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!

From New York Magazine, the New York Times:

Filmmaker Lizzie Gottlieb spent six years making “Today’s Man,” a documentary about her brother Nicky, who was diagnosed with Aspberger’s syndrome at the age of 20. Now 29, Nicky is depicted as highly intelligent but socially inappropriate, aware of his disability but unable to modulate its effects.

The film documents Nicky’s quest to hold a job, get an apartment and make friends. It also muses on what will happen to Nicky and Lizzie upon the death of their parents, former New Yorker editor in chief Robert Gottlieb and actress Maria Tucci.

(more…)

‘Why can’t they fix it?’ Saving my little brother

Writing in the Washingtonian, Denise Kersten Wills seeks to come to terms with her brother’s cystic fibrosis and to accept the fact that scientists can’t seem to cure it. She wonders how much to push him to control his disease, and how much she should let go.

In an elementary school science class, Denise had been told that most people with CF died before they reached adulthood. Peter is 28 now, a lawyer who works at a bank, and gives the appearance of being pretty healthy except for a chronic cough. But Denise finds out that he’s lost almost half of his breathing capacity, and he’s not doing everything he could to manage his disease.

(more…)

He’s a cute, sweet, happy toddler — with Down syndrome. A generation ago, he’d probably be growing up in an institution — but today his world is open.

Parenting Magazine visits with a Nashville couple whose youngest son was diagnosed with Down syndrome in the delivery room right after birth. Lisa and Mike Spellman, respectively an attorney and a neuroradiologist, discuss their initial grief and their journey toward accepting their son’s diagnosis and celebrating him as a unique personality and vital member of their family.

Lisa remembers that after Anthony was born, the mom of a child with Down syndrome told her, “I know the deep, dark place you’re in right now, and you’re not going to be there forever.” That prediction has come true.

“Anthony completes our family, and I wouldn’t have him any other way,” says Lisa. “He’ll be teaching us all our lives — he’s already taught me so much about patience. I see how hard he works to sit up, or to reach out for a toy, or to get up on all fours.

“You take for granted how easily things come to you, and to your other kids, but every day with Anthony, there’s a new discovery, a new joy.”

From the [UK] Guardian:

A new online service in the UK, launched by the charity Rethink, aims to put siblings of people with mental illness in touch with each other, providing needed support and reducing feelings of isolation.

The service will have dedicated pages on Rethink’s website, will incorporate a catalogue of common questions and answers from siblings, and an online forum, where support and advice can be shared. There will be a weekly blog, which is expected to be up and running in the next couple of weeks.

Sarah Gibson, director of membership at Rethink and responsible for running the siblings’ project, says it is difficult to estimate how many people will use the service, but that it sends a clear message. “It says: ‘You are not alone.’ It says it is important [for siblings] to take care of themselves too,” she explains.

More details at rethink.org/siblings

From the Grand Rapids [Michigan] Press:

Students with disabilities are teaming up with their nondisabled peers at Jenison High School outside Grand Rapids to produce “The Jellybean Conspiracy Show.” The play is designed to recognize and celebrate the gifts of all young people, including those with developmental disabilities.

Among the featured performers are Wesley Talsma, a young man who is described as “one of the school’s more severely impaired students” and his younger sister Alisha (left). Alisha reads a poem that talks about having a sibling who is stared at, teased or frustrated. The poem made her cry when she read it at auditions.

“It’s not so much that he’s been teased by people,” Talsma said. “It’s more that he’s not ever going to drive a car or go to college or get married. It’s part of life when you grow up, but not for him. It’s really hard.”

Other performers with disabilities participate by playing air guitar, lip synching and dancing.

More information about the Jellybean Conspiracy Show is available here. An excerpt from the show’s website:

Thousands of children and young adults in our schools are marginalized because of their mental, emotional, and physical disabilities. Their peers often feel embarrassed and insecure around them — thus increasing the sense of loneliness and dis-empowerment. A 2000 study in Qualitative Health Research reported that adolescents with disabilities often describe themselves as lonely and are often more concerned with their lack of social acceptance than they are with their disabilities.

Jellybean uses theater to change attitudes towards children and young adults with disabilities and increase natural supports for them in the community.

Teens talk candidly about growing up with a sibling who has special needs.

Twenty teenagers and young adults in the Minneapolis area have teamed up to produce a book about growing up in households with a sibling with special needs. “”Who Asked Me: A Journal of Discovery and Sharing By and For Siblings of People with Developmental Disabilities” is an attempt to present their lives honestly, from their own point of view. Among the topics covered are admiration for their siblings, impatience with people who use the word “retard,” embarrassment, and worries about adult responsibilities.

Mostly … the siblings wrote about love, complicated though it may be. The teens … agreed that their lives have been enriched, not cheated, by having these siblings.

One lovely example: “My brother,” wrote Tess Hayes, 14, whose older brother Brett has Ring 22 syndrome, “is an inspiration not only to me, but to every individual that has the amazing chance to meet him. I just hope that I, too, might one day live life as fully as my brother does, for that is truly a gift.”

The book is available here. Tips on strengthening sibling relationships are here.

From the Minneapolis Star-Tribune.