Saturday, February 11, 2012

Dan Marino's Forward Pass for Adults with Developmental Disabilities

The Dan Marino Foundation this week unveiled plans to create a vocational educational program for adults ages 18 to 28 with autism spectrum disorders, Asperger's syndrome, Down syndrome, cerebral palsy and other disabilities. The Palm Beach Post has a good explanation of the program, called the Dan Marino Foundation Vocational Campus, to be located in downtown Fort Lauderdale, Fla., and serve 60 students starting in the fall of 2013.

This is a program worth watching. The foundation, started by former NFL quarterback Dan Marino 20 years ago after learning his 2-year-old son had autism, has a record of building programs and raising money to help people with developmental disabilities. This new program aims to teach students skills, in fields such as culinary arts and auto mechanics, so they can get jobs and live more independent lives.

As many families dealing with autism and other disabilities can understand, such a program also addresses a fundamental question: what will our kids do after they finish school, after they turn 22? In Florida, only one in five people with developmental disabilities have a job, the Marino Foundation points out.

The Marino project is not alone, as other nonprofit organizations, educational institutions and social service agencies work to build or expand programs to include people with disabilities in the work force and society in general. The Easter Seals, based in Chicago, has long worked to train and place people, and now counts people with autism as a key constituency. A program called Think College, based at the University of Massachusetts at Boston, offers educational programs and training classes. This article in The Chicago Sun-Times reports on a career development program run by the Turning Point Autism Foundation of Naperville, Ill. The Jewish Vocational Service of Metrowest, in New Jersey, recently opened a career center for people with autism. There is also a Danish software company made famous by Harvard Business Review as its technical director, the father of a child with autism, applied some insights he learned as a parent to hire people with autism to do quality control work.

You may know of other programs, and I invite you to post a comment on this blog with more information.

It can be daunting to think of our kids' future when they grow up and wonder what it holds for them. Programs like these are not the answer for everyone, but the Marino Foundation's information flier on its new vocational center is worth reading. It says, in part:

There are over 341,000 students in Florida who have a disability

77 percent will graduate or age out [of school] without a standard diploma

79 percent will not qualify for further educational opportunities

70 percent do not believe they will ever have the means to live independently

Only 8 percent of companies in the U.S. report hiring people with disabilities

90 percent of individuals with autism are unemployed

But the most meaningful statistic of all is that there is a 100 percent chance the Dan Marino Foundation Vocational Campus will make a difference

Sunday, November 06, 2011

Insights for Parents of Disabled Kids from Nobel Laureate Kenzaburo Oe

Kenzaburo Oe is a Japanese writer made famous in 1994 for winning the Nobel Prize in literature for work that “with poetic force creates an imagined world, where life and myth condense to form a disconcerting picture of the human predicament today.”

He is also known as something else: the father of a son with serious disabilities, including autism.

That he could make such critically-acclaimed, universal art inspired by his life experience—a number of his works, like the novel A Personal Matter, confronts the issue of having a seriously disabled child—interests me. Reading his work, learning about his biography, I want to know: How does he fashion a life of meaning from these circumstances? Where does he find the stamina to carry on as a parent every day and to also delve so deeply into these experiences? Apart from his writings, what is his attitude to parenting, and to life? What can others learn from him?

These are big questions for a blog post and you will find only the beginnings of answers here. But I ask these questions because I see committed parents of kids with autism and other special needs struggling with the demands of their devotion. It takes so much time, effort and resources to set up services. Parents need to monitor the quality of those services, track results, and make adjustments. They have to advocate with government agencies and other service providers to obtain more effective, different or additional services as circumstances change. It takes time to manage behavior plans and individualized education plans. And that’s in addition to going to work, paying the bills, managing a household, caring for others in the family. For many (depending on where they are in the autism journey), these considerations can limit thoughts parents may have about other aspects of life, such as participating in community activities and religious life. Or simply making time to have fun.

And yet, given all this, it is natural for parents to ask themselves, time and again: Can’t we be doing more?

The song of the water rail

I was curious to know more about Kenzaburo Oe and when I learned he was speaking at Tufts University on November 3, I went to see him. What I learned was both basic and inspiring. At 74, Oe is a writer, a political activist, as a husband and a father who remains on high alert for moments of meaning. He described his political activism to close nuclear power plants in Japan after the Fukushima disaster, for example.

When it comes to his disabled son Hikari, the moments of meaning he experiences give him both joy and strength. He draws sustenance from his son, both from Hikari’s achievements and his individuality as he has learned to express it.

Oe recounted how his son (Hikari means “light” in Japanese) did not speak until he was six years old. Hikari’s parents provided tapes of song birds, narrated by a radio actor. A bird would sing, and the actor would identify it. Tweet. “This is a sparrow.” Warble. “This is a nightingale.” And more. Hikari would listen to these tapes for hours. And his parents could tell by watching him that he was listening, but his reactions did not involve intelligible speech.

One summer when Hikari was six, Oe and his family spent time at a country cottage. “I was walking with my son on my shoulder,” he said. “Always, he was silent. Then some bird, a water rail, made a sound.

