Plain speak perspectives from one military dad and his journey with his special needs child.
By DJ Reyes, Colonel US Army (retired)
Why some military parents may have a difficult time acknowledging that they have a special needs child.
*Disclaimer. Below are some thoughts I’d like to share with my fellow military parents of special needs children, and specifically those diagnosed with Autism Spectrum Disorder, or ASD. I am not academically or professionally trained or experienced in this topic, and I certainly won’t claim that I have any answers to resolve any issues pertaining to ASD. But I do speak as a fellow parent that dealt with this issue while on active duty, and while deployed to Iraq and Afghanistan. My thoughts are only for your reading and consideration onlyI think that as a community we can progress if we collaborate our efforts and share our own “lessons learned.” With that in mind, here is my story.
The Journey. In 2007-2008, I was deployed for another 1 year rotation to Iraq. This was during the height of Operation Iraqi Freedom (OIF), the “surge” campaign, where tens of thousands of additional troops were infused into the combat theater to quell the Sunni-Shia Muslim violence, and defeat the growing presence of Al Qaeda in Iraq (AQI). It was during that period that my wife, a mother of triplets under two, intuitively realized that one of the triplets (our son) was not progressing at the same cognitive or behavioral rate as his siblings (his sisters). This led her to pursue medical evaluations and seek answers, resulting in an ASD diagnosis.
From that point until present day I, like many parents faced with this particular news, experienced a myriad of feelings and emotions. And I believe that all these feelings were somehow interrelated. So, for purposes of this article I’ll share my actual thoughts then state what I believe to be the most appropriate “label” to my reactions. And although I’m not a doctor, licensed therapist or employed in the medical field, I am a parent and it is my hope that many of you can also relate as well to what I’ll share next.
So, the first thing I said to myself was “what is ASD? Is that like the character that Dustin Hoffman played in the movie Rain Man? How did this happen? Did I pass this genetically to my son? Was my constant exposure to the toxic environments in Iraq the primary cause for my son’s ASD?” So, I labelled these feelings as Ignorance.
The next thing I thought was “Naw, he’s ok. Boys will be boys—and we all know that girls are smarter than boys, and that it takes time for boys to catch up developmentally.” You see, we also had 2 girls that comprised the triplet brood. So it was convenient