Tuesday, April 8, 2014

Disney Parks Refutes Lawsuit Claiming Discrimination Against Autistic Kids

By DOMINIC PATTEN | Tuesday April 8, 2014 @ 1:22pm PDTTags: Americans With Disabilities ActDisney
http://www.deadline.com/2014/04/disney-parks-lawsuit-autism/


Walt Disney Parks and Resorts today denied allegations in a lawsuit filed by families of children with developmental disorders that the company has caused them suffering and violated the American With Disabilities Act. The 57-count complaint (read it here), filed last week, seeks damages, injunctive relief, and declaratory relief forviolations of the ADA and the Unruh Civil Rights Act. ”Disney Parks have an unwavering commitment to providing an inclusive and accessible environment for all our guests,” a Disney Parks and Resorts spokesperson said today. “We fully comply with all ADA requirements and believe that the legal claims are without merit.” The scathing legal action filed by 16 children and young adults with autism and other developmental disorders and their guardians and parents contends that Disney’s recently implemented Disability Access Service violates federal and state law and is completely unsuited to the needs of individuals with such special needs. Disney disagrees. “Our Disability Access Service is designed for guests who, due to certain disabilities, cannot tolerate extended wait times at attractions. In circumstances where the service might not meet guests needs, we work individually with guests to ensure we are able to accommodate them,” said the company in a statement.


The 176-page complaint also alleges that, at the same time Disney moved to the DAS system last October, the Parks and Resorts division created a secret ”Magic List” program that could actually help solve a lot of their concerns. “The Magic List is a secret list of persons to whom Disney will automatically extend, without the stigma of a ‘Disability’ card, and without amandatory photograph, and without the newly-ingrained disrespect of Disney employees, five immediate-entry, no-appointment ride passes,” says the April 3 filing in federal court. “The Magic List does not perfectly accommodate the special needs of all persons with cognitive impairments, but it is considerably better than the recklessly inadequate DAS card,” it adds. “Disney is withholding the existence of the ‘Magic List’ from the broader community of families in which someone has a cognitive impairment. By doing so, Disney continues to deter families from visiting the Parks or making plans to do so.” While Disney has a Make-A-Wish Foundation program that provides front-of-the-line access among other privileges, the “Magic List” the plaintiffs allege seems to be something very different. A WDPR spokesperson denied to Deadline any knowledge of the so-called Magic List

Monday, April 7, 2014

Legendary Wayne Henderson My Friend and a Friend to our Kids Died this Weekend

This weekend I lost a dear friend Mr. Wayne Henderson.  He was not only my friend but a man who cared deeply about family and children. He was excited when my daughter was learning how to play Bass Clarinet, and he encouraged her. When my non-profit Special Needs Network threw it's first big fundraiser he was one of my friends I called on make the entertainment special, he didn't hesitate to say yes and he showed up and gave everyone an amazing show.  Every time we spoke he would say "How are the babies? How's Mom?".  I can't believe I won't hear him ask me that again. 

Wayne Henderson, Jazz Crusaders Co-Founder, Dies

http://www.npr.org/blogs/ablogsupreme/2014/04/07/300294194/wayne-henderson-jazz-crusaders-co-founder-dies

Wednesday, April 2, 2014

News Alert: There may soon be a way to genetically test children for ASD.

I read this right after scheduling a new round of genetic testing for Nick. Nick recently got a new doctor. When she reviewed his old medical files, she said “Interesting he has gene number, blah…that shows up in children with autism, he’s got one of the autism genes.”  I just looked at her. No one had ever mentioned this to me! Nick had genetic testing done he was 3 and they were only looking at Fragile X, it was there but at the time no one knew what it meant. It was just a gene they noted. So, yes we know more and yes Nick is going to do another round of genetic tests. Yet the question that remains for me, the most important question is what will change? What difference will it make for him? Is this just more information building a path to nowhere, or somewhere for the benefit of children in many years to come?  Don’t know, but its progress.  Wish it was faster. For all the progress, the new science I just wish I could know that something might happen to preserve the wonders of Nick as a person with autism, and reduce the challenges that make so much of life unavailable to him. 

News Alert: There may soon be a way to genetically test children for ASD. 
  
So far, there have been "unprecedented advances" in the genetic study of ASD. Perhaps the most significant breakthrough of the past half-decade has been establishing the genetic basis of ASD in the first place, writes author James Gusella, Ph.D.

