Aggies Elevated graduate reflects on living away from home for the first time

May 24, 2017 by JoLynne Lyon

Photo of Riley and friend

Riley, left, pauses to chat in the Distance Ed building on the Utah State University campus.

It’s summer–the time that college-bound students save money, collect household furnishings and wonder what life will be like away from home.

Fortunately, they can learn from the experience of others, including Riley Cochran, an Aggies Elevated graduate who was one of the first to attend the inclusive on-campus higher education program at Utah State University*.

“Having all those roommates was fun,” he wrote in an article for Think College, a national organization dedicated to improving higher education options for people with intellectual disabilities. “We liked the same kind of things… I never had problems with the roommates because I have disabilities. If anything, they were willing to help out because I have a disability.”

Read the whole article in the Think College newsletter. #AggiesElevated #ClimbHigher

*Aggies Elevated is a program of the Special Education and Rehabilitation department at Utah State University.

10 things to know about people with Fibromyalgia on International Chronic Immunological and Neurological Diseases Awareness Day*

May 12, 2017 by JoLynne Lyon

 

Photo of Storee, her husband and dog.

Storee Powell (right) with her husband Jim and dog, Chewpy.

By Storee Powell

It started at least 5 years ago with bouts of intense body fatigue and weakness. It continued to progress into bouts of hideous pain. I’d suddenly find myself unable to move after laying on the floor, dropping things constantly, and writhing in pain at night.

After a merry-go-round of doctors, misdiagnoses, and awful medications, I finally learned what was eating me alive on July 6, 2016: Fibromyalgia.

I’ve learned that most people know little about this chronic illness and invisible disability. The most common response is something along the lines of a nebulous idea of being tired. Here are 10 things to know about people with Fibromyalgia to help you support those around with this disease:

  1. The thing about Fibro (as I so refer to it) is that it is all encompassing. It causes sleep disturbances, muscle pain and weakness, joint stiffness, hyperhidrosis, irritable bowel syndrome, headaches, numbness and tingling, tinnitus, environmental sensitivity, balance and dizziness problems, TMJ, anxiety or panic disorders, brain fog, and I’ll stop here before I bore you. Just know that it affects many systems in the body.
  2. It isn’t killing us, but it sure feels like it. Though Fibro isn’t terminal, I regularly have such a high pain and fatigue level that I cannot perform basic daily tasks to take care of myself. My least favorite is not brushing my teeth for two days. Angora sweater is the description that comes to mind….
  3. Fibro is difficult at best to treat (still no cure). Traditional pain medications do little or nothing to help with symptoms, and only three medications are currently approved for Fibro.
  4. We usually don’t ‘look sick’. It is hard to ask for help when you are 29 and know people will question how sick you really are. When you see me, there is a good chance I’m wearing 10 layers of concealer, and it is the first time in a week I’ve left the house.
  5. Ninety percent of sufferers are women, and it often starts in the 20’s or 30’s, and takes an average of 5 years to diagnose.
  6. It is a grab bag. Every day with Fibro is different – I never know which combination of symptoms I’m going to encounter. Some days I’m semi-functional and some days I am not functional at all. And I can’t predict it. Last minute cancellations are something I dread intensely, and I have severe anxiety about making appointments.
  7. I am slow. I’ve had to learn to live life at a different pace than that of a person my age who is healthy. I cannot work the same hours, drive the same distances, do the same physical tasks for longs periods of time, or socialize when I please. Everything I do is very calculated.
  8. I won’t ‘get better’. Fibro is chronic – meaning it is for life for the majority of people who have it. Just because you see me looking relatively human one day does not mean I am better. In fact, I’m probably working through a variety symptoms and I’m just good at hiding it.
  9. I can’t ‘fight it’. Fibro isn’t cancer. I can’t win (i.e. make it go away with treatments). And honestly, I work three times as hard a healthy person to do basic things. All I can do is accept my condition and do my best to live life fully for my abilities.
  10. It really sucks, but life is still good. I’d be lying if I said I don’t have existential breakdowns at 3 a.m. thinking about how I’ll be sick on Christmas, at future family events, in 5 years, in 20 years, forever. But I still find joy in life and those moments mean more now. I love being part of the CPD, owning my home, having a dog, writing, and being married. To all my Fibro and chronic pain/fatigue sufferers out there, I literally feel you and you are not invisible.

 

*If you are wondering just what that mouthful means, it includes Fibromyalgia, Myalgic Encephalomyelitis, Multiple Chemical Sensitivities and Gulf War Illness. You can learn more about each at the May 12th international awareness day website.

 

Linda Alsop recognized for impact on Deafblind education

May 11, 2017 by JoLynne Lyon

photo of Linda

Linda Alsop, right, poses with her award during her recent trip to Boston.

