The Center for Persons with Disabilities at Utah State University
 

Why did I have to be born with Cerebral Palsy?

March 25, 2015 by Sue Reeves

Guest post by Candi Carter Olsen, assistant professor of media & society at USU

Image of Gabriel and Christopher in front of a dinosaur statue.

Gabriel (left) and Christopher, giggling their way through a family outing.

March 25 is National Cerebral Palsy Awareness Day. Cerebral Palsy is an umbrella term for a number of non-progressive, non-genetic, non-communicative disorders that affect a person’s movement and muscle control. According to United Cerebral Palsy, there are 800,000 people living with CP in the United States, and an additional 10,000 babies born each year will eventually be diagnosed with CP. My son Gabriel was one of the 10,000 babies born in 2007. He and his identical twin brother, Christopher, were born 10 weeks premature because of complications from a Twin-To-Twin Transfusion Syndrome pregnancy. In February 2015, Gabriel asked me a question that I knew we’d have to face some day, but I wasn’t prepared for it yet. In a fit of frustration, he stomped his foot and said, “Why did I have to be born with Cerebral Palsy?” I had no response at the time, so I’ve written the following letter for the next time I have to answer him.

Dear Gabriel,

You asked, “Why did I have to be born with Cerebral Palsy?” And my simple answer is, “I don’t know.” I can tell you that you had several risk factors, including being born too early, surviving as the recipient twin from a Twin-To-Twin Transfusion Syndrome pregnancy, struggling to breath after you were born and needing a ventilator, taking in multiple blood transfusions, and enduring multiple infections while you were in the NICU. I can tell you all of these things, but they still don’t answer the question.

May I, instead, answer, “What does having Cerebral Palsy mean for me?” My answer is, “Everything and nothing all at once.”

I answer “everything” because it’s what the people who stop you in the grocery store see first. The people who constantly exclaim, “Wow, he can move fast on that thing!” as you try to roll your walker around them because they’re standing in front of your favorite cereal, who ask, “What’s wrong with him?” What they never see, though, is you fighting to roll over, crawl, stand, walk, and talk and defying everyone’s expectations for you. The therapist who told me you’d never play basketball and the doctor who told me you might never read or speak were both wrong.

You have overcome every goal set before you, and you continue to do so. When faced with a challenge, you sit by yourself and you practice, slowly, laboriously, and completely independently. Those of us who have watched you take a problem off to a corner and return with a solution after hours of frustrating work have admired your independence and persistence. You continue achieving goals and proving all of your supporters right and every naysayer wrong.

However, remember that you are no one’s inspiration but your own. Let others admire your accomplishments, but remember that they are yours and no one else’s. Your life is amazing not because you have Cerebral Palsy. It’s just amazing because you are you.

This is why I say that CP is nothing. CP didn’t give you your sense of humor, which causes you to break out in uncontrollable giggles several times a day. It didn’t teach you to love music with an intense passion that sometimes translates into the rest of us hearing the same song 10,000 times in a row as you memorize the words and tune. It didn’t give you the creativity that allows you to build stories with Christopher, complete with theme music and special dances for each story. CP has nothing to do with your smile, or the way you cry when you find things beautiful, or the way that you try to make Christopher feel better when he’s upset. CP doesn’t keep you from rolling your walker into the lake when you want to go for a swim, nor does it keep you from going on hikes and playing with your brother on swings and playgrounds.

I know that you will ask, “Why did I have to born with CP?” several more times as you go through life, and that’s OK. I’ll be here to sit with you, give you a hug, and cry with you. On those days that CP seems like it’s everything, remember that it has nothing to do with who you are and who you will become.

Love,

Mom

Transition Institute supports youth with disabilities

March 24, 2015 by Sue Reeves

Images of Mendenhall and Wilson.

Kim Mendenhall (left) and Emily Wilson.

The third annual Utah Transition Institute was held at Davis Conference Center in Layton in February with more than 150 attendees from 40 local education agencies (LEAs).  The Institute was planned by Kim Mendenhall and Emily Wilson, instructional coaches/implementation specialists for the Utah Professional Development Network. UPDN is a program of the Center for Technical Assistance for Excellence in Special education at Utah State University’s Center for Persons with Disabilities.

Participants from LEAs gathered to focus on outcomes from Utah’s current State Strategic Transition Plan for youth with disabilities ages 16-24. The outcomes include: 1) Supporting youth in their postsecondary goals, particularly linguistically and culturally diverse youth, 2) Ensuring consistent transition team procedures across the state, and 3) Ensuring all team members have knowledge of their roles and responsibilities and can effectively execute them into student transition planning.

