NYT: A Couple Gaining Independence, and Finding a Bond

EAST PROVIDENCE, R.I. — A Sunday wedding that was months away, then weeks away, then days away, is now hours away, and there is so much still to do. The bride is panicking, and the groom is trying to calm her between anxious puffs of his cigarette.

Peter and Lori are on their own.

With time running out, they visit a salon to have Lori’s reddish-brown hair coiled into ringlets. They pay $184 for a two-tier cake at Stop & Shop, where the checkout clerk in Lane 1 wishes them good luck. They buy 30 helium balloons, only to have Peter realize in the Party City parking lot that the bouncing bobble will never squeeze into his car.

Lori, who is feeling the time pressure, insists that she can hold the balloons out the passenger-side window. A doubtful Peter reluctantly gives in.

“I’ve got them,” she says. “Don’t worry.”

Peter Maxmean, 35, and Lori Sousa, 48, met five years ago at a sheltered workshop in North Providence, where people with intellectual disabilities performed repetitive jobs for little pay, in isolation. But when a federal investigation turned that workshop upside down last year, among those tumbling into the daylight were two people who had fallen in love within its cinder block walls.

Continue reading NYT: A Couple Gaining Independence, and Finding a Bond

NYT: When the Caregivers Need Healing

“This has happened before,” she tells herself. “It’s nowhere near as bad as before, and it will pass.”

Robbie Pinter’s 21-year-old son, Nicholas, is upset again. He yells. He obsesses about something that can’t be changed. Even good news may throw him off.

So Dr. Pinter breathes deeply, as she was taught, focusing on each intake and release. She talks herself through the crisis, reminding herself that this is how Nicholas copes with his autism and bipolar disorder.

With these simple techniques, Dr. Pinter, who teaches English at Belmont University in Nashville, blunts the stress of parenting a child with severe developmental disabilities. Dr. Pinter, who said she descends from “a long line of the most nervous women,” credits her mindfulness practice with giving her the tools to cope with whatever might come her way. “It is very powerful,” she said.

All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future — all of it can be overwhelming.

“The toll stress-wise is just enormous, and we know that we don’t do a really great job of helping parents cope with it,” said Dr. Fred R. Volkmar, the director of Child Study Center at Yale University School of Medicine.

“Having a child that has a disability, it’s all-encompassing,” he added. “You could see how people would lose themselves.”

But a study published last week in the journal Pediatrics offers hope. It found that just six weeks of training in simple techniques led to significant reductions in stress, depression and anxiety among these parents. Continue reading NYT: When the Caregivers Need Healing

WashPost: Coping with adult children’s autism, parents may face ‘least bad’ decisions

Adult twins with autism locked in a barren basement room every night. No lights. No bed. Their parents charged with abuse.

The criminal allegations against Janice and John Land that erupted last week in Montgomery County have captured the attention of many — but no group more so than other parents who are caring for the growing number of autistic children entering adulthood.

“We can’t condone their choices,” says Mark Bucknam, a professor at the National War College who lives two miles from the Lands. Court papers say that the young men were kept in a room with no working lights and a comforter on a bare tile floor.

“But it’s possible that, in their minds, this was the least bad way to deal with this,” Bucknam says.

As he speaks, his 18-year-old son John starts to pace and moan in the kitchen. John typically won’t sit down for dinner until he and his parents are around the table, holding hands, his father saying the blessing. Mark walks toward the kitchen, past the locked front door, the locked door to the garage, the locked door to the basement. Those barriers, along with a tracking device John wears, the burglar alarm and the fence around the house, are designed to keep him from wandering off.

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Montgomery County Transitioning Adults (MCTrans)

Montgomery County Transitioning Adults (MCTrans) is a grassroots discussion and e-group for families of adults with mild to significant disabilities as they transition from School age entitlements in Maryland to a young adulthood and beyond.

Members are to include the adults with the disability, their families as well as interested professionals working in pre- and post-transitioning services. Purpose is to share information, provide each other support, and work to improve services and outcomes for adults with disabilities in the State of Maryland.

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“Deciding for Herself – a Family for Jenny”

Born with Down Syndrome, Jenny Hatch, 29, went to court to emancipate herself from a group home. Along the way, she found the place where she belongs.

Here is an article on Jenny in People Magazine, showing us what self-determination and supported decision-making look like: they look like LIFE!


Bursting through the front door of the Village Thrift store in Newport News, Va., Jenny Hatch greets her coworkers with shouted hellos and hugs. Though it’s her day off, Jenny, 29, who has Down syndrome, can’t stay away. “I love my thrift store,” she says of the shop co-owned by Jim Talbert and fiancée Kelly Morris. Walking to the back office, the petite honey-haired young woman with the sunshine grin settles down at the computer and pulls up a video on YouTube, watching news footage of a court decision she has viewed hundreds of times before. “I watch it every day,” she says. “It was a happy day.”

Continue reading “Deciding for Herself – a Family for Jenny”

TRIBES, by Nina Raine. Directed by David Muse.

At The Studio Theatre – extended through March 2nd.

Billy was born deaf into a garrulous academic family who raised him to lip read and integrate into the hearing world. When he meets Sylvia—who’s going deaf herself—Billy decides it’s time to speak on his own terms, sending shock waves through the family.

Playing out in sign language, argument, music, and mesmerizing silence, this sophisticated drama examines family, belonging, and the limitations of language. See the Tribes trailer andinvitation to see the play from James Caverly, playing Billy.

“The best-written, best-plotted, deepest, most daring—and funniest—new play in recent years.” —The Wall Street Journal

Click here for details.

Disabled couple seeks life together in group home

[from the Washington Post (May 7, 2013)]

PORT JEFFERSON, N.Y. (AP) — With the beaming smiles of newlyweds, Paul Forziano and Hava Samuels hold hands, exchange adoring glances and complete each other’s sentences. Their first wedding dance, he recalls, was to the song “Unchained …” ”Melody,” she chimes in.

They spend their days together in the performing arts education center where they met. But every night, they must part ways. Forziano goes to his group home. His wife goes to hers.

The mentally disabled couple is not allowed to share a bedroom by the state-sanctioned nonprofits that run the group homes — a practice the newlyweds and their parents are now challenging in a federal civil rights lawsuit.

“We’re very sad when we leave each other,” Forziano says. “I want to live with my wife, because I love her.”

The couple had been considering marriage for three years before tying the knot last month, and they contend in their lawsuit that they were refused permission from their respective group homes to live together as husband and wife. The couple’s parents, also plaintiffs in the lawsuit, said they have been seeking a solution since 2010.

“It’s not something we wanted to do, it’s something we had to do,” said Bonnie Samuels, the mother of the bride. Continue reading Disabled couple seeks life together in group home