Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Can I Sit Here, Walk Here, How About Here?

Excerpt from: Planet of the Blind (click for full article)

 

Take a look at "Bad Cripple's" take on the recent story of the waiter who defended a boy with Down Syndrome. (For a link to that story click here: http://www.nytimes.com/2013/01/26/opinion/a-child-with-down-syndrome-keeps-his-place-at-the-table.html?_r=1&)

BC's piece incorporates his (and my) recent difficulties while dining out. Space, welcoming space is still all too provisional for people with disabilities.

Glen Ellyn disabilities advocate to appear with son on TV news program

Excerpt from: mysuburbanlife.com (click for full article)

 

Longtime disabilities advocate and Glen Ellyn resident Marjorie Sullivan Lee will appear with her son Kevin during a program on ABC Channel 7 Thursday.

Sullivan Lee is the author of the 2012 book “Bloom Where You Are Planted,” which discusses her experiences raising and advocating for her son with Down syndrome....

Waiter Praised For Refusing To Serve Family Who Insults Child With Down Syndrome

Excerpt from: The Consumerist (click for full article)

 

When a story about a waiter refusing to serve customers starts picking up steam online, it usually involves people rushing to insult the server and his employer. But this is story is getting quite the opposite response from the public.

The Houston Chronicle’s 29-95.com shares the story of an area woman who had gone to a local steak restaurant with her son, who has Down Syndrome.

“A family of 4 asked to be moved from the booth next to us,” writes the mom. “I didn’t think that much about it but shortly after they left the restaurant entirely, glancing at our table as they left.”

The mom says she thought she was being paranoid about getting the stink-eye from the exiting diners. But she was right.

She says she learned this family had told the waiter that “Special needs kids should be kept in special places.” At that point, the waiter apparently told the customers that he was offended and would not serve them.

Research on Muscle Weakness in Down Syndrome

Excerpt from: Your Therapy Source (click for full article)

 

A recent research study using a mouse model was published in the American Journal of Physiology - Regulatory, Integrative and Comparative Physiology comparing the soleus muscle in mice with Down syndrome and mice without Down syndrome.

The results indicated that there was not a significant difference between the two groups of mice with regards to the force production of the muscle, muscle fatigue and muscle fibers.  There was not a clear indication of mitochondrial limitation between the two groups either.

There was a significant difference in muscle recovery between the two groups.   There was also  numerous altered pathways in Down syndrome muscle including the breakdown of proteins, metabolism of glucose and fat, and neuromuscular transmission.

The researchers concluded that the muscle itself is not responsible for muscle weakness in mice with Down syndrome and the perhaps the motor systems in the brain or the neuromusclar junction play a role in muscle weakness in Down syndrome. 

Developmentally disabled cut apron strings

Excerpt from: Union Bulletin (click for full article)

 

“At the end of the day, they’re really just two guys living in this house.”

With a broad smile and upturned palms, Jim Hough characterized the situation in the East Walla Walla home shared by his brother, Brian Hough, and Mark Nibbler.

“They want to hang out in their boxers, be on their computers and eat chili mac. It’s not just disability guys doing that. You have laundry on the floor (to be sorted) and the category is ‘dirty.’ Sorting is unnecessary. They’re guys.”

Despite Jim’s summation, the house of two young men living with developmental disabilities is remarkably tidy and not on just this day, moms Carla Nibler and Teri Hough agreed, nodding heads at one another.

Brian’s obsessive-compulsive disorder — one component of his disability — helps keep a tight ship, both environmentally and socially, even when he tries to over-manage his housemate’s life.

In turn, Mark’s knack of letting things roll off his back adds a calming influence. And, at the end of the day, the longtime friends make this experiment sustainable, their mothers agree.

As head of Walla Walla County’s Developmental Disabilities office, Hough encourages families to plan for the future and what it will look like for their disabled son or daughter. “I talk about ways to live independently. There are all kinds of ways to do so and we want people to think about doing it. And be creative.”

It was the logical move for his brother, Jim said. “Moving out isn’t just about living away from your parents, it’s about getting out and doing things.”

Parents create housing community for adults with developmental disabilities

Excerpt from: ABC News (click for full article)

 

More than a decade ago, Jim and Sandy Hembd, who are in their 70’s, faced the serious question of who would care for their sons after they passed away. Mike and Mark Hembd are 44-year-old twins with Down Syndrome.

"They have always lived with us," said Sandy Hembd. "We've had an amazing run with them. It's been pure joy."

