Youngest CAC member has a “can do” attitude

February 28, 2011 by cpehrson

There is probably not a more enthusiastic basketball fan in all of Cache Valley than the CPD’s newest and youngest Consumer Advisory Council self-advocate member, Ben Ballam.

Ben’s love of the game has changed the lives of several of his high school classmates who are “taking their game to a whole new level on Saturday afternoons” when they meet with Ben to play wheelchair basketball.

Ben, who was born with spina bifida, has been playing basketball from his wheelchair since he was a young child. His passion for the game has led him to the Logan High School gym where his enthusiasm has inspired the Grizzlies varsity team to play their hardest– just because he was there.  In turn, they have volunteered to come and play Ben’s kind of basketball with him, and on his level…”a way tough” way to play basketball, says the LHS varsity basketball coach Logan Brown.

The Logan Herald Journal has covered Ben’s love of basketball on a video and in a news article.

Ben’s life exemplifies what the CPD is all about—advocating for people with disabilities, improving their lives, and helping them become more active participants in their communities.

Ben’s natural enthusiasm for playing basketball is helping a generation of young people gain a “new perspective” on what it means to have a disability.  And he is showing the world that it is more about what you can do rather than what you cannot do.

It looks like Ben is going to be doing a lot of things in his life…only on a different level.

The CPD is grateful for the long association the Ballam family has had with us, serving on both the CPD Advisory Council and the Consumer Advisory Council.

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CAC Corner: Challenges and blessings

February 28, 2011 by cpehrson

Written by Mike Wyatt, a family representative on the CPD Consumer Advisory Council.

Matt Wyatt

In 1983, our first child was born. His name is James Matthew Kalani Wyatt. Matt, as we called him,  came to us as a great blessing. He was so darn cute. But after several weeks we noticed he was getting severely bruised. When I would pick him up by holding him under his arms he would later develop bruises where my fingers had gripped him.  We mentioned this to our pediatrician and he sent us to the UC Davis Hospital in Sacramento. There we had him tested for several medical possibilities. It turned out he had a genetic bleeding disorder call Severe Factor VIII deficiency, commonly call Hemophilia A severe.

Well this diagnosis sent us on a great adventure into the realms of hemophilia. By the time Matt was about 18 months old we were versed and practiced on giving him his medications via IV.  We had moved to McChord AFB in Tacoma WA.  Being that Hemophilia is a bleeding disorder and the meds were made from plasma, we decided to enter Matt into a transfusion safety study. Mostly to track and find out if he had been exposed to Hepatitis. Well, one of the tests that was taken was called the Elisa Test for HTLVIII. Later to be called the AIDS test. Little did we think he would ever be exposed to HIV.  On Halloween day, October, 1984 we found out he was indeed infected with the AIDS virus.

This was the beginning of a long scary journey into the world of AIDS. At that time we found little education was available and many doctors and nurses knew nothing about the disease and even less in children with Hemophilia. So we began a quest for knowledge that took us from Seattle to Honolulu to San Francisco and the National Institutes of Health in Washington DC. The Air Force transferred us to Hickam AFB in HI. There, we found that Hawaii was so far ahead of the rest of the nation on being ready for the first known student in public schools (with AIDS).  When Matt entered kindergarten it went very smoothly.

For me, it was a golden opportunity to not only learn more about AIDS, but to give back to the people knowledge and experiences to alleviate their fears and concerns about AIDS in their community. I spent 5 years working as a volunteer with the Dept. of Health, Dept.  of Education, and the Hawaiian Red Cross.  I was very honored to become the volunteer of the year for the Red Cross and to receive the Valley Forge Medal of Honor for doing AIDS education in the Hawaiian Islands.

Along about our third year in Hawaii, a co-worker on the Governor’s subcommittee on AIDS, protocols asked my wife and I if we were interested in foster-caring a little girl who was HIV positive. This girl was not wanted by any family members, and they couldn’t find a couple who wanted to care for a baby. Well, we took her into our home as soon as we could. This turned out to be a great blessing for us, as well as for her. At 24 months of age, she seroconverted to HIV Negative!!

We finally adopted her after a long drawn out battle with the Hawaiian Department of Human Services. Unfortunately, she had also been exposed by her mother when she was still pregnant to meth, heroin, and alcohol, Today she has been diagnosed with Fetal Alcohol Syndrome. That’s #2 in our lineup of disabilities in our family.

