Disability Access News

Book chronicles Plano girl's battle with disability that's left her unable to talk

12:00 AM CST on Sunday, March 9, 2008

By ANNETTE NEVINS / Special Contributor to The Dallas Morning News

Like many 8-year-old girls, Schuyler Hudson lives in a world of princesses, castles and ponies. She has her favorite characters, and if you ask, she won't hesitate to beat her chest like King Kong, or imitate a dinosaur.

When Schuyler touches a button on a small machine she carries with her, it roars.

Schuyler, pronounced Sky-ler, doesn't communicate the way most children do. She can make sounds but can't enunciate consonants or use her mouth to form complete words. But that hasn't stopped her from finding her voice.

Schuyler was born with a rare brain malformation known as bilateral perisylvian polymicrogyria, which prevents her from being able to talk.

Her parents, Julie and Rob Rummel-Hudson, endured numerous doctor visits and frustration before finally finding a name for what Mr. Rummel-Hudson refers to as Schuyler's monster.

Mr. Rummel-Hudson, a communications coordinator in the University of Texas at Arlington School of Architecture, chronicled the family's journey in a recently released book. In it, he writes about how the stress of caring for a child with a disability challenged him personally, tested his marriage and ultimately strengthened his family.

"The book is a love letter to my daughter," said Mr. Rummel-Hudson, who has blogged about Schuyler since before she was born. "Someday she may read it and write a rebuttal," he joked.

On a recent weekday, Schuyler sat with other students on the classroom floor at Gulledge Elementary School in Plano reading Flat Stanley, a book about a boy who tries to adjust to being flat after a bulletin board falls on him as he sleeps.

"Flat Stanley can go under doors," said 8-year-old Kayla Stevens-Schmit.

Schuyler's hair is tinted red and styled as a short bob framing her large green eyes and round cheeks. She touched several onscreen keys to form a sentence on the machine that she carries like a purse, her "box of words."

"Peter can fly," a female electronic voice chimed in.

Her classmates took turns guessing what she meant. Schuyler folded her arms across her chest and tucked her head into her chin.

Camryn Evans, 8, came to the rescue, giving Schuyler a pink and purple eraser shaped like a cellphone. Schuyler held it to her ear and began to sign with her hands.

"I know Schuyler's language easy," Camryn said, coaxing her to punch more buttons. "She's talking about Peter Pan."

Search

The search for Schuyler's monster began when she was 18 months old. Schuyler squirmed through numerous evaluations, all sparked by a question from her Yale University pediatrician about why she wasn't talking at her age.

Her condition, a brain malformation that can be seen on MRI scans but is hard to detect, paralyzes the tongue and slows motor skills. It also can cause seizures. The disability, thought to be genetic, is extremely rare – fewer than 1,000 cases have been reported since 1984.

As in his book, Mr. Rummel-Hudson has employed his personal blog to express feelings about the challenges he has faced and how the experience has taught him to be a better father.

"In my dreams, Schuyler talks to me, telling me that things are going to be okay," Mr. Rummel-Hudson wrote in a recent blog entry. "I think she means more than just her own monster battle."

Schuyler's "box of words" is a $7,500 voice machine paid for by donations made through Mr. Rummel-Hudson's Web site, including many from people who knew Schuyler only from his blog, he said.

At school

She's enrolled in a unique program offered through the Plano school district, where 11 children with varying degrees of speech disorders split their time between a regular classroom and one equipped with advanced speech technology.

It's one of only a few programs of its kind in the nation that serve children with disorders that rob speech, including autism and cerebral palsy.

Every child is given a voice machine to help them participate in the program, launched when Schuyler was entering kindergarten. The program is designed to follow the children through high school, school officials said.

Teachers Linda Conerly and Kathy Williams immediately fell in love with Schuyler, snapping pictures of her and a classmate sharing girl talk between their voice machines.

"She is a happy child of joy who has lots of friends, and we all love her," Ms. Conerly said.