What wasn’t a joy for the Hembd’s was searching for an assisted living facility where the boys could live when their parents are no longer around to care for them.

"Colorado is 47th in the nation for services for people with developmental disabilities,”"said Sandy Hembd. "So, the amazingly long waiting list for residential care was a motivating factor in and of itself. When we started looking around, we couldn't find what we really wanted, so we decided, 'We are it. We're going to have to do this.'"

Tablet technology gives independence to adults with disabilities

Excerpt from: Suburban Journals (click for full article)

 

John Ditch had no idea the tablet device he bought for gaming would end up a life-changing tool for a man with Down syndrome.

Ditch, who is the guardian of Dale Holt, 48, brought the tablet along on a visit to Holt, who immediately took to the device, which can be operated with a simple swipe or tap to the screen. 

"He's always liked looking at magazines and turning pages, which is exactly what you do on a tablet," Ditch said.

Seeing Holt navigate it with ease, Ditch decided to save some family photos and video of Holt's favorite Johnny Cash tracks on the device. Holt was displaying early signs of Alzheimer's disease, and Ditch thought showing Holt the media regularly would be a good way to jog his memory and keep his mind sharp. So far, it appears to be doing just that.

In Florida, Garrett Holeve, MMA fighter with Down syndrome, on his way to changing sport

Excerpt from: Media dis&dat (click for full article)

 

Garrett stands five feet tall and weighs 136 pounds. But he can drop to 125 pounds in a few days to make weight for his beloved sport, mixed martial arts. His black wifebeater reveals the tattoo of a black Punisher skull engulfed in black flames near his left shoulder. His neck and arms are solid muscle, large enough to make clear that his fists could permanently alter the alignment of an opponent's nose.

For someone with Down syndrome, Garrett is extremely high functioning. Still, his cognitive ability is roughly equivalent to that of a 12-year-old's. His reading and math skills are at a third-grade level. He can't tell if a cash­ier gives him correct change after he buys a slice of pizza, his mom says, and it's unlikely he'll be able to understand this entire article.

But Garrett has found salvation in MMA, a combative sport that John McCain dubbed "human cockfighting." Though it was once banned in a dozen states for its gruesome brutality, nowadays jujitsu black belts of the umpteenth degree battle Olympics-grade wrestlers in refereed yet still-violent face-offs. This more polished competition has been masterminded by the Ultimate Fighting Championship, or UFC, the largest and most profitable promotion company in the world.

1-year-old born with Down syndrome, health problems is thriving now

Excerpt from: News-Leader (click for full article)

 

When Hudson Heinz was born on Oct. 26, 2011, he had Down syndrome, Hirschsprung’s disease, and ventricular septal defect. Within 24 hours of giving birth, first-time parents Rachel and Jordan Heinz found themselves absorbing waves of shocking diagnosis, fighting for their son and discovering a love and strength they didn’t know they had.“Jordan and I faced everything as a team and that got us through it. When we saw (Hudson) for the first time, we fell in love with him instantly. When we looked at him, and still when we look at him, we never saw him differently. I’m so proud of him,” Rachel said.

Today, Hudson is thriving, thanks in large part to his parents’ constant devotion. They have tried to learn everything they can about his conditions, spend hours a day working with him and are constantly on the prowl for resources to help him. They hope to share what they’ve learned with other families.

Prenatal Treatment Cuts Learning Deficits in Mice With Down Syndrome

Excerpt from: Education Week (click for full article)

 

Mice that have a condition similar to Down syndrome performed better on memory and learning tasks as adults if they were treated before birth with something called neuroprotective peptides, new research from the National Institutes of Health shows.

The researchers studied growth factors that are important at key stages of brain development in the womb. Peptides, small fragments of protein, improve brain cells' ability to receive and send signals and enable them to survive.

In the study, published Nov. 30 in the online journal PLOS ONE, the mice had an extra copy of mouse chromosome 16, which has mouse counterparts to 55 percent of the genes on human chromosome 21.

The researchers treated pregnant mice with peptides for five days, then tested the mouse offspring when they were 8 months to 12 months old, comparing them to mice not treated with peptides. Pregnant mice received injections of the protein fragments beginning eight days after conception—the equivalent of the end of the first trimester in human pregnancies.

Mice with the extra chromosomal material treated with the peptides in the womb learned as well as mice that did not have the extra chromosome, and much faster than mice with the extra chromosome that weren't treated.