AEA services support children, families

Iowa Area Education Agencies (AEAs) provide services to children with disabilities and education to parents about those disabilities. The Council Bluffs Nonpareil wrote about the services a family received from Loess Hills AEA in Council Bluffs in an article titled "Family taps resources to cope with child’s Down syndrome." 

For more information about AEA services, contact your local AEA.

Family taps resources to cope with child’s Down syndrome

Reprinted with permission from the Council Bluffs Nonpareil

Don’t lose hope, parents of infants or unborn children with Down syndrome – there are support groups and resources out there to help you.

That’s the message of Jeff and Dawn Bonsall of Underwood, whose daughter, Rylee, age 4, has the syndrome, a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. The Bonsalls are members of the Southwest Iowa Down Syndrome Parent Group, which sponsors the Buddy Walk.

Said Jeff, “I think at first, when you’re first provided with a diagnosis, you don’t know what you can do – you don’t know what’s available. They can learn – they can speak, they can walk and talk. By working with the folks at the (Area Education Agency) and those places, they just help to give you information and hope.”

A quad screen blood test when Dawn was 16 weeks pregnant indicated there was a high likelihood of Down syndrome – sometimes called trisomy 21 – and amniocentesis confirmed it, she said. The Bonsalls took action to try to get the help they and their daughter would need.

“We just started looking for support groups and called people that could help us,” she said.

The couple started learning what they could about Down syndrome and sharing information with family and friends “and just prepared ourselves as much as we could for when she arrived,” Jeff said.

The disorder is named after John Langdon Down, the British doctor who described it in 1866, according to an explanation on the parent group’s Web site. It was identified as a chromosome 21 trisomy by Jérôme Lejeune in 1959. The condition is characterized by major and minor differences in structure. Often, Down syndrome is associated with some impairment of cognitive ability and physical growth, as well as facial appearance.

Individuals with Down syndrome often have mild to moderate developmental disabilities. A small number have severe to profound mental disability. The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births, although these statistics are heavily influenced by the age of the mother. Other factors may also play a role.

Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea and thyroid dysfunctions. Early childhood intervention, screening for common problems, medical treatment where indicated, a conducive family environment, and vocational training can improve the overall development of children with Down syndrome. Although some of the physical genetic limitations of Down syndrome cannot be overcome, education and proper care will improve quality of life.

“Right away when she was born, we had already contacted Early Access at the AEA. With me being a special ed teacher with the schools in Council Bluffs, I kind of knew some of the resources, as well, that were available.” Dawn teaches at Gunn Elementary School.

Unlike many Down syndrome babies, Rylee did not have serious health problems, Dawn said.

“We were very blessed that she did not have any medical problems with her,” she said. “She’s had some ear infections, and we just found out she’s hypothyroid.”

Rylee started to receive occupational and physical therapy soon after birth, Dawn said.

“At first, they were helping us more with feeding and holding her head up and just building her muscle tone,” Dawn said. “Then, by the time she turned 2 years old, she started speech therapy. The best thing to see was, every time they came, she was exceeding her goals; so they had to rewrite her goals every time. Without the support and services of the AEA, she would not be where she is right now.”

Rylee is now receiving speech therapy from Alegent Health, Dawn said. Rylee’s pediatrician has some experience with developmentally disabled children and has been a good resource, too.

The family also joined the Southwest Iowa Down Syndrome Parent Group, which includes families from Council Bluffs, Glenwood, Neola and Underwood. The families’ affected children range in age from 2 to 19. There’s also an Omaha Down syndrome parent group, which some parents from southwest Iowa belong to.

At age 2, Rylee started going to the Iowa Western Community College Early Childhood Education Center for preschool, Dawn said.

“She’s had the two years of preschool, which has been really beneficial,” she said. “She’ll start kindergarten next year in Underwood.”

Rylee matches her peers in some areas but still lags in others, Dawn said.

“Comparing her to herself, she has improved a lot; but in comparison to her peers, she still has a couple delays,” she said.

“As far as her comprehension, she’s at her age level or maybe a little above her age,” Jeff said.

Rylee has played soccer at the Council Bluffs YMCA and T-ball with the Council Bluffs Parks & Recreation program, Dawn said. They try to keep her involved with other children.

Jeff and Dawn are longtime supporters of Buddy Walk, Jeff said.

“We’ve actually been involved with it since before she was born, although not as deeply as now,” he said.

The walk has grown tremendously since they first joined the effort, Dawn said.

“The first walk we went to, there were 30 families; and last year, we had 600,” she said. “Last year was our first year at (Iowa School for the Deaf).”

The walk is held on the trail on the ISD campus, with some activities taking place inside the Lied Multipurpose Complex.

Said Jeff, “It’s probably ISD donating the facility that’s allowed Buddy walk to grow so much the last couple years.”

This year for the first time, the group had professional pictures taken of all the children and made a calendar to sell, Dawn said.

“Every year, we add more and more things to the Buddy Walk,” she said.

There are now about a dozen families in the parent group, Dawn said.

“We know there’s a lot more families that haven’t joined,” she said.

The group meets once a month and holds a family event every other month that is open to members and other families with a child affected by Down syndrome, she said. For more information, see the Web site at www.swidspg.org.