So far, researchers have identified hundreds of genes associated with varying degrees of ASD risk. Those genes also appear to be related to other neurodevelopmental disorders and psychiatric problems, writes Gusella. The hope is that these breakthroughs will open the door to research on the interplay between environmental factors and genes.
Currently, there is no standard blood/genetic test for diagnosing ASD. Instead, professionals evaluate a child's behavior for signs which include failing to make eye contact with others, repetitive play, sensitivity to everyday noises and a lag in motor skills.
Additional links if you want to learn more....


  • Autism News -- ScienceDaily

    www.sciencedaily.com/news/mind_brain/autism/

    Science Daily
    Read current research on autism including early diagnosis of autism spectrum ... 21,2014 — The same gene family that may have helped the human brain ...
    You've visited this page many times. Last visit: 2/23/14
  • Missing Genes More Likely in Those With Autism | Psych Central News

    psychcentral.com › News › Technology News

    Oct 5, 2013 - Researchers have discovered that people diagnosed with autism spectrum ... “This gives us the power, for the first time, to run one test from a blood ... 2014, from http://psychcentral.com/news/2013/10/06/missing-genes-more- ...
  • Researchers discover a potential cause of autism - Newsroom

    news.unchealthcare.org › News › 2013 › August

    UNC Health Care
    Topoisomerase inhibitors reduce the expression of long genes in neurons, including a remarkable ... Wednesday, August 28, 2013 ... and potentially lead to autism spectrum disorder (ASD), according to research published today in the journal Nature. ... 2014University of North Carolina at Chapel Hill School of Medicine.
  • Autism News from Medical News Today | Page 1

    www.medicalnewstoday.com/categories/autism

    Medical News Today
    24 Mar 2014. Language development aided ... New APA autism guidelines 'reducediagnosis by more than 30%'. 26 Feb 2014 ... New research underscores the geneticcomplexity in schizophrenia. 24 Jan 2014 ... 5 Dec 2013. Brain circuitry ...
  • New genetic test may improve autism diagnosis | FOX13Now.com

    fox13now.com/2013/.../new-genetic-test-may...

    KSTU
    SALT LAKE CITY -- A new genetic test may lead to a more accurate diagnosis for individuals with autism spectrum disorder by looking ... Posted on: 4:35 pm, February 24, 2013, by Mark Green ... Viewer Photos: March 2014 · shaming-400x225 ...
  • Network News: Gene Discoveries for Autism | NIH Director's Blog

    directorsblog.nih.gov/2013/.../network-news...

    National Institutes of Health
    Affecting an estimated 1 in 88 U.S. children, autism spectrum disorder (ASD) is a ... Posted on December 3, 2013 by Dr. Francis Collins .... did the chrome X Testing and other things but rule out any genetic cause….any info would be appreciated ... 2014;DNA Analysis Finds New Target for Diabetes Drugs March 11, 2014 ...
  • DNA Shows Washed Up Remains Match Autistic Teen Avonte ...

    newyork.cbslocal.com/2014/.../dna-shows-washed-up-remain...

    WCBS‑TV
    Jan 21, 2014 - Avonte Oquendo had been missing since Oct. 4, 2013. ... 21, 2014 that remains found along the East River are a DNA match. ... But, he added, Avonte's mother was awaiting DNA test results before jumping to conclusions.
  • HealthDay - Genetic Disorder News

    consumer.healthday.com/...and.../genetic-disorder-news-332/

    HealthDay
    Gene Study Offers Clues to Why Autism Strikes More Males ... to prevent genetic diseases in children, the procedure raises ethical issues. 2/19/2014 ... Genetic test for deadly condition spotted healthy embryos for implantation, ... 12/30/2013 ...
  • Disentangling the heterogeneity of autism spectrum disorder ...

    www.nature.com/nrneurol/journal/v10/.../nrneurol.2013.278.html

    Nature
    by SS Jeste - ‎2014 - ‎Related articles
    Jan 28, 2014 - Published online: 28 January 2014 ... Autism spectrum disorder (ASD) represents a heterogeneous group of disorders ... We also present current clinical guidelines for genetic testing in ASD and ..... The AAN has not updated these guidelines, but in 2008 and 2013 the American College of Medical Genetics ...
  • Monday, March 31, 2014

    Would Our Kids Have More Friends If They Were Better Dancers?

    I wonder if anything would be different if Nick had moves like Jagger! Would he be cooler at school?  Would cool moves get him asked to the Prom? I'm just saying :). 

