Little Hunter Hadley took his first steps when he was just nine months old. Soon, the curious little toddler’s world expanded to the far horizons and he happily explored his new frontiers, giggling and babbling about his discoveries to all who would hear.
And then, when he was just 20 months old, Hunter’s world – and the entire Hadley family’s world – changed abruptly.
“He never slept. He stopped looking at you. The babbling just stopped. He lost his words,” said Hunter’s mom Kari, who said she and her husband Ryan thought perhaps Hunter had lost his hearing.
But after several tests and visits to the doctor’s office, Hunter was medically diagnosed with autism.
The Hadleys, who live in Anoka, enrolled their little boy in Anoka-Hennepin School District 11’s early childhood special education (ECSE) programs, but when that seemed to have little effect, Kari and Ryan searched for further help.
They discovered applied behavior analysis or ABA.
Light It Up Blue
Monday, April 2, is World Autism Awareness Day and in celebration, Autism Speaks seeks to turn the world blue.
The third annual Light It Up Blue initiative has more than 350 buildings already committed to turning blue.
Buildings turning blue include Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City; Hôtel de Ville in Paris, France; the
famous Tokyo Tower in Japan; the Sydney Opera House in Australia; Michigan’s Mackinac Bridge; and Canada’s CN Tower in Toronto.
To see a full list of participating buildings visit www.LightItUpBlue.org.
For the past 15 months Hunter’s ABA therapy has been a full-time job, one which has the little boy working one-on-one with a behavior therapist 40 hours each week.
The individualized in-home therapy targets Hunter’s academic, cognitive and social skills.
On top of that, Kari and Ryan each devote five hours to parent training every week.
“It’s a lot of work and it’s super expensive – $3,500 a week. But the state covered it – and it works,” Kari said.
Within weeks Hunter had once again found his words and is now set to start kindergarten this fall after he turns five years old later this spring, she said.
“When he was in ECSE we were told he wouldn’t be able to start kindergarten until he was eight years old,” Kari said. “He was that far behind. Now, he’ll start on time – all because of the ABA therapy. And we would not have been able to do it without state funding.”
And now, state funding may go away.
So Kari and Ryan brought Hunter along when they visited the state Capitol Feb. 28.
On that day – and on every Tuesday during the 2012 legislative session – families affected by autism partner with the Autism Advocacy and Law Center as they join forces with the Minnesota Consortium for Citizens with Disabilities to meet with legislators, share their stories and plead for continued coverage for autism in the state’s healthcare budget.
Hunter spoke to legislators Feb. 28, telling them, “Thank you for allowing me to have ABA therapy. Without therapy I would not be able to tell my mom and dad I love them.”
“He was so brave and we are so proud of him,” Kari said. “We just want other kids to be able to have ABA, too, if they need it. It really does help. And we couldn’t have done it without state funding.”
Sheri Radoux, a resident of Blaine and the mother of three children with autism, is also working tirelessly to ensure that coverage continues.
“Every child – regardless of socioeconomic level – should have affordable access to medically necessary care and treatment for autism,” Radoux said.
“Any loss of coverage and treatment would be harmful to my children. If treatment does not continue they will regress and lose what skills they have gained; they will be a lifelong drain on the system instead of active contributors to it.”
“That’s why we have to make sure the state continues to cover these therapies,” Kari said.
“Our children need it. Society needs it. Spend a little now or take care of these children for the rest of their lives.”
ABA therapy defined
ABA therapy for autism was developed in the psychology department of UCLA under the direction of Dr. O. Ivar Lovaas back in 1987.
It is intended to provide intensive early intervention for young children with autism (younger than four years old when treatment starts). Children receive 40 hours per week of one-to-one ABA instruction, typically for two or three years.
During the first year of ABA, therapy takes place in the child’s home. In the second year, children spend increasing amounts of time having supervised play dates with typically developing peers, to provide opportunities for peer tutoring and increase social skills. During this time, they also enter general education preschools (to facilitate adjustment to school) and participate in incidental teaching in addition to discrete trial training.
During the third and final year, the focus is on gradually reducing individual instruction and increasing inclusion into classroom settings (either in general education if the children can function effectively in that setting, or in special education if the children continue to require specialized support services).
Jennifer Bozosi, Hunter’s clinical supervisor, said the individualized services of ABA therapy allow therapists to closely monitor each child, track progress and make adjustments where needed.
She saw firsthand what a difference ABA made for Hunter.
“In his intake before therapy, Hunter had below average IQ. Following therapy he has high average IQ,” Bozosi said. “In fact, Hunter’s had significant increases in all areas – academic, cognitive and social.”
“The group learning aspect isn’t always as beneficial, so individualized (ABA) therapy can have dramatic results. Also, the (ECSE) school doesn’t provide parent training – an essential part of effective therapy.”
According to the Lovaas Center, the organization that provides ABA therapy out of its Minneapolis office, “studies have shown that ABA is effective in teaching new skills and reducing problem behavior. Other studies have found that intensive ABA… produces large gains in development and reduces the need for special services.”
Hunter’s mom put the need for continued ABA coverage this way, “That’s why we’re asking the legislature to continue funding this therapy,” Kari said. “They can spend a little money now (to provide the therapy) or they can take care of these kids for life.”
According to Dr. Eric Larsson, who works with the Lovaas Center, “intensive early intervention using behavior therapy is the single most widely accepted treatment for autism.”
Desperate to ensure continued insurance coverage for ABA therapy, the Hadleys and the Radouxes have joined forces with other families of children with autism to beg legislators for continued coverage.
Sue Austreng is at firstname.lastname@example.org