Writing in National Public Radio’s “This I Believe” series, Donald Rosenstein explains how his family has adapted and grown, thanks to his son Koby’s diagnosis of autism.

That Koby has autism is old news at this point. We’ve grieved, survived and adapted. We’ve learned to be more patient, to celebrate more modest victories, and to connect with Koby whenever and however we can. Now, when Koby flaps, I’m happy for him and what it means about his engagement, not sickened by what it might mean for his and our futures.

… I believe that “reframing a problem” can help to overcome it. But adaptation is not the same as becoming tolerant of or inured to something. Adaptation allows for creative possibilities. Koby has adapted to us and we to him, and through this process our family has discovered deep and meaningful connections with each other — connections we never thought possible.

Dr. Donald Rosenstein is the clinical director of the National Institute of Mental Health, specializing in psychiatric care of the medically ill.

Earlier post here.

From ESPN2, on Youtube:

Adam Ragan is a member of his brother David’s NASCAR racing crew. Says David: “He overcomes whatever obstacles are thrown at him in his life, so I think it makes us do a little better job at what we’re doing.”

From USA Today:

Christine Frisbee says she wants people to remember what she calls the “forgotten siblings” — the brothers and sisters of children with chronic illnesses.

Her book, “Day by Day,” compiles diary entries from children with seriously ill siblings. Frisbee writes from experience.

Frisbee’s teenage son, Rich, died in 1989. He had leukemia. In the almost 12 months from the diagnosis to Rich’s death, Christine and her husband, Rick, the parents of five children, shuttled back and forth to the hospital each day. And in the hectic life of a parent with a seriously ill child, Frisbee realized she made little time for her other children, who, just like other children, needed their parents.

… Reading through the entries of the book, published by the Richard D. Frisbee III Foundation, one thing becomes clear: As families try to cope with the illness, the healthy children feel as if they have become an afterthought to their parents.

Lucy Hunter’s tall frame is due to a genetic disorder. Yet she refused screening for her sons, who both now have the condition. She explains why she has no regrets

A first-person piece from the [UK] Independent:

… After genetic counseling, I considered the options. Although a prenatal test for Marfan’s exists, the idea of aborting my own child because he is, well, like me, was absolutely abhorrent. I looked into the more palatable idea of having a “designer” embryo implanted using IVF. Then I decided to take my chances on nature.

I have never regretted my decision, despite the guilt when I realised that Rufus, and Oisín, now four, had both been affected.
(more…)

From the PBS Newshour, a personal essay by 15-year-old Sydney Ray of Fresno, CA, about the joys and occasional frustrations of living with her brother. Seven-year-old Aaron has Down syndrome, “a genetic condition that affects how the body and brain develop.” Sydney’s article is part of Speak Out, a collection of essays by students around the world. An excerpt:

Many children with Down syndrome never get the chance to shed their light on the world. Joni Eareckson Tada, the founder and CEO of Joni and Friends International Disability Center, said, “over 90% of pregnant women who are given a Down syndrome diagnosis choose to have an abortion.”

This statistic breaks my heart. While children with Down syndrome do require extra time of the parents, the payoff is well worth it. … I am quite sure we are all better off knowing Aaron.

… Sometimes the people around me mock those with special needs. I find this hurtful, since my brother could very well be the person they make fun of one day.

… Many people would get frustrated if they had to live with Aaron everyday. However, for me, I have never known it to be anything but a blessing.

Not everyone can or should have a special needs child in their family, but everyone should be tolerant and polite to the ones they meet. These people mean the world to their family and friends.

On CNN.com, an article that first appeared in Parenting Magazine back in November gets a second look.

Contributing editor Margaret Renkl profiles Lisa and Mike Spellman of Nashville, whose 19-month-old son Anthony was diagnosed with Down syndrome at birth. Renkl paints a portrait of two loving parents who have come a long way from their initial disappointment over their little boy’s diagnosis to celebrating and cherishing him for himself.

Revised prenatal testing guidelines apparently provided the news hook that brought the piece back.

Older mothers are more likely to have a baby with Down syndrome, but 80 percent are born to women under age 35, because more in this age group have kids and, until this year, they weren’t routinely tested in the first trimester. But now two noninvasive blood tests combined with a new ultrasound can identify Down with 87 percent accuracy at 11 weeks’ gestation, without risk of miscarriage. Currently (and controversially), an estimated 90 percent of Down pregnancies are terminated, but this new test may raise that percentage.

Not that it would have changed anything for Lisa.

“Whatever those tests might have revealed, it wouldn’t have changed our minds about the pregnancy,” she says.

The Spellmans had no special risk factors for Down syndrome.

The story offers helpful tips for parents, and says siblings of children with Down syndrome “learn kindness, empathy and respect for diversity in greater measure than other kids.”

When the story first appeared last fall, it carried a subhead that read: “A generation ago, he’d probably be growing up in an institution — but today his world is open.” No sign of it this time around, and the link to the earlier story no longer works. Wonder if someone complained?

From Time magazine: A mother’s tips on how parents can support their “typically developing” kids. Amy Lennard Goehner is writing from the perspective of a mother of a child with autism, but her sage advice can be used across a wide range of disabilities. Among her tips:

• Explain the disability to the typical kids, and make it part of the ongoing discussion within the family.
• Acknowledge that any feelings kids have about their siblings, including negative ones, are understandable and acceptable.
• Introduce typical kids to other children who have siblings with disabilities.
• Give them strategies for playing with their disabled sibling.
• Don’t put the typical sibling in charge of handling problem behaviors.
• Create private time with your typical child every week
• Encourage honesty, and have a sense of humor.

The good news, Goehner says, is that typical siblings often turn out to be more compassionate and caring than average.
Thanks a million to Cindy Simon for sending this my way!