Moblity Awareness Month

There is a contest to give away three [3] wheelchair accessible vans.

A nice lady at the YMCA asked me to vote or her grandson; he is the joy in her life.

Oscar is three years old and has SMA [Spinal Muscular Atrophy].

Here is some more information about Oscar:

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In March, just weeks ago, Oscar got his “go power chair,” a motorized wheelchair, which he is already driving with skill and precision. He can now fully explore our house and yard, play tag with the neighbors, zoom in and out of rooms and to or away from us; he is able, therefore, for the first time, to truly assert his independence. However, this over 200-pound chair won’t fit into our sedan. Oscar is stuck relying on others to push his stroller or manual wheelchair at preschool, at birthday parties, at parks and museums—wherever he goes. In order for Oscar to explore the world beyond his own backyard, he needs a van. At an average cost of $40,000, just $5,000 less than our annual income, purchasing a fully accessible van is nearly impossible for our family.

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Here is the link for the contest updates-- Oscar is trending in the top five percent.

Autism and Bullying

A new survey was discussed on NPR. This study identified how children on the Autism Spectrum may be victims of bullying. The ususal childhood meanness, but with unconsidered consequences...

Q: What happens to a child with limited social skills, when trying to be social results in abuse and ostracization?

A: ___________________ [fill in the blank.]

Therefore, the solutions revolve around education. There are no  easy answers but one needs to make sure schools are prepared to address the questions.

This Person Loves Someone with Autism

Add caption

A Spring Cleaning For My [Blog] House...And Why I Write

I have made a few changes to 'freshen up' the visual appearance of my blog. I have also puttered around Google and noted some of the new changes [mostly good] and have checked out the new dashboard [basement wiring/plumbing] and was pleasantly surprised at my readership.

Especially around the big news story yesterday on Autism and weight.

There is an old adage, "To those who much is given, much is expected."So, Researching Readers, I will make sure of all the new technology [Smart Phones, emails forwarding, etc.] to make sure I am posting more frequently, as pertinent news and information about Autism Spectrum Disorder populates our world.

My youngest, whom my college buddy correctly characterizes as 'leaning on the Asperberger fence" is doing well in an 11th grade charter school. We have 'compromised' on SAT special subjects prep by him playing  Free Rice  instead of reviewing the Kaplan book. [He gets to have a school break week filled with Wii.]

He is aware that he is differently able, and is learning to be both patient with those not as bright/witty and insightful as himself [Sheldon Cooper is a greater Anti-Role Model for the importance of social skills].

And he is what got he started on gleaning all sources for information, strategies, Old Wives Tales, etc. on Autism Spectrum Disorder. [I am glad it has evolved to be  spectrum-- not so sure how I feel about the disorder...]

So, we are [somewhat] patient with the DVD recording EVERY SINGLE EPISODE of The Big Bang Theory but I am also a little excited about Stephen Hawkins appearing on the episode tonight.

...and maybe Cal Tech or MIT may be entered in my GPS next year...or Unknown U., where my ASD son may get to have his own lab and research something I cannot spell or understand.

Here's to hoping!

Autism Linked to being Overweight

Yet another reason to lose weight...


Here is the article from US News and World Report...
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Children Born to Obese Moms May Face Higher Autism Risk: Study
Maternal obesity, overweight also linked to other developmental delays
April 9, 2012 RSS Feed Print
By Jenifer Goodwin
HealthDay Reporter

MONDAY, April 9 (HealthDay News) -- Children born to obese or very overweight mothers are at higher risk of having autism or developmental delays, new research suggests.

The study of more than 1,000 children found that the offspring of obese mothers had a 67 percent higher risk of autism than the children of normal-weight moms, and more than double the risk of having developmental delays, such as language impairment.

"The odds of autism and other developmental delays were significantly higher in the children of moms who were obese versus those who weren't," said lead study author Paula Krakowiak, a biostatistician and doctoral candidate at the University of California, Davis.

The research included more than 500 children aged 2 to 5 with mild to severe autism, about 170 children with another type of developmental disability, and 315 typically developing children, all taking part in the Childhood Autism Risks from Genetics and the Environment, conducted between 2003 and 2010.

