Childrens Choices   

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Arrowhead Independent Newspaper article regarding Childrens Choices Website

 

Web site offers tips for parents

By Jill R. Goodman, Independent Newspapers

No one expects their child to suffer from arthritis before experiencing puberty. Parents also hope their children will be healthy and speak at the same rate as other kids.

When they are not talking "on time," where can parents turn?

Dawn Kurbat, a nurse living in Sierra Verde, began learning firsthand about available support when her daughter was diagnosed with juvenile rheumatoid arthritis in kindergarten. She learned more as speech and developmental delays were discovered in her younger daughter at 3.

Her daughters, Chase and Matti, 11 and 7 respectively, are featured on a nonprofit Web site she created as a resource for parents.

"My girls were the inspiration," Mrs. Kurbat said.

The Web site includes information about sensory integration disorder, Down syndrome and other illnesses, along with tips for applying for state and federal aid.

"Maybe they're dealing with autism, maybe they're dealing with attention deficit (disorder) or diabetes, but still, there are a lot of similarities in getting support and researching information," she said.

"Children's Choices" is the name of the Web site and the theme for its content, which was developed after six years of talking with other parents and asking a lot of questions.

The site lists upcoming "developmental screenings" offered by the Deer Valley Unified School District. The next dates are Dec. 10 and Jan. 7. Screening takes about two hours.

"We test their vision, hearing, speech, fine and gross motor skills, as well as assessing their understanding of basic concepts," said Mary Hughes, program assistant for Head Start. "Then, they go over results with you and show you the areas your child passed and if they want to refer him or her for further testing in any area."

Mrs. Kurbat learned about the screenings when another parent, who is a speech pathologist, witnessed then-3-year-old Matti's extreme tantrums at her son's baseball game.

"Here I was - a medically-educated person I'd like to think, mother of three. She was only 3 years old. I never thought to go to my school where she would eventually be going and ask them about screenings," she said. "I was just working with a pediatrician, but they're limited in what they know, too."

With an early diagnosis, Matti was able to grow through conscientious encouragement from her family, developmental pre-school and now through a small-classroom program at Greenbrier Elementary School, 6150 W. Greenbrier Drive, Glendale.

"They pretty much follow the same curriculum as the typical classrooms but at a much slower pace," she said. "We owe so much to her teacher Kay Nordine and to this program."

Ms. Nordine, a special education teacher, notes Matti is popular in her classroom.

"She's blossomed this year. She still has a great deal of difficulty with her articulation and getting people to understand her, but she works very hard," she said.

Without that early diagnosis of developmental delays, help for Matti may have been delayed and too late for state and federal aid. After age 6, funding sources are limited to children with autism, cerebral palsy, epilepsy and retardation only, said Mrs. Kurbat, leaving a "small window" for children with other complications to be eligible.

"Early intervention makes such a big difference," she said.

Mrs. Kurbat includes advice on how to answer state and federal aid application questions, and tips such as including blood, urine and MRI results. The Web site also lists numerous links to research sites and lists books, such as Ross W. Green's "The Explosive Child."

Ms. Nordine, who has been teaching for two decades, recommends the Web site to parents.

"A lot of times, it's hard to find out what's available until you get in the school system and talk to other parents. That's usually the best source of information," she said.

As a nurse married to an emergency room physician, people tend to think the Kurbats are more equipped to handle health obstacles, but Mrs. Kurbat said, "We just felt so naive and at a loss."

Chase, now in sixth grade at Sierra Verde Elementary School, 7241 W. Rose Garden Lane, Glendale, is injected with medication for her arthritis three times each week.

"Having a little bit of knowledge can be scary. I know what some of these drugs are for," she said. "Yes, I know how to give (Chase) the injections. Does it make it easier to give it to your own child? No."

Because sitting for long periods of time can be painful, Chase has permission to leave class to walk and loosen her joints when necessary.

At an Arthritis Foundation kids camp, Chase was nicknamed, "Spunky."

"She was just outgoing and had a little attitude. She really found her niche," Mrs. Kurbat said. "A lot of the kids say, 'It's just nice to not have to explain to other people why you look the way you do, why you're walking so slowly, why you're taking medication.'"

Annually, the family travels to California to visit a pediatric rheumatologist, since Arizona lacks one. This discovery sparked Mrs. Kurbat to write a letter to U.S. Congressman Trent Franks (R-Glendale) seeking a bill to recruit specialty doctors and increase funding for arthritis treatment and research.

When should I seek help?

Deciphering whether a child's behavior is "a little behind" or worsening can be challenging but at some point, you "know deep down inside," Mrs. Kurbat said.

She encourages parents to test children if they are concerned about their hearing, vision, motor abilities, socialization or self-help skills.

"When you have a 3 year old who is pointing," she said. "It's not cute any more."

Safety should also be a red flag for parents, Mrs. Kurbat said, noting Matti's ability to tolerate pain, because of her sensory integration disorder.

"One time she got her dad's razor blade and came down the stairs and had blood on herself and said, 'Oooh, what's this mom?'" she said.

Warning signs include children making themselves physically ill and socialization challenges.

"Are they able to play with other kids their own age?" she said.

For more information, visit www.childrenschoices.org.

"Don't be ashamed or afraid to go get professional opinions. And you don't have to agree with the first person," Mrs. Kurbat said. "There's so much information out there; you have to take what applies to your family and let go of the rest."

Post your comments on this issue at newsblog.info/0310. Arrowhead Ranch News Editor Jill Goodman can be reached at (623) 972-6101 or jgoodman@newszap.com.

     last updated  04/25/2009                                 Back Next