BY JENNIFER WOODWORTH, PSY.D
Jen Gerberding felt that the military lifestyle was better understood when surrounded by other military families; that being separated due to the military is common for training, deployments, or certain jobs, and not viewed as a hindrance to the family.
One of the main challenges that you might first think of when hearing the diagnosis of autism is of rigidity, inflexibility, and consistent structure. However, a military family encounters unique situations that require just the opposite: flexibility, adaptability, and resilience.
FAMILY PROFILE
In June 2012, The Gerberding family moved from Camp Pendleton to a house they bought in Riverside in order to begin a new chapter in their life. Tom was just beginning three years as a Drill Instructor, which would keep him away from his family for weeks at a time. Jen was navigating a new community and school on her own with four children. When River was only seven months old, Jen began noticing behaviors he displayed, such as banging his foot in the crib repeatedly, rocking, lack of eye contact, and not wanting to be held. She took him for medical checkups and psychiatric evaluations. At 14 months old, River was diagnosed with autism. At the same time, Riley was struggling at his new school and was eventually diagnosed with Asperger’s syndrome. Unfortunately, Jen found the education system difficult to navigate for Riley and a lack of services within a reasonable distance for River. In June 2013, a year after moving to Riverside, they moved back to Camp Pendleton, where services for Riley and River were readily available and within close proximity. Jen also felt that the military lifestyle was better understood when surrounded by other military families; that being separated due to the military is common for training, deployments, or certain jobs, and not viewed as a hindrance to the family.
HEALTH/MEDICAL CARE
TRICARE is the health insurance for military families. Many services are covered under TRICARE including services for special needs family members such as occupational therapy, speech therapy, physical therapy, Applied Behavior Analysis, and mental health visits. There are two types of TRICARE plans. TRICARE Prime is the most affordable and comprehensive coverage which includes seeing a primary care manager who then refers to specialists. Most of the time, there is no paperwork to fill out and no out-of-pocket expenses or co-pays when seeing a professional with a referral. TRICARE Standard is a fee for service plan available to non-active duty service members and does not require referrals to specialists. However, you may pay for services up front, may require prior authorization before seeing the chosen professional, and will have a co-pay in most cases.
Extended Health Care Option (ECHO) is an additional health benefit provided to military families who have a child with a disability. Beginning this year, there is no financial cap for services, allowing families to receive the therapeutic services that they need without worry of hitting a limit. In order to access ECHO, families must register with TRICARE in their region and be enrolled in the Exceptional Family Member Program (EFMP). ECHO also provides respite care from authorized providers. The ECHO program does include a monthly deductible for services
based on the service member’s rank. Unfortunately, respite care is on hold for the Gerberding family because authorized providers are limited and currently they are on a waitlist to receive sixteen hours of child care a month.
Jen has found TRICARE to be sufficient medical care for Riley and River, providing them the services that were recommended. “It’s (medical bills) are one less thing I have to worry about,” Jen said. Due to the military, her family has medical coverage they need even though the trade-off is her husband being separated from the family.
Medicaid is an additional option for medical care for children with special health care needs to assist with care. Each state has different requirements and services, please research for your specific area. There may be a waiting list for services, but it would be beneficial to file the paperwork, even if you might be moving. Due to severe dental work needing to be completed, River required sedation which was not covered under the military dental insurance and Medicaid was able to cover the additional expenses and allow River to have the appropriate care.
Social Security Income (SSI) is another resource available to families who have a child under the age of 18 and qualify with a disabling condition. Income, resources, and documentation are reviewed prior to a decision being made and periodic updates are required.
ACT Today! is a nonprofit organization that provides grants to military and nonmilitary families with a child with autism to assist with therapeutic care.
EXCEPTIONAL FAMILY MEMBER PROGRAM
Exceptional Family Member Program (EFMP) is a mandatory program to enroll in when active duty military members have a family member with a special need. They assist in coordinating services, providing education to the family, and continuity in services when relocated. Jen has found EFMP as a wonderful resource that has assisted her with providing an attorney to assist with Riley’s Individual Education Plan (IEP) and providing a case worker to attend and record all IEP meetings for Riley and River. EFMP has also provided her family with resources and
educational information about autism. Jen feels that the EFMP program has been valuable in creating an inclusive environment for her family and has provided workshops, play dates, and sensory friendly movies for the families on Camp Pendleton. In addition, the Gerberding family has attended holiday meals and holiday parties put on by EFMP specifically for the enrolled families. Jen stated that she has met other families with a child with autism through EFMP activities and encourages others to attend events sponsored by EFMP.