Children were assessed by experts from the university's MIND Institute to confirm their autism diagnosis, while mothers were interviewed about various aspects of their health before and during pregnancy. Information about weight came from either medical records or mothers' recollections of their weight before and during pregnancy.

Obesity is defined as a body mass index of 30 and up. Body mass index, or BMI, is a measure of body size based on height and weight.

While diabetes was also associated with increased odds of developmental delays in offspring, there wasn't a statistically significant association between diabetes and autism.

The research is in the May issue of Pediatics, published online April 9.

Autism is a neurodevelopmental disorder in which children have difficulties with social interaction, verbal and nonverbal communication such as reading facial expressions and understanding other social cues, and restricted interests and behaviors.

About one in 88 U.S. children has a so-called autism spectrum disorder, which includes milder forms of the disorder, such as Asperger syndrome, according to updated figures from the U.S. Centers for Disease Control and Prevention. One in six U.S. children has a developmental delay, such as a speech or language impairment or other intellectual disabilities, the CDC says.

Considering that about one-third of the women of child-bearing age in the United States are obese and almost 9 percent have diabetes, the findings could have serious public-health implications, said Krakowiak.

Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at the Steven and Alexandra Cohen Children's Medical Center of New York, said the findings "should not be ignored." However, he noted that other genetic or environmental factors are likely contributing to autism. Many parents of autistic children are of normal weight, while many obese parents don't have autistic kids.

"Although the results of this study suggest obesity is a risk factor for developmental problems in offspring, one cannot assume that developmental problems in the offspring are due to obesity, and many other factors may be involved or responsible," Adesman said.

Indeed, other research published last week identified several spontaneous genetic mutations as the cause of a fraction of autism cases. Parents' ages, especially fathers older than 35, were also associated with autism in those recent studies, published online in the journal Nature.

The reasons for the link between obesity and autism/developmental delays are unknown, though some research suggests that obesity unleashes inflammatory proteins, some of which may be able to cross the placenta into the fetus. It's possible the inflammatory proteins, known as cytokines, may harm a fetus's developing brain, Krakowiak said.

She also noted that while the research found an association between obesity and autism/developmental delays, it did not prove that being obese causes autism or other brain problems in the fetus. The link may be indirect.

"It may not be the obesity itself, but other things that lead to obesity, such as genetics, or lifestyle, or diet," Krakowiak said.
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More information

The U.S. National Institute of Neurological Disorders and Stroke has more on autism.

More from MSN Health:

Mealtime with An Autistic Child
Symptoms of Autism
What Do We Know About Autism?
Bing: Find an Autism Support Group
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SOURCES: Paula Krakowiak, Ph.D. candidate, University of California, Davis; Andrew Adesman, M.D., chief, developmental and behavioral pediatrics, Steven and Alexandra Cohen Children's Medical Center of New York, New Hyde Park, N.Y.; May 2012 Pediatrics
Copyright @2011 HealthDay. All Rights Reserved.

U.S. Kids with Autism on The Rise

The number of children with autism in the United States continues to rise, according to a new report released Thursday by the Centers for Disease Control and Prevention. The latest data estimate that 1 in 88 American children has some form of autism spectrum disorder. That's a 78% increase compared to a decade ago, according to the report.

Mastering the 504 Plan

[This is an encore blog I posted several years back-- I wanted to make sure to review this annually.]

It is that time of year—parents start thinking about Spring Break activities, vacations and developing a new strategy for dealing with teachers, administrators and various other academic interveners, disguised as well meaning and caring purveyors of public school education for the next school year. That's right-- Special Education Meeting [Student Support, Team meeting, Committee on Special Education, Medical Needs Group-- it goes by a variety of names]--Season.

So here is my Five Step Survival Guide to special education advocacy:

1.Have a Building Based Plan. Many districts require special education services to go through a central office. If you can avoid this, by all means do. These people do not know you child, and only have his/her psychological testing, social work evaluations to go by. (Have you ever wondered how you would be described in an evaluation done by a perfect stranger asking you things you don’t tell you best friend?) While this snapshot may be clinically acceptable, it is only a snapshot—you child needs should be based on more than that. If you cannot avoid going through a central committee, still pursue an unofficial meeting with the building based team leader—it may be the speech, OT or PT. In the worst-case scenarios, someone is usually the carryover year to year, and is the de facto coordinator of special services.

