It would be years before doctors could control Kiley Lyall's
severe seizure disorder.
Diagnosed at 4 with autism, Kiley remained nonverbal until she turned 7.
Now, at 20, Kiley has a surgically-implanted vagus nerve stimulator that mitigates much of the impact those seizures have.
"She was probably in a huge fog before that when she was seizing all the time," says her mother, Kathy Lyall, who moved from Burbank to Bourbonnais four years ago.
And yet, despite the mystery that continues to surround autism today, Kiley and her family forged ahead, emphasizing one part of Kiley's life they at least could control: Her fitness and nutrition.
That decision was spot on.
For children with special needs, a population at great risk for obesity, staying active and eating well is more than just maintaining a healthy weight.
It's critical for their overall emotional, behavioral and developmental health.
"Fitness in my book goes to the top of the list," says Suzanne Gray, who founded Right Fit Sports Fitness Wellness in Willowbrook, a training facility for individuals with special needs. "It has been overlooked."
Experts agree: Working out and participating in sports goes a long way in helping those children who might otherwise feel cast out by their disabilities.
"Children with special needs can and should be integrated into mainstream physical education environments when possible," says Ed Thomas, a consultant specializing in physical education. "Physical literacy is a universal goal for all."
But being inundated with the daily grind of parenting and confronted with the challenges of raising a child with a disability can push fitness goals to the bottom of the priority list.
"The burnout factor is more a risk for parents," says Bridget O'Connor, executive director of Giant Steps, a therapeutic day school in Lisle for children with autism.
Still, parents have more resources today than ever before.
Professional organizations throughout the Chicagoland area, including Easter Seals, special recreation associations, Special Olympics and Caring for Kids through the Rehabilitation Institute of Chicago, offer families year-round fitness programs.
On the Internet, parents can access online communities, such as AbilityPath.org, that connect them to each other and to experts in the field offering solutions to common obstacles.
But, although families might find common ground in the pursuit of fitness goals for their child, there is no standard regimen. That's why many physical trainers first begin by assessing the child's abilities and limitations.
Perhaps the child has sensory issues, and is sensitive to activities involving a level of physical contact that may make them uncomfortable.
For others, fine motor skills are the trouble spot.
Whatever the setback, parents should set reasonable goals that
can be tracked easily.
Some suggest making a chart the child can mark so that they literally see progress.
Others suggest treats and rewards. But be careful, candy and sweets, the obvious reward, can be a pitfall. If your child responds well to snacks, be sure to pick healthy varieties.
Sometimes rewards come in the least expected places. At Giant Steps, O'Connor says workout machines are affixed with television sets that play only when the machine is engaged.
Structure and routine also are key. But that's a combination that can kill anyone's motivation.
"Play for any age is the tool for intervention," Gray says.
Tali Eingal, an occupational therapist in Skokie and author of a children's book for those facing fine motor skill limitations, says pretending to act like an animal can get children using their bodies in unexpected and productive ways.
Laura Znajda, who helped develop community-based programs for Easter Seals DuPage and the Fox Valley Region, says aquatic therapy, wall-climbing and martial arts can be fun and engaging ways for children with special needs to isolate and stretch their bodies in new ways to build strength and balance.
Parents should talk to trainers, therapists and teachers to make sure their child's progress is well charted and goals continue to be refocused as needed. The work needs to continue at home.
Remember, progress comes with great effort and small steps.
Kathy Lyall recalls taking Kiley for a hike and coming upon the
Kankakee River. At first, Kiley refused to dip her foot into the
water. Just try, her mother urged. She did.
And the water didn't seem too bad after all.
"By all means, don't give up," says Susan Friend of SEASPAR, one of 29 special recreation associations. "If something doesn't work, it could be the time, it could be the day."
Dimitrios Kalantzis is a Chicago-area freelance writer.
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