After being transferred back to Washington State, our son, Matt, died in 1996 at age 13 years and a month. (Note: From the same lot numbers of factor 8 that Matt received and got infected with HIV from, 92 children have also died of AIDS.)

About two years after Matt died, we decided to move to Utah so I could attend USU. While in the process of packing and moving my wife starts labor pains. So we moved and she stayed with friends in Washington. Before I could go back and get her, she delivered our last child, Paul. Paul was born with Trisomy 21 Downs syndrome. This brought the third disability into our home.

The Wyatt children

We have been blessed to have these children in our homes and our lives have been enriched by them. That’s not to say it has been without challenges. Oh my, I cannot begin to tell that story. It would fill volumes.

But the most wonderful things have occurred.  We learned to be our children’s advocates. We have been helped and supported by many, many people–more than we could name. More than that, we have been very open and forthcoming about our children’s disabilities and have reaped the benefits of that choice. We found people are more likely to trust you when you don’t hide the facts, than if you do and get caught.

That brings us up to today.  We try to share our story, not for pity or attention, but to help others to learn and grasp the blessings that have  come from having children with special needs.  That’s why we try to give back to our community.

THANKS,

Mike Wyatt

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Art and autism intersect on Monday, Feb. 28

February 25, 2011 by JoLynne Lyon

Madeline Gauthier's portrait is one of many photos that will be in the exhibit.

An exhibition of photographic art will feature families of Cache Valley children with autism spectrum disorder.  It is one of the faculty projects featured in the Utah State University Department of Art Faculty Exhibition beginning  Monday, February 28.

The collection of photos is entitled 1 in 110. It takes its name from the statistical probability that a child will be diagnosed with autism spectrum disorder, according to a 2009 report from the Centers for Disease Control.

Most researchers agree that the causes of ASD must include an environmental component.  The effects of toxicity in the environment on human health have long interested Christopher Gauthier, an assistant professor of art and the photographer who created 1 in 110. In an invitation letter, Jacqueline and Christopher urged Utahns to support intervention programs provided by the CPD’s Up to 3 program. Their daughter, Madeline, is featured in the exhibit.

Also featured is the CPD’s Janel Preston, lead teacher in the ABC classroom. The ABC class is for families who have a child with an ASD diagnosis or are in the process of getting one.

The photos will be on display in the Fine Arts Visual Gallery 102 on the Utah State University campus from the evening of February 28 through March 25, as part of the Current Works of USU and CEU Art Faculty exhibit. The event begins with a reception from 5 to 7 pm on February 28, and it  is open to the public.  To find the gallery, go through the north entrance of the Fine Arts visual wing. Gallery 102 is the first door on the left.

Dax Drysdale also appears in 1 in 110.

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Still time to voice your concerns in Utah

February 22, 2011 by cpehrson

The 2011 Utah Legislative Session is halfway over.  There is still time to voice your concerns over the disability issues and budget cuts that are being considered for Social Services in Utah.

Local communities across Utah are holding Town Hall meetings, giving constituents an opportunity to talk directly to their legislators.  If you are unsatisfied, frustrated, or discouraged about the lack of funding for disability programs and services, now is the time to make a difference.

Find out when your community is holding their Town Meeting and plan to attend.

The final Cache County Town Meeting will be held this Saturday, February 26th, 7:30 a.m. at the Cache County Administration Building, 179 North Main, Logan, Utah.  Senator Lyle Hillyard, Chair of the Executive Appropriation Committee, will be in attendance to listen to your concerns.

For more information, contact Ryan Rigby, sslspk@yahoo.com.

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Your impact stories could prevent budget cuts

February 18, 2011 by cpehrson

A number of programs important to people with disabilities and families may be affected by federal budget cuts that are currently in debate in the House of Representatives. The Association of University Centers on Disabilities (AUCD) is concerned about the possible drastic cuts that could eliminate domestic discretionary programs that provide essential services to people with disabilities.

The AUCD is seeking personal stories that demonstrate how these cuts would impact people with disabilities, including specific impact statements that show the affect to districts, states and the nation.  Impact stories/statements can be sent directly to Kim Musheno at kmusheno@aucd.org.

Go online for further information about the discretionary funding cuts.

AUCD is part of a large coalition of disability, health, education, and research organizations banded together to advance policies and practices for and with people with developmental and other disabilities, their families, and their communities.

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