An Interview with DJ Reyes, Springbrook Autism Program’s Military Consultant
Colonel US Army (retired), parent of 10 year old triplets, one of whom has been diagnosed with autism
Colonel DJ Reyes is Springbrook’s military consultant, helping military families who have a child with autism navigate the TRICARE process and receive the care and therapy that their child needs in the Springbrook Autism Program. Colonel Reyes is also the father of a child who has been diagnosed with autism—his 10-year-old son, Christian.
Recently, the Springbrook Autism Program team asked Colonel Reyes to share his personal experience as a member of the military and the father of a child with autism. During our interview, we found out what it’s like to receive difficult news while deployed, how military families can best advocate for their special needs child, and what military families need to do to get TRICARE approved and receive the best possible care.
How did you first learn that your son, Christian, had been diagnosed with autism?
During one of my one-year deployments to Iraq, my wife, Julie, suspected that Christian’s behaviors were not progressing at an expected rate as other children his same age (he was under 2 at this point). She can tell you more about the actions she subsequently took with the medical community, TRICARE, and local providers. For me, I felt shock, uncertainty—helplessness. I was away from home, so there was little I could do. That helpless feeling was the most difficult for me. As an Army Colonel I’m used to being proactive, fixing problems, and here I was unable to do anything.
Initially, I was not involved to the degree that I should have been. Like many dads, or military spouses, my military career kept me deployed or constantly working. So I looked to my wife to handle most matters affecting our family. As I later learned, autism is a team sport—dads must get engaged as well. One person simply can’t carry the load all the time. And in the case of single parents, the power of extended family and networking support also plays a critical role in easing the burden.
In your opinion, what is the most difficult thing about being a military family that has a child with autism?
There are many difficult things just being a military family, and even more with a military family with a spouse who receives orders to deploy to a combat theater and must leave the family. Now, add all of these stressors to a family that has to figure out how to help a child with autism. You see, in the first two scenarios, there are external factors which make military life very challenging to begin with—the constant moves and transient culture, the new assignments, the different schools and new community, the financial challenges, etc. Combine all of these challenges with the additional challenges of identifying and transitioning care, disrupting an otherwise “routine” lifestyle and regimen, balancing family and professional dynamics and ongoing requirements, and as a parent, keeping a vigilant “self-watch” to maintain a healthy lifestyle and avoid burn out. This is especially true for a spouse whose other half is deployed overseas, thus leaving all the family and special needs responsibilities to the homebound spouse.
I chose to work with the Springbrook Autism Program after retirement because I understand and empathize with the challenges these families endure. Anything that I can do to make it easier for them to get care, and more likely for that care to be successful, is time well spent.
Based on your experience, what is the main thing that military families facing an autism diagnosis need to know?
Get connected immediately. The greatest rule of thumb I use is a simple acronym: NEAT. This stands for Networking, Education, Access, and Training. As you’ll read below, these easy to remember concepts are interrelated and complementary. Specifically:
Networking: Whether you’re PCSing to a new base, or currently stationed at a base, you (servicemember) are required to enroll your family member into the base Exceptional Family Member Program (EFMP) if you have a family member with a diagnosed special need (see Education and Training, below). The base EFMP Coordinator is your primary POC that will assist you in this process, and will prove to be a vital resource for local community resources regarding necessary medical and therapeutic support to the special needs families. Should your family need to seek residential treatment for autism, and the negative behaviors associated with autism, then your EFMP can assist you with admission to Springbrook if needed. Additionally, every base EFMP coordinator facilitates various EFMP Parent Support Groups, and other workshops to assist the EFMP enrolled families. Get to know all of these folks.
Education: It all begins with the notion that, as a parent, “something isn’t quite right with my child.” Thus, like many military parents, you have to take it upon yourself to self-educate via reading and researching, and talking to others (parents of special needs kids, special education teachers, doctors, etc). Once you’ve assessed that “there is definitely something different or not quite right with my child,” you’ll need to contact your assigned primary care manager, or PCM. The PCM is located at your local assigned base medical center, hospital, or clinic. You’ll need to obtain a PCM diagnosis and assessment if your child is in fact identified on the autism spectrum, or with any other TRICARE recognized disability. Once the official diagnosis is made, the PCM will guide you through your follow-up actions regarding available treatments and therapies. If your child is exhibiting any of the repetitive or self-destructive behaviors often associated with autism and related disorders, reach out to me or Springbrook’s Autism Program. We would be happy to talk to you about residential treatment options for autism that can help your child succeed, such as occupational therapy, recreational therapy, and pharmaceutical management.
Access: Armed with your diagnosis, assessment, and approvals to start treatment, you need to aggressively reach out to your reference points. These include, but are not limited to, local community medical and therapeutic providers (TRICARE approved), fellow military (and non-military) families of special needs members, and of course your base EFMP coordinator. If your member is of school age and enrolled in school, make an appointment to discuss your situation with the Exceptional Student Education (ESE) teacher (critical for the Individual Education Plan (IEP), or 504 Plan for special accommodations). If you encounter any issues with the local school, your base School Liaison Officer (SLO) is your designated representative that can offer assistance and guidance when dealing with the school administration and faculty.
Training: The Base EFMP Coordinator provides various opportunities to learn, participate, and share experiences in workshops, classes, and briefings that include local community health providers, administrators, officials, and other parents of special needs members. Get the yearly schedule (most are online on the base EFMP Facebook page) and coordinate with others to attend and participate!
Whatever you do—don’t try to go it alone!
How has the autism diagnosis affected your family? Any advice for balancing the needs of your other children and your spouse while managing autism symptoms?
I mentioned above that you must also account for family dynamics and ongoing requirements as you deal with the needs of your autistic child. Every family is different, and every family member is different. This includes how each family member responds to the autistic family member. What you must plan for is flexibility and understanding, because every member may respond differently.
Additionally, parents may become so focused on the needs of the autistic child that they forget the needs of the other children. Worse yet, they don’t see the signs indicating concern, anger, or even hostility because of the undue attention and inconvenience placed upon others. This can, or will, lead to potential negative or disruptive behaviors and attitudes that may result in dysfunctional family relationships now, and in the future. One recommendation to help allay this development is to establish dedicated times during the week that each family member has for their own time off for their specific activities, hobbies, etc. This must be positively supported by the parents.
How have you and your spouse been able to thrive and help Christian succeed despite his diagnosis?
In my opinion, there are four main factors directly contributing to our successful journey with Christian thus far. Very simply, they are: a) NEAT (see above); b) we hold Christian to high, but attainable standards. We don’t give him an excuse to do less than the best he can give, and we motivate him to achieve at a higher level amongst his peers; c) tied to the NEAT concept, we built an understanding and supportive community of school educators and support providers who nurture a climate of acceptance and inclusion; d) we accept Christian for who he is, his incredible strengths, and his quirks.
At the end of the day, I ask myself this question: “What is the definition of normal, anyways?” We all have our own unique behaviors, and mannerisms. Some are good, and some not so good (and we’re considered normal or mainstream) By treating Christian just like any other kid his age, holding him accountable for his thoughts, words and deeds, providing him opportunities to excel in a normalized environment, and being a positive and inclusive force in his life, we believe that Christian will continue to mature and develop those necessary qualities and behaviors to live a productive, and successful, life.