“My son, he says, ‘This is the water rail’ in the accent of the radio announcer.”
Oe continued: “I couldn’t believe that I heard my son speak.” But it soon became clear that his son could name that bird’s song and others. They continued listening to the bird song tapes for one year, then began listening to classical music. Mozart, Chopin, Bach. “He was charmed by the music,” Oe said of his son. “He abandoned listening to the old [bird song] tapes.”

Then when the radio played in their home, Hikari began to identify the composers. He would say, “It’s Bach,” or “It’s Mozart.” Over time, Hikari began to study piano, but his physical disabilities prevented him from manipulating the keys. His study of music continued, however, and he eventually began to create his own compositions which were recorded on CDs.

Encountering Oe from a distance among hundreds of people in a university auditorium, it was clear that Hikari’s disability played a central role in the family’s life together, and in his work as a writer. (Oe chronicles this story in A Healing Family, a collection of essays about his son’s role in his family which includes his wife and Hikari’s two younger siblings.)

Two aspects of Oe’s humanity emerge:

First, Oe celebrates the moments of joy in the life of his son and his family. It’s not that he pushes aside life’s difficulties. If you read A Personal Matter, you witness doctors advising new parents of a child born with brain damage that their infant should be allowed to die—an experience which echoes the author’s own. When you hear Oe in person, it is clear the pride he takes in his son’s achievements in spite of his challenges.

Second, Oe appreciates the person that his son, now 48 years old, has become. Oe recognizes the times when his son has asserted his own identity. Such a moment occurred when Hikari was still a teenager. Oe said there came a day when Hikari told his mother and father to stop using a childhood nickname, Pooh, and to call him by his real name instead. This moment of personal advocacy must have been a memorable event for Oe to recall it three decades later.

Oe’s his alertness to meaningful moments in his son’s life includes not just the happy achievements. As Oe noted in his Nobel lecture, he found his son’s music also captured deep feelings of sorrow:

“My mentally handicapped son Hikari was awakened by the voices of birds to the music of Bach and Mozart, eventually composing his own works. The little pieces that he first composed were full of fresh splendor and delight. They seemed like dew glittering on grass leaves. … As Hikari went on to compose more works, I could not but hear in his music also ‘the voice of a crying and dark soul’. Mentally handicapped as he was, his strenuous effort furnished his act of composing or his ‘habit of life’ with the growth of compositional techniques and a deepening of his conception. That in turn enabled him to discover in the depth of his heart a mass of dark sorrow which he had hitherto been unable to identify with words.”

All of this is to say that parents of kids with disabilities can learn something from Kenzaburo Oe’s family experience: As we continue on our quest to make the best lives we can for our children, we can take stock along the way. Be open to moments of meaning. Be alive to the glimpses of achievement. And be alert to the people that our children become, their personal expressions of individuality. There can be moments of joy in the act of discovering more about these people we love, even when there is sadness in their hearts. We can find sustenance in their meaningful acts of expression.

“Joy” versus “happiness”

On my drive home after the lecture, I heard more about this concept from the Israeli novelist and writer Amos Oz, who was the subject on a recent segment of the public radio show On Point. The interviewer asked Oz whether he believed different cultures around the world have different conceptions of happiness. Oz asserted that human emotions and experiences are universal to the human condition, and added:

“I don’t believe in everlasting happiness. I believe in joy, in passing joy. In Hebrew, we don’t even have a proper word for ‘happiness.’ The Hebrew word asher, which only translates as happiness, means receiving positive feedback from others. There are six Hebrew words for joy because there are so many kinds of joy, whereas happiness is an abstraction. And everlasting happiness is a nonexistent experience. I believe in passing joys, in coming joys, which come and go and come and disappear. I don’t believe in everlasting happiness, in arriving there and leaning back and enjoying yourself forever.”

Hearing Oz’s answer after Oe’s talk had the effect of witnessing two voices in captivating conversation. For me the experience reframes the questions at the beginning of this post. Should we be doing more for our children? Is it ever enough? Yes and no. But we also need to make room for witnessing moments of meaning. The times when we experience joy with our children should feed us, strengthen us. So that, as we carry on in challenging times, we can be ready for the next moment of joy, however fleeting.

(Photo of Kenzaburo Oe, taken in 2005 by Amao via Wikipedia.)

Monday, October 18, 2010

Useful Article to Explain Autism Diagnosis to Kids

The Interactive Autism Network has posted a clearly written article designed to help parents discuss an autism spectrum disorder diagnosis with their child. The article, ASD Diagnosis: What Do We Tell the Kids? uses sensitive language and explanations that outline how kids with autism have many different profiles. It has information for siblings, too.

These elements all make the article useful for families who are looking to understand how to communicate with their children—and also makes it potentially valuable as a tool to help explain what is going on in your family to others, from grandparents and extended family members to friends who may have trouble relating to what's going on in your house.

