A Boy and His Dog, Both with Disabilities, Share Their Boundless Love

Back in 2015, my younger daughter told me about a book she was reading and with which she became entranced. It’s about two misfits, a little boy and a huge dog. Both have physical disabilities. And as each is endowed with a great heart and heaping dose of empathy, they understood each other perfectly. As I love both animals and children with disabilities, I had to buy a copy and read it. I am very glad I did.

 

Haatchi and Little B

Book reviewed: Wendy Holden, Haatchi & Little B (New York: Thomas Dunne Books, 2014). ISSN 1250063183

He remembered the deafening roar of the train as it rumbled over him. Left for dead, an abandoned dog whimpered in the chilly night air. Fortunately, a kind-hearted rail supervisor spotted him and alerted the local animal welfare authorities. A series of veterinarians, nurses, animal shelter personnel, and animal advocates did everything they could to restore normalcy in his life. Everyone who met this dog was taken in by his large amber eyes, which belied his gentle nature. They did all they could for this unusual dog, but they could not save one of his hind legs and tail, making walking and communicating a major challenge for him. Now the problem was who would adopt a three-legged dog, an Anatolian shepherd, a breed most people associate with aggressiveness; even as a puppy, he was a very large dog. Those who met him knew he was a gentle giant. At one of the sanctuaries, the staff realized how loyal this dog was. They thought of a much-loved canine folk hero in Japan, an Akita named Hatchiko, who waited for his owner at a train station, even many years after he passed. They decided on an Anglicized variant, Haatchi. Little did they then realize that the name would suit him perfectly.

Will Howkins has a son, Owen, a boy with a very rare genetic neuromuscular disorder. The one dog he had was sweet-natured, but it was not in his nature to cuddle. Will and Kim, Owen’s mother, had divorced; Will was the boy’s primary care taker. Several years, later, Will met Colleen on line; like Will, Colleen loved dogs. One day, while browsing the Internet, Colleen was smitten by the face of an Anatolian shepherd staring back at her with enormous almond eyes. When the couple visited the dog in person, their feelings of love were even stronger. But how would Owen, Colleen’s “Little Buddy,” or “Little B,” react to a dog so much larger than he. They would have to give it a try. Little B was very shy and withdrawn, but when he and Haatchi met, they were in love; Owen became much more lively and outgoing. Soon, the story of the little boy and large dog spread, millions of people having viewed their account on Facebook. This is the book behind the story.

Haatchi and Owen had adapted to their disabilities, overcoming a great deal of painful surgery. The two inspired each other with their determination and positive outlook. Throughout the book, each experienced many more setbacks and challenges. In fact, the “happily ever after” is the astonishing positivity of all members of the family. Nobody knows the long-term future of either Owen or Haatchi; for now, however, both are extraordinarily grateful for what they have. That is the story of the family with the boy and his dog, who inspire each other—and will inspire anyone who takes the time to absorb this very enjoyable and highly readable true story.

The State of Learning Disabilities: A New Report

Identifying learning disabilities and providing needed services are a critical child welfare issue.

This very important report seeks to inform the public of the issues behind learning disabilities, conditions that are as misunderstood as they are misdiagnosed.

The National Center for Learning Disabilities, a leading advocacy group, just came out with a report, The State of Learning Disabilities: Understanding the 1 in 5. That figure, one in five, or 20 percent, refers to the number of students who have a learning disability, such as attention deficit/hyperactivity disorder (ADHD) or dyslexia. This population is very much misunderstood; all too often, these children are (mis)labeled as lazy or unmotivated or just not as smart as their peers. More often than not, these labels are untrue. Not only are these students at risk of failing school, but also they all too often struggle finding or keeping employment and are disproportionately represented in the prison population.

Despite one in five students having some sort of learning disability, according to this report, only one in 16 receive proper special-education services with an Individualized Education Plan (IEP) and only one in 50 receive services under Section 504.  This detailed report covers the following:

  • The neuroscience, stigma, and federal laws concerning these students
  • How to identify struggling students
  • Supporting academic success
  • The social, emotional, and behavioral challenges these students face and pose
  • Issues regarding the transitioning to life after high school
  • Recommended policies.

The report provides summaries for each state, with “key data points and comparisons to national averages in several areas such as inclusion in general education classrooms, disciplinary incidents and dropout rates for students with learning and attention issues.”