Before moving back to Camp Pendleton, the Gerberding Family was awaiting orders to a new duty station. Tom received orders to Perris Island, SC for drill instructor duty and Jen was informed by the EFMP coordinator that there were sufficient services for Riley and River. Jen was diligent in following up with each service and discovered a waiting list for ABA services and an inability to provide care required by River. The EFMP coordinator was notified, followed up, and made arrangements with Tom’s monitor to have his relocation orders modified. Jen suggests always double checking on treatment services and researching your options before making any decisions in your child’s care. This can limit the unnecessary stress or change that your family may experience.
SEPARATION
When living in Riverside, Jen felt that her family situation was not understood by her neighbors or teachers at the school and felt little support from the community. Her husband was gone all week, home for short times on the weekends, and she was on her own most of the time. This was one of the reasons for moving back to Camp Pendleton. As with most children on the autistic spectrum, Riley and River thrived with consistent schedules and routines. A main struggle Jen had with Riley was when she would tell him that Tom would be home and then due to a work issue, he would not arrive when she had stated. Riley’s anxiety would increase and he would perseverate on the time Tom was supposed to have been home; leading to talking back to Jen and difficulty following through on what was asked of him. Also, with little time spent with River, Tom is rejected by River when he is home. River continues to tell Tom to “go away,” which impacts the relationship between father and son. “Autism magnifies our struggles times ten,” Jen said, especially since flexibility is not a strength for children with autism, yet so highly valued in the military community.
Soon, Tom will complete his Drill Instructor duty and be able to spend more time with the family. This comes with some challenges, including Tom learning techniques and tools to assist the children in being successful. The children are used to things being done a particular way, which Jen has developed in order to limit tantrums and maximize success. Drill Instructor duty has also kept Tom from attending medical and therapy sessions and IEP meetings, so hopefully he will be able to familiarize himself with current challenges and progress in the upcoming months.
Even though stationed at Camp Pendleton for another three years, Tom will be involved in trainings and workups for a deployment next year. His variable and constantly changing schedule will continue to be a challenge in managing the scheduling of therapy appointments and activities for Riley and River as well as the recreational activities for Micky and Sissy.
SELF-CARE
The parent at home can often become overwhelmed with all the appointments and activities for their child and may experience an increase in anxiety or depression themselves. Much time is spent on items such as understanding the diagnosis to navigating the medical insurance that often little time is left for leisure activities for the parents. Utilizing the respite care to connect with your spouse, going out for dinner, or getting a massage is encouraged.
Jen struggles with taking time for herself to de-stress, however does incorporate exercise and playing her guitar into her days. She decided to pursue her degree in nursing as part of her own mental health care after River was diagnosed with autism. Jen often asked herself how she could “fix” River, even though she knew she couldn’t. She recalled being overwhelmed and absorbed with information and therapies and stated, “You can drown in it if you don’t do something else.” Jen plans on completing her requirements for nursing school this fall.
SIBLINGS
Having a child with autism takes a lot of time and patience. The impact on other siblings in the household can include less time spent with their parents, less ability to participate in activities, and enduring rigid schedules. Jen described Micky, now 15, as self-sufficient, mature, accepting, and independent. “He’s the man of the house,” stated Jen, stepping up and taking responsibility for himself and his siblings. He is involved in football at his high school. Sissy, now eight, is involved in the Big Brother/Big Sister program which allows one on one time dedicated to her. Jen described Sissy as patient, loving, and always going to bat for her brothers. “Sissy is understanding to any child, she doesn’t see a disability.” One of the main struggles Jen described is how Sissy is now more mature than Riley in social situations; understanding social cues and subtle humor. Riley and Sissy are not only close in age but had a close friendship that is being strained due to their differences in social understanding.
Although Riley can be stubborn, he is also nicknamed “Smiley Riley” for his ability to make others laugh, and has developed a sense of humor, according to Jen. Jen said that Riley and River share a bond possibly due to both being autistic. Jen described River as “highly intelligent,” his first word being “buttons” and always wanting to learn by mimicking Riley. River loves Legos, music, superheroes, and cuddling with Jen.
COMPLICATING ISSUES
On top of a diagnosis of autism, children with a spectrum disorder can also experience mood or anxiety disorders which can exacerbate symptoms of autism. Lack of motivation, fatigue, inability to sleep, and worry can all increase the symptoms of rigidity, perseveration, and oppositional behavior. If there is a change or worsening of current symptoms, it is important to seek medical and mental health assessments.•
ABOUT THE AUTHOR:
Jennifer Woodworth graduated from The Chicago School of Professional Psychology – Irvine Campus – in August 2013 with a doctorate in Applied Clinical Psychology. She is a licensed clinical psychologist and will be in private practice in Vista, CA. She has worked in the mental health field for six years, and is a Marine Corps wife of 12 years and mother to three children ages five, seven, and nine.