    Scientists Discovered What Makes Someone A Good Dancer

    Friday, March 28, 2014

    Autism Rates Soar by 30%!. New CDC Report Confirms 1 in 68

    All I can say, is what I keep saying “Be Afraid, be very afraid”.   If you don’t know why, here’s why:   As a country we are looking at a multi trillion dollar price tag for the care, housing and education of this growing population of extraordinary people and we‘ve  yet  to develop and implement sufficient local solutions, much less national ones.  What has to happen for our country to wake up and fund and develop sustainable programs that will work? 

    CDC estimates 1 in 68 children has been identified with autism spectrum 

     Latest snapshot shows proportion of children with autism and higher IQ on the rise

    The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD).  This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder.    The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey. 

    http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

    The surveillance summary report, “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” was published today in the CDC’s Morbidity and Mortality Weekly Report.  Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed.
    The data continue to show that ASD is almost five times more common among boys than girls:  1 in 42 boys versus 1 in 189 girls. White children are more likely to be identified as having ASD than are black or Hispanic children.
    Levels of intellectual ability vary greatly among children with autism, ranging from severe intellectual challenges to average or above average intellectual ability.  The study found that almost half of children identified with ASD have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.
    “Community leaders, health professionals, educators and childcare providers should use these data to ensure children with ASD are identified as early as possible and connected to the services they need,” said Coleen Boyle, Ph.D., M.S. hyg., director of CDC’s National Center on Birth Defects and Developmental Disabilities.
    The report also shows most children with ASD are diagnosed after age 4, even though ASD can be diagnosed as early as age 2. Healthy People 2020, the nation’s 10-year health objectives, strives to increase the proportion of young children with an autism spectrum disorder (ASD) and other developmental delays who are screened, evaluated, and enrolled in early intervention services in a timely manner.
    “The most important thing for parents to do is to act early when there is a concern about a child’s development,” said Marshalyn Yeargin-Allsopp, M.D., chief of CDC’s Developmental Disabilities Branch. “If you have a concern about how your child plays, learns, speaks, acts, or moves, take action. Don’t wait.”
    If you suspect that your child may have ASD:
    ·         Talk to your child’s doctor about your concerns.
    ·         At the same time, call your local early intervention program or school system for a free evaluation.
    ·         It’s never too late to get help for your child.
    CDC’s “Learn the Signs. Act Early.” program has joined with others across the federal government to promote developmental and behavioral screening through the Birth to 5: Watch Me Thrive campaign, which will be launched today. The program will help families look for and celebrate milestones; promote universal screenings; identify delays as early as possible; and improve the support available to help children succeed in school and thrive alongside their peers.
    “More needs to be done to identify children with autism sooner,” said Boyle. “Early identification is the most powerful tool we have right now to make a difference in the lives of children with autism.”
    Through the Affordable Care Act, more Americans will have access to health coverage and to no-cost preventive services, including autism screening for children at 18 and 24 months. Most health insurance plans are no longer allowed to deny, limit, or exclude coverage to anyone based on a pre-existing conditionExternal Web Site Icon, including persons with autism spectrum disorder.  Visit Healthcare.gov or call 1-800-318-2596 (TTY/TDD 1-855-889-4325) to learn more. Open enrollment in the Marketplace began October 1 and ends March 31, 2014.
    For additional information on:
    ·         Autism and Developmental Disabilities Monitoring (ADDM) Network and this report, visitwww.cdc.gov/autism.
    ·         CDC’s autism research, visit www.cdc.gov/SEED  
    ·         Developmental milestone checklists and other resources to help families track their child’s development, visit www.cdc.gov/milestones.
    ·         What to do if you are concerned about your child’s development, visitwww.cdc.gov/Concerned.
    ·         State’s early intervention contact information, visitwww.cdc.gov/ncbddd/actearly/parents/states.html.
    ·         Birth to 5: Watch Me Thrive, is part of a coordinated federal effort to encourage developmental and behavioral screening and support for children, families, and the providers who care for them. Watch for updates at www.hhs.govExternal Web Site Icon/watchmethrive (expected to be announced later today). 

    ###

    California & Self Determination a Community Divided


    Self Determination is moving forward and people are divided. Last year we posted - News Alert: California & Self Determination...Who Should Choose? RC's or You?    http://autismdaybyday.blogspot.com/2013/05/news-alert-california-self.html



    This week a passionate, unidentified reader posted this response. 

