Important Webinar on Advocacy and Self-Advocacy Now Available

The Christopher and Dana Reeve Foundation have made their recent webinar, “Parenting with a Disability: Know your Rights and Take Action” available on YouTube, and it contains important information on what parents of a child with special needs need to know to advocate and self-advocate.

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Celebrating the Power of Assistive Technology

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It’s time to revisit a fine 2014 blog post from Edutopia on what assistive technology can do for students with learning disabilities, offering them access to the wonders and benefits of education.  This blog post is also notable for links to other informative and inspiring videos, well worth watching.

So, here it is:

5-Minute Film Festival: The Power of Assistive Technology

 

Our Most Notable and Favorite Disability Articles for the Week Ending May 20, 2016

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support.  As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Google+, LinkedIn, and Pinterest.  In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them.  Please click on the titles with embedded links to find the full article.

Saint Hubert's Cat

One of the cats at Saint Hubert’s Giralda poses for the camera. Saint Hubert’s is a leading pet adoption and animal advocacy organization, with headquarters in Madison, New Jersey. Photo: Daniel L. Berek

 

 

Disability in the news (mostly in New Jersey, the population we serve)
A New Jersey attorney shares his experience using Access Link, the van system for people with disabilities and how he thinks it could be fixed.

Researchers, advocates and others from the autism community came together for the 2016 International Meeting for Autism Research in Baltimore.

Prince William, his wife Kate, and brother Harry urged Britons on Monday to abandon their biases about mental health.  This is the biggest joint project the three young royals have taken on.

 

 

Civil Rights
The disproportionate representation in special-education programs of culturally and linguistically diverse students
is a critical issue that has plagued the education field for decades, especially regarding disciplinary issues.

The US Government is examining ways to make important information accessible to people with disabilities.

In a survey, people with a disability rank the issues that matter the most in the forthcoming election and beyond.

 

 

Inspirational and Informative (or Both!):
A boy with autism uses his prodigious memory and caring to overcome social isolation, building caring friendships throughout his school.

The classmates of a boy with Down syndrome petitioned their school board, advocating he be allowed to be promoted to their middle school with them.

A “nonverbal” autistic teen, it turns out, has a great deal to say.

French Academy students have big hearts, building a playhouse for a classmate with a disability.

 

 

Advocacy and self-advocacy:
Students speak up and advocate for a classmate and friend with Down syndrome
.

Lucille Msall, a long-time Chicago advocate for children with Down syndrome, passes away.

A voice for all: Why I’m fighting to help Autistic students access the form of communication that works best for them. A blog essay from the Autistic Self Advocacy Network

Individuals with dyslexia, advocates, and medical experts testify at a Senate Health, Education, Labor and Pensions Committee hearing on dyslexia research and awareness in the US.

 

 

Assistive technology:
Despite physical or mental disabilities, with assistive technology nobody has a learning-disability at the A. Harry Moore School in New Jersey.

An Indiana inventor hopes his tray mount will help bridge gaps in education tech and eliminate some of the stigma associated with coming to class.

 

 

People with a disability in the community (disability rights and acceptance):
For many people with autism, sports can offer a good outlet for social communication.

A major television network is set to air a comedy about a family with a child who has special needs.

Skeptics of the benefits of living in the community often have a change of heart when they see the benefits.

 

 

Disability awareness:
A New Jersey college student with Down syndrome aims to change public perception of her condition.

 

 

Beauty, fashion, glamour people with a disability:
Adaptive clothing never looked so good, at the Cerebral Palsy Foundation Design for Disability fashion show.

A young designer revolutionizes the clothing market for fashion-conscious people with disabilities.

 

 

Medical news – research:
Researchers have developed an autism classification system that defines levels of social communications ability among those with ASD.

Researchers examine late-onset ADHD.

 

 

Special education (including college for students with disability):
Partnering with families and teachers is the only way to make autism interventions work in the community.

Our Most Notable and Favorite Articles for the Week Ending February 5, 2016

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support.  As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Google+, LinkedIn, and Pinterest.  In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them.  Please click on the titles with embedded links to find the full article.

 

Adding Machine

It all adds up with this, a computer before there were computers. So, move aside, abacus, something much more high-tech has come along! It’s solid metal and made in the U.S.A. – as rare as is the two-tone color. This artifact was manufactured ca. 1942 by Wolverine, Pittsburgh, PA.

 

 

Disability in the news (mostly in New Jersey, the population we serve)
Just announced:
Saturday, April 16, 8:30 a.m. – 4:30 p.m
3rd Annual Facets of Dyslexia Conference
An important event on helping people with a learning disability in New Jersey

Also just announced:
Saturday, April 16, 8:00 a.m. – 4:00 p.m.
Eden Autism Princeton Lecture Series
An important conference for autism parents and professionals, New Jersey
The newest issue of People and Families discusses serving inner-city children with a disability in New Jersey.

