MESSAGE FROM THE EXECUTIVE DIRECTOR
Returning the Favor - Taking Care of Our Own

Michael V. Maloney OAR Executive Director

In many respects, my message for this issue of The OARacle has been almost 40 years in the making. It began when I was commissioned an officer in the U.S. Marine Corps in July 1969. In less than a year, I had completed the initial training package for Marine officers at Quantico, VA, and was on my way to “WESTPAC,” heading to Vietnam and my first combat leadership assignment. Taking command of a platoon of Marines was exciting and daunting at the same time, and from my first day I began to learn that leadership involved a great deal more than tactical and technical proficiency.

Beginning then and in every stop after, my service in the Marine Corps taught me that a leader’s first and most important charge was to “take care of your men and women.” This responsibility extended beyond training, combat, and military affairs to taking care of the families of the people we led as well. In that context, ensuring effective medical care and supports for military families was fundamental to good leadership and, on a larger scale, important to mission readiness as well.

For me, that sense of responsibility was re-awakened with new purpose after we founded OAR, and I met people like Karen Driscoll, a Marine wife and tireless autism champion whom we saluted in The OARacle for her efforts on behalf of military families earlier this year; LTC Scott Campbell, USA, another autism parent/champion, dedicated to helping other military families dealing with autism; and Joe Valenzano, a Marine in earlier days and today CEO and president of Exceptional Parent Magazine, and another advocate and champion for military families that have family members with special needs and disabilities. Ever since we launched OAR, I had been looking for the combination of purpose and opportunity to extend OAR’s good work to military families touched by autism. Each of these persons helped guide us, leading by personal example and providing insight, inspiration, and encouragement.

The stars came more closely together in June when OAR’s Board of Directors gave me an enthusiastic and unanimous green light to develop an OAR initiative that would help military families touched by autism. They completely aligned in October when the American Legion Child Welfare Foundation approved OAR’s grant request with a commitment of almost $41,000 to launch the program and create An Autism Guide for Military Families, which is described in more detail on page 3. Today, armed with the idea, inspiration, and now the necessary funds, we at OAR are excited to take on this project.

In many respects, it starts with this issue of The OARacle, with the perspectives provided by General Jerry Hilmes, Lt. Col. David M. Cohen, and Joe Valenzano, and the various overviews we’ve provided. When finished next year, the Autism Guide for Military Families will stand as OAR’s way of offering continuing support and saying “Thank you for your service.” At the same time, it will provide OAR and each of the persons who have or will contribute to this effort in the coming months the great satisfaction and pride that comes with knowing that they have indeed done something meaningful for the men and women who serve in uniform today and their families. As it was 40 years ago, it’s called “taking care of our own.”

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A Military Family’s Experience with Autism

By Kyla Doyle

Exceptional Parent’s Editor’s Note: Kyla Doyle is a military wife, mother, and advocate for her daughter with autism. In this article, Kyla openly and honestly relates the struggles and triumphs that her family has experienced in securing services for her daughter. Mrs. Doyle encompasses some of the best qualities of a parent advocate—fortitude, resilience, a positive attitude, and a dogged determination. An EP staff member recently met Mrs. Doyle and her husband, MSgt. Buck Doyle at Camp Pendleton, where MSgt. Doyle served as a speaker at an on-base Autism Conference that drew policy makers, senior executives, military and civilian health care providers and support personnel, other Navy and Marine Corps leaders, TRICARE Regional Office West Staff, TriWest Staff, education community representatives and other military family members. EP presents this parent-authored article as a way of bringing the challenges faced by military families to the fore as part of the shared, mutual goals EP has with the U.S. military in improving the lives of children with special needs.

Photo from Exceptional Parent Magazine, April 2008 Caption: The Doyle Family: MSgt. Buck Doyle, Halle (age 9), Kyla, and Kate (age 4)

I am writing in the hopes that by sharing our family’s experience --that of a military family with a young child diagnosed with autism--I might shed some light on the unique difficulties faced by servicemembers and their families who find themselves literally fighting on two fronts. One spouse is engaged in multiple deployments to support our country’s efforts in Iraq, and the other is at home fighting the daily battle to acquire and maintain minimal therapy and services for a child whose immediate and future independence, safety, and quality of life depend on it.

My husband, MSgt. (Master Sergeant) Buck Doyle--a Marine with over 19 years of service, three tours to Iraq, and an enemy sniper’s bullet still lodged in his thigh--often jokes that it is his wife that should be earning combat pay since, at least for all of the battles he faces, he has been highly trained and properly equipped. I found myself largely unprepared, and certainly unequipped almost three years ago when our daughter was diagnosed with autism just after her second birthday. We were even more unprepared to find that those who we assumed were our allies--the local school district and regional center, even the military healthcare system--would present us with the greatest challenges to our daughter’s needed intervention.

Kate
In April 2003, during my husband’s first tour in Iraq, I gave birth to Kate, our second daughter, whom Buck greeted via satellite phone from somewhere on the outskirts of Baghdad. Kate was a beautiful, quiet toddler who sat, crawled, and walked earlier than most. At a year old, we began to notice that Kate was not talking--in fact, she was not even babbling and didn’t seem to be interested in communicating verbally. She would keep herself busy by spinning in circles, stacking or lining up blocks, or staring for long periods at her own wiggling fingers, quietly bobbing her head to a tune only she seemed to hear. By 18 months, Kate had become even more solitary. We began to notice that Kate rarely made eye contact and would not respond when we called her by name--soft, loud, near, far--not even a glance in our direction. We took her to an audiologist to have her hearing checked. “Her hearing is normal,” they said. Then came the speech pathologist, the developmental pediatrician, and a host of others. When the diagnosis of autism came, it explained a lot, but also led us to the research that told us that we needed to get our daughter help--and that time was of the essence.

Finding Help – Delays, Desperation, and Hope
In April of 2005, we were referred by a military speech language pathologist to the San Diego Regional Center, the local agency responsible for the implementation of the California Early Start Program for infants and toddlers with developmental delays from birth to age three. Soon after Kate’s autism diagnosis, we also completed our application for the military’s Program for Persons With Disabilities (PFPWD). We were hopeful that with the help of these agencies and programs, coupled with an early diagnosis, Kate might have an even better chance of improving her prognosis through effective, intensive early intervention. We had no idea at the time that the services that were supposed to be provided by California’s Early Start program in the name of early intervention would take months to begin. In spite of numerous phone calls, it was not until August that a Regional Center psychologist would first see Kate and September--over four months since contacting the agency--before Kate would finally receive applied behavior analysis (ABA) services. In the months following Kate’s diagnosis, we had learned that this research-based intervention would give our daughter the best chance at reclaiming the skills and language that she had so far not been able to develop because of her disorder.

During that summer, as we waited for Regional Center and military services to begin, I desperately searched the Internet and scoured the library for something, somebody who could help our daughter. I came across the Web site for the Brent Woodall Foundation for Exceptional Children (www.woodallkids.org), and I was struck first by its namesake, then by its mission. Coincidentally, Brent Woodall had been a college classmate of mine at University of California Berkeley and who, tragically, was killed during the attacks of 9-11 on the World Trade Center. His widow, Tracy, started the foundation in his name to continue and expand her work helping families with young children who could benefit from applied behavior analysis. Tracy’s assistance was immediate! Just three days after we contacted her, Kate and I were on a plane to Dallas, Texas, where Kate would receive almost a week of evaluation and intensive intervention, and I would receive training in the principles of ABA, the Picture Exchange Communication System, Pivotal Response Training, and the start of a home program for Kate that I could begin implementing as soon as we returned. During our stay, Kate spoke her first functional word--“Cheetos”==her favorite food. The most important thing we received that week with Tracy, however, was hope for our daughter’s future.