    Oh my gash. DO NOT be tricked by this scam! California Regional Centers are going upside down because of their own inside corruption, so the state's answer to this is to shift the burden of finding supports and services onto already burned out and stressed out parents of disabled people. Do not be tricked into a self determination nightmare. Make these regional centers do their dang job. It is their duty to secure services for families of developmentally disabled children. It should not be the parent's burden, unless the parents have a very high functioning developmentally disabled child. Parents of children who are severely disabled and need a daily, intensive support system will not benefit from self determination because it's Regional Center's trick to shift all the responsibility to provide all these complex supports onto the family, so they don't have to. Parents BEWARE...The Lanterman Act. Disability Rights. Protection and Advocacy should know better. They should know by now how these Regional Centers aren't doing their jobs with the most severely disabled who need the most complex services. These Regional Centers are only set up to serve the easiest cases. They have few people working in these regional centers who have any real experience in the more complex needs of the severely disabled regional center clients. If your child has a mild disorder or needs a few respite hours, great, go for it, but if your child is very severe and requires intensive services, BEWARE, don't get sucked into this scam, so that your family is saddled with the responsibility to find supports and services that all these Regional Centers are paying their employees to do. Why even have 21 Regional Centers if they are slowly passing the job duties onto the families??????


    What do you think? Are you ready for SD? Is it the best solution for your family? Should Regional Centers shift their role?

    Wednesday, March 26, 2014

    Anonymous - I feel I will be lost in this sadness forever. What gives you strength? Do you still cry in bed about his future?

    Dear Anonymous...I Hope You See This 

    I got a post from Anonymous, and it said; " I have looked over your site alot in the past, but just watched my first videos. My son is 6 with ASD and you are inspiring me to stay focused. I could see alot of my son in Nicky. It makes me both sad and happy. I have cried almost every day for five years. 


    People say I am a an amazing mother and advocate for my child. I do everything I am supposed to. I feel that no one will ever truly understand and it isolates me. 

    Then Anonymous asked "What gives you strength? Do you still cry in bed about his future? I feel I will be lost in this sadness forever...and of course I do not want to be...for myself or for my children."


    Dear Anonymous, 

    The simple fact that you wrote this and people are taking the time to tell you  that you're amazing mother is no mistake, it's a definite sign that you are strong, because we all know that being a great mom, any mom, much less a mom with a special needs kiddo takes strength!  You are filled with strength - which is why you are able to put one foot in front of the other, everyday, even when you feel discouraged. And perhaps no one around you at this time understands, but I promise you that as time goes on, you will have more people in your life who understand.

    As a single mom who is now a shocking 13 years into this journey, I have been there. I remember the days when all I did was cry. For me it wasn't when my son was diagnosed. I spend the first 6 years existing in a auto pilot state dialed to "Warrior" mode. It wasn't until he was 8 and I suddenly became a single mom, emotionally and physically exhausted that I grieved my marriage and my " loss expectations" for my son. This was the time for me when it was all to much, I could't imagine any future, all I felt was loss and all  I did was cry. I cried when I woke up, I cried when I drove the kids to school, I cried when people said "hello",I had to stop listening to music because I couldn't hear anything sad. I just cried all the time. This period lasted at least a year, but it did end. I can't say it get's easier, but I can say we get better at it, which makes it not as hard.  

    What gives me strength? 
    Who knows for sure, but my first guess is, above all I love being Evyn and Nicks mom and I know I have to be okay. I know I have to be strong to take care of them, it's not a choice for me, I'm the only one. I just kept pushing forward often only by the tiniest baby steps. 
    I can't afford to waste my time on things that don't contribute to our better good. So, when I start to feel bad, and it's just sadness spinning in my brain taking me lower and lower, I set a timer to let myself have the feeling, and to remind me to stop. You might laugh at me but this is what I do....I envision my brain as a TV and I have the remote in my hand and I say to myself  "Would I want to watch this channel?", and if the answer is "No" I change it!


    Do you still cry in bed about his future? 
    Not as much because the gift of time has been that I'm not as scared anymore because I accept that Nick has autism and I know what that means to us. Acceptance vs the early live of "unknowns" stopped a lot of the tears. Still sometimes, when I'm exhausted, or feel like I haven't done enough or been enough, or hardest of all when I start thinking about all the bad things that happen to someone so vulnerable and my inability to protect him forever I cry.  Then I circle right back to where I get my strength, the little voice say's "Snap out of it. Take a step, do what can you do? and I'm off doing that thing - and there is no time for tears.  


    You will not be in this sadness forever, you're already too strong. You already know you can convert all of your energy into love, not sadness and action not weakness and in doing you'll move away from the isolation and the darkness.  

    This picture is you!