Illinois measure awaits governor’s signature

From the Chicago Tribune:

A bill approved by the Illinois legislature would give parents of children with disabilities and their designees the right to visit their child’s classroom to assure that their needs are being met.

House Bill 628, which is awaiting the governor’s signature, would allow parents and their “experts” to monitor a child’s special education classroom, or to observe in advance the classroom a school district believes is the best fit for the child.

Parents testified that the measure was needed because school districts routinely exclude them from the classroom. The federal Individuals with Disabilities Education Act does not expressly grant parents access to the classroom.

Presently, Massachusetts is the only state in the nation with a comparable access law on the books.

A study in the current issue of Pediatrics reports that parents of premature infants place a ‘significantly’ higher value on their children’s lives, regardless of disability, than do health care workers who are involved in neonatal care decision-making.

Most health care workers surveyed said that having multiple disabilities is worse than death, whereas most parents of premature infants said that death would be worse than living with disabilities.

Researchers reported that parents of premature infants were most likely to want to save an infant at all costs. They say parents of premature infants who have experience caring for children with disabilities should be included in counseling new parents of critically ill infants.

Their participation is needed, the researchers say,

“so that a balanced view could be presented to parents of critically ill infants and increase the probaility that they would make informed decisions that they would not later regret.”

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The tragic double suicide of a British couple after the death of their disabled son has sparked a passionate national discussion about the availability of supports for the more than six million people in the UK who provide informal or unpaid care for relatives and friends.

Neil and Kazumi Puttick had given up their jobs to care for their five-year-old son Sam, who had been paralyzed in a car accident four years ago. The family had reportedly been coping well until Sam contracted pneumococcal meningitis and died unexpectedly.

Less than 48 hours after his death, the couple drove 140 miles to the southwest coast of England and leaped off the cliffs at Beachy Head, holding Sam’s body in one backpack and his toys in another.

According to experts, a devastating combination of grief, the sudden loss of identity, and the isolation caused by the withdrawal of health and social services after the person dies or moves into a home, can leave carers particularly vulnerable to an emotional breakdown and ill-health.

News coverage has been extensive. Following is a sampling.

Love stories: Britain’s army of carers — [UK] Independent

Three out of four unpaid carers have reached the breaking point — [Glasgow] Herald

Death leap pair ‘loving parents’ — BBC

Beachy head suicide couple turn away friends in final hours — [UK] Independent

The smile his parents could not live without — [UK] Daily Mail

The Japanese tradition behind the family suicide — [UK] Telegraph

Bound by love, united in death — Brisbane [Australia] Times

This will put us over the edge on assisted suicide — Dominic Lawson in the [UK] Times

Having a special needs child means life is harder, but it is also much richer — [UK] Sun

Yes, you can survive the death of a child — [UK] Telegraph

(Kazumi, Sam and Neil Puttick, photo from [UK] Independent)

Preparing for his daughter’s high school graduation, Cincinnati Enquirer sportswriter Paul Daugherty pens a poignant message to parents of all children with disabilities: “Expect. Don’t accept.”

Daugherty says daughter Jillian has “maxed-out her potential”, defying expectations by riding a two-wheeled bike, joining the high school dance team, graduating from high school. Jillian has Down syndrome.

An excerpt:

Don’t allow your hope to be tethered to the perceptions of others. All we’ve done for Jillian is fight for her right to be Jillian. She has done the rest. The proof is Saturday, when the seas part, the world stills and she flips the tassel.

… With Jillian, it’s been a joy, a wonder, a pain, a pleasure, infinite sadness salved by timeless hope. A patience with some, a fight with others, a full-time yearn that, someday, everyone will not simply look at her, but will see her as well.

Maybe beginning today. Graduation Day.

Earlier post here.

Interviewed on NPR, journalist Karl Taro Greenfeld says his childhood was overwhelmed by his brother Noah, who is severely autistic. Noah became a celebrity in the 1970s when their father, Josh Greenfeld, wrote a series of best-sellers about him. Karl Taro Greenfeld is the author of the just-released memoir, “Boy Alone.” (Earlier post here.)

Excerpts from Greenfeld’s interview with NPR’s Michele Norris:

… “when you have a developmentally disabled person in your family … the gravity of the family is tilted disproportionately toward that person. In my family, Noah became the center of everything.”

… “Almost as soon as I have a memory of myself, the memory is of worrying about Noah,” Greenfeld says. “I was very much the less important sibling. I don’t look back on that with any kind of self-pity; it just was the reality of the situation.”

… More than once, Greenfeld uses the word “idiot” to describe his brother.

(more…)

From the Washington Times:

An informal support network is organizing to assist prospective parents who have received prenatal diagnoses of disabilities. The dilemma of these parents was not widely discussed until last fall, when GOP vice presidential hopeful Sarah Palin talked about refusing to abort her son Trig, who has Down syndrome.

Parents now say they feel pressure from doctors and others to terminate their pregnancies. The Prenatally and Postnatally Diagnosed Conditions Awareness Act, signed last year by President Bush, was designed to provide women with accurate information about their child’s condition. But doctors are dubious about whether the measure has had much of an impact on the way medicine is practiced.

“The medical community has not been aware of alternatives,” says Dr. Byron Calhoun, vice president of the obstetrics and gynecology department at West Virginia University in Charleston. “The only alternative parents are given is termination of pregnancy or they’re told they are on their own.”

… “People think your life is over when you have a handicapped child,” [said Dan] LaHood. “It’s a cultural view to eliminate them as undesirable. They don’t know what the demands are and what the rewards are.”

See also:

• Strength for the journey; A family’s experience with the birth of a daughter with Trisomy 18 — Macon Telegraph
• Isabella will always be treasured little sister; Girl with Trisomy 18 lives for eight days — Fredericksburg [VA] Free Lance-Star

In the Topeka Capital-Journal, Rud and Ann Turnbull say their son Jay proved that adults with autism can have purposeful, worthwhile lives if support personnel are in place to help with transitioning from school, housing, employment, social connections and other needs.

The Turnbulls, who are co-founders of the Beach Center on Disability at the University of Kansas, reached out to friends and colleagues to develop a plan for Jay’s life after he was expelled from an adult services program for people with disabilities.

Jay subsequently spent 21 years working as a clerical aide, a job that provided him with structure and a social network, and lived in his own home with a couple who oversaw his schedule and support services. Jay Turnbull died earlier this year, most likely of a heart condition, at the age of 41.

While strides have been made in diagnosis, early intervention and education, [Ann] Turnbull said much more needs to be done so children with autism can lead productive, independent and happy lives as adults.

The article is part of a Topeka Capital-Journal series on autism.