More Hurdles, More Delays
Shortly after returning from Texas, I was thrilled to learn about TRICARE’s new Extended Health Care Option (ECHO) program, which would soon take the place of the PFPWD program. Its higher benefit cap and coverage of ABA therapy seemed to be the answer that we were searching for, in terms of getting the additional hours of ABA that Kate needed. We found the authorization and implementation of her therapy benefits to be a series of hurdles and dead ends. From August to December of 2005, with my husband again deployed, I called and e-mailed TriWest supervisors, trying to find out the status of our daughter’s authorization. With no follow-up, I, in desperation, called Camp Pendleton’s Exceptional Family Member Program (EFMP) Coordinator to explain our difficulties and found myself weeping over the phone in frustration. She was the first person to listen. The next day I received a phone call from a no-nonsense-sounding Staff Sergeant from Marine Corps Headquarters in Washington D.C. He assured me that he would be in contact with TriWest and would “solve the problem.” Kate’s authorization was processed within the next week.

Authorization was just the first hurdle, I found--the implementation of these benefits required that I find a Board Certified Behavior Analyst (BCBA) to provide one-to-one services. When I inquired with our TriWest case manager, she was unable to give me a name or agency in my area that had TRICARE-authorized personnel to provide ABA therapy. I quickly found that of the few BCBAs in our area, many were professors, researchers, or in supervisory positions, which were not conducive to the hands-on, one-to-one delivery of ABA that TRICARE required. After all our work getting Kate authorized, it looked like there would be no one to actually deliver the services for which she was authorized. Finally, we were able to convince the ABA agency that was delivering the few hours we had funded by the San Diego Regional Center to also become a TRICARE provider. After going through the paperwork process, they sent their Regional Director, a BCBA who supervised and trained the program supervisors in the area, to do five to seven hours per week of one-to-one ABA with Kate. By the time Kate was able to begin using any of her TRICARE-funded ABA benefit in January of 2006, almost seven months had passed since her initial autism diagnosis.

Still, even combining the fee-capped ECHO benefit with Kate’s Regional Center services, the number of hours of therapy she was receiving fell short of the 25-hour-per-week minimum recommended by the National Research Council, and even further from the 40 hours shown effective by widely accepted research for a child her age. I did my best to make up the shortfall by providing hours myself. I went to every parent training I could find and even enrolled in a year-long graduate program through Pennsylvania State University that I was able to do almost entirely online (www.worldcampus.psu.edu/AppliedBehaviorAnalysis.shtml). I would eventually earn a Graduate Certificate in Applied Behavior Analysis for Special Education and will continue to work toward a Master’s Degree in Special Education. Still, the additional challenges of my husband’s frequent deployments and my day-to-day parenting responsibilities made it difficult to keep up. Because we had not been able to access ABA services at first, we were not qualified for the ECHO respite benefit as a result, so there was rarely a break from the kids or our daily schedule. The pace of Buck’s operations in Iraq had increased, making our communication less frequent than in previous deployments. There were times when I didn’t hear from him for a couple weeks. Even then I chose not to use those precious moments of conversation to complain or to vent, when I knew that what he needed to hear was that we were O.K., so that he could continue to focus on his mission and keep himself safe. The day that I emailed Buck a video of Kate’s progress in her therapy session, he called me on the satellite phone, practically in tears. It was the first time he had ever heard Kate’s voice in conversation with another human being. He begged me to send more video; he knew he was missing his little girl’s transformation with each passing day.

School District – “When Are You Leaving?”
With my husband still deployed, my first encounter with the Solana Beach School District, a small but affluent district in North San Diego County, was a conversation with the administrator in charge of Special Education. “When will you be leaving?” was her first question. Sensing my confusion, she attempted to clarify by saying, “I mean, I heard your husband is in the military--how long until he goes to his next duty station? I know how military families are.” We had not yet heard the stories about districts who, when dealing with military families, offered minimal or wholly inappropriate services in order to “wait them out,” forcing families to decide whether to just accept inadequate services and placement or fight the district through the due process system--something that would take both an emotional and financial toll on families that had little to spare in either category. Often, by the time relief is found and services are won, families are called to the next duty station, where the fight for services begins anew. In California’s broken due process system, parents spend upwards of $25,000 to go to hearing and fully prevail less than ten percent of the time. During Kate’s initial Individualized Education Program (IEP) session, the district refused to disclose any information on the training or qualifications of their staff and offered Kate a placement in a Severely Handicapped Special Day Class where Kate would be the only child with the ability to use language without adult prompting. When we voiced our concerns, we were abruptly told that we needed to “learn to separate” from our daughter—that we ought to trust them as they were the “experts.” We were convinced, and her current program providers agreed, that what Kate needed in order to continue her progress was access to peers who were appropriate language and social models and continued one-to-one ABA instruction and support by qualified personnel. So, in spite of the expense and because of the odds of prevailing in a legal fight with the district, we ended up placing Kate in a local preschool and settling on services after battling with the district for several months.

By Kate’s fourth birthday, my husband had returned home and left again--his third Iraq deployment in her four years of life. By Kate’s second annual IEP, she had been making remarkable progress in her language and social skills, was fully mainstreamed with an aide in a typical preschool class, and was receiving ABA instruction at home after school. Our little girl who was once considered non-verbal, with a severe diagnosis, was now getting invitations to birthday parties and going on play dates with a couple of her classmates she now considered “friends.” In spite of the progress, the district once again offered a placement that included putting Kate in their Severely Handicapped Special Day Class and refused to give us any information on the qualifications of their staff. When the district refused mediation and our letters of concern to both the Superintendent and the School Board were ignored, we made the difficult decision to continue on to a due process hearing, finding expert witnesses and preparing for what would be an 11-day administrative hearing.

Finally, six months after filing and halfway through the school year, the judge ruled that the district had denied Kate a Free Appropriate Public Education (FAPE). In the meantime, for the two years since Kate’s autism diagnosis, our family had been living in the small upstairs of my parents’ home, in order to afford the thousands of dollars for extra ABA therapy during service fluctuations and gaps, in addition to legal costs and expert fees. We were relieved and happy to finally be vindicated but continued to be frustrated at the obstacles to appropriate treatment faced by our family and others like ours--wondering how many others were losing the battle for their children.

Wounded Warrior
As the battle for appropriate services was just beginning on the home front, Buck was battling insurgents in Iraq. In May of 2007, I received a phone call from a hospital in Fallujah, Iraq. My husband had been shot twice by an enemy sniper as he tried to pull a wounded Marine to safety after they came under fire. While I was grateful that he was alive and would be coming home, I knew there would be a long road ahead. For the next six weeks, he would be moved from the hospital in Fallujah to Baghdad, then to Landstuhl, Germany, and finally to the Naval Medical Center in San Diego (NMCSD), undergoing multiple surgeries in order to save his left arm. At one point, he was sent home, but it was only a few days before he developed a severe infection requiring more surgery and specialized care back at NMCSD.

Juggling therapy sessions, school, kids, and IEP meetings, I managed to make daily visits to the hospital, often bringing the girls along with me. I would place a blanket on the floor of his room where they could play while I sat at his bedside, catching a conversation here and there between his heavy doses of pain medication. Nerve damage in Buck’s arm, while healing slowly, had left him unable to feel or use his lower arm and hand. Skin and bone grafts left him somewhat disfigured but still with a hopeful prognosis.

We found it difficult at times to explain Buck’s injuries to Kate, who was adjusting to all of the changes in her schedule and environment. Her sister, Halle, was missing soccer practices and other activities because I simply could not be that many places at once. After being released from the hospital, Buck continued to receive intensive therapy while I worked to prepare for our due process hearing and keep Kate’s program on track.