The bibliographic citation for this report is:

Horowitz, S. H., Rawe, J., & Whittaker, M. C. (2017). The State of Learning Disabilities: Understanding the 1 in 5. New York: National Center for Learning Disabilities.

Looking Back on a Month of Autism Awareness… and Appreciation

World Autism Awareness Day

Central to the U.N. Convention on the Rights of Persons with Disabilities (CRPD) is “respect for the inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons… and full and effective participation and inclusion in society” (Article 3). This concept is reflected in this year’s theme for World Autism Awareness Day, “Toward Autonomy and Self-Determination“.

 

On March 31, 2017, the U.N. held a conference on multiple aspects of autism, which included the following:

In the U.S. and throughout the world, the rate of autism is high, affecting children and adults of all socioeconomic and ethnic groups. According to the U.N., “Appropriate support, accommodation, and acceptance of this neurological condition allow those on the spectrum to enjoy equal opportunity, and full and effective participation in society.”

In opening the conference, Cristina Gallach, U.N. Under-Secretary-General for Communications and Public Information, said “We come together to renew our commitment to raising awareness of the rights of persons with autism – to equal opportunity and full participation in society, on an equal basis, with other citizens. To achieve this inclusive society that we aspire to, we must… ensure that the fundamental rights enshrined in the CRPD are respected.” This is a right that has been recognized since the Universal Declaration of Human Rights was declared in 1948.

U.N. Secretary-General Antonio Guterres could not be present, but he prepared a statement, which was read aloud: “On this World Autism Awareness Day, let us play a part in changing attitudes toward persons with autism and in recognizing their rights as citizens who, like everyone else, are entitled to claim those rights and make decisions for their lives in accordance with their own will and preferences. Let us also renew our promise engraved in the 2030 Agenda for Sustainable Development to leave no one behind, and ensure that all people can contribute as active members to a peaceful and prosperous society.”

The keynote speaker, Simon Baron-Cohen, Director, Autism Research Centre, University of Cambridge, was gave an overview of the autism spectrum.

In regard to the “commitment to leave no one behind,” Jackie Pilgrim, a noted disability advocate spoke about dignity. In her work with NAMI Durham she spoke of her organization’s new 8-hour course for police and first-responders to replace the inadequate 1.5 hour course used previously, one for which they have shown “passion” to learn.

Barry Prizant, author of the landmark book Uniquely Human: A Different Way of Seeing Autism, summarized his philosophy:

Uniquely Human

  • De-pathologize autistic behavior (e.g., echolalia, stimming). It’s the way we deal with stress and self-regulate. They should not be repressed or otherwise “managed.”
  • Autism is not a tragedy, it can become one
  • Self-determination begins in early childhood. Children at an early age
  • Let’s look at ourselves.

In other words, “autistic behaviors are human behaviors.”  This landmark book will be covered in the next post on this blog.

Added Micheal John Carley. The best way to help is to examine ourselves and change the way we view people with autism.

An autism research and education organization, Autism Speaks, initiated the worldwide Light It Up Blue, campaign in its effort to raise autism awareness.  Among many in the autism community, both advocates and self-advocates, Autism Speaks is highly controversial, because that organization is seeking a cure, whereas many people prefer to see autism as simply another way of being: “different, not broken.”

 

National Autism Awareness Month

autism_ribbonThat ribbon made of multicolored puzzle pieces has become one the most recognizable symbols of autism in the world.  The various colors reflect the many “faces” of autism, a condition often referred to as the autism spectrum disorder (ASD) because no two people with autism are alike.  (The cognitive abilities of people with ASD range from “nonverbal” to intellectually brilliant.)  The ribbon symbolizes solidarity and hope of a happy, fulfilling life for people with autism.  The puzzle pieces remind us that the condition and the people with it are still very much a mystery.

Autism Awareness Month first came to be some 25 years ago, when the Autism Society of America undertook an effort to promote autism awareness.  The primary objective was to “promote … inclusion and self-determination for all, and assure that each person with autism  is provided the opportunity to achieve the highest quality of life.”

