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'Life Without a Hello' Reporters at Rosemont Ridge Middle School explore living with cerebral palsy

Student reporters at Rosemont Ridge Middle School in West Linn explain living with cerebral palsy

BRANDON GEE
June 14, 2005 - WEST LINN Sally O'Neill and Rachel Wada don't like it when people ask them questions, only to leave before they can answer. They appreciate it when people say hello to them. They are offended when people talk to them like babies. They would like to get to know students at their school.

Considering the fact that Sally and Rachel are eighth-graders at Rosemont Ridge Middle School in West Linn, it seems like all these things should go without saying.

The problem is, they don't. And the reason they don't is because both were born with cerebral palsy.

Six weeks ago, it became the goal of four other Rosemont eighth-graders to let their fellow students know that many of the things true for them are also true for Sally, Rachel and others with cerebral palsy. The result? A two-page spread in the school newspaper, The Coyote Times , devoted solely to articles about cerebral palsy.

And on the back page of The Coyote Times, which came out Monday, is a column Sally wrote herself.

According to teacher Jennifer Ziolko , Sally was able to start expressing herself much more extensively when she was equipped with a Pathfinder, a type of communication device for disabled people.

"Sally started writing more, so I wanted to get her in the journalism class," Ziolko said.

The journalism teacher, Sharon Fritsch , threw out the idea of doing a feature article on Sally, and students Kristi Wilkinson , Noel Williams , Dani Weiss and Jessica Smith immediately volunteered. Sally joined the class the next day, and things got under way.

The four journalism students began to learn how to communicate with Sally, and they also became familiar with the Pathfinder -- no small feat considering some schools give foreign language credit to students who learn how to use one.

They also got acquainted with Rachel, who uses a similar communication device. The complexity of the devices means forming even simple statements can take minutes. The girls started to spend a lot of time with Rachel and Sally, and they were surprised to learn just how much the two knew about what was going on.

"You'll say something, and you won't think they heard you, but then five minutes later they'll want to talk about what you said," Jessica said.

"Life Without a Hello" became the project's title because some people don't even bother to say hello to Rachel and Sally, assuming they won't understand. The newspaper feature is primarily aimed at correcting the misconception that those who suffer from cerebral palsy are mentally deficient.

For all six girls, the weeks spent working on the project became about much more than journalism.

"It's a friendship that's developed from this," Ziolko said. "It's more than just helping. Sally's mom even commented that it's a different girl at home."

Kristi has begun to spend time hanging out with Sally and Rachel on the weekends, and she is quick to correct anyone who says she is "giving up" those weekends by doing so.

Dani hopes the articles will help people realize that the way these girls are treated by others affects them just as much as the cerebral palsy.

When asked what the best part about the project was for her, Sally labored a moment before the computer voice on her Pathfinder responded, "Friends."

Brandon Gee: 503-294-5947 or brandongee@news.oregonian.com


Newborns' Stroke Risk as High as Elderly's

By Janice Billingsley
HealthDay Reporter

MONDAY, July 11 (HealthDay News) -- Strokes are usually associated with older adults, but a new study finds their incidence among newborns is equal to that of the elderly.

In most cases, infant stroke means long-term neurological problems for those babies who suffer them, researchers add.

"We don't think of babies as having a high risk of stroke, but strokes do occur in babies and cause significant lifelong disabilities," said co-researcher and child neurologist Dr. Donna M. Ferriero, professor of neurology and pediatrics at the University of California, San Francisco (UCSF).

Examining records of nearly 200,000 children born in northern California over a five-year period, the researchers found that approximately one out of 5,000 infants had strokes near birth -- a rate that equals that of elderly people, according to Ferriero.

Furthermore, nearly 80 percent of the infant strokes caused long-term neurological problems for the children, including cerebral palsy, epilepsy, language problems and hyperactivity.

By raising awareness of the frequency of stroke in newborns, Ferriero hopes that parents and doctors will begin to pay closer attention to the sometimes subtle signs of strokes in young children and commence brain-saving therapies as soon as possible.

"Disabilities can be altered by appropriate early recognition and attention. Early intervention does matter," she said. "The brain is plastic and can adapt to physical and occupational therapy."

In the study, the UCSF team examined the medical records of more than 199,000 children born between 1997 and 2002 to families enrolled in the Northern California Kaiser Permanente Medical Care Program.

They found the overall rate of strokes occurring either during labor and delivery or in the month after birth (perinatal strokes) was about one in 5,000 births. However, the study authors believe actual rates are even higher since strokes must be confirmed by brain imaging -- not always used on children with more subtle neurologic symptoms.

Post-stroke disability was common: 58 percent of children were diagnosed with cerebral palsy, a neurologic disorder characterized by muscle weakness; 39 percent had epilepsy; 25 percent were reported to have delays in language; and 22 percent displayed behavioral abnormalities such as hyperactivity.

Cerebral palsy was more likely to occur in infants without initial symptoms, the researchers reported. In those cases, no evidence of stroke was found until months after birth when the child was discovered to have a diminished use of one hand, for example.

Ferreiro said that further research is needed to understand the cause of these strokes, for which there is presently no treatment. A previous UCSF study found that babies born to women with a history of infertility, women who had infections in the membranes of the uterus during pregnancy, or women experiencing a delivery-linked blood pressure condition called preeclampsia were all at higher risk of perinatal stroke.

The results of the study, funded in part by the United Cerebral Palsy Foundation, appear in the July 11 Annals of Neurology.

Dr. John Kylan Lynch, a researcher at the National Institutes of Health, said this study is important because it's both large and based on data taken from the general population rather than from studies looking only at stroke victims. Furthermore, it included cases where the symptoms of stroke appeared later on, after a child was taken home from the hospital.

"It's important for the public to know that most children [with strokes] will present with seizures in the hospital, but that some will look normal until about two months of age, when they will develop difficulty with motor movements on one side of the body," he said.

Ferreiro said that the best thing parents can do is trust their instincts if they think their child is having development problems.

"In the nursery, nurses are very good at picking up [on strokes], but once babies go home it's up to the parents," she said. "Parents are the best observers of their children's skill sets, and if a parent is not comfortable with his or her child's cognitive or motor development, she should trust her judgment."

Parents should talk to their child's pediatrician and not hesitate to ask for a referral to a specialist, she recommended. They should also look for signs of stroke -- for example, if the child is only using one arm or seems to have visual recognition or attention problems, she added.

More information

More information about infant strokes can be found at United Cerebral Palsy.

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