Buck would eventually be awarded the Purple Heart and the Bronze Star, with a “V” for Valor for his actions, and is back on full duty, having reenlisted for another four years. While some might question why, after all of these challenges, Buck wouldn’t just pack up and retire this year--get a nine-to-five job where the biggest risk involved is driving the morning commute--you’d have to know a Recon (Reconnaissance) Marine to understand. He has been known to say, that while “other people have jobs,” he has “a duty and obligation to serve.” Being in the service of his country is something that neither he, nor our family, has ever taken lightly. In fact, we consider it an honor. In his mind, there is still a job to do and as long as he is physically and mentally able, who better to do it than him? Which brings me to my final point.

If Not Me, Then Who? – Turning Adversity into Advocacy
I share the story of Kate and our family’s journey thus far not to evoke sympathy, but rather to bring those who read it to question the current state of affairs as it pertains to autism diagnosis and treatment, particularly for military families who are already asked to sacrifice and adjust more than most. I would also hope to share some of the most important lessons we have learned along the way with families who are facing similar situations. At the outset of this journey, I quickly realized that the systems and bureaucracies in place, that are supposed to be serving our children, are often failing. Still, as Kate’s mother, I also had to ask myself, “If not me, then who?” If I was not willing to stand up for my child who could not speak for herself, how could I expect others to do so? If I was not willing to make sacrifices in order to give Kate the best chance at an independent future, how could I expect others to do the same? Each time I was met by obstacles or adversity, instead of allowing myself to feel overwhelmed or victimized, I had to turn my anger, my worry, my passion, and my disillusionment into action. When I realized that the only power I had in this process was my ability to educate myself and advocate for my daughter, I put all of my energy into that purpose. While every child and every family is different, I would pass along the following advice to parents:

• Educate Yourself in your child’s diagnosis, treatment, local resources, and the laws that govern their education and services. You are already an “expert” on your own child – you are with them for most of their waking hours and have valuable insight into their strengths, weaknesses, personality, and needs. Do not underestimate the importance of your input as a member of their educational and medical team. By learning about your child’s disability, and your child’s rights as an individual to be educated and treated in an appropriate, dignified, and inclusive manner, you become their best and most important advocate. As their parent, you are often the only person in the room with a vested interest in their long-term progress and independence.
• Network With Other Families with similar experiences. After the first year of struggling through the education system, I was surprised that there were no local support groups for parents of children with disabilities. I started Solana Beach Special Parents with a few other parents in my area, and it has since grown to include parents from six other surrounding districts--all who have similar experiences and are able to network and support one another at our monthly meetings. We have been able to host guest speakers on inclusion, IEPs, and other topics that are of interest, but most importantly provide a source of friendship, inspiration, and education for parents who might otherwise feel isolated. We reach out to others in order to share ideas as well as each other’s burdens.
• Focus on Your Family. Military families have much to contend with in terms of family stress, particularly with multiple wartime deployments and frequent relocations. Add to that the financial and emotional stress of a child with autism, and it is understandable why so many of our families find themselves in crisis. I consider myself blessed to have such a strong relationship with my husband. I always say that when you have a husband who gets shot at for a living, you begin to realize that the dirty socks on the floor aren’t that big a deal. We have long ago decided that letting the little things get between us is a waste of the very little time we have with one another, so we have learned to cherish it instead. The same goes for our children. While our efforts to help Kate to progress and to learn can be intense at times, we love our children and enjoy them for who they are today and want to help them to be all they were meant to be tomorrow. Our family continues to be centered around our faith, which reminds us that what we are trying to accomplish for our children is not for them to get to Harvard one day, but to teach them how to lead joyful, satisfying lives.
• Take Care of Yourself so that you can take care of others. All right, so I haven’t got this one quite mastered--I’m usually the last one to get to the dentist and will often sacrifice my rest or free time in order to accommodate other people’s schedules. But I have found that I am a much better mom, wife, and advocate for my daughter when I take the time to do things that I enjoy occasionally. It is important that we do not lose our own personal identity to our child’s disability. If you like to sew or paint, schedule time to do it. Do your best to find respite care or support from family members so that you can have a date with your spouse or can get your hair colored at a salon, instead of out of a box. Trust me, it makes a difference.
• Take Action. I have found that turning adversity into advocacy is all about being willing to act where others may not. When we realized that Kate and other children were suffering from service gaps at the age three transition from Early Start to the schools, we lobbied for legislation at the State Capitol that would help ease this burden for families. Laws like the Individuals With Disabilities Education Act (IDEA) and the current changes in the military healthcare system’s treatment of autism originated with families of children with disabilities who demanded change and better treatment for them. Certainly, not everyone has the time or the energy to lobby Congress, let alone the local school board, but recognize that there are moments when we must ask ourselves, “If not me, then who?” Taking action is one way to empower yourself and to effect change in the systems and organizations that affect the lives of our children.

These days, Kate continues to make progress--her program is still cobbled together with three sources of funding, we still struggle with the school to implement her IEP, and we still work to improve the military healthcare system’s coverage of autism services. We also realize that while Kate’s wonderful progress is probably the exception, our journey and struggle to obtain services is all too common. There is much to be done in order to ease some of the burden of our military families who are raising children with autism. We also believe that while adversity can pull families apart, it can also be the glue that binds them. Our experiences these past few years have changed our priorities as a family and made us appreciate one another more. I have learned much about myself and my capacity to overcome obstacles. Our older daughter, Halle, has become a compassionate, mature, and responsible child who will no doubt credit her sister for teaching her many life lessons. We are grateful for all of these things. We can’t help but hope, however, that for the next military family with a child with autism, the journey won’t be as hard. It doesn’t need to be.

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A Military Leader's Perspective
"How Can This Be Happening?" A Grandfather Describes His Family's Journey with Autism

By Jerry Hilmes, LTG, USA (Ret)

A 1959 West Point graduate, LTG Jerry Hilmes served in a variety of command and staff billets during his 33 years of active military duty. After his retirement, he became division president for the Computer Sciences Corp., leading its largest division until his retirement in 2000. LTG Hilmes lives in Sarasota, FL, with his wife Geri. They have four sons and nine grandchildren.

Our grandson, Drew was diagnosed with autism at 26 months, while his father, MAJ Andrew Hilmes, USA, was stationed at Fort Leavenworth, KS. It was a shock to all of us. But the initial “How can this be happening?” reaction was quickly replaced by our extended family’s determination to do everything possible to rescue Drew from this other world where he resided quietly.

His mother, Nikki, immediately arranged appointments with various specialists and therapists to attack the problem and devise a treatment regimen. Treatment centered around Applied Behavior Analysis (ABA). As Drew started responding and a routine set in, Andy found out that he would be returning to Iraq for a second tour.

In his absence, Nikki found herself extremely busy ensuring that all three children prospered while their father was gone. Older sister Jocelyn continued in kindergarten and dance, and younger sister Madison continued her “ball of fire” terrible twos. She often ended up in daycare while Nikki took Drew to the clinic in nearby Kansas City for five hours of treatment five days a week. Drew prospered, started socializing more, and could say a few words when prompted. We were all encouraged.

ABA Treatment Disrupted
Andy returned from Iraq just in time for Christmas 2007. Drew had worked hard to learn to say “Hi, DaDa!” They celebrated quickly so they could be ready for the packers and movers who were arriving the day after Christmas. Andy’s transfer to the 1st Cav Division meant a move for the family to Fort Hood, TX. He became the S-3 (Operations Officer) of the 1st Squadron 7th Cav Regiment on orders to return to Iraq within a year.

In some respects, Andy and Nikki had to start all over again. They didn’t want to take Drew to the Austin area because it was an hour away, and that would be more onerous that the 45-minute trek to Kansas City had been. Plus the S-3 job is a very demanding one--getting the squadron combat-ready for Iraq. They rented a home near the Fort, exploring possibilities for Drew. There were none.

Faced with nothing, Andy and Nikki decided they would create a clinic. With the guidance and resource support of their previous clinic director in Kansas City, Andy and Nikki rented clinic space, bought furniture and treatment aids, hired therapists, and sought clients. Many came.