2.Know your Legal Rights. Well meaning administrators and teachers tell parents so much bad, subjective and completely wrong information, its scary. Parents have been mandated to medicate children, allow aversive therapies (electro-shock), deny medication (insulin), etc. that is critical parents have a copy of the IDEA law, the 504 section of the ADA, and the mandatory guide to special education services, which is required (but seldom seen). Learn the appeals process, the grievance process, etc.

3.Know Your Legal Options. There are lots of treatments, therapies and services that are available outside of the school district. Some health departments’ offer home based services to children at the pre-school stage, or children with serious medical conditions. Many health insurance plans cover speech, OT, PT. There are also services through the Office of Mental Retardation and Developmental Disabilities for children with less severe issues (respite, summer camp, special play groups, equipment rental, etc.) If you have to try to wrangle services form the school district, there are disability advocates through centers for independent living (CIL’s), VESID and other local disability rights organizations; let you finger do the walking through the Yellow Pages.

4.Get a Second Opinion. You child’s kindergarten teacher may know finger paints and nursery rhymes, but that does not apply to disabilities. Most teachers are not required to take any classes about disabilities, or any cognitive impairment. Those fortunate enough to be at a school with a minor or electives have a limited selection, and little or no practicum. Always get a psychological evaluation outside of your child’s home school. This local person never can give a truly unbiased assessment, when they have the feedback of peers, teachers, and building neighbors.

5.Develop Your Own Plan. The Internet had leveled the playing field between parents and practioners. Anything you want to know about any issues, illness or disability is yours for the reading. Gather information, go the libraries and support groups, to bounce ideas around. Use parenting experience to document your child’s strengths, weaknesses, responses to stimuli, etc. This information should be distilled to a one page report to give to new teachers; share the long various with the building based special education/support services team.

Not everyone will value your level of preparation and knowing what you want, but one person will benefit—your child.

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There are also other resources available online: Terry Mauro has some good sources, with links to other state standards.

Other conditions are now protected under the ADA and 504 Plans, including juvenile arthritis, diabetes, learning disabilities and other medical conditions that impact the learning process.

Asperbergers on This American Life

Yesterday I heard an interesting story on NPR. [You have to get past the first story aobout a guy who imitates President Obama for a living.] The second story is about a guy who finds out he has Asperberger's by a quirk of fate-- his wife takes a free test online -- and how it makes his life better.

You be the judge...

Music Therapy on NPR- research and autism

I am a fan of Science Friday, with Ira Flato.

The December 16, 2011 topic was Music Therapy. There was a nice constellation of MD, Music Therapists, and a parent of a child with autism called in.

Some good information about an international research project that is measuring the efficacy of music therapy for a variety of conditions, including autism.

Disability Awareness Day at Fenway Park

Autistic Man has Trouble with the National Anthem - But Then Something Amazing Happens

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Saw this posted on Facebook and had to share.

here is the comment that went with it....
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When this autistic man started having trouble singing the national anthem, something happened that could bring you to tears. What an amazing display of humanity. It's great to see that there is still goodness in the world.
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Everyone deserves their moment, and the support for the good intention and doing a job, no matter how difficult!

Fastest Man on No Legs

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Oscar Pastorius is back-- and determined to be qualify for the Olympics. i think the world needs to be open to this and other opportunities for the differently able to compete.

