BY JENNIFER WOODWORTH, PSY.D
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
Expecting a child can be exciting and anxiety producing at the same time; and pregnancy complications can add to the intensity of all emotions experienced. In 2008, at week 18 of her pregnancy, Christina Kerby was put on bedrest due to shortening of her cervix. At just 25 weeks, Jerome and Gabrielle Kerby were born at Naval Medical Center San Diego, each weighing in at 1lb 10oz. For the first nine minutes after deliver, Gabby had no heart beat, however after three months in the neonatal intensive care unit, she was able to go home. Jerome followed after an additional month and a half and continued to need oxygen until he was nine months old.
Due to the premature nature of their births, Jerome and Gabby were closely followed by early intervention services. Jerome began physical therapy around nine months old to help with gross motor skills and began receiving occupational therapy soon after. Christina and Sean recognized a deficit in Jerome’s speech and he began speech therapy at age two. Jerome also displayed some sensory issues including sensitivities to texture, sound, and light. He engaged in repetitive play, humming, and became fixated on certain items, which were all behaviors that were monitored during Jerome’s early development.
HEALTH /MEDICAL CARE
TRICARE is the health insurance for military families. Many services are covered under TRICARE, including services for special needs family members, including 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 upfront, may require prior authorization before seeing the chosen professional, and will have a co-pay in most cases.
Jerome was placed in early intervention services so therapies in the beginning were easy to obtain. However, once the Kerby family moved to Parris Island, South Carolina in 2012, it became more difficult to get placed for therapy services. While stationed in South Carolina, Christina sought out a developmental pediatrician and receiving sufficient services became challenging. A developmental pediatrician only came into town to Naval Hospital Beaufort from Camp Lejeune four times a year for one week at a time and appointments were difficulty to obtain as they were so limited. The wait list for a non -military provider for developmental pediatrics was close to a year-long. Christina explains that even though Jerome’s pediatrician was determined to provide the best care for Jerome, “not every doctor has the inside knowledge to care for medically complex children,” especially with short appointments. Jerome received occupational, physical, and speech therapy while in South Carolina. He is currently seen by a developmental pediatrician at Balboa Naval Hospital, almost 50 miles from their duty station at Camp Pendleton, and he currently receives weekly physical and occupational therapy all covered by TRICARE. 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, the Kerby family does not currently qualify for respite care which is based on Jerome’s medical needs.
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.
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 (EFMP)
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. The Kerby family has had a positive experience with the Exceptional Family Member Progam, as Christina points out, “EFMP is a wonderful program that is there long before you arrive to the base.” While at Parris Island they offered sports, swimming lessons and other activities that were strictly for the EFMP families, however these programs are not all offered at Camp Pendleton. They are able to provide extra activities for kids like Jerome, where they can participate in without feeling different or excluded. EFMP can also provide education, workshops, play dates, and sensory friendly movies for families that are a part of the program.
EDUCATION
Navigation of the education system can be challenging for a family who is advocating for their child to get the attention they need in order to be successful in academic and social situations. “Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.” (http://idea.ed.gov/). Speak with the local school district about how IDEA can be utilized to provide appropriate services for your child.
Jerome has been in special education since he was three years old. He began in a special needs preschool at age three, moved to half day special needs/half day mainstreamed at four years old, and has been attending mainstream classes with an active Individualized Education Plan (IEP) since the completion of preschool. Additionally, Jerome does not “quite fit within the standard of non-verbal autism that the standardized test is geared towards,” which can challenge his educational placement. His current IEP focuses on ways to create the most success including attention adaptation, structured routine, built in motivators, visual schedule and verbal reminders. Social narratives assist Jerome with his peer relationships and he has supervision at lunch to ensure that he is eating his food.
MOVING & SEPARATION
The biggest challenge the Kerby family has faced is re-establishing services after a move. Waiting for referrals and authorizations for therapies has created a gap in Jerome’s treatment where he has gone several months without any services after moving. Changing schools and setting up the IEP again is also challenging as it can take months for teachers to learn about Jerome and the accommodations that can assist him in being successful. Also, while at Parris Island, Sean was non-deployable and home almost every evening for dinner and available to the family on the weekends. This allowed him to spend time and connect with Jerome and Gabby. Once returning to Camp Pendleton, Sean spent time gearing up for a deployment which meant an unpredictable schedule and more time away from home. Jerome had a difficult time adjusting to the inconsistent nature of Sean’s availability. Currently Sean is deployed and Christina is managing the household, her job, Jerome and Gabby’s activities as well as Jerome’s therapies.
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. With the ability to connect online, Christina has been able to receive information from Facebook groups that offer advice and support. She noted that her biggest support comes from families and friends. Jerome no longer qualifies for respite care since he does not require care from a medical professional; however respite care has been helpful in the past. Christina also recently began working part time which allows her to refresh and regroup for her family.
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. Christina describes Gabby as Jerome’s protector. She wants to help any way she can. Gabby often worries about Jerome and has to be reassured that he is okay. She has no qualms about sharing “The Golden Rule;” treat people as they want to be treated. Christina keeps them separated in school so that Jerome can grow and be independent without Gabby. One of the main impacts on Gabby is the time spent attending Jerome’s therapy appointments. Jerome and Gabby are both kindhearted. Jerome tries his best and knows no stranger; he will talk to everyone he sees. Jerome loves technology, cars and building Legos. Gabby loves dolls, pretend play, and uses her creative side by drawing, coloring, and baking.
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.
SOUND ADVICE
Christina encourages parents to utilize any social programs available. She encourages “all families to create a space for their child to calm down and regroup.” The Kerby family has set up a therapy room in their home that includes weighted blankets , dark heavy blankets, a 4’x4’ ball pit, platform swing, and other therapy items. Christina suggests researching the cost of items and the possibility of making them at home. She also promotes having a support network of any size; “Just someone who gets it and doesn’t judge the looks you get when out and about.” •
ABOUT THE AUTHOR:
Jennifer Woodworth is a licensed clinical psychologist in private practice in Vista, CA. She has worked in the mental health field for seven years. Her husband is retired from the Marine Corps and she has three children ages six, eight, and ten.