By March, Nikki, a certified speech language pathologist, had established an ABA clinic in Killeen, Texas. Today, as the clinic’s executive director, she and the staff work with Drew and 16 other children on the autism spectrum. She is also working on her BCBA certification. Drew’s treatment is ongoing, including not only ABA but also speech and occupational therapy. Drew has responded well; he’s a very social child with an interest in people and things around him. He remains, at four, largely non-verbal.

As Andy prepares to deploy to Iraq for the third time, Nikki is facing another long hardship tour, caring for Jocelyn, Drew, and Madison while maintaining a full-time job running the clinic.

My wife and I and Nikki’s parents are helping, but from Florida, we can only do so much.

Help from DOD and TRICARE
TRICARE was helpful getting the clinic started, as there had been no capability for special needs treatment in the area around Fort Hood. While TRICARE’s benefits for ABA therapy are generous compared to some insurance programs, they are not enough to cover the NIH-prescribed amount of 30-35 hours per week of ABA for children on the autism spectrum. The paperwork associated with getting benefits started is prodigious and discouraging.         

Pay Now or Pay More Later
While the official number of children with autism whose parents are active military personnel is 8,500, some say it could be as high as 20,000. Our best estimate is 16,000. To provide the recommended ABA treatment in Kansas for Drew cost $60,000 and TRICARE paid for half of that. The average amount of time to mainstream a child into the school system is about four years. That adds up to $240,000 for the ABA treatment. Additional costs—doctor’s consultations and home care—could easily add up to $60,000.

Undoubtedly, that is a lot of money. But the reality is that the government would pay about $3 million to care for an untreated autistic child over his or her lifetime. Plus the successfully treated child becomes a productive citizen, with the capability to work and pay taxes. In terms of finances alone, it is cost-effective to intervene early, adequately, and comprehensively. We owe that to our children and their parents, especially to the military families that already sacrifice so much for our country.

Can Autistic Families Prosper in the Military?
As a veteran, I have seen first-hand and empathize with the added hardships the military profession demands of a family struggling with autism. It’s very tough. Andy and Nikki are burning the candle at both ends, and have been for over three years. As a young officer, Andy has distinguished himself in combat, earning a Silver Star as a captain tank company commander (he led the attack into Baghdad in April 2003) on his first tour. Now, he has had to leave his family for a third time. They can look forward to another move upon his completion of duty at Fort Hood and another disruption in Drew’s treatment as they search for an effective clinic.

The stress and long hours take a toll. They have got to think, “Is it worth it? Should we take an easier route than operations with troops? Should we try to homestead someplace? How much can our family take?”

The Army desperately needs experienced warriors like Andy in their mainstream units. It is absolutely imperative that DOD, TRICARE, and the Congress continue to address the needs of the many families like Andy’s. Out of every 150 kids, at least one is autistic. The numbers are large – at least 3,000 in the Army alone.

It is not just a family issue; it is an issue that everyone in the country should think about, both in terms of what these families have sacrificed and our national security.

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An Advocate's Perspective
The Autism Puzzle: Where Do We Go From Here?

By Joseph M. Valenzano, Jr.

Joseph M. Valenzano, Jr is the president, CEO, publisher, and major shareholder of EP Global Communications, Inc (“Exceptional Parent Magazine”), a 38-year-old publishing and communications company that provides practical advice and emotional support to families of children and adults with disabilities and special health-care needs as well as the physicians and allied health-care and educational professionals who are involved in their care and development. EP today stands alone as the only special interest consumer publication in America bearing the endorsement of a professional medical society and offering Category I Continuing Medical Education (CME) credit for physicians inside its monthly pages, making it a peer-reviewed journal.

Man has two supreme loyalties - to country and to family...So long as their families are safe, they will defend their country, believing that by their sacrifice they are safeguarding their families also. But even the bonds of patriotism, discipline, and comradeship are loosened when the family itself is threatened.

Once again American sons and daughters are again fighting in far-off lands to rid the world of oppression and to ensure that our freedom and our way of life are secure. The enemy we face has little regard for the sanctity of human life, using terror against innocent men, women, and children as its principal tool. The memory of September 11, 2001 reminds us of this solemn fact. Yet, as in the past, whenever the war tocsin sounded, Americans have always answered that call. They realize, as did others who came before them, that failure in our mission is not an option. Yet, unlike the military forces of yesterday, many of our military members have another mission: raising families.

The Changing Face of Military Life
Fifty years ago, only about 15 percent of service members were married. Today, almost 70 percent of active duty men and women are married. And, in many instances both parents are serving at the same time, if not in the same branch then in a sister service branch. Single parents deploy like any other soldier. The care of their children is sometimes left to the soldier’s parents, siblings, or extended family. These demographic shifts have naturally led to an increased number of military families and to a higher percentage of children and adults with disabilities and special healthcare needs who are living on or near installations and bases around the world. Today, roughly one member of every squad in the Army is a soldier caring for a loved one with a disability or special need. This poses significant challenges for the entire chain of command and has dramatically altered the assessment of when a unit is ready for deployment.

In addition, chronic, long-term disorders pose a challenge for military medicine and military families who are confronted with a range of puzzling conditions, some of which they cannot even pronounce, let alone understand. At the center of all of this is the recognition that today, more than at any other time in our history, unit readiness entails more than making sure our soldiers, sailors, airmen, and marines are prepared for deployment. Unit readiness today demands that leaders recognize the importance of the family. A servicemember facing deployment needs to know that his or her family will be cared for, especially if those who are left behind are faced with caring for a child with developmental disabilities and special healthcare needs. If the servicemember cannot be assured of this, the unit is simply not ready.

Now let me be clear on this point: Military medicine is the finest in the world, and many of the innovations of rehabilitative medicine and surgical interventions are the direct result of experiences gained on the battlefield. But, just as the threat from our enemy is new, so also are the challenges of the conditions with which military families are coping—autism spectrum disorders (ASDs); brain blast injury, and post-tramatic stress disorder (PTSD); attention deficit hyperactivity disorder (ADHD), and movement disorders; and a host of other devastating conditions that tear apart families and create increased frustration and tension in the home.

None, however, present a more puzzling challenge than autism spectrum disorders.

The Puzzle of Autism
The explosion of childhood autism and related disorders in the United States constitutes the largest healthcare crisis in our nation’s history. Autism is the fastest growing disability in the country, now affecting an estimated 1.7 million individuals—more prevalent among our children than pediatric cancer, diabetes, and AIDS combined. One in 150 children is now diagnosed with autism, with recent data suggesting that as many as 1 in 67 boys are now affected. An estimated 85 percent of individuals with ASD are under the age of 18.

The alarming increase in autism spectrum disorders needs to be considered a national health emergency that requires the allocation of significant resources, aggressive research toward early identification and effective interventions and treatments for those affected, and rigorous investigation into the underlying causes of this disorder for the protection of future generations. There are some exciting research projects going on today that hold great promise for early identification—in the first few months of life—and interventions that can result in some positive outcomes. Preliminary results are extremely encouraging, and we need to find ways to help increase awareness about this research, find funding sources from the private sector, and educate as many people, both families and professionals, about the opportunities. In many respects, I believe this may have more short- and intermediate-term benefit than seeking to find the mysterious single cause of autism, because it is highly unlikely that ASDs have one single cause.

A recent study from Harvard University found that the cost of lifetime care foreach individual with autism is $3.2 million. With the aging of our population and the increasing number of children with ASDs, what are we doing about caring for those children, who will likely outlive all of us? When a child is diagnosed with autism, every member of the family is affected. While every family’s experience is unique, there are common challenges that most families face. These include dealing with the diagnosis, choosing the best treatment options, and building a strong and supportive family structure.

For military families, the difficulties presented by these challenges are often exacerbated by the lack of proximity to family and support networks, frequent relocations, school and training schedules, separation and frequent deployments, and more. Managing the stress that accompanies these challenges is critical to a family’s long-term health and well-being. And it is vitally important as a basis for establishing unit readiness.