Don't feel sorry for 'tink, tink'-- strive to emulate his determination and cheer him on!
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Bladerunner: Oscar at the 2004 Athens Paralympics
Oscar Pistorius smiles whenever he is introduced as "the fastest man on no legs" even though some might be offended by the somewhat politically incorrect sobriquet.
For Pistorius, a talented sprinter who had both his legs amputated when he was a baby, it is just an indication of how far he has come ? and how much more he could achieve.
In a groundbreaking race next weekend in Sheffield, 20-year-old Pistorius will take on the current Olympic champion.
Not as some freak show or demonstration race ? but because for the first time in history, a disabled runner has earned his place among the world's elite on merit.
"Already a Paralympic champion and world-record holder in amputee races over 100m, 200m and 400m, Pistorius is now achieving something revolutionary.
With aid of high-tech carbon-fibre legs, he is almost as fast as the best able-bodied runners in the world.
While he could well set yet another world record for amputee athletes next week, that is no longer his goal.
Nothing short of qualifying for the Beijing Olympics next year will satisfy him.
But his case could divide the sport. While many see him as a groundbreaking hero, redefining the very concept of athletic achievement, others claim his artificial legs amount to cheating.
Pistorius himself can't see what all the fuss is about because he considers himself as just another athlete.
"I'm not disabled," he says breezily. "I just don't have any legs."
If this sounds like a story straight out of Hollywood, it will come as no surprise to learn that Tom Hanks is bidding to make a film about Pistorius, nicknamed the Bladerunner because of the carbon-fibre blades he attaches just below the knee.
Made by a specialist firm in Iceland and known as 'Cheetahs', they cost £15,000 a pair and are the Ferraris of artificial legs.


Read more: http://www.dailymail.co.uk/news/article-466904/The-fastest-man-legs-Olympics-sights.html#ixzz1WvVPyw29

Autism and Humanity

There was a good story this morning on NPR's program On Being. It was about autism, and how and what my friend from Ohio calls those not on the Autism Spectrum but "Leaning heavily on the fence"


Pertinent Posts from the Being Blog» Asperger's, Autism, and Parenting

StoryCorps's animated short of a mother and her son with Asperger's syndrome reminds us of the lessons Paul Collins shared about raising his autistic son.

» Outhumaning the Humans An autistic man illustrates the limitless possibilities of the human mind.

» Hitchcock's Rope, Music for Our Autism Program Hitchcock's cinema classic serves as inspiration for this show's musical selections.

Recommended Video» Television Logo Histories
For their son Morgan and other people with autism, YouTube has fostered a community catering to his interest in television logo histories. So we asked him for links to some of his favorite videos. Here's some of his favorites of PBS and Paramount.

Selected Writings on Autism»

"Five Weeks" by Stephen Jay Gould
The famous scientist recounts a personal story about his autistic son and the charming simplicity of calculating dates.

» "Parallel Play" by Tim Page
The music critic for the Washington Post reflects on living with Asperger's syndrome.

» "The Vanishing Boy" by Paul Collins
Making the difficult decision to put his son on anti-depressants, our guest tells his story and calls it one of the most important things he's ever written.

NYS Groundbreaking Consumer Directed Program Under Attack

The Center for Disability Rights is under attack - Tell Monroe County Executive Maggie Brooks to Restore the CDPAS Contract by phone and in person!


The Center for Disability Rights is under attack by the Monroe County
Executive, Maggie Brooks. Without warning, on July 22nd, CDR received a
terse, 5 sentence letter informing us of the contract termination with
no explanation included. All of our CDPAS consumers received a letter
the same day telling them that the county is terminating its contract
with CDR and that they have until just August 1st to choose from one of
five for-profit agencies for their Consumer Directed Personal
Assistance.


The next day, CDR received from a friend in the local media, a copy of a
three page letter from the County Executive to the media. The letter
was filled with blatant falsehoods mixed with misunderstandings of the
roles of CDR and the county in the CDPAS program. Here is CDR's letter
to Maggie Brooks debunking her allegations against CDR:

Videos of
consumers refuting the county's charges show the reality of people with disabilities having their personal control and independence taken away.

Share these; make them go viral as meanwhile, Brooks continues to use
the media as a buffer to not have to talk with us. Many more documents
available on CDR's website.

Our consumers and their attendants have been thrown into chaos and Ms.
Brooks refuses to talk to them. Nearly 300 consumers are in danger of
losing their attendants and possibly their services outright.

Currently consumers, supporters and staff have camped out in front of
the County Building on Main Street in Rochester. We have been out there
24/7 since Monday and will continue until this is over.

