WPOST: Shari Gelman, who started Ivymount School for children with disabilities, dies at 88

 By Megan McDonough, Published: April 29

Early in her teaching career, Shari Gelman was asked to work as a substitute at a Montgomery County preschool for children with developmental, intellectual and cognitive disabilities. She was nervous, she recalled, and told the director she had no experience with special-needs kids.

“Hey, they are children,” the director said. Mrs. Gelman soon reported for work.

“I went in, and the first day I was there I was absolutely blown away,” she once told an interviewer. “There were several children with autism — although we were not calling it this very often at that time — and a couple with Down syndrome and a mixture of disabilities. I came home, and I was devastated in terms of how parents handled this at home and how difficult it must be.”

At the time, there was a lack of such programs in the public school system — and almost none that offered learning opportunities for children who had multiple disabilities. It would be at least 20 years before federal law required schools to provide appropriate special education and related services for children with disabilities.

For Mrs. Gelman, who died Tuesday at age 88, working at the nursery school was the spark that led her to start what is now the Ivymount School, one of the earliest and best-regarded Washington area educational centers for students with complex learning, language, physical or emotional disabilities.

Mrs. Gelman started the school in 1961 in the educational building at Christ Lutheran Church in Bethesda. She called it the Christ Church Child Center, and she was the sole staff member, serving in a dual role as teacher and director. There was one student and his educational aide.

Under her direction, the school gradually enlisted a wide array of specialists, including behavioral, language, art, music and dance specialists, to meet the complex needs of its students.

“Kids could get everything in one place, including speech, occupational and physical therapy,” Lillian Davis, the school’s former assistant director, said in an interview with The Washington Post.

“If there was a group that didn’t have their needs being met, that is where we could really be of service,” Mrs. Gelman said in a 2010 history of the school.

Over time, local public school systems began referring special-needs students to Christ Church Child Center. To meet the increasing demand, the school had to borrow space from several other Montgomery County churches before the program was consolidated into one building and given a permanent home at the old Georgetown Hill Elementary School site in Rockville in 1985. It was renamed Ivymount.

“I always thought we were on the cutting edge. Lots of times we would originate programs that did not exist and I think other places were playing catchup,” Mrs. Gelman said in the school history. “Many times, I think we were one of the first to develop these kinds of programs.”

The school expanded its programming to meet the constantly changing needs of its growing student population and eventually increased the student age limit from 12 to 21.

“The teachers here look at the children as individuals,” Dorothy Burger, a mother of a student at the school, once told The Post. “They make the program work for the child rather than have the child fit into the program.”

By the time Mrs. Gelman retired in 1997, the school had grown to 140 students and more than 100 staff members. More than 1,500 students have graduated from Ivymount since its establishment.

The school twice received the Blue Ribbon, the highest academic honor the U.S. Department of Education can bestow on a school. Mrs. Gelman also received The Post’s Distinguished Education Leadership Award in 1991.

“Shari was one of the most empathetic people I have ever met. She would feel what the kids were feeling and what the parents were feeling,” Davis told The Post in a recent interview. “I don’t think she ever met a kid she didn’t like and couldn’t help.”

Shari Miriam Einfrank was born Dec. 30, 1925, in Passaic, N.J. She was a 1947 graduate of New Jersey State Teachers College at Jersey City, now New Jersey City University. In 1957, she received a master’s degree in human development from the University of Maryland.

She served on the board of the Jewish Foundation for Group Homes and numerous summer programs and recreational programs for children with disabilities. She chaired the special needs committee of the Jewish Community Center of Greater Washington in Rockville and was a member of the Advisory Board of Potomac Community Resources.

Her husband of 66 years, Robert Gelman, died in 2013. Survivors include two children, Ona Bunce of Bethesda and Morris Gelman of Falls Church; and two grandsons.

Mrs. Gelman, a longtime Bethesda resident, died at a continuing care center in Bethesda of complications of lymphoma, said her daughter.

Her impressions the first day of substitute teaching would stay with her and motivate her career educating students with disabilities. As she recalled in 2010, “I woke up the next day, and said, ‘If I’m not going to do it, who is going to do it?’ ”

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Disability Rights International


[from their site] “Our Worldwide Campaign to End the Institutionalization of Children seeks to draw attention to, and end,  the pervasive and abusive practice of institutionalizing children with disabilities.

Disability Rights International was established in 1993 by attorney Eric Rosenthal.  Based in Washington DC, Disability Rights International documents human rights abuses, publishes reports on human rights enforcement, and promotes international oversight of the rights of people with mental disabilities.

Children are the most vulnerable members of any society. Founded by DRI President Laurie Ahern, our Worldwide Campaign to End Institutionalization of Children fights to protect children suffering today and seeks to stop the next generation of children with disabilities from ever being locked away and forgotten.

Drawing on the skills and experience of attorneys, mental health professionals, human rights advocates, people with mental disabilities and their family members, Disability Rights International trains and supports advocates seeking legal and service system reform and assists governments in developing laws and policies to promote community integration and human rights enforcement for people with mental disabilities.

The organization is forging new alliances throughout the world to challenge the discrimination and abuse faced by people with mental disabilities, as well as working with locally based advocates to create new advocacy projects and to promote citizen participation and human rights for children and adults.”

visit the site

“WE CONNECT NOW”

From their website: “We Connect Now is dedicated to uniting people interested in rights and issues affecting people with disabilities, with particular emphasis on college students and access to higher education and employment issues.

One of the goals of this site is to help college students with disabilities to succeed in their studies by getting the information and support they need, both through resources, linksblogs, latest news, studying existing laws and regulation and through personal contacts.

Through this website people can also share and read other people’s stories as a source of support and comfort. We also want people using our webpage to take action by writing blogs, hosting an event or becoming involved in politics by knowing about upcoming legislation.  

Also, every month our webpage will focus on a particular disability or condition to bring our visitors more information and support related to our focus of the month. Through our jobs section, we also hope to help empower people with disabilities find employment through job posting and job searching tips, and  if people have any questions we encourage them to contact us. The goal of this site is that people leave it having gained knowledge, a support system and having taken action. “

Visit the site.

WPOST: Parents build long-term house for disabled sons

By Beth Herman, Published: April 4

Andy and Jennifer Cibula spent 10 years planning and building their new home in Oakton, with two objectives: to design it so that their two young disabled sons can grow up and live there with a caregiver long after they are gone. And that it not aesthetically announce that anyone disabled lived there.

When the family moves in later this spring, the $2 million, 7,000-square-foot contemporary-style residence will feature cutting-edge technology. Joshua, 16, and David, 12, will be able to use iPads to call for Mom or to raise the blinds or to play Taylor Swift. The cabinets will be able to move up and down. Touchless faucets will compensate for dexterity issues. And the security system will alert the Cibulas if one of the boys gets up and doesn’t return to bed. Even the warm-water dog wash outdoors will be at wheelchair level for the family’s anticipated service dog.

The house will allow the boys to avoid ending up in an institution, the fate of many disabled adults.

Continue reading WPOST: Parents build long-term house for disabled sons

WPOST: Girl sentenced to juvenile facility for assaulting autistic boy in Southern Maryland

By Ian Shapira, Published: April 24

Before she was sentenced Thursday to a maximum of six years in a state juvenile detention center, the 15-year-old assailant of an autistic boy in Southern Maryland pleaded for leniency. The girl, who had used her cellphone to record the abuse, asked a St. Mary’s County judge if she could avoid jail and instead be placed in a community-based treatment program.

But Judge Michael Stamm sternly rejected the Chopticon High School student’s request, declaring that her actions and those of her accomplice — which included luring the autistic 16-year-old onto a frozen pond, where he fell in multiple times, and encouraging him to try to have sex with his family’s dog — were “horrific.” The 15-year-old, he said, posed a danger to the community.

Continue reading WPOST: Girl sentenced to juvenile facility for assaulting autistic boy in Southern Maryland

NPR: Subminimum Wages For The Disabled: Godsend Or Exploitation?

STEVE INSKEEP, HOST:

For more than a year now, President Obama has been calling on Congress to increase the minimum wage.

PRESIDENT BARACK OBAMA: It’s time for 10.10. It’s time to give America a raise.

(APPLAUSE)

INSKEEP: The president recently signed an executive order making $10.10 per hour the minimum that workers employed by federal contractors can be paid. That includes disabled workers. Those workers can legally be paid just pennies per hour when they work at what are called sheltered workplaces.

RENEE MONTAGNE, HOST:

For some, sheltered workshops are a godsend, providing the disabled with opportunities that might not otherwise exist. For others, they’re an example of good intentions gone wrong.

NPR’s Cheryl Corley reports.

CHERYL CORLEY, BYLINE: It’s not unusual these days to see a developmentally disabled worker at a grocery store or restaurant as more of the disabled get jobs in the community, but many thousands more work at sheltered workshops like this one.

GUS VAN DEN BRINK: We’ll walk around. You can see some of the jobs that we do.

UNIDENTIFIED WOMAN #1: Hey, Gus.

BRINK: Hi. How are you doing?

CORLEY: Gus van den Brink heads the Sertoma Centre, an agency providing programs and training for the developmentally disabled. He greets workers here who are packaging bottles that will be shipped off to a microbrewery.

BRINK: We do 100 percent quality control. The supervisor in the area is always checking the work when they’re finished with it.

CORLEY: Sertoma Centre, located in Chicago’s south suburbs, started off as a sheltered workshop, providing employment opportunities to the disabled by getting subcontracting jobs. These days, about 250 people work here. Their pay is regulated by the Fair Labor Standards Act of 1938. The law was originally created to encourage hiring veterans with disabilities. It allows companies, including some federal contractors, to pay subminimum wages based on how productive a person with disabilities is compared to a non-disabled worker doing the same task. Continue reading NPR: Subminimum Wages For The Disabled: Godsend Or Exploitation?

WPOST: Once in limbo, promising Duchenne muscular dystrophy drug back on track toward approval

By 

For much of last fall and winter and into this spring, scientists at the Food and Drug Administration wavered over what to do about a potential new drug to slow the progression of­­ ­Duchenne muscular dystrophy, a devastating disease that overwhelmingly affects boys, leaving most in wheelchairs by their teens and dead in their 20s.

In a clinical trial involving 12 boys, the drug appeared to have halted physical decline. That gave hope to parents desperate for a treatment, but regulators expressed skepticism about the reliability of the study’s results.

Convinced that this drug could succeed where others had failed, the families of patients mounted an aggressive campaign to pressure the FDA. They argued that it was up to the agency to decide whether their sons would be the last generation of boys to die from Duchenne, or the first to survive. They hired a public relations firm and bombarded Facebook and Twitter, posted online YouTube videos of boys benefiting from the drug, rounded up more than 100,000 signatures for an official White House petition, visited lawmakers on Capitol Hill and made their case to top FDA officials in a series of face-to-face meetings.

Continue reading WPOST: Once in limbo, promising Duchenne muscular dystrophy drug back on track toward approval

WPOST: Parents of autistic children fear their children being bullied — for good reason

By Petula Dvorak, Published: April 24

Ellen Murray cheats at games. She swindles, hoodwinks and tricks the kids she is playing with. And then she has to explain to them what just happened.

“They will always let me take their turn, again and again,” said Murray. “And we have to teach them to stand up for themselves.”

Murray is a clinical manager at the Center for Autism and Related Disorders in Alexandria. She works with children who have been diagnosed with autism, and the number one concern that parents want her to address is that their vulnerable, trusting children will be taken advantage of.

“That’s the biggest fear — the bullying,” she said.

So imagine how alarming it is for those parents to hear about the case of an autistic boy at Chopticon High School in Southern Maryland who was allegedly bullied and assaulted by two teenage girls. Among the alleged incidents recorded on a cellphone: a knife being held to the 16-year-old’s throat, his repeated falls through an icy pond after he was encouraged to fetch a basketball and his efforts to have sex with his family’s dog at the behest of two girls he considers his friends. In fact, the boy told The Washington Post’s Ian Shapira that he forgives the girls, wants the charges dropped and doesn’t think they meant any harm.

One of the girls, who is 15, pleaded guilty to second-degree assault and was sentenced Thursday to a juvenile lockdown facility for a maximum of six years. The other girl, 17-year-old Lauren A. Bush, has been charged as an adult with first-degree assault, child-pornography solicitation and false imprisonment and, if convicted, faces up to 80 years in prison.

Continue reading WPOST: Parents of autistic children fear their children being bullied — for good reason

L’Arche – Holy Thursday: This I Understand

Eileen Schofield washes Kara Downey's feet. Photo by Brian A. Taylor Photography

“I loved that this was a part of the faith that I really thought I understood.

Do this.  Wash each other’s feet.

And then I moved into L’Arche.  And it made even more sense to me.  We literally wash each other’s feet.  That is a part of my job.

Footwashing is also significant part of L’Arche’s spiritual life.  About once a year, we have a footwashing liturgy where we love, affirm, and pray over each other, washing each other’s feet.

This past summer at our footwashing liturgy, D. was sitting next to our housemate W., with whom she has lived for about ten years.  W. speaks Spanish and uses wheelchair, and needs the most physical assistance of the core people in our home.

Just to paint a picture for you, W. demands that he never leave the house without a hat and a shirt with at least two pockets, in order store the pens that don’t fit in the bag of pens he carries around with him.  He will always ask new people the same two questions:  “How many siblings do you have?” and “Do you speak Spanish?”

As opposed to words, he will most often “purr” – a noise specific to W. that we have come to understand as his way of communicating contentment.  W.’s room, where he listens classical music and plays with his wooden blocks for hours, is the most peaceful place in our home.

We put the basin on W.’s lap and helped D. to get her feet up there.  And W., a friend who we help through every step of care throughout the day, washed and dried D.’s feet.

It was a little clumsy, his hands are not the most agile.  But it was so tender. And then D., whose hands shake a lot of the time but is one of the most faith-filled women that I know, leaned over and held his hands and prayed with him, asking God for W.’s health and happiness.

This I understand.”

Names of the core people are shortened to initials in this story to protect their privacy.

Sarah Ruszkowski is the home-life leader at Ontario House in D.C. Photo by Brian A. Taylor Photography

PBS: Portrait of a dyslexic artist, who transforms neurons into ‘butterflies’

After completing a fellowship at the National Institutes of Health, artist Rebecca Kamen has transformed her discussions with neuroscientists into abstract sculptures, such as this close-up view of “Butterflies of the Soul.” (Image courtesy of Rebecca Kamen.)

Rebecca Kamen’s sculptures appear as delicate as the brain itself. Thin, green branches stretch from a colorful mass One of Kamen's influences is the writing of Santiago Ramon y Cajal, who is called the "father of modern neuroscience." Cajal once said: “Like the entomologist in search of colorful butterflies, my attention has chased in the gardens of the grey matter cells with delicate and elegant shapes, the mysterious butterflies of the soul, whose beating of wings may one day reveal to us the secrets of the mind."  of vein-like filaments. The branches, made from pieces of translucent mylar and stained with diluted acrylic paint, are so delicate that they sway slightly when mounted to the wall. Perched on various parts of the sculpture are mylar butterflies, whose wings also move, as if fluttering.

One of Kamen’s artistic influences is the writing of Santiago Ramon y Cajal, who is called the “father of modern neuroscience.”

The work, called “Butterflies of the Soul” was inspired by neuroscientist Santiago Ramon y Cajal, who won the 1906 Nobel Prize, for his groundbreaking work on the human nervous system. Kamen’s sculpture is a nod to his work and the development of modern neuroscience. Cajal’s observation of the cells under the microscope radically changed how scientists study the brain and its functions, Kamen said. And the butterflies in her sculpture represent Cajal’s drawings of Purkinje cells, which are found in the cerebellar cortex at the base of the brain.

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