Some Recommendations for Parents: Taking Action
In a recent article in EP magazine, Alan Harchik, PhD, BCBA and Lauren Solotar, PhD, both of the May Institute, offered a wealth of information for military families who have children with autism. I share some of their expertise and insights below.

According to Drs. Harchik and Solotar, “Suspecting that your child is not developing in an age-appropriate manner can be very frightening and stressful for parents and families. It is important that parents share your concerns with a physician, therapist, or early education specialist. Make sure your concerns are heard and questions answered. Advocating for a child to get an appropriate assessment is critical.” Parents should reject the constant raised eyebrows and the cavalier brush-offs that suggest “he will grow out of it.” Remember that well-trained physicians know full well the message so vividly portrayed in a 19th century painting reproduced in Lancet, the acclaimed medical journal that an observant parent’s evidence may ultimately be disproved but should never be ignored!

Dr. Harchik and Dr. Solotar continue by saying: “Accessing information and taking action are two steps that can help you manage anxiety. During this waiting period, it may be helpful to speak to other parents who have gone through this process. It can help you prepare to hear difficult information and think about different options that will fit into your family’s lifestyle.” Reach out. There are credible, trustworthy organizations and support groups that can provide a network of people who care. Know this one important fact, parents: You are not alone!

If your child does have autism, it is crucial to identify it as early as possible so treatment and intervention can begin. Although evidence shows that intensive early intervention during the preschool years results in the best outcomes, it is estimated that only half of the children with ASD are diagnosed before they enter kindergarten. We need to get better at this. Let it begin with you.

The American Academy of Pediatrics (AAP) recently released two reports to help pediatricians recognize ASDs earlier and guide families to effective interventions. (These reports and an autism checklist for parents are available at www.aap.org.)

The Diagnosis and Coping
Dr. Harchik and Dr. Solotar mention that “if your child is diagnosed with autism, give yourself time to absorb this life-changing information. You will need to adjust your hopes, wishes, and dreams for your child and your family. Talking to other families, sharing information, accessing all of the resources available, and developing both a formal and informal support network are all helpful in managing stress. For families living on military bases, spouses’ networks, support groups are also useful because they decrease your sense of isolation and increase your ability to cope. Groups offer opportunities to share stories about finding effective interventions, managing difficult situations, and moving forward with your life.

“Once a diagnosis is confirmed, it is helpful to learn as much as you can about the disorder. Obtaining research information about ASD and treatments from trusted sources on the Internet, conferences, and good quality reading materials help families manage their anxiety about the diagnosis. Be sure to share information with siblings, family, and friends so people close to you can learn what you are learning and provide support and feedback.”

Treatments that are Effective: How to Choose?
How can parents of children who have been diagnosed with autism choose the best treatment? It is important to recognize that there are many “treatments” that have not been scientifically evaluated as to whether or not they work. But there are some that do help. It is important to take a step back and try to make an objective decision.

Several intervention methods for children with autism are based on good research that has been tested and shown to be effective. One of these methods is applied behavior analysis (ABA). Hundreds of scientific studies done over five decades have shown that ABA is the most effective method to help children and adolescents with autism and other developmental disabilities. ABA facilitates the development of language, social interactions, and independent living by applying basic behavioral practices--positive reinforcement, teaching in small steps, prompting, and repeated practice. In addition to building critical skills, ABA can also help reduce everyday social problems and serious behavior disorders.

There appears to be great controversy with respect to whether or not ABA is medically necessary. The controversy stems from medical societies like the American Academy of Pediatrics that speak glowingly about ABA, stopping short of stating that its use in the treatment of children with autism is medically necessary. Let me state unequivocally that ABA is as medically necessary as the use of physical and occupational therapy in rehabilitative medicine. Neither of those therapies have ever had a randomized, double blind placebo controlled clinical trial to establish their efficacy and safety. But they are used extensively today and insurance is provided. They are used because they work. So does ABA, and thus TriCare and Modern Medicine need to stop playing word games and recommend funding the cost of ABA for our military families. It is simply the right thing to do.

Harchik and Solotar advise: “Unfortunately, the prevalence of methods that have no evidence of effectiveness is widespread. You see it everyday in advertisements, infomercials, and treatment options offered to parents of children with autism. Extraordinary claims are made that are unsupported by objective evidence. Risks to children are minimized or denied.” Find a trusted source who can point you in the right direction, and then stick with it.

“It can be very stressful choosing the ‘best’ treatment for your child, and more so if you are on your own,” say Harchik and Solotar. “Contradictory information makes this even more difficult, especially when dealing with a new diagnosis. Read the research and learn as much as you can about what treatments are supported by the most evidence. Ask questions. Talk to your providers about recommended treatments and talk to other families who have gone through a similar process.”

The Family Can be a Bastion of Support
Harchik and Solotar go on to mention that “as any family would adapt and respond to the twists and turns of childhood, so too does the family of a child with autism. But families of children and adolescents with autism must face some unique challenges and stressors that those of typically developing youngsters do not. One of the best ways to manage stress is to strive to maintain balance in your life and family. Designate time to take care of your other children, your relationship, and yourself.

“Siblings can play an important role in the life of a child with autism. Include siblings throughout all life stages and encourage them to develop independent relationships with their brothers and sisters who have autism. There are many books for and about siblings of children with special needs, and many communities offer support groups.”

Managing Stress
Drs. Harkik and Solotar give this advice for managing stress: “Taking care of a child with a disability puts a great deal of stress on a relationship; it is important to discuss your feelings and thoughts about treatment with your spouse. Each of you may need support in different ways, and it is important to communicate about your needs. If your spouse is deployed, it is even more critical to maintain a constant dialogue through e-mail, text messaging, or phone calls about the progress your child is making, how it has impacted the rest of the family, and how to support one another. It will take a significant amount of time and energy to develop and sustain appropriate services for your child with autism. For the spouse who is living on the installation, it is helpful to develop a support network.

“During periods of high stress, having a range of accessible activities can help you decompress. You need to take frequent breaks. Think about activities that might help you relax and feel good. Options include:

• Exercise.
• Take a time-out for yourself--visit with a friend or curl up with a good book.
• Call a good friend or close family member.
• Learn how to do yoga.
• Pamper yourself--take a long bath or get a massage.
• Go out to dinner or on a date with your spouse or a friend.
• Organize respite care.
• If you are religious, turn to your faith and church friends for comfort.
• Keep a journal to write down your thoughts and feelings.
• Develop a new hobby.
• Listen to music.

“Attending to your own needs, maintaining an awareness of the needs of each member of the family, and putting systems in place to support the family will help lessen disruptions, keep channels of communication open, and create an environment that is healthy, loving, and supportive for everyone, including the child with autism.”

And always remember that ASDs do not occur as a result of bad parenting. You did nothing wrong. But you have a chance to do a whole lot right!

Conclusion
Exceptional Parent has worked with military families for over 25 years. For the past two years, EP Global Communications, Inc. and its flagship publication, Exceptional Parent (EP) magazine have been privileged to work under a United States Army Cooperative Agreement called The Exceptional Family Transitioning and Training Project (“EFTT”), reaching out to provide editorial and educational coverage and resources to military families caring for loved ones with special needs as well as families caring for loved ones returning home from theatres of war with significant combat-related disabling conditions, both physical and emotional in nature.

We have chronicled the very best human interest stories we could find, depicting the incredible challenges overcome by our military families which highlights for us the need to ensure that we must do anything within our power to provide for those who have borne the burden of war while protecting us from an enemy who hides behind the cloak of terror. While this article focuses on autism, it is important to understand that, as a nation, we are faced with other great challenges as a result of the Global War on Terror. A staggering number of young men and women have returned from combat operations impacted by the scars of war in ways we have not seen before. Many have sustained severe brain blast injury resulting in severe depression and PTSD. There is a high incidence of divorce and an over-reliance on medication as well as alcohol abuse.