Medical Marijuana for the Treatment of Autism

I heard this on a morning radio program-- you decide if this is valid or someone looking for fifteen minutes of fame. Used to address aggression, rage, anorexia symptoms or lack of appetite, some identify medical marijuana as a wrench in toolkit of treatments to address the range of behaviors/issues in the autism spectrum.

French Woman with CP to be webcam internet site

The parents of Anne Lamic, 32 years old, will be the subject of a cotinuous webcam broadcast in Franch. Her parents feel this is a good opportunity to have people with disabiltieis become more public in France and European society. Seh cannot walk, or talk and have the mental abiltiies comparable to a one month old infant...


What do you think?

Psalm 23- revisited

The Lord is my Shepherd = That’s Relationship!

He maketh me to lie down in green pastures = That’s Rest!

He leadeth me beside still waters = That’s Refreshment!

He restoreth my soul = That’s Healing!

He leadth me in the paths of righteousness = That’s Guidance!

For His name sake = That’s Purpose

Yea, though I walk through the valley of the shadow of death = That’s Testing!

I will fear no evil = That’s Protection!

For Thou art with me = That’s Faithfulness!

Thy rod and staff they comfort me = That’s Discipline!

Thou preparest a table before me in the presence of mine enemies = That’s Hope!

Thou annointest my head with oil = That’s Consecration!

My cup runneth over = That’s Abundance!

Surely goodness and mercy shall follow me all the days of my life = That’s Blessings!

And I will dwell in the house of the Lord = That’s Security!

Forever = That’s Eternity!

The Amazing Race

In case people are not followers of reality shows, I wanted to point out that there is a gentleman [on the left] with Asperger's Syndrome who is participating in the fall 2009 season of The Amazing Race 15.

Gender, Calcium and Autism

There was some new research released today, looking at a correlation between calcium excesses and autism in boys. A summary of this research is available on Autism Speaks website. But this 'new' information is not all that new, as this link shows research from 2007. The American research announced today has delved a bit deeper, looking at calcium, gender correlations and heridity.

Teaching Kids With Autism The Art Of Conversation

An interesting interview on social conversation training for children with autism on NPR...

Annual Disability Status Reports

Cornell University has posted the Annual Disability Status Reports, which summarize the most recent demographic and economic statistics on the non-institutionalized population with disabilities.

Disability Status Reports and other statistics are available for each state, at www.DisabilityStatistics.org

Easter Seals' Living with Autism Study

Autism is one of the most pervasive and perplexing developmental disabilities of our time. Some estimates place the number of people diagnosed with Autism Spectrum Disorders at one in every 150 children. Easter Seals is thrilled to unveil its groundbreaking Living with Autism Study, gathering families living with autism, government leaders, autism organizations and advocates, professional colleagues, volunteers and corporate partners.

By joining us — live — on December 16th, from 9:30-10:30 AM EST, via the technology offered by EP LiveOnLine, you will be among the first to hear the national findings and take away new insights into the ongoing challenges facing individuals and families living with autism, particularly their concerns about the future. Attendance is free of charge thanks to a grant from MassMutual Financial Group.

No other special technology is needed and you will be able to see and hear the information provided in real time just as if you were present at the National Press Club event! EP LiveOnLine will maintain the full content of the presentation on epliveonline.com and will link from the websites of Easter Seals, EP Global Communications, Inc., Vemics-iMedicor for 90 days following the event.

Register to attend this event on EP LiveOnLine now. December 16, 2008
9:30-10:30 AM EST

This event is open to civilian as well as military families. The Easter Seals Living with Autism Study results will be used to raise awareness of, and advocate for the life long services people living with autism and their families desperately need.

National Center for Parents with Disabilities & their Families

BERKELEY, CA -- October 21, 2008. A new National Center for Parents with
Disabilities and their Families has been established in Berkeley, California
under the auspices of Through the Looking Glass, a non-profit organization
founded in 1982. The Center will oversee several national research studies
concerning parents with disabilities and their families, as well as provide
consultations, trainings and publications to parents, family members and
professionals.

