Keeping pace with special needs children
October 17, 2011
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- Autism Speaks
JOINT BASE LEWIS-MCCHORD, Wash., Oct. 17, 2011 -- On a sunny afternoon in late September, 11-year-old Garrett Holdaway went to recess.
He didn't go outside with his class, though. His mom brought him to a local schoolyard to play because he hasn't been in a classroom for two years.
Garrett has Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS, an autism spectrum disorder, and can be a tough fit for your average public school class. He's been in 11 schools since kindergarten, but now his mother, Calyn Holdaway, is taking matters into her own hands and creating a pilot program to educate military kids with autism.
"It just dawned on me that if the resources aren't there, create them. You need to create them," she said.
The Holdaways, a family of five, came to Joint Base Lewis-McChord in the spring of 2010 on a compassionate reassignment from Okinawa, Japan.
Like many families, they were told Washington has some of the best resources in the continental U.S. for autism -- but after they found in actuality things were more complicated.
There are plenty of medical resources on and around JBLM (for instance, Madigan's Autism Spectrum Disorders Clinic serves military family members from Washington to Alaska) but Holdaway found the programs in local schools couldn't necessarily keep pace with the demand, especially in the current economy.
"As budgets get tight staffing decreases and it becomes more of a challenge to meet the needs of children with disabilities," Dr. Ilene Schwartz, the director of the Haring Center for Applied Research and Training in Education at the University of Washington, said.
Garrett had been in several schools, both in Japan and Washington, where there was no special education program on site. Instead, he was put into regular classrooms or learning impaired classrooms that couldn't accommodate his needs.
It's a process the Holdaways are all too familiar with. Getting a special needs child situated is difficult in the best of circumstances. Doing it with every permanent change of station, and sometimes with only one parent around, is even worse.
The situation in Washington escalated and soon Holdaway was being called to the school nearly every day. Without someone with the time or the training on site to manage Garrett's behavior, Holdaway became the default handler of every incident.
She arranged to pick up his schoolwork so he could do it at home on what she thought would be a temporary basis while the school came up with a permanent solution. Several months and countless phone calls later she found that Garrett had been disenrolled from school without her knowledge.
"The reality was the school was very forthright and up front, and they said, 'Look, your child needs a program that we don't have at this school,'" she said.
This wasn't news to Holdaway -- but it didn't leave her with a lot of options for educating her son.
"In reality, the states can't turn children away," Special Needs Adviser for the Western Regional Medical Command Exceptional Family Member Program Shannon Christian said.
This adds an extra layer to the complications EFMP Families face when changing duty stations. By law, the school districts have to accommodate the kids that come to them. But that doesn't always work out neatly on the ground.
"What we know about children with autism is that they learn best when given specific, direct instruction," Schwartz said.
However, schools can't always provide that at the necessary levels. For instance, preschoolers need 25 hours of instruction a week but typically get about ten, according to Schwartz -- and homeschooling is a difficult option because it can isolate children who already struggle with social and communication skills.
'What we don't want to do is have a separate community," she said.
In order to address these issues, Holdaway is setting up a yet to be named nonprofit organization to create a pilot program to provide military children with autism a learning environment that can meet their needs and allow them to interact with their peers.
"Clearly I'm not the only mom out there (with this problem)," she said. "This is perhaps one of the most stressful things as the parent of a special needs child, is trying to navigate the education system."
Holdaway is still laying groundwork for the project, including meeting with experts at the Haring Center, but right now the hope is to collaborate with school districts around military installations in Western Washington to enhance public school services. The reasons for this are threefold.
First, as a duty station frequently used for compassionate reassignments for families dealing with autism, JBLM has the population necessary to support the program. Second, TRICARE covers a certain amount of behavioral intervention services for children with autism, which could help with funding. And third, military families could use the extra help.
Autism, according to Schwartz, puts a lot of stress on a family -- and service members and their spouses already have quite a lot to deal with.
"I can't even imagine how much stress a family would have if one of the caregivers were deployed," she said.
For now, Holdaway is looking into options for Garrett while she continues work on a long-term solution that will help more than just her family.
"If we only look at ourselves and our problems, we're failing as a community," she said. "I'm not that kind of person."