These are challenges all of us will be faced with for generations to come. But we must meet these challenges. We must find a way to support our men and women in uniform and their families. They did their level best to support and protect us!  Failure is not an option.

The stories, like the one contained in this newsletter, and throughout the pages of Exceptional Parent are a testament to the resiliency and dedication of our fighting men and women and the perseverance of their families. Like those who came before them, they have never quit in the face of adversity.

Neither should we.

About EP Global Communications, Inc.
EP Global Communications, Inc., parent company of Exceptional Parent (EP) magazine, is a 38-year-old, award-winning publishing and communications company which provides practical advice and emotional support to families of children and adults with disabilities and special healthcare needs as well as to the physicians and allied healthcare and educational professionals who are involved in their care and development. EP Global Communications, Inc. uses a multi-media approach to disseminate information via: its monthly award-winning publication, Exceptional Parent; Web site (www.eparent.com); clinical custom communications projects; the EP Bookstore (www.epbookstore.com) of disability books, DVDs and videos; live and online interactive CME/CEU accredited seminars and teleconferences on a wide range of special needs topics dealing with chronic, long-term disabilities.

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A Military Parent's Perspective
A Real Autism Plan Is Needed Now

By Lt. Col David M. Cohen, USAF

This article was originally printed in Military Medicine: International Journal of AMSUS, a journal of the Association of Military Surgeons of the United States and is reprinted with permission of AMSUS.

In December 2007, the Military Health System requested feedback on its website as to the extent beneficiaries thought TRICARE was providing care and support for autistic family members of those in military. While the intent of receiving feedback is admirable, a much greater effort must be made by the Department of Defense (DoD) to enable adequate support for special needs families that find themselves relocating as often as every year and being forced to find new health care providers with every move. Historically, DoD has handled autism treatment in an uncoordinated manner that has varied greatly by Service and geographic location.

The largest deficiency in how the military handles services for autistic family members is that there is no single point of contact in the Department, let alone in any of the services, to handle autism treatment for family members. Families with autistic children are forced to become professional researchers, turning to the internet, libraries, doctors, phone books, and word of mouth to identify not only what services may be available in an area, but what may or may not be covered by TRICARE.

When a military family makes a Permanent Change of Station move, there is a process through the Exceptional Family Member Program (EFMP), whereby each Service determines if the gaining location has facilities and services to accommodate family member requiring special needs. Unfortunately, as is the case for the Air Force, the review simply looks in the gaining community to see whether services are available; there is NO attempt to see if these services are "in the network" for TRICARE, would qualify for TRICARE's Extended Care Health Option (ECHO) subsidies or local county/state assistance, or must be paid totally by the member. Additionally, there is no clearinghouse at the new installation for information on appropriate schools or other medical services critical to treating autistic family members (i.e., a pediatric dentist with experience in handling autistic patients).

I propose that each Military Treatment Facility establish a Coordinator for Autistic Services. This person's function is not to create services, but rather (as the name implies) to coordinate those that already exist, both on the military installation and in the surrounding community. This person would interface with state, county, and local agencies to identify available services and points of contact for military families. They would work with the local school district(s) to develop an accounting of ongoing programs that the district provides, and more importantly, which schools in the district would provide these services, thus aiding families as they begin to house-hunt.

Another major role for the Coordinator for Autistic Services would be to help provide an accounting for the number of autistic family members sponsored by each Service. Difficult as it is to believe, none of the Services has an accurate accounting of the number of autistic family members under their care. According to a 16 March 2007 Government Accountability Office Report (GAO-07-317R) on the EFMP Program, " ... we could not identify the type or amount of special education services used by exceptional family members in the communities that we visited due to the absence of specific data on exceptional family members." The Marine Corps has developed an approximate number of autistic family members, but an accurate and updated accounting across all of DoD is crucial to knowing the breadth, funding, and communication aspects of any program providing autism services.

The July 2007 report, "Department of Defense Report and Plan on Services to Military Dependent Children with Autism" and its"included TRICARE ECHO Demonstration, providing increased benefit limits for autistic services by TRICARE, are well-intentioned; however, they do not meet the goal of satisfying the Congressional mandate, which, from the 2007 Defense Authorization Act says:

SEC. 717. Report and Plan on Services to Military Dependent Children with Autism.

(a) Plan Required - The Secretary of Defense shall, within 180 days after the date of the enactment of this Act, develop a plan to provide services to military dependent children with autism pursuant to the authority for an extended health care services program in subsections (d) and (e) of section 1079 of title 10, United States Code. Such plan shall include -

(1) requirements for the education, training, and supervision of individuals providing services for military dependent children with autism;

(2) standards for identifying and measuring the availability, distribution, and training of individuals of various levels of expertise to provide such services; and

(3) procedures to ensure that such services are in addition to other publicly provided services to such children.

(b) Participation of Affected Families - In developing the plan required under subsection (a), the Secretary shall ensure the involvement and participation of affected military families or their representatives.

(c) Report Required - Not later than 30 days after completion of the plan required under subsection (a), the Secretary shall submit to the Committees on Armed Services of the Senate and the House of Representatives a report on the plan. The report may include any additional information the Secretary considers relevant.

The Report is long on background and short on actionable items. It spends over 50% of its pages simply describing what autism is, the standards' by which Applied Behavioral Analysis (ABA), an autism treatment therapy, is certified, and a description of TRICARE and ECHO. While important to understand some background, Congress clearly understood the prevalence of autism (or they would not have mandated the report and its required plan in the first place) as well as well as functions of the military's health care system, and very plainly mandated that a plan be the focus of the report, not "any additional information the Secretary considers relevant."

The Report's plan focuses solely on ABA. Unfortunately, ABA is but one of many therapy options used to treat autistic children. Speech and occupational therapy are critical as well. Unfortunately, given that these particular services are provided under TRICARE itself (not under ECHO), and have separate paperwork and bureaucracy requirements, they are not included in the DoD plan; thus, once again, DoD's approach to providing autism treatment is splintered and uncoordinated.

Congress' requirement to have military families with autistic family members involved in the Report fell short. No request for input ever made it down to the "tactical level." I found out about the report totally by accident from one of the TRICARE coordinators at my base while discussing another issue with them, and by that time, it was too late to volunteer to become an active member of any panel attempting to address the issues.

Perhaps the biggest deficiency in the Report is that it was too narrowly focused. In fact, in a 19 Nov 07 letter to Dr. S. Ward Casscells, Assistant Secretary of Defense for Health Affairs, The Military Coalition states, "We believe the Congressional mandate calling for the Department of Defense (DoD) to 'develop a plan to provide services to military dependent children with autism' speaks to a broader issue than simply ABA therapy ... [the report] is a long way from the development of a comprehensive plan to meet the needs of military families of autistic children even under the limited parameters of the ECHO program."

My son, Benjamin, who is autistic, is now seven years old. Our success with his therapies and treatment throughout four different assignments is not a testimony to the system, but rather to his mother's and my initiative, persistence, and informal networking with educators, doctors, and parents of other autistic children.

DoD should quickly comply with Congressional intent by developing and fielding a broad-ranging program to provide treatment for autistic family members. We owe Ben, others like him, and their families a comprehensive support structure to get the necessary care and treatment to conquer autism. The results will be happier families, reduced stress, and children who are able to truly develop to their potential.

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ISSUE: The Exceptional Family Member Program
Identifying and Supporting Military Families with Special Needs

The Department of Defense (DoD) is responsible for establishing policies that extend to the military services: the Army, Navy, Air Force, and Marine Corps, including the associated reserve components.  In the case of service members and civilian personnel within DoD who have family members with special needs, DoD has established the Exceptional Family Member Program (EFMP).