Her parents are happy that Schuyler is finally getting a peer group and enthusiastic teachers – a luxury they say she did not have before. She even rides the bus to school.

"This little girl who cannot speak is teaching us about persistence, commitment and compassion," teacher Kathy Tripp said. "That's more than any word can express."

Schuyler touched a button on her small machine, and it roared.

By Fred W. Robinson
frobinson@arcvc.org

Have you ever used the word "retard" in a derogatory way? The phrase, "You're such a retard," can be especially damaging to young children and those who have been diagnosed with a developmental disability.

Before the 1960s, if you had a developmental disability, you would have been placed in a state institution.

Since then, much progress has been made. Now, most state institutions are closed and the developmentally disabled have joined the mainstream as active, participating members of our communities. But while much progress has been made, discrimination and misunderstanding continue to persist. Disrespectful references to people with mental retardation and other disabilities far too often surface in our language, public institutions and entertainment industry.

At The Arc of Ventura County, we have joined other national organizations in a campaign to eliminate the R-word from our vocabulary. It is too often used as a demeaning, hurtful and unnecessary reference to a person who otherwise offers both value and significance to our community.

Last year, our board of directors officially changed our name from the Association for Retarded Citizens, Ventura County Inc. to The Arc of Ventura County Inc. All references to the R-word in our signage, literature and communications have been eliminated.

In November 2006, the nation's oldest group in our field, the American Association on Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities. And Special Olympics has advocated that the word "retarded" be dropped from our vernacular. This obsolete word no longer has a meaningful place in our everyday language. It remains appropriate only for reference in history books as a reflection of the last vestige of discrimination against a select group of people.

Instead of the R-word, we recommend reference to people with "intellectual and developmental disabilities." They are a glorious and equal patch in the vast quilt of society.

But there are other issues, too. Healthcare remains substandard for many with developmental disabilities. Although living much longer, basic medical and dental services are often neglected. Additionally, we are seeing dramatic increases in problems related to obesity, diabetes, cardiovascular disease and Alzheimer's. Proposed cuts in Medi-Cal, as outlined in the governor's proposed budget will only exacerbate the problem and ultimately cost us more.

And unemployment for people with developmental disabilities remains at 70 percent — an astonishingly unacceptable level. While community employment programs have successfully demonstrated that people with developmental disabilities can and want to work in our community, more can be done. Many have successfully transitioned off public assistance and now are productive tax-paying members of our community. But there are many more who could benefit from access to these programs.

We ask that you join us at The Arc of Ventura County, along with other agencies and organizations, as we provide appropriate educational and community services for the people we support. They are, after all, people first. Simply put, people with developmental disabilities are entitled to the same benefits of full citizenship as everyone else, including a free and appropriate education, community-based employment, adequate healthcare, clean and affordable housing, and the respect they deserve as contributing members of our community. We needn't unwittingly contribute to the segregation of this community when we can harness opportunities every day.

March is Developmental Disabilities Awareness Month. Please join us as we celebrate the accomplishments of all people with developmental disabilities, not only in March, but every day.

— Fred W. Robinson of Santa Paula is chief executive officer of The Arc of Ventura County. His e-mail address is frobinson@arcvc.org.

SDSU President Stephen L. Weber appointed Mary Shojai to head the 2007-08 SDSU Disability Access and Compliance Committee (DACC), which met for the first time on Feb. 22 and is charged with implementing CSU requirements for disability support and accommodations.

Shojai, director of Student Disability Services in Student Affairs, is particularly well qualified for this role, and her expertise on disability issues is often sought by other CSU and California institutions.

"I believe there is no one at this university more suitable or more dedicated to advocate for our students, faculty, staff and visitors on these issues than Mary," Weber said.

About Shojai

Shojai serves on the campus steering committee and instructional materials committee for the CSU Accessible Technology Initiative, the CSU Directors Council for Services to Students with Disabilities and the Cooperative Programs Advisory Committee for the California Department of Rehabilitation.

