Acacia Adult Day Health Care Services. Mr. Pak has served on the Special Needs Advisory Board for the Orange County Transit Authority and on the California State Rehabilitation Council, where he focused on increasing the low rate of employment among people with disabilities. He is also a former Board Member and Program Chair for the Korean Health Education, Information, and Research Center. Mr. Pak earned his Bachelor of Arts degree from the University of Southern California and a Master of Business Administration from the University of Phoenix. At three years of age, Mr. Pak’s left arm was paralyzed by the disease polio.


Marie Collins Johns, Nominee for Deputy Administrator, Small Business Administration

Marie Collins Johns is Founder and Managing Member of L&L Consulting, LLC , a firm that offers management services to public, private and social sector clients. Mrs. Johns retired as President of Verizon Washington, DC after a career of over 20 years in the telecommunications industry. In that capacity, she led the $700 million operation, serving nearly 1 million customers. In addition to her corporate experience, Mrs. Johns has also worked in management positions in the public and social services sectors. She has a long resume of volunteer leadership positions that spans nearly 30 years. Mrs. Johns founded the Washington DC Technology Council to foster the growth and development of technology companies in Washington, DC and she is a former chair of the DC Chamber of Commerce. Among her many civic leadership roles, she currently serves as a member of the Board of Directors of the Girl Scouts USA, a trustee of Howard University and Chair of the Board of the Howard University Middle School of Mathematics and Science. Mrs. Johns is a long time resident of the District of Columbia, and she holds BS and MPA degrees from the Indiana University School of Public and Environmental Affairs.



Gwendolyn E. Boyd, Nominee for Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation

Gwendolyn Elizabeth Boyd is an accomplished engineer currently serving as Executive Assistant to the Chief of Staff at the Johns Hopkins University’s Applied Physics Laboratory and Chair of the Johns Hopkins Institutions Diversity Leadership Council. In her career as an engineer, and in her dedicated community service, Ms. Boyd has been a prominent advocate for women's equality and for the recruitment of African Americans into science and engineering. For her contributions to the community, she has received numerous awards and honors including: the 1996 Black Engineer of the Year Public Service Award congressional citations and recognition by U.S. Black Engineer magazine as one of the Nation's "Most Distinguished Black College and University Graduates". Ms. Boyd is a graduate (summa cum laude) of Alabama State University with a B. S. degree in Mathematics and a double minor in Physics and Music. She has the distinction of being the first African American to earn a Master of Science degree in Mechanical Engineering from Yale University. Ms. Boyd has also earned a Master of Divinity with Honors from Howard University and received Honorary Doctorates from Bennett College for Women and Lincoln University.



Jonathan M. Young, Nominee for Chair, National Council on Disability

Jonathan M. Young is Senior Counsel at FoxKiser LLP, and co-founder and Vice Chair of the Committee on Disability Power & Pride. Before law school he served in the Executive Office of the President (1998-2001), where he led several disability policy initiatives, provided counsel on disability policy, delivered numerous keynote addresses on behalf of the White House, and founded Disability Mentoring Day. At the NRH Center for Health and Disability Research (1996-1998), he authored Equality of Opportunity, a 1997 NCD publication that became the foundation for his 2002 dissertation on the disability rights movement. Awards include the 1987 NRH Victory Award® and the 2000 USJC Ten Outstanding Young Americans Award. He received a J.D. from Yale Law School, a Ph.D. and M.A. in History from the University of North Carolina at Chapel Hill, and a B.A. from Messiah College. Mr. Young is partially paralyzed from a spinal cord injury.