In New York: Letitia James, NY Public Advocate, sues NYC Education Department over schools’ failure to provide adequate disability services.

…and nationally and worldwide: 150 speakers to present at AutismOne conference, May 25-29, Chicago.  The list was just released.

 

 

For parents of a child with a disability (parenting, special needs):
Infant girls at risk for autism pay more attention to social cues in faces than do boys
, making it more difficult to diagnose autism in girls.

 

 

 Advocacy and self-advocacy:
The Right to Make Choices
: New Resource on Supported Decision-Making | Autistic Self Advocacy Network

 

 

People with a disability in the community (disability rights and acceptance):
Meet Karate Kickin’ Dwarf: “Instead of dwarf tossing, the dwarf tosses you.”

 

 

Inspirational and Informative (or Both!):
A Welsh dad, inspired by his daughter with autism, uses his love of photography to raise awareness of the positive aspects of children with ASD.

 

 

Disability awareness:
The American Horror Story actor talks radical politics, inspiration porn, and why the disability community needs its own Spike Lee.

Good to revisit:  Two UNICEF YouTube videos promote the awareness and rights of children with disabilities:


 

 

Assistive technology:
Here’s a fine BBC article on the many uses and promises of assistive technology.

A very bright girl, 12, created an app to help her sister, 9, who is on the autism spectrum.

Assistive technology helps this blind professor navigate her complex world.

 

 

Medical news – research:
Brain research
reveals subtle differences in the cells within the frontal lobe of the brain in men with autism.

A naturally produced protein may help reduce certain types of inflammation, such as those present in people with multiple sclerosis.

Autism: Another Way of Being Uniquely Human

Uniquely Human

A review of : Prizant, Barry M. Uniquely Human. New York: SImon & Schuster, 2015.

For many parents, a diagnosis of autism answers one question but does not explain why their son or daughter has such difficulty expressing feelings, needs, and desires or why their social behavior differs so much from that of their peers.  Confronted by this mystery, these parents are understandably anxious.  What Barry Prizant seeks to do is to “turn self-doubt in to confidence and comfort, and to help them see as possible what they thought was impossible.”  The starting point is to adopt a fundamentally different way of seeing and understanding autism.  Most educators speak of “autistic behaviors,” undesirable traits that should be eliminated.  That is the classic medical model of autism, a condition or mental illness, or even a psychiatric abnormality.  That, says Prizant, needs to change.  “Autism isn’t an illness.  It’s a different way of being human…. To help [children with autism], we don’t need to change them or fix them.  We need to work to understand them, and then change what we do.”  In other words, Prizant adopts the perspective of neurodiversity, that conditions such as autism are part of our genetic make-up, a different way of thinking and being, “uniquely human.”  As such, this book makes an excellent companion to Steve Silberman’s NeuroTribes; both books are very welcome additions to the literature on autism.

 

Understanding Emotions
How do we work to understand children with autism, to help them?  And how do we change what we do?  Prizant explores these questions in the first part of Uniquely Human, “Understanding Autism.”  He proposes six steps:

Ask “Why?”  The first step is to go beyond answering why a child exhibits certain behaviors or patterns of speech with “because he has autism,” which leads to answering a question of why he has autism with “because he shows certain behaviors.”  Asking “Why?” entails going deeper, inquiring why a child does what she does.  The answer, says Prizant, is that the person is feeling emotional dysregulation.  In other words, people with autism experience discomfort, confusion, and anxiety more intensely than do most people, along with considerable difficulty coping with these emotions.  Many people with autism do what they do because it helps them, these behaviors are coping strategies or mechanisms.  What the autistic child wants – and needs – is information (even if the answer is readily apparent) to reduce the anxiety of uncertainty.

Listen.  Asking “Why?” is about empathy, and so is listening.  What may sound absurd or silly is, in fact, not.  The autistic child is telling a story.  For example, repeating a phrase, known as echolalia, is not nonsense talk, just another example of autistic behavior.   And it’s not “autistic behavior,” a pathology that presents an obstacle to the child fitting in socially.  Echolalia is, in Prizant’s words, an alternative way of communicating, using language for the same reasons everyone else does.  In fact, echolalia serves as a starting point, a learning strategy to acquiring language.

Accept enthusiasms.  Enthusiasms is Prizant’s term for what many people term “obsessions.”  Rather than being another “autistic behavior” that needs to be eliminated for the child to fit in socially, provide the child with autism with a motivational tool for learning.  Teachers and parents should use the autistic child’s enthusiasms as a bridge to learning other skills.  Hobbies fill a need in all of us: “An experience feeds a basic neurological need to be engaged, to appreciate beauty, and to experience positive emotion.”  These interests can lead one to find a uniquely fulfilling path in one’s work and life, as we are reminded by Sir Ken Robinson in his book, The Element. In this chapter, Prizant gives several excellent examples.

Understand trust, fear, and control.   According to Prizant, autism is best understood as a disability of trust: trust in the body, the world, and others.