The article explains:

"Each individual with ASD is different. Some are diagnosed at 2 and others at 12. Some are spending their day in a protected special education environment, and others are out in typical elementary, middle, or high school classrooms with some level of assistance, or none at all. Some are intellectually disabled, and some have IQs in the normal or even gifted range. Regardless of intellect, emotional maturity generally lags behind that of typical peers. All of these factors, and more, will influence a parent’s decision about when to inform a child about the ASD diagnosis."
The article encourages parents to "assess what your child already knows and is ready to hear" and to explain the news at the right level, to be positive about a child's capabilities and, overall, to tailor the information to a child's own situation while explaining that autism is "a different kind of disability."

"People have a disability when something isn't working quite right, and they need extra help because of it. For example, a person who is blind may need a seeing-eye dog. People with ASD have a different kind of disability. They can see just fine, but they have trouble with other things. Sometimes they get 'stuck' on a behavior or topic, and they have a hard time understanding how other people think and feel—that's why sometimes it's hard to figure out what people want, or how to make friends. People with ASD need extra help with these things."

This article includes a list of references to research articles and additional resources including other articles from the National Autistic Society in the U.K., from the Autism Society of America, as well as links to resources for families, adults looking at what kinds of information to disclose to employers and others, the well known Sibshops support group for siblings of people with disabilities, and publishers who specialize in books about autism.

This is the kind of article, even if you are not ready to discuss anything, will help you lay the groundwork to study the issue so you can make informed decisions later. Take a look.

Thursday, July 08, 2010

A Note About Autism Bulletin on Twitter

If you are reading news and information online, you undoubtedly have heard something about Twitter, the online information service where users share short messages of 140 characters each. You don't have to post your own messages on Twitter to find it useful, but you do need to sign up for a free account to follow what others say. I recommend it as a good way to keep up to date, because many media outlets, organizations and bloggers -- including this one -- are posting information on the service.

Autism Bulletin's Twitter feed is here: I post links several times a week to items in the news, information about events, information from advocates for people with autism and other disabilities and other information I find useful as a member of a growing global community of citizens who care deeply about people with autism spectrum disorders.

Some recent examples:
* There's a conference, Advancing Futures for Adults with Autism, including a July 15 briefing for members of Congress, happening in Washington D.C.

* Another conference is coming up, August 7 and 8 in Greenwich, Conn., for people who have siblings with disabilities. Find more information at the International Sibling Conference website.

* The Lovaas Institute has posted a partial list of iPhone, iPod Touch and iPad applications designed to engage young children with autism using the principles of Applied Behavior Analysis (ABA).

* The Autism Society of America, in advance of its conference this week, recently recognized six advocates for people with autism and their families. Read more about the 2010 Autism Champions.

If you follow Autism Bulletin on Twitter, the messaging service pushes these information microbulletins out to you automatically. I also have posted a box on the home page of Autism Bulletin which lists these messages, or "tweets" with the latest one on top of the list.

That's the information part of Twitter. What's interesting about what observers and participants in this web publishing world call social media, and what's interesting about Twitter in particular, is that there's a loose sense of community that builds among participants. If you sign up for the service, you can "retweet" or re-broadcast messages you find interesting; you can send messages to others on the service. Or you can observe what happens when you share information.

Notice, for example, the list of more than 2,000 "followers" of Autism Bulletin on Twitter (that's a tiny number compared to the more than 100 million users who have registered worldwide, according to Wikipedia). Even in this small community, you will find:

* Parents
* People who have an autism spectrum disorder diagnosis
* Educators who work with autistic kids, including some who are working to start new schools
* Advocates
* Doctors
* Siblings
* Grandparents

There are people from many countries who speak many languages. Some are veterans of the autism community, while others are newcomers to having this diagnosis in their lives. It's another reminder, among many, that you are not alone.

Wednesday, March 24, 2010

Health Care Reform and Autism Coverage: Some Holes, Notes Autism Speaks

Autism Speaks, a major advocacy group, has a helpful post explaining some details of the health care reform bill signed this week by President Obama. In essence, the group praises the direction of the health care policy embodied in the bill and cites some direct benefits for families who are seeking services for people with autism. But the article also notes there are holes in specific coverage options, and cites these holes as reasons to continue to seek reforms.

On the plus side: the new law will end the practice of insurance companies denying benefits based on pre-existing conditions, including autism spectrum disorders. But the law won't mean that insurers must provide behavioral services such as Applied Behavior Analysis. From the article:

Not all insurance plans will be required to cover behavioral health treatment. That’s because only certain types of health plans will be required, beginning in 2014, to cover the list of essential benefits, including behavioral health treatment. The types of plans included under this provision are: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange. Existing coverage, plans offered in the large group market outside exchanges, and self-insured plans (plans under which an employer assumes direct financial responsibility for the costs of enrollees’ medical claims, or sometimes referred to as “ERISA plans”) will not be required to provide the essential benefits package. This last exception is especially significant because 57% of workers who are currently covered by their employers’ health benefits are enrolled in a plan self-insured by the employer.
See the article by clicking here: Health Care Reform: What does it mean for the Autism community?

The White House has links to information about the health care law and a link that leads you to the text of the law known as H.R. 4872, Health Care and Education Affordability Reconciliation Act of 2010.