 

Three short films that treat autism awareness and appreciation are worth noting:

  •  “Talking in Pictures.”  This documentary dispels myths and stereotypes… at least as they apply to everyone with autism. “It’s not that we’re doing it wrong, it’s not that we’re autistic enough to fit in with the world’s idea of autism, it’s that the world’s idea of autism isn’t big enough to fit us all in!”
  • “Make it Stop.” This is a brand-new awareness video to foster understanding of people with autism.
  • “Perfectly Normal,” is a film about Jordan, a man with Asperger’s, who discusses his everyday life, of which the New York Times publicized an important excerpt.

 

Appreciating Autism with Julia

Appreciating Autism with Julia

Julia, the new Muppet with autism autistic on Sesame Street autism awareness appreciation

Sesame Street in October 2015 introduced Julia, a Muppet with autism in one of their storybooks. On Monday, April 10, Julia mad her screen debut!

 

Sunny days have become sunnier at Sesame Street with a new kid on the block, a vivacious girl with bright red hair and large, expressive green eyes. Meet Julia. And she happens to have autism. Announced October 2015Julia made her debut on the beloved children’s show Monday, April 10, as part of Autism Awareness Month. In a video to introduce the character, Julia’s friend Abby Cadabby explains, “lots of kids have autism.” And “that means their brains just work a little differently,” she continues.  As the Amazing Song proclaims, this effort by Sesame Street is to promote not just autism awareness, but autism acceptance and appreciation.

(CBS News made the announcement on Sunday, April 2; the following day, Julia was introduced in Congress.  Incidentally, Power Rangers introduced Billy, a blue character with autism.)

 

A Basis on Research and Experience

Noteworthy is that the people who create and enact the show themselves have experience with autism. Frank Campagna, the writer of the respected blog “Autism Daddy” is one of the video producers at Children’s Television Workshop. In his blog, he discusses how, after the birth of his severely autistic son, he sought to bring awareness and acceptance of the condition on the show.  And bringing Julia to life is puppeteer Stacey Gordon, an advocate and a parent of a boy with autism.

A researcher at Virginia Tech, herself a mom of a boy with autism, praises the way Julia doesn’t just talk about autism, but shows her young audience how autism is another way of thinking and being, providing the tools for them to interact with their autistic peers.

 

Resources for Parents

“Sesame Street and Autism” offers a variety of resources for parents, including the following:  Storybook image of Julia, a Sesame Street Muppet with autism

 

Sunny Day
Sweepin’ the clouds away
On my way to where the air is sweet

Can you tell me how to get,
How to get to Sesame Street

Come and play
Everything’s A-OK
Friendly neighbors there
That’s where we meet….

A New Disability Advocate: The Ford Foundation

The Ford Foundation has long been a leader in philanthropy, supporting causes and efforts to repair the world. However, several disability advocates took the foundation and its president, Darren Walker, to task for omitting this key constituency. With noteworthy candor, Mr. Walker acknowledged his error of omission and issued a public apology, backed by a pledge to advocate for people with all disabilities. In this article I wrote for the blog of the agency I work for, Advancing Opportunities, I cite Mr. Walker’s original letter, along with two very favorable responses from disability advocates.

Celebrating Individual Abilities

dude-with-ipad Mature aged man with a disability operating touchscreen computer

Darren Walker, President of the Ford Foundation makes a public effort to include people with disabilities.  He explained his organization’s initiative on the foundation’s blog in an open letter, titled Ignorance Is the Enemy: On the Power of Our Privelege and the Privilege of Our Power.   He cited the efforts of James Baldwin in the 1960s and 1970s and the Black Lives Matter movement of today as important forces in “confronting power, privilege, and ignorance.”  By privilege, Mr. Walker speaks of unearned advantages or preferential treatment one group holds over another.  And ignorance, he says, is such a ferocious enemy because of its conspiratorial silence.  As an African American gay man, Mr. Walker pledged his organization would focus on combating inequality.  At that time, leading disability advocates took Mr. Walker to task for overlooking a major…

View original post 282 more words

Meet Julia, Who Happens to Be Amazing!

Julia autism autistic Sesame Street acceptance awareness

Julia, the new Sesame Street character with autism, has already made friends on this wonderful children’s show, offering an example of acceptance of our differences.