“It truly was exciting to see the fire ignite within these LEA teams,” Wilson said. “The major intent of the institute was to affect student outcomes in the area of transition from secondary to post-secondary experiences–I think this event allowed the participating LEA transition teams to plan for that end.

Topics discussed during the three-day event included an overview of what is happening with transition nationally, transition and adult services, implementation science and transition planning, IEP development and compliance, and a college readiness panel. Sarah Bodily, director of Aggies Elevated at USU, participated in the college readiness panel.

“Working with stakeholders nationally and locally for the purpose of improving outcomes for students with disabilities towards college/career readiness and independent living was an amazing experience,” Mendenhall said. She and Wilson shared anonymous comments from participants.

“I feel much more focused and less overwhelmed with the whole transition process. I am really excited at what can be accomplished!”

“Getting materials and resources to help us in our quest to improve transition at our school.”

“The dedicated time to reflect on my data and work on an aspect of it to create a plan.”

 

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CAC Corner: Language Matters

March 20, 2015 by Sue Reeves

By Kelly Holt, CAC Chair

Graphic that says see the person not the disability.I love March, because March is a Disability Awareness Month and we need to remember and also not to use the -r- word. We all are trying to step up for our rights and also to respect others. And we are also to have a positive way to be strong and we have a choice to choose want we want in our lives. We do have qualities that all of us can do in our lives. Just remember, Language Matters.

Here are some tips on People First Language, courtesy of www.disabilityisnatural.com. See the web site for more examples.

Remember, a disability descriptor is simply a medical diagnosis.

People First Language respectfully puts the person before the disability.

A person with a disability is more like people without disabilities than different.

Say: People with disabilities.
Instead of: The handicapped or disabled.

Say: He has a cognitive disability/diagnosis.
Instead of: He’s mentally retarded.

Say: She has autism.
Instead of: She’s autistic.

Say: He has Down syndrome.
Instead of: He’s Down’s or He’s mongoloid.

Say: She has a learning disability.
Instead of: She’s learning disabled.

Say: She uses a wheelchair.
Instead of: She’s confined to a wheelchair or She’s wheelchair-bound.

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CAC Corner: March Madness with a twist

March 18, 2015 by Sue Reeves

march_madness-23046There’s still time for CPD staffers to participate in the March Madness bracket challenge for fame, glory and wonderful prizes! And this year, the Consumer Advisory Council will benefit.

There will be a $5 entry fee for bracket challenge participants, with all proceeds going to the CAC’s Community Investment Award. The award is given twice a year to a Utah non-profit that serves people with disabilities. The CAC’s parent advocates and agency representatives make the nominations, while the self-advocates choose the recipient.

Pick up a bracket in the CPD main office, complete it, and bring it back to the office with your $5 entry fee by 10 a.m. on Thursday, March 19. Brackets will be displayed in the office so you can follow the contest as the tournament plays out.

For more information, contact Shane Johnson in the main office.

WebAIM staff attends CSUN conference

March 16, 2015 by Sue Reeves

head shot of jared smith

Jared Smith

WebAIM (Web Accessibility in Mind) project staff attended the 30th Annual International Technology and Persons with Disabilities Conference, commonly known as CSUN, in San Diego March 2-7.  WebAIM is a project of Utah State University’s Center for Persons with Disabilities.

The conference, which originated at California State University, Northridge, focuses on issues related to accessibility to technology for people with disabilities.

According to Jared Smith, WebAIM’s assistant director, said WebAIM usually has a good presence at the conference and the staff has a busy week. This year, he said, he intended to submit only one presentation proposal, leaving more time to network and enjoy the conference.

“At the last minute, I put in one more,” he said. “Then, I was invited to do two more, one with the WebAIM staff and one panel discussion, so I ended up with my name on four proposals. And then the conference asked us to do a pre-conference workshop.”

So much for a quiet week.

The presentations included the pre-conference session entitled, “Intro to HTML5 and ARIA,” the panel discussion, “Do We Need to Change the Web Accessibility Game Plan,” and presentations on web accessibility and surveys, the WAVE tool, and a screen reader accessibility “face-off.”

“I always really enjoy the conference,” Smith said. “For me personally, it’s like refueling the tank for the year. It’s a chance for us to see some of the impact of the  work we’re doing.”

In addition to the WebAIM presentations, the CPD was also represented in a public hearing on proposed updates to Section 508 of the Rehabilitation Act. Sachin Pavithran, recently elected chair of the U.S. Access Board, facilitated the hearing.