Military families and autism: A battle on two fronts
SILVER SPRING, Md. (11/8/10) — The last time the U.S. Army informed Major Brandon Russell that it was time to move to a new assignment, he opted instead to choose a dangerous and unpopular deployment option so that his family wouldn't have to move from their current home in Boston for the 15 months he would be in training and in Iraq.
What would lead a family man to make such a decision? His 6-year-old daughter Rhema has autism and a seizure disorder and she attends a highly sought after school for children with special needs. Not wanting her to be uprooted, Russell chose to accept a spot in the army's Stability Transition Team, a job that includes incentives for those who take it—including getting to choose where your family lives.
The Russell family is not alone in their struggle. According to ACT Today! for Military Families (ATMF), an organization working to provide grant money for treatments to military families dealing with autism, one in 88 military children has a diagnosis on the autism spectrum. The challenges these children face are the same as those of civilian children with autism, but also include the stress of frequent moves, deployed parents and the worry associated with being military families in a country at war.
"Military families with autism wage a battle on two fronts, one for their country and another for their children," says Joe Mantegna, an actor and father to a daughter with autism, in an ATMF video.
ATMF Campaign Director Karen Driscoll says that the most difficult part of having a military child with autism is the battle to access treatments and services. "During this time of war with its high tempo of operations and attendant stresses, military families face an extreme set of circumstances," she says. "Add the challenges of autism and the difficulties in accessing and paying for effective services, and families are understandably pushed to the brink."
Driscoll knows this from first-hand experience. She is the mother of three children, the oldest of whom, 12-year-old Paul, has autism, and she is married to Marine Corps Colonel Jerry Driscoll, who has served for 26 years.
Families on the move
With military families moving on average every two to three years, readjusting to a new home, new schools, new therapists and an entirely new routine can be difficult for children with autism, many of whom thrive on regularity and routine. "When there is so much change and unpredictability, it invariably leads to regression of skills," says Jeneil Russell, mother of Rhema and wife to Brandon.
Driscoll agrees. "Regression, emotional challenges, behavioral issues and gaps in services are experienced on a regular basis. Then imagine going through this again in another two or three years."
Furthermore, it can be difficult for military families to navigate the maze of services at each new duty station, often resulting in gaps in services or major changes in a child's IEP—or individualized education program, which provides for special education services. It is notoriously difficult for special education students to get special education services in public schools. Adding the fact that the child will likely be moving on in just a couple of years can make it even more difficult.
"Because of our frequent moves, the vast majority of military families have little to no chance of effectively holding school districts accountable via the normal procedural safeguards. Chronic non-compliance issues are not confronted unless the parents are highly educated on special education law and intensely involved. This places a significant responsibility on already strained parents," says Driscoll.
Due process can take years to resolve, is very expensive and has no guarantee of victory, making it difficult for an itinerant family possibly already dealing with the deployment of one parent to pursue. "The school districts know this and will often delay and wait the military family out. Sad, but true," reports Driscoll.
When Driscoll and her family moved across the country from Virginia to San Diego, "Paul's school worked to slash his services in half. A long and emotionally draining battle ensued and Paul regressed significantly," she says. The family, who consider themselves highly educated in special education law, and who have been advocating for their son for nine years, couldn't make headway by themselves and eventually had to hire an attorney. "If this is hard for Col. Driscoll and his wife, what does that say for our younger military families?" Driscoll asks.
Deployment of a parent
Even if everything is going smoothly with schools and therapies, military families face perhaps the most stressful situation of all—the deployment of a parent to a war zone. With multiple combat deployments becoming the norm, the stress of living in a family affected by autism and the stress of living in a military family can combine to create an epic level of emotional strain.
Jeneil Russell writes frequently about her husband's most recent deployment on her blog, Rhema's Hope. When preparing her two children for her husband's departure, she found that none of the materials available to help children cope with deployments were a fit for her daughter with autism, whose understanding of language is very limited.
"My husband was really concerned that Rhema would soon realize that he was gone, and when he didn't come back, that she would think he had left her," Russell says. Even though Brandon could call and occasionally video-talk through Skype, it was difficult for Rhema to stay connected with her father. "Brandon and I work hard to connect with Rhema when she is in the same room. It takes significant time and effort," Russell wrote in a blog post prior to her husband's departure. "How will Brandon maintain a connection when he is several time zones away?"
This loss of connection was especially hard on Brandon. On her blog, Russell wrote about the day he went away. "Brandon sat on the couch with Rhema before she left for school. He held her and explained that he was going away for a while. Rhema seemed completely oblivious—it was just another day. She had no idea that she would not see him for so long. Brandon was thinking ahead to when she would realize he was gone. He wanted her to know somehow that he had not left her."
Russell, whose husband returned from Iraq late last month, says that Rhema went into "crisis mode" for the first several months of her father's deployment. "Many of her behaviors were almost unmanageable," Russell says. "Although she was never able to verbally express it, I am certain her father's absence had a profound effect."
During deployment, the stresses don't just fall on the children. The parent left behind must handle IEP meetings, doctor visits, therapy, and all the other responsibilities present in the life of a special needs parent. "It's a tremendous burdon to bear alone," Russell says, "and the stress of it all can be overwhelming at times."
As for what the military is doing to help its soldiers with special needs families, there is the Exceptional Family Member Program (EFMP), which can offer case management, respite care and even legal assistance in the form of special needs trial attorneys.
Jeneil Russell says of EFMP, "I believe this program works great in some cases, but in our experience, we have found that there is still very little understanding among various agencies about autism and how it affects our children differently."
Karen Driscoll reports that although she still sees a stigma associated with having a family member with a disability in the military community, she applauds the efforts of the Marine Corps to help support families with special needs and has found great support in her friendships with other military wives. However, as she points out, "While family support programs are vital, they are not a replacement for medical care or direct services."
Driscoll and her organization, ATMF, are working not only to help fund treatments for military families in need, but to increase the amount of intensive behavioral intervention services military families receive under TRICARE, the military health care system. She credits ABA (applied behavior analysis) therapy with her son's current ability to communicate and live happily. She hopes to influence public policy to increase the number of hours of this type of therapy that TRICARE will provide.
"Because of the unique ways our military families serve this great country, I believe we have a moral obligation to care for our brave military families here at home," Driscoll says.
Sometimes, even with all of these obstacles, things work out. After spending three years finding the right school for her daughter Rhema and spending years working with a neurologist at a local hospital to find the right treatment for her epilepsy, Jeneil Russell finally felt settled. Rhema was thriving, younger daughter Hope was doing well and husband Brandon was due home from his deployment.
Then came news that once her husband returned from Iraq, they would have to relocate again. Just this week, however, Jeneil and Brandon Russell received word that Brandon has been assigned to a two-year assignment in Boston. For now, the Russell family will gratefully stay where they are, together and safe.
You can find Act Today! for Military Families at http://www.acttodayformilitaryfamilies.org/.