The research and resources of the Center will address the nearly 9 million
U.S. parents with disabilities - 15% of all American families. Parents with
disabilities include mothers and fathers in all disability categories - such
as parents with physical disabilities, deaf parents, blind parents, parents
with psychiatric or cognitive disabilities. The Center is funded by a
$500,000 per year federal grant for three years from the Washington,
DC-based National Institute on Disability and Rehabilitation Research
(NIDRR), U.S. Department of Education.

The new Center will focus its research and resource activities on four
critical areas that impact parents with disabilities: custody, family roles
and personal assistance; paratransit; and, intervention with parents with
cognitive disabilities and their children. One of the notable activities
planned over the next three years is a scholarship program for high school
seniors and college students whose parents have disabilities. The Center
will be staffed by nationally recognized experts regarding parents with
disabilities, most of whom have personal or family experience with
disability or deafness.

More information about the Center and Through the Looking Glass is available
at the organization's website (www.lookingglass.org), through two toll-free
numbers, 800-644-2666 (voice), 800-804-1616 (TDD/TTY), or by email at
tlg@lookingglass.org

ABOUT THE ORGANIZATION. This new National Center will build upon Through
the Looking Glass's nationally and internationally recognized expertise and
leadership in working with parents with disabilities, their families, and
their providers -- 26 years of groundbreaking research, services, training
and resource development. Through the Looking Glass (TLG) has trained more
than 70,000 professionals regarding parents with disabilities and deaf
parents, from all U.S. states and 44 countries. Since 1993 it has provided
technical assistance to over 25,000 parents with disabilities, family
members and professionals. TLG's expertise has contributed to the passage
of legislation in three states to decrease discrimination against parents
with disabilities. TLG is one of seven disability organizations that have
partnered to build the Ed Roberts Campus at the Ashby BART Station in
Berkeley - a national and international model dedicated to disability rights
and universal access(see www.edrobertscampus.org for more details). Opening
in 2010, the campus will house the offices of the collaborating
organizations as well as Through the Looking Glass' new early child
development center.

Contact: Dr. Paul Preston
510-848-1112, x104
Email: ppreston@lookingglass.org

Through the Looking Glass
2198 Sixth Street, Suite 100
Berkeley, CA 94710
(800) 644-2666 (voice)
(800) 804-1616 (TDD/TTY)
FAX: (510) 848-4445
tlg@lookingglass.org
www.lookingglass.org

Tomorrow marks a historical day, and potentially the pinnacle of George W. Bush's legacy-- the signing of the Americans with Disabilities Act amendment. These changes will bring more disabilities into the protected class, and strengthen the laws that are currently on the books. Another ADA (American Diabetes Assocation) has worked hard on advocacy for this legislation, as well as other organizations.

This is a moment of victory and celebration. While all is not equal and the playing field is still not level, by any stretch of the imagination, minority groups always find their incresed membership in the franchaise of democracy is always accessed (and ensured) through legislation.

Autism & Fragile X

An interesting story on NPR about Fragile X and some tangential research.

The CCA Words

ADAPT has created a new song to try to rally awareness and (hopefully) buy-in from the McCain camp for the Community Choices Act. (This proposed legislation would provide community based home health care for people with disabilities as the first go-to option. The first option in most communities is nursing home placement-- once you go in, you rarely get well or come out...)

WHY CCA

WE'RE GONNA TELL YOU WHY

YCCA

IT'S NOT EVERYTHING FOR EVERYONE TO ENJOY

BUT IT STILL WILL FREE A LOT OF GIRLS AND BOYS

YCCA

LISTEN UP McCAIN

YCCA

FISCAL CONSERVATIVES WILL SAVE SOME DOUGH

THEN OUR PEOPLE MAY LET YOU GO


THAT'S WHY YOU NEED TO PASS THE C-C-A

IT'S WHAT'S YOU GOTTA DO


C-C-A

ONE MORE CHANCE, TO DO WHAT'S RIGHT

THEN GO HOME AND SLEEP GOOD TONITE


CCA

LISTEN UP McCAIN



PASS THE COMMUNITY CHOICE ACT NOW!







(LYRICS BY LINDA ANTHONY)