Published: August 3, 2011
On a cold November day in Germany, I ran into my neighbor on the sidewalk outside our stairwell. She, her husband and two little girls lived across the hall from us.
“I haven’t seen you lately,” I said. “How are you?”
“Not so great,” she responded, and I noticed she was carrying a thick stack of stapled papers, the top sheet fluttering the frigid breeze.
“Lily was just diagnosed with autism, and she can’t get the therapy she needs here,” she said. “We’re starting the paperwork for the girls and I to go back to the States.”
She explained that at our overseas location, her two-year-old could only get a small fraction of the treatment the doctor had recommended.
Her husband could not leave his military post until spring, but they wanted to begin their daughter’s treatment as soon as possible. So, she and the girls would return stateside, while her husband remained to finish his tour in Germany.
Such are the decisions often faced by military families with special needs children.
Janelle Hill is also familiar with tough choices. The mother of a special needs daughter, she is the co-author with Don Philpott of “Special Needs Families in the Military: A Resource Guide.”
Janelle said military life with exceptional family members has become harder in recent years as state and federal budget cuts reduce programs, and deployments create more stress.
Her daughter, now 8, suffered a severe brain injury at birth.
Janelle encourages parents to become authorities on their own children’s diagnoses and daily needs so they can seek out the best treatment and education. Her book includes explanations of federal and military programs, outlines of exceptional family member programs and a glossary of diagnoses.
The authors also give step-by-step instructions for organizing the paperwork pertinent to medical and educational needs, a crucial step for maintaining continuity of care, especially after a move.
Parents need to be informed and know how to navigate medical and education systems, Janelle said, because they are the best advocates for their child’s specific issues.
A child with Down’s syndrome naturally has different needs than a child with autism or a child with cancer, she said.
“Resources and agencies sometimes treat special needs programs as one-size-fits-all.” Janelle said. This is why a parent’s knowledge is indispensible.
“Having excellent communications skills, a lot of patience and persistence are the best tools in your kit,” she said.
When you’ve moved to a new location, locating and pulling together all the programs and caregivers required by a child with special needs is a daunting task.
A resource Janelle used and now recommends is counseling services from Military OneSource, if not for therapy, then for guidance to find the care a child needs.
“I thought, there’s got to be someone who is tied to this community who can be a counselor and adviser to me,” she said, “and they found me that person.”
The therapy she needed was having someone to help make phone calls, find local contacts and formulate a strategy when she didn’t know where to begin.
“It made such a difference in the quality of the care that my daughter had for our years at that duty station,” she said.
As for Lily – last March, as winter turned to spring, I got an email from her mom, describing Lily’s amazing transformation after having therapy appropriate for her diagnosis. In the mean time, Lily’s parents made another difficult decision – leaving the military. Their daughter’s well-being was paramount.
“The heartache that has been with me since November is starting to ease,” Lily’s mom wrote.
“Today when Lily woke up, she was smiling the biggest smile and kissing me over and over ... I smiled back and for the first time since November I felt a real smile bloom on my face. I wasn't pretending to be happy with a fake smile and sad eyes,” she said.
“I take heart and joy in watching my little girl become a loving, happy, sweet little person."
Next week, hear more from Janelle HIll and other military parents wtih special needs children.
Also informative: The National Center for Learning Disabilities offers this article about Special Education for Military Children.