Ah, yes – I am old enough to remember when Big Bird, Bert and Ernie, Cookie Monster, Oscar the Grouch, and all of Jim Henson’s other beloved Muppet creations were brand new, resplendent in their Technicolor glory on my aunt and uncle’s RCA color television set, the one big enough to be a bedroom dresser and, like one, encased in warm wood.  However, even my younger readers would have also grown up on Sesame Street.  In fact, young and very young audiences in more than 150 countries around the world watch this all-time classic show, nearly a half century after it first aired in 1969.  Back in the year in which Neil Armstrong first set foot on the moon, Sesame Street was a champion of inclusion.  And in that proud tradition, the highly respected show on October 21, 2015, launched “Sesame Street and Autism.”  This far-reaching initiative has opened to considerable acclaim.  The timing is also notable, in light of the astonishing new book NeuroTribes, which not only counters the stigma of autism, but also presents the case for full acceptance of people with this different kind of mind.

Through the catchy “The Amazing Song,” Sesame Street raises autism awareness and, and more important, acceptance of our differences.    Christine Ferraro, who wrote the lyrics to the song, explains her connection to autism, in that she has a brother on the autism spectrum.  This fact inspired her to feature siblings in the video and other instructional materials, as amazing children have amazing brothers and sisters, who may need a little reassurance.  “Every kid is an original; we’re all one of a kind   We’re all as different as can be, but in some important ways, we’re all the same  – we can all be friends, because there’s so much we can share.  We all have feelings     We all need a friend who can understand.”   Oh, by the way, one of the children conveys his messages via an alternative and augmentative communication (AAC) device, while another uses American Sign Language.

In the highlight reel, Julia says, “Lots of kids have autism.”  And, she adds, “That means their brains just work a little differently.”  Julia then introduces us to her “real-life” friend Nasaiah.  She points out that his mom helps him learn how to play with other boys his age.  Later on, we meet Jasmine, who with her parents, help her younger sister, Yesenia, with everyday self-care activities.  And there is Louie’s father, who explains how his son made him “so much a better person, a better father.”    Further on, the mom of another child says, “I just think he looks at the world in a very different way than we do.  I don’t think it’s a bad way…. I think it’s amazing.”  According to Sesame Street executive Sherrie Wilson, “Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally.”

In “Sesame Street and Autism.  Family Time with Grover,”  the beloved blue Muppet introduces us to Angie.  Angie, like many other children, a very special way with her younger brothers.  Although they are twins and both have autism, they are very different personalities.  This is perhaps the best testament to the well-proven adage, “When you have met one person with autism, you have met a person with autism.”

Frank Campagna, the writer of the popular and highly respected blog “Autism Daddy,”  is one of the video producers at Children’s Television Workshop.  After the birth of his severely autistic son, he sought ways in which to spread autism awareness through the award-winning children’ show as well.

Christopher Jackson, one of the writers and artists of Sesame Street and Autism, has a son with autism.  He talks of his “beautiful struggle.”  His son’s loving nature inspired him to partake in this endeavor.

The Autism Self Advocacy Network (ASAN) assisted in the creation of Sesame Street and Autism.  In its policy statement, the advocacy organization states, “Sesame Street should be commended for reaching out to and focusing on the many voices of the autistic community… aimed at ending stigma and increasing understanding and inclusion of autistic children.”

Sesame Street and Autism offers resources for everyone – children with autism, their parents, and children and parents of children who do not have autism:

Even children who are limited in their ability to express their thoughts and feelings verbally can sing along:

Sunny Day
Sweepin’ the clouds away
On my way to where the air is sweet

Can you tell me how to get,
How to get to Sesame Street

Come and play
Everything’s A-OK
Friendly neighbors there
That’s where we meet….

Thank You, Oliver Sacks, for All the Good You Have Brought

I mourn the loss but celebrate the life of a very fine man.  I learned of this news from another man I greatly admire, Rabbi Lord Jonathan Sacks. “Alas, we are not related,” he said humbly, in saying he was proud to share his surname.

Oliver Sacks did so much to further the understanding of intellectual disabilities and advocate for those who have them.  Like Janusz Korczak, he accepted people for who they are and dedicated his life, work, and writing to that end.  Here is a video obituary from the New York Times; the article is here.

This year, the New York Times ran two beautiful essays by Dr. Sacks himself, both of which reflect his admiration for the lives of people with intellectual disabilities – and life in general.

In addition, many Times writers interviewed Dr. Sacks.  Here are some recent pieces:

Thank you, Dr. Sacks, for all you have done!