It is important to understand that the term EFMP refers to two different functions: a personnel function and a family support function.  The former serves administrative and management purposes and is uniform across all services.  It helps the services make personnel assignments consistent with the needs of the service member’s family and the availability of required medical services, provides case management, and informs agencies providing managed care support of specific support needs.  EFMP as it pertains to family support is intended to provide a range of direct support for families that have children with special needs including autism.  It is not standardized and can vary widely depending on the service and location.

According to DoD’s Web site, the EFMP personnel function:

• Is a mandatory program for all active duty service members
• Is standard across allservices
• Identifies family members with special medical and/or educational needs
• Documents the services they require
• Considers those needs during the personnel assignment process (especially when approving family members for accompanied travel to overseas locations)
• Involves the personnel and medical commands and the Department of Defense educational system overseas

On the other hand, the EFMP family support function:

• Is not mandatory. DoD policy on family centers allows, but does not require, the military services to offer family support services to exceptional family members within the military services' family support systems.
• Differs from service to service.

The Army and the Marine Corps staff their family centers with individuals whose responsibilities are to provide support to families with exceptional family members. They are called the EFMP managers (Army) or EFMP coordinators (Marine Corps). The Marine Corps is the only branch that provides case management.

In the Navy, the EFMP staff that support the personnel function may also provide family support services, but the Navy does not staff their family centers with EFMP coordinators.

In the Air Force, the Special Needs staff is located in the Military Treatment Facility (MTF) only. The EFMP Re-Assignments Branch is a personnel function. Family Support Center staff provides family life education, information and referral and personal finance management services but do not have a designated coordinator.

Enrollment
EFMP enrollment is mandatory for active duty service members and required immediately upon identification of a special need. The required forms for enrollment are:

• DD Form 2792, Exceptional Family Member MedicalSummaryfor medical issues only
• DD Form 2792-1, Exceptional Family Member Special Education/Early Intervention Summary for educational issues

Caution:  Remember that enrollment primarily supports the personnel function.  EFMP does not inform any support agencies of required services.  For treatment matters and EFMP family support, the service member and spouse will need to consult with the medical and family support centers respectively.

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NEWS FROM OAR

OAR Receives Grant for An Autism Guide for Military Families

During this time of war with its attendant high tempo of operations and sacrifice, military families already face an extreme set of circumstances.  Add the challenges of autism, and many families are understandably pushed to the brink. Military sources indicate that there are more than 13,000 military dependents--the majority young children--with some form of autism.  Their families face all the emotions and challenges that accompany having a child diagnosed with autism, compounded by the realities of military service: war, extended family separation, frequent moves, varying access to specialized healthcare, and other stressors that complicate and often work against effective treatment for children with autism.  These families need help navigating these uncharted and difficult waters.

With that in mind, the American Legion Child Welfare Foundation has awarded a grant of $40,980 to OAR to create An Autism Guide for Military Families.  OAR envisions the project as consisting of two complementary components: a comprehensive, Web-based resource accessible to military families wherever they live and a companion, hard-copy resource guide intended as a personal reference tool for each parent and family.  In combination, these resources will provide information 24/7 about autism and autism treatment; specifics about navigating the military healthcare system; lists of autism resources, schools, and support available at or near military installations; and practical tips and suggestions on handling the many transitions military dependents with autism must face.

“This project is one that is near and dear to my heart,” says OAR Executive Director Mike Maloney, a 23-year veteran of the U.S. Marine Corps.  “It allows me the opportunity to draw upon the experiences of my military service and my subsequent work with OAR in a manner that will serve the interests of both the military and the autism communities.”

Work on the project will begin in January 2009, but Maloney is already outlining the project and looking for volunteers to help in concept and content development and design.  Anyone interested should contact him at: mmaloney@researchautism.org.  OAR expects to have both parts of the project fully tested and operational by the end of 2009.

“This project will enable parents of military dependents with autism to better care for the needs of their children,” says Maloney.  “We are grateful to the American Legion Child Welfare Foundation for its support for military families touched by autism and OAR through this project.” 

Combined Federal Campaign Donations Fund Expanded Programs

Since September 11, 2001, we have seen and read about the courage, commitment and service of the men and women who serve in the U.S. Armed Forces in Iraq, Afghanistan, and other places around the world almost every day. While debate about the commitment of U.S. forces abroad continues, especially in this election year, there is no debate regarding the performance of the men and women in uniform, whose service and sacrifice have earned them our universal respect and gratitude. What goes unseen, however, is their generosity above and beyond their service as they contribute millions of dollars to charity through the annual Combined Federal Campaign (CFC) that is currently underway in most places.

According to the reports from the 2007 CFC, members of the U.S. military services and federal employees around the world pledged more than $271 million to charity—including $170,000 to OAR--in last year’s campaign. OAR likes to measure success in $30,000 increments, which represents the cost of one research study. Using that standard, last year’s support provided funds for almost six new research studies, more than half of the 11 actually funded.

OAR first participated in the CFC in 2003 as a local agency in drives in the National Capital area, Maryland, and Virginia. Since 2004, OAR has participated as a national charity as a member of the Health and Medical Research Charities of America federation. Having once again met all the qualifying standards for the CFC, OAR is participating at the national level for the fifth year in a row.

“The generosity of military service members and federal employees never ceases to amaze me,” says Mike Maloney, OAR’s executive director. “Even during this time of war abroad and despite the demands of their duties and jobs, they still take time and find ways to make a difference for others.”

While many of OAR’s programs provide information that is useful to parents and families across the board, none has uniquely addressed autism as it impact military families. According to Maloney, that is about to change in a significant way.

“Thanks to a grant we just received from the American Legion Child Welfare Foundation,” Maloney reports, “OAR is going to create a comprehensive web-based resource for military families that have children with autism and publish a companion resource guide for individual families within the next year. Although the project will be paid for through a grant, developing this resource is a way to give back in a meaningful way to a community that has supported OAR for many years through the CFC.”

To qualify for the CFC, a charity must apply and meet a series of standards each year. Principal among these is to have a ratio of expenses to revenues of less than 25 percent and to be eligible nationally to demonstrate viable program services in at least 15 states in the past three years. OAR met the 15-state requirement five years ago and has a qualifying ratio of 12.9 percent for this year’s CFC campaign.

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Profile: Military Runners Lead by Example in the RUN FOR AUTISM

The RUN FOR AUTISM is a charity running program that has raised more than $2 million for autism research and become OAR’s signature awareness and fundraising activity since the program began in 2003.  During this span, OAR has been honored to have had runners that were serving on active duty or had prior military service, including a group of runners that organized the first RUN FOR AUTISM – Iraq last January. (http://www.researchautism.org/resources/newsletters/2008/February_2008.asp#nine)

Marines from Pensacola Naval Air Station were part of the RUN FOR AUTISM-Marine Corps Marathon team this year. Pictured from left to right: Staff Sergeant John Langan, Staff Sergeant Daniel Driskell, Staff Sergeant Jasson Hemmerling, Staff Sergeant Jason Hewes, Gunnery Sergeant Jason Statema. Not pictured Sergeant Jonathan Fleischer.

Some runners have been fathers, mothers, siblings, or relatives of a loved one with autism; others have run in honor of a friend’s or fellow service member’s child. Among them all, each of the services have been well-represented, and each military runner has honored OAR and the RUN FOR AUTISM through his or her participation and example.

Since OAR’s office is based in Arlington, Va., and Mike Maloney, OAR’s executive director, is a retired Marine, the Marine Corps Marathon seemed like the ideal place to start the RUN.  In 2002, when Maloney contacted Marathon representatives at Quantico, Va., he received an enthusiastic welcome from an old comrade, who worked on the Marathon’s staff.  What he didn’t know until that day was that his friend had a daughter with autism. 

Thus began the RUN FOR AUTISM. Since the very first, active duty and former military members have been standard bearers for the RUN program, which has expanded to other major races, including Chicago, Houston, Miami and New York City; local races across the United States; and most recently, even the Virginia Triathlon Series.

Meet some of our military runners.

Air Force
Air Force LtCol Gregory Beeker has been a fixture since the first RUN FOR AUTISM and is currently the only OAR runner that has participated in the Marine Corps Marathon (MCM) in each of the past six years.  Beeker says that it is “becoming an addiction.”  In 2007, he ran his “personal best” marathon ever with a 3:49 finish.

LtCol Gregory Beeker running the Marine Corps Marathon

Beeker came to run with OAR because of a very special little girl that he met through a military friend whose child had autism. “I was able to see the challenges that this disorder created for this little girl, her family, and her school system. Additionally, my brother's stepson, Joseph, has been diagnosed with Asperger Syndrome. At first, I ran for them,” he says.  “Now,” he continues, “I run for them and becauseof the great research that OAR is conducting with the funds we raise each year.”

Currently assigned to the War and Mobilization Planning Policy Division at the Pentagon, Beeker looks forward to participating in the MCM or another fall marathon with OAR to keep his streak going.  

Other Air Force runners include OAR Board member Greg Smith, (LtCol Retired), who has participated in the shorter distance event that has been held in conjunction with the MCM in each of the six years as well, and Nancy Wright, who came from Aviano, Italy, to run in 2005. LtCol Mark Weston, who also serves in the Pentagon with the Chief, Fighter and Bomber Requirements Division, has run the MCM the past two years and will be doing the ING Miami Marathon in January 2009.  Both Smith and Weston dedicate their efforts to their children, a daughter and son respectively, who have an autism diagnosis.

Army
Team Teddy is one of OAR’s standout teams, led by Andy and Kathy Off, parents of Teddy. Both West Point graduates, they left promising careers in the Army in large part to create a stable environment for Teddy. Andy and Kathy take turns running in alternating years and recruit relatives and friends to join them each year. In 2007, the team was OAR’s top fundraiser with $10,025, and the three-year total (from 2005 to 2007) exceeded $20,000.

LtCol Tom Steinbach at MCM

Another Army veteran making a difference is Rod Lauredo who, along with his wife, Susan, was instrumental in introducing the RUN FOR AUTISM to Miami in 2007. Although Lauredo’s Army days are well behind him, his final assignment was in Miami, which he now calls home. He has poured his passion for running and fitness that began in the Army into support for autism research and OAR. He dedicates each race he runs to his son Oliver, a young man with Asperger Syndrome. 

Army Lieutenant Colonel and Pathologist Tom Steinbach, helped lead OAR into the sport of triathlon as one of OAR’s first TRI FOR AUTISM participants. In 2007, Steinbach started doing triathlons after years away from the sport.  When he signed up for the Patriot’s Half, a race in the Virginia Triathlon Series, he noticed that OAR was the official charity partner for the event. 

Tom and his wife have two special needs children, and he had prior charity fundraising experience supporting SUDS (Soldiers Undertaking Disabled Scuba).  He decided that doing the same for OAR would give extra meaning and motivation to his comeback.  Steinbach also added the Marine Corps Marathon to his triathlon training regimen last year in preparation for his first attempt at an Ironman Distance triathlon, the Beach to Battleship, which consisted of a 2.4 mile swim, 112 mile bike and 26.2 mile marathon.

Navy
Captain Tom Logue, USNR, currently on the faculty at the U.S. Naval Academy, ran as part of OAR’s second RUN FOR AUTISM – Washington, DC team in 2004 in honor of his son, Thomas. (See their story at http://www.researchautism.org/resources/newsletters/archives/2004_aug.htm#specialsection2.)  Tom’s efforts inspired his best friend from childhood to follow his example and run the Houston Marathon for OAR in January 2005. (Read the story at http://www.researchautism.org/resources/newsletters/archives/2005_feb.htm#specialsection3.) Tom returned for an encore in 2007.  

Lt. Stephen Marty, USN, with girlfriend Susi Moreno after the NYC Half Marathon

Lt. Stephen Marty, USN, has participated in the three Marine Corps Marathons as an OAR runner and ran the NYC Half marathon this past July along with his girlfriend. Marty, who is currently assigned as the Congressional Liaison for the Navy’s Appropriations Office located at the Quantico Marine Corps Base in Va., chose to run for autism in honor of his 5-year old nephew, Andrew, and his family. 

Besides running and raising money for autism research and OAR, Marty unexpectedly became part of OAR’s and the MCM’s marketing campaign for 2008, when a photograph of him taken during the 2007 MCM was used in the Marine Corps Marathon’s promotional materials throughout the country. “It was great moment, and it was nice to provide some publicity for OAR,” he says.

Marine Corps
As noted earlier, it was Mike Maloney’s Marine Corps service that first connected the Marine Corps Marathon and OAR.  Maloney has since handed the baton to another Marine and one-time military athlete of the year, Doug Marocco, who now heads up the RUN FOR AUTISM program. Beginning with the first race in 2003, a number of past and present Marines have participated as members of the RUN FOR AUTISM team.  Among them are Andy Bourquin, Garlund Gee, Jonathan Jenkins, OAR’s Mike Maloney, John Nash, Joel Pearson, Garland Smith, the “Pensacola Marines,” and a team of Marines who have been friends since Officer Candidates School, the Do-It-Again Deltas, running for a friend’s daughter with autism. http://www.researchautism.org/resources/newsletters/archives/2005_junejuly.htm#specialsection2

Garland Smith, now in his late sixties, drives a semi-truck for a living from Wisconsin to the Pacific Northwest and back.  He and his daughter, Kathy Errthum, joined the team in 2003, dedicating their run to Garland’s grandson, Austin, then 13.  They ran together each year until 2007, when Austin, now 17 , and Kathy’s husband, Tony, joined them.  That stands as the first and only time OAR has had three generations represented on a marathon team and the first time a person with autism completed a marathon as part of OAR’s team.  Needless to say, it was a special day for Garland, Kathy, Austin, and the family. [Read the story about Garland and his family at http://www.researchautism.org/resources/newsletters/2008/January_2008.asp#nine.]

All three generations together at the Marine Corps Marathon in 2007. From left to right: Tony, Kathy, Garland, Austin, & Mike Maloney, OAR Executive Director

Captain John Nash found OAR through a brochure at a uniform shop while assigned for the summer as a Marine Officer Candidates School instructor at Quantico in 2006.  After returning to his regular assignment as Marine Officer instructor at the University of Illinois, Nash decided to run the inaugural ING Georgia Marathon in April 2007 and raise money for OAR on behalf of a family member.  As often happens to Marine officers, he returned to Quantico that summer to attend a professional school and decided to follow up his solo efforts in Georgia as part of a bigger RUN FOR AUTISM team at the Marine Corps Marathon.  Nash has since completed the MCM and his school, returned to the operating forces, and is serving in Iraq with Second Reconnaissance Battalion.  He expects to return to Quantico, often called the “Crossroads of the Marine Corps,” and plans to RUN FOR AUTISM whenever the opportunity presents itself again.     

Jonathan Jenkins is the president of Corps Strategies, a company that provides software solutions to businesses.  As his company’s name not too subtly hints, Jenkins is also a Marine, a Gunnery Sergeant in the Marine Corps Reserve.  He ran his first marathon for OAR in 2007 and his second in October just two weeks after returning from a tour in Iraq, where his training was limited to running countless laps in the desert sun around a small Iraqi base or putting in miles on a treadmill.  Jenkins resides in Chester County, PA., and already is planning to be back at the MCM as part of OAR’s team again in 2009.

These personal snapshots of OAR runners represent but a partial list of participants.  Yet the people profiled here represent the selfless efforts of every one of OAR’s military runners and mirror the nature of their service to our country.  OAR thanks each for their service and for honoring OAR and the cause of autism research by their participation in the RUN FOR AUTISM. 

For information on the RUN FOR AUTISM, please visit www.runforautism.org or contact Doug Marocco at run@researchautism.org.

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