Carol Jean Reynolds, Nominee for Member, National Council on Disability

Carol Jean Reynolds is the Executive Director of the Disability Center for Independent Living (DCIL) in Denver, Colorado. DCIL is a grassroots service and advocacy organization that assists over 700 consumers each year, providing four core services to individuals with both physical and mental disabilities: peer counseling, independent living skills training, advocacy, and referrals. Ms. Reynolds is a Member of the governing board of the National Council on Independent Living and serves as Co-Chairperson of its Mental Health Task Force. She was awarded Board Member and Consumer of the Year by the National Association of the Mentally Ill – Colorado. She is also a member of the Colorado State Rehabilitation Employment Council. Ms. Reynolds speaks publicly on mental health issues, including providing testimony to the Colorado State legislature in connection with legislation providing funding to uninsured individuals with mental health issues. Ms. Reynolds has struggled with and overcome several mental health and substance abuse issues and has been in recovery for 26 years.



Fernando Torres-Gil, Nominee for Member, National Council on Disability

Fernando Torres-Gil is Associate Dean of Academic Affairs at the UCLA School of Public Affairs. Previously he served as a Professor of Gerontology and Public Administration at the University of Southern California, where he is still an Adjunct Professor of Gerontology. Before serving in academia, Mr. Torres-Gil was the first Assistant Secretary for Aging in the United States Department of Health and Human Services and as the Staff Director of the House of Representatives Select Committee on Aging. Mr. Torres-Gil also served as President of the American Society on Aging from 1989 to 1992. He is currently a member of the San Francisco Bay Area Polio Survivors, the National Academy of Social Insurance and of the board of directors of Elderhostel, the National Committee to Preserve Social Security and Medicare, the AARP Foundation, the Los Angeles Airport Commission, and The California Endowment. Professor Torres-Gil is a polio survivor.



Chester Alonzo Finn, Nominee for Member, National Council on Disability

Chester Alonzo Finn is a Special Assistant with the New York State Office of Mental Retardation and Developmental Disabilities, providing services, supports, and advocacy to individuals with development disabilities and their families; in October of 2009 he was recently appointed to the OMRDD’s Leadership Team. He is also President of the national board of Self-Advocates Becoming Empowered, Board Advisor to the Self Advocacy Association of New York State (SANYS) and a member of the Justice for All Action Networking Streaming Committee. Mr. Finn is also an active member of the Board of Directors for the ARC of the United States, the world’s largest community based organization of and for people with intellectual and developmental disabilities. Mr. Finn is blind and is developmentally disabled and is committed to fighting for the civil rights of people with disabilities.



Gary Blumenthal, Nominee for Member, National Council on Disability

Gary Blumenthal is the Executive Director for the Association of Developmental Disabilities Providers (ADDP), which aims to promote and ensure the health of the community-based organizations that provide supports and services for individuals with developmental disabilities. He also served as the Executive Director for the Alta California Regional Center, which oversees service delivery for children and adults with developmental disabilities in the Sacramento region. Previously, Mr. Blumenthal was the Wichita Regional Director for the Kansas State Department of Social and Rehabilitation Services, CEO for the Florida State Protection and Advocacy Programs for People with Developmental Disabilities, and Director of the President’s Committee on Mental Retardation during the Clinton administration. Mr. Blumenthal was also a member of the Kansas State House of Representatives for 11 years. He was an American Government teacher in the Shawnee Mission Public Schools in Overland Park, Kansas for 12 years. Mr. Blumenthal a graduate of the University of Kansas, Lawrence and the University of Missouri, Kansas City.



Sara Gelser, Nominee for Member, National Council on Disability

Sara Gelser currently serves as State Representative for the citizens of Corvallis and Philomath in the Oregon State House of Representatives. The youngest woman in the Oregon State Legislature, she also serves as Assistant Majority Leader and chairs the House Education Committee. Previously Ms. Gelser served as the Children with Disabilities and Family Support Coordinator for the Oregon State Department of Human Services. Additionally, she served as a regional coordinator for the Oregon Parent Training and Information Center, where she provided training to parents, educators and administrators about the implementation of special education law. Ms. Gelser is the founder of the FG Syndrome Family Alliance, a non-profit organization serving families and medical professionals dealing with FG Syndrome, a rare developmental disability. Ms. Gelser’s teenaged son, Sam, has FG Syndrome.