She has formerly served on the CSU advisory committee on services to students with disabilities. She is the legislative co-chair for the California Association on Postsecondary Education and Disability, and she recently assisted CSU Los Angeles, CSU Sacramento and University California San Diego in reviewing aspects of their disability services programs.

"It is a privilege to work with this group of campus leaders, all of whom are committed to sustaining and improving accessibility for individuals with disabilities at San Diego State University," Shojai said.

DACC Background

In December 2007, Weber formed the 2007-08 SDSU Disability Access and Compliance Committee, including a majority appointment of new members and the committee's first strategic redesign since its creation in 2005.

The 2007-08 DACC carries on the work of its predecessor in implementing the requirements formalized in Executive Order 926, the California State University Trustees' Policy on Disability Support and Accommodations, issued to the CSU Presidents by Chancellor Charles Reed in December 2004.

The responsibilities of the DACC include the monitoring and evaluation of current disability policy on campus, the development of future programs and services, and the recommendation of priorities and timelines.

The committee is composed of staff, faculty and students selected to broadly represent all university divisions and departments and the disability community. And because the earlier committee's experience demonstrated that narrowly focused assignments would achieve the most effective results, the 2007-08 member appointments were carefully made to specifically assigned working roles, based on areas of individual expertise.

How the health service caters for women with disabilities in relation to pregnancy, childbirth and early motherhood is to be the subject of new research.

The research is to be carried out by TCD's School of Nursing and Midwifery and is aimed at exploring the strengths and weaknesses of publicly-funded health services in these areas.

The researchers would like to talk to women with disabilities who have experience of publicly-funded maternity services.

They include women who are blind/vision impaired; women who are deaf/hard of hearing; women with a physical disability; women with mental health difficulties or women with an intellectual disability.

"Women with disabilities have very little voice and their needs in relation to maternity services are not well understood. We are interested in meeting women who have a disability and who are willing to talk about their experiences of the maternity services either before, during or after having a baby", said Prof Cecily Begley of TCD.

Women interested in taking part in the study or who would like further details are invited to contact Denise Lawler, Lecturer in Midwifery/Research Assistant, School of Nursing and Midwifery, TCD. Email lawlerde@tcd.ie/Tel 086 378 9758.

Visit irishhealth.com's Pregnancy Clinic at http://www.mum.ie

The case of a five-year-old British girl with Down Syndrome who underwent plastic surgery three times has come under fire from Australian disability advocates.

Parents Kim and David Bussey, from Pimlico in south-west London, chose to alter their daughter's protruding tongue, "slanty" skin around her eyes and prominent ears to help her "fit in" with her peers, London's Daily Mail reported.

"We live in a society that judges people by the way they look," Ms Bussey said. "Society is not going to change overnight, so Georgia has to fit into society, rather than society fitting into the way she is.

"The people who criticise us are usually people who don't have Down's children of their own. They don't see the teasing that goes on and the problems Down's children have. I just want to give Georgia a helping hand - an edge to get on in life."

Critics, including the parents of other Down Syndrome children, told the paper the operations were equivalent to "child abuse".

Another London couple, Chelsea and Laurence Kirwan, said they would consider plastic surgery for their toddler daughter Ophelia if she was unfairly judged on her appearance in the future.

Mr Kirwan, a renowned plastic surgeon, said the procedures would correct her "eyes slightly wide apart, flat nasal bridge, thin lips, tongue that sticks out, thick neck".

Mother Chelsea said plastic surgery could help her daughter be more accepted by society.

"It's a matter of self-esteem," she said. "If you're not happy with yourself then why shouldn't you fix something? All I want is for Ophelia to be happy."

The executive officer of Disability Rights Victoria, David Craig, said he sympathised with families who wanted to protect their children from discrimination in society.

"A parent's fear of their child being rejected by society is a very powerful emotion and is unfortunately based on experience for many people with a disability," he said.

However, he said surgery on children without a medical need was not the answer.

"It's much better to change the way society thinks and aim for an inclusive society accepting of difference. People with a disability should be seen as part of life's diversity."