  • Trust in the body. Children with autism have to cope with involuntary motor movements and, in the brain, thoughts.
  • Trust in the world. From the perspective of a child with autism, any change in routine is a violation of his trust in the world around him.
  • Trust in people. Because many people with autism find it difficult to “read” people, to predict their behavior, unexpected actions (even those that are entirely unintentional) pose a threat.  Autistic people go through life in a state of a heightened, hypervigilant alert.  Other people with autism have the opposite challenge: they react more slowly than others, internalizing their anxiety rather than directing it outward through behavior.

When one’s trust is challenged, the natural reaction is often to seek to exert control.  That does not mean that the autistic person is controlling or that such behavior needs to be extinguished.  What parents and teachers need to do is to build trust by acknowledging attempts to communicate, giving the person with autism choices in planning events, accepting the individual’s dysregulated emotional state, being dependable and clear, and celebrating successes, even small ones.

Recognizing emotional memory.  Emotional memories are those that are associated with a happy or sad, hopeful or frightening event.  Given that many people with autism have exceptional memory and, as stated earlier, often live in a state of heightened alert (similar to PTSD), these emotional memories are particularly strong in people with autism.  “A seemingly small association,” says Prizant, “can trigger what seems to be a disproportionately dramatic reaction.”  Anyone working with an autistic child must try to avoid these emotional triggers or offer something that can provide comfort, such as noise-cancelling headphones.

Helping with social understanding.  People with autism having difficulty with social understanding react in one of two ways:  They are oblivious to their blunders, or they are extremely anxious about what they do not understand.  Social skills training can help, but because the rules of social understanding come with so many exceptions, such teaching does not always work.  At the very least, social rules need to be taught very clearly and with directness – and explaining the meaning of phrases exactly and literally.  In addition, labeling pictures of people expressing certain emotions is ineffective; describing emotion in words is one of the most abstract tasks anyone can undertake.  It is better to introduce the appropriate label at the very moment that person is experiencing that particular emotion.  Moreover, says Prizant, the effort of autistic individuals to succeed in this area often causes them great stress.

 

 

Living with Autism
Teaching and caring for a child with autism takes a special person, someone who has “got it.”  These people know how to relax with the autistic child, to relate to him.  What does it take?  As Prizant explained, these people have empathy and sensitivity.  They ask “Why?” – why an autistic child is acting at this time and not another.  People who have “got it” share control with the autistic child.  They have a sense of humor.  They instill trust.  They are flexible.  What these people who have “got it” do not do is compile a list of deficits.  Rather than paying attention to a plan, they pay attention to the child, overlooking small setbacks in favor of seeing the overall trajectory of improvements in the way the autistic child is able to self-regulate.  For teachers and others working with the child with autism, they respect the parents’ hopes and dreams.  After all, says Prizant, parents know their child best.  Parents, in turn, should trust their gut, follow their instinct, while finding support groups with other parents of autistic children.  In addition, parents should actively advocate for their children but, in so doing, know the difference between being assertive and aggressive, as Prizant aptly discusses.

Two Developments in Special Education This Week

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portrait of a young boy at school working on a laptop computer screen

First, in our backyard, a bipartisan bill sponsored by State Senator Diane Allen to establish a special education ombudsman passed.
Here is the statement of the bill’s sponsor, .

In national news, the No Child Left Behind Act (a title appropriated from Marian Wright Edelman of the Children’s Defense Fund) is no more. This week, in a bipartisan vote, the Senate passed the Every Student Succeeds Act (ESSA).  The new legislation received praise from the Council for Exceptional Children (CEC), as well as President Obama

IDEA at 40 – Progress and Challenges

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Forty years ago this week, November 29, 1975, President Gerald R. Ford signed into law the Education for All Handicapped Children Act; today, we know this landmark as the Individuals with Disabilities Education Act and its acronym, IDEA.  This landmark civil rights law ensured that every student had the right to a free and appropriate public education (FAPE).  According to the Office of Special Education Programs, “… special education and related services [must be] designed to meet the child’s unique needs and … prepare the child for further education, employment, and independent living.” 

FAPE was defined two years earlier, under Section 504 of the Rehabilitation Act of 1973: “No otherwise qualified individual with a disability in the United States… shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program actively receiving Federal assistance.”    Since then, according to the U.S. Department of Education, 62 percent of students with disabilities are in classrooms with their general-education peers at least 80 percent of the day.  The progress is well expressed in a recent video.

On November 17, the U.S. Department of Education held a live conference on the progress and challenges associated with IDEA.

It is worth looking back on the life of Elizabeth Farrell, the extraordinary teacher who “made special education special.”

Elizabeth Farrell and the History of Special Education

Parents, teachers, and administrators can find additional resources through IDEAs That Work.  In addition, Education Week has provided a handy reference “cheat sheet.”

In addition, to be sure, much work still needs to be done; the need for direct advocacy services is still great; many agencies, parent advocacy organizations, and support groups can offer assistance.