From the Pittsburgh Post-Gazette:

Henry deYoung, 23, was named Carnegie Mellon’s top undergraduate computer science student last spring, and is now enrolled in the school’s Ph.D. program. His younger brother Andrew, 21, also a student at Carnegie Mellon, is just as brilliant. They both have spinal muscular atrophy, a muscle-weakening disorder.

Technically, they’ve already outlived their expected lifespan, but they don’t dwell on it. They’re not expecting a cure. An excerpt:

“I think one’s circumstances affect one’s life, and I think it’s helpful if I and others remember that, and know that really, circumstances are just circumstances, not necessarily bad,” Andrew DeYoung wrote in an e-mail.

“In other words, we all need to remember that every person has value, not because of what we do, but just because we are. And it doesn’t matter whether one is president of the United States or is one of the dozens of sick children waiting right now at Children’s Hospital for a transplant — I think that if we all remembered that we all have value, life would be a bit more pleasant, and less goal-oriented.”

Advocacy groups stress joys and potential, but some doctors caution that the prospect can be daunting

From the Chicago Tribune:

Down syndrome advocacy groups have embarked upon “one of the most aggressive campaigns in decades to change the public perception” around the condition.

The effort has been given a boost by the candidacy of Sarah Palin, whose son Trig has Down syndrome, and is particularly timely now that Congress has approved the Prenatally and Postnally Diagnosed Conditions Awareness Act. The bill, passed last week, would provide up-to-date information for parents who receive a diagnosis of Down syndrome or other conditions.

Some doctors, including Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, caution against providing a picture of the disorder that is “too rosy.”

“Whenever something like this is in the media, there is the tendency to make it appear much more beautiful than it is in reality,” Abramowicz said.

Angie Picchi, 28, (above, with her mother Linda) is nicknamed the “Myth Buster” for her work meeting with groups of doctors and refuting stereotypes and low expectations.

See also: Parents of children with special needs see hope in Palin’s advocacy — Shreveport Times

The House has joined the Senate in passing a measure that disability rights advocates hope will fundamentally change the conversations that are taking place between pregnant American women and their doctors.

Passed on a voice vote on Thursday, the bill would provide for accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. President Bush is expected to sign it.

Passage of the measure marks the culmination of an unprecedented bipartisan effort that has joined supporters of abortion rights, led by co-sponsor Sen. Edward M. Kennedy (D-Mass.), with opponents of abortion, led by co-sponsor Sen. Sam Brownback, and disability rights advocacy groups. Kennedy is also a longtime advocate for people with disabilities.

While members of this loose coalition may have profound disagreements about what may be acceptable at the end of a pregnancy, they came together around another key question in prenatal care: What kind of information and support should be available to pregnant women if initial testing reveals the presence of a disability?

The question has become more urgent in recent years as more women are postponing childbearing, putting them at a greater risk of having pregnancies marked by genetic and other abnormalities, and as the offer of prenatal testing has become standard care.

(more…)

Writing in NPR’s ‘This I Believe’ section, Penn State University English Professor Gregg Rogers explores his reaction to his daughter’s prenatal diagnosis of Down syndrome. Rogers and his wife were overwhelmed by fear and anxiety at the thought of raising a child with a disability, he says, but were transformed when their daughter Genevieve burst into their lives.

I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.

… On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don’t ever know as much as I think I do, but I’m always capable of more than I think I am.

Rogers and his wife Lucy host a website for other families in their area who have children with Down syndrome.

From Roll Call, Politico.com:

Roll Call and Politico profile the three members of Congress who have children with Down syndrome: Rep. Cathy McMorris Rodgers (R-Washington), Rep. Pete Sessions (R-Texas), and Del. Eleanor Holmes Norton (D-D.C.)

With Rep. Patrick Kennedy (D-R.I.), all are members of the Congressional Down Syndrome Caucus.

An excerpt from Roll Call:

The work-life debate has received heightened attention in the weeks since Alaska Gov. Sarah Palin was named the Republican vice presidential nominee. The mother of five has an infant son with Down syndrome, and as some wonder whether Palin can effectively govern while caring for her family, a handful of Members do just that every day.

McMorris Rodgers says she and her husband didn’t receive a diagnosis of Down syndrome until three days after son Cole’s birth, and she criticized the way she and her husband were briefed on “all the negative aspects” of the condition.

As a legislator, she has pushed legislation that would provide families with more comprehensive information on the risks and possibilities for those with special needs.

“As you start to get to know your baby, you realize that so much of the information is negative. You fail to get a balanced view of your child’s future,” she said.

Earlier posts here and here and here.

(Photo provided by the office of Rep. Cathy McMorris Rodgers)

NPR features a series on students with disabilities preparing and transitioning to college with the following segments:

Q&A: Prepping Kids With Disabilities For College—NPR

Roger Diehl (photo left), a freshman at the University of Wisconsin-Madison who has Asperger’s, attention deficit hyperactivity disorder (ADHD), and depression, and his mother Sita Diehl, who runs Tennessee’s National Alliance On Mental Illness (NAMI), answer questions about getting ready for college.

Roger emphasizes the importance of focusing on the individual strengths and interests of students while learning social rules. Sita says social support is essential, particularly family and good friends, when considering placement.

See earlier post on Roger Diehl here.

10 Tips For College Students With Disabilities—NPR

Clinical psychologist and author Kathleen G. Nadeau shares strategies from her book, “Survival Guide for College Students with ADHD or LD” for developing learning and organization strategies to cope with learning disabilities at college.

Learning To Thrive With Attention Deficit Disorder—NPR

Emily Algire shares her story of transitioning to college as a student with attention deficit disorder (ADD).

“I think she’s got very good self-awareness” says [Emily's mother Betty] Overby. And all the tools she’s been taught for coping with her ADD are helping her feel strong.”

Editor’s note: Are Emily and Betty any relation to NPR correspondent Peter Overby?

(NPR photo)

From the [UK] Independent:

UK equestrian Lee Pearson won his third gold medal in his third successive Paralympic games this week. He was born with arthrogryposis multiplex congenita, a muscle and joint condition that left him with small, twisted limbs, and has undergone 15 operations to untangle his joints. He controls his horse, Gentleman, with his lips.

When he was born, doctors all but gave up on him. Hospital personnel put his crib in a “broom cupboard.” An excerpt:

“I suppose I was not a pretty sight,” Pearson would later say. “My right foot was wrapped round my left knee, my left foot was wrapped round my right knee, my arms and hands were horribly twisted and I had an ugly birthmark covering half of my face and the top of my head. Mum took a gulp, picked me up and gave me the first of a million cuddles”.