Linda Alsop has followed her passion, serving the Deafblind community for more than 20 years. The Council for Exceptional Children’s Division on Visual Impairments and Deafblindness recently recognized her dedication with the Exemplary Advocate Award.

“It has always felt to me that it was what I was supposed to do and where I was supposed to be,” said the director of Deafblind programs at SKI-HI Institute, which is part of the Center for Persons with Disabilities at Utah State University. “These children are very poorly understood, and their needs are very high, and education has not been great for them. We don’t have great outcomes as far as what we see in adult life.”

But Alsop knows it could be better, and those possibilities have kept her motivated through years of program-building, advocacy and better- and worse-budget years. Utah has been the nation’s leader in Deafblind education, thanks to the work of dedicated people at SKI-HI Institute, including Alsop. The organization has developed a curriculum, advocated for change and established certification standards for trained interveners, who serve as interpreters for Deafblind children. SKI-HI has helped people from other states organize and receive training.

“We’ve done a lot of work nationally to make people aware of what interveners are, to help parents understand the need,” Alsop said. “We’ve changed the law in Utah and things are rolling well, but many states are still struggling with this practice. … The story’s not done yet, but it’s come a long ways.”

Alsop has stuck with it because she has seen the difference interveners make. People often assume that Deafblind children also have low cognitive function, because it is so hard for them to express themselves. “There are no test results that evaluate them because they can’t communicate,” she said. “They’re undervalued, they’re underestimated.” And often, they are frustrated and angry.

And yet, with the help of trained interveners, a different picture emerges. Interveners work with Deafblind children in a way similar to Ann Sullivan’s pioneering work with Helen Keller, including one-on-one instruction and tactile signing.  “We see changes in behaviors, we see changes in personality,” Alsop said. “I have amazing stories of what happens with these children. … We have lots of data.”

SKI-HI oversees a website for the Deafblind community called Interveners and Children who are Deafblind. The group also has a Facebook page with videos showing interveners in action.

Alsop received her award in Boston last month.

Congratulations to CPD graduates

May 4, 2017 by JoLynne Lyon

photo of bagpipers

Bagpipe players lead USU graduates to the Spectrum.

Congratulations to the CPD employees who are graduating this year! Utah State University’s graduate commencement and hooding ceremony is on Friday, May 5, 2017 at 1:30 p.m. in the Dee Glen Smith Spectrum. The undergraduate commencement begins Saturday, May 6, 2017 at 9:30 a.m. in the Dee Glen Smith Spectrum, 800 East 1000 North. A complete schedule of events is available on the Utah State University website.

2017 Graduate degrees

Jeff Sheen (Admin), PhD, Disability Disciplines

Sachin Pavithran (UATP), PhD, Disability Disciplines

Lesther Papa (Clinical Services), Ed.S., School of Psychology

Cecilia Tavares (Clinical Services), Master’s, Psychology

2017 Bachelors degrees

Becca Wilson (DSL), Bachelors, Psychology

 Mckell O-Brien (DSL), Bachelors, Recreation Management

Grace Holloway (DSL), Bachelors, Elementary Education

Monica Lopez (Up to 3 intern), Bachelors, Social Work

Top 14 Utah travel sites for people with disabilities

May 1, 2017 by JoLynne Lyon

Photo of the building's interior

The Utah State Capitol was #1 on the list.

Eric Stoker, a CPD Consumer Advisory Council member, has compiled Utah’s Travel Guide for People with Disabilities. The document was created for the Utah Developmental Disabilities Council, it’s packed with tips for travelers of all ages and abilities, and it has a permanent home on the CPD website.

Stoker researched Utah’s accessible attractions and came up with this top 14 list, which is included in the document:

Top Accessible Places in Utah

1. State Capitol Building, Salt Lake City

2. Temple Square, Salt Lake City

3. Discovery Children’s Museum, Salt Lake City

4. Hill Aerospace Museum, Clearfield

5. Bear River Bird Refuge, Brigham City

6. Capitol Reef National Park

7. Farmington Bay Waterfowl Management Area, Farmington

8. East Canyon State Park, Morgan

9. Dinosaur National Monument, Vernal

10. Canyonlands National Park

11. Palisade State Park, Manti

12. Hogle Zoo, Salt Lake City

13. Red Butte Garden, Salt Lake City

14.Natural History Museum, Salt Lake City

For more information about traveling by car, plane or bus, and for travel tips for all kinds of disabilities, please refer to the travel guide.

About Eric Stoker: In addition to his work with the CPD’s Consumer Advisory Council, he is also a part of the Utah Regional Leadership Education in Neurodevelopmental disabilities as the consumer faculty at Utah State University. He is the information specialist for the Utah Developmental Disabilities Council.