The Maryland Assistive Technology Network

The Maryland Assistive Technology Network (MATN) is a premier professional learning network which connects educators, families, and educational leaders engaged in improving learning and teaching through the effective use of assistive and universally accessible technologies in education. MATN is a service of the Johns Hopkins University, Center for Technology in Education (JHU CTE). MATN membership is free and open to all.

By becoming a member of their online community, you exchange ideas, questions and recommendations with educators, families, researchers, leaders and policy makers around assistive technology tools, services, and processes. This vibrant network strives to help support individuals’ learning and independence.

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Transition to Washington centers around son with Down syndrome

FROM THE WASHINGTON POST Barry and Kim Trotz figured familiarity could guide their youngest child through the biggest change of his life, so first they made sure to find 13-year-old Nolan a decent Tex-Mex restaurant. On the eve of Washington Capitals training camp, the final day of the offseason, the family dined at El Paso Cafe in Arlington, where Nolan had grown to love the salsa during their regular stops since moving here this summer.

“He’s a staple guy,” Barry Trotz says of his son, who was born with Down syndrome. But the new Capitals head coach also knows Nolan as many other things: a fearless adventurer, a strong swimmer, an ace at Wii baseball, a lover of spicy foods, a flirt around his sister’s friends and a prankster at dinner parties, a kid whose smile made hockey losses feel okay.

Raising a special needs son, the Trotzes usually worry about not doing enough, but in their new city, they lately have been feeling like they have too much piled on their plates.

They picked their Clarendon home based on Nolan’s needs, and at first it seemed ideal: grassy parks down the block, middle school within biking distance (either Barry or Kim steering the family tandem and Nolan riding in back), neighboring adults who invited them to an ice cream party and whose daughters knocked on the front door to invite Nolan to play kickball.

“Which never happens when you have a special needs kid,” Barry said.

But summer soon ended. No more knocking, no more kickball. Then school started, and Nolan’s teacher was great, but a new environment with less individual attention led to acting out in class. At home, Nolan had grown quieter since the family completed its move in late August. Vocalizing his feelings had always been a struggle, a product of his condition.

“I wish we could get in there for a couple minutes,” Kim said, meaning Nolan’s thoughts.

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Think College

Think College is a national organization dedicated to developing, expanding, and improving inclusive higher education options for people with intellectual disability.  With a commitment to equity and excellence, Think College supports evidence-based and student centered research and practice by generating and sharing knowledge, guiding institutional change, informing public policy, and engaging with students, professionals and families.

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NYT: Down Syndrome and Quality of Life, continued

Letters to the editor.

Re “The Truth About Down Syndrome,” by Jamie Edgin and Fabian Fernandez (Op-Ed, Aug. 29):

Two and a half years ago, I had the very choice the biologist Richard Dawkins and others deem so simple. Continue my pregnancy with a Down syndrome fetus, or terminate? I was 37, happily married, with one nondisabled child.

I have a Harvard degree and a graduate degree, and somehow the utilitarian calculus Mr. Dawkins cherishes (not to mention notions of what might happen 40 or 50 years down the line) provided zero assistance in that moment.

It was simply: Do my husband and I feel able to care for a child with a lifelong disability, whose severity we cannot determine but who will most certainly be significantly compromised? Who will also be able to love and be loved, and achieve within the limitations we all bear?

We went ahead, and I can only say our son has healed the doubt and fear in our hearts.

RACHEL SIEGEL

Great Barrington, Mass., Aug. 29, 2014

 

To the Editor:

Jamie Edgin and Fabian Fernandez write that virtually all children with Down syndrome will develop Alzheimer’s disease later in life. They write about this probability as if it were a mosquito bite, not the exhausting, nightmarish and costly situation that it is, with no upside whatsoever.

This occurs when the “child” is 40, and the parents, therefore, in their 60s or 70s, and badly in need of rest and time for themselves.

The “truth” about Down syndrome and dementia is that when you are faced with them, you deal as best you can, but you should not be talked into choosing them if it’s possible to make another decision for yourself and your child.

SUE W. RANSOHOFF

Cincinnati, Aug. 29, 2014

To the Editor:

As a mother of two children with Down syndrome and a concerned citizen, I question the wisdom of trying to predict quality of life based only on someone’s genes. Jamie Edgin and Fabian Fernandez carefully made the point that having Down syndrome does not hamper the ability to lead a happy, fulfilling life.

To be sure, not every person with Down syndrome is a happy person leading a rewarding life. There are grumpy, poorly behaved people with Down syndrome. There are plenty of those in the general population, too. The truth about people with Down syndrome is that they are individuals; most are happy, some are sad, some are smart, others not so much. They all add value and diversity to our society.

Now, when their existence is under severe threat because of advances in prenatal screening, I applaud every effort to underline the positive facts about living with Down syndrome.

RENATE LINDEMAN

Heiloo, the Netherlands, Sept. 1, 2014

 

To the Editor:

While I respect Richard Dawkins’s expertise and scholarship on Darwin and evolution, I take issue with his views on Down syndrome.

My son, Jason Kingsley, who has Down syndrome, has co-written and published a book (“Count Us In: Growing Up With Down Syndrome”); plays the piano and violin; paints, lives and works in the community; and recently performed as Snug the Joiner in a New York City performance of “A Midsummer Night’s Dream.”

While not all people with Down syndrome will achieve at this level, it is not possible to predict at birth, and certainly not prenatally, what their level of accomplishment will be.

What is safe to say, however, is that my son will never be the chief executive of a large corporation who remorselessly cheats millions of people out of their life savings. He will never be a lawmaker obstinately determined to obstruct progressive legislation.

I question who brings more suffering into the world.

EMILY PERL KINGSLEY

Briarcliff Manor, N.Y., Sept. 2, 2014

The writer is a member of the advisory board of the National Down Syndrome Society.

original article

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

The Arc of Southern Maryland presents the 2014 Sprout Film Festival

The annual film festival, co-sponsored by the College of Southern Maryland, will be held Oct. 10, 2014 at 6 p.m. on the Prince Frederick Campus, Building 2, 115 J.W. Williams Road, Prince Frederick.

The family-friendly films include artistic short films, documentaries and features designed to inspire,and raise awareness about people with developmental disabilities using the medium of film. The evening includes a reception, with light refreshments provided. $20 at ticket.

Sponsorship opportunities available. For information on sponsorship or about the film festival contact 410-535-2413, Ext. 113 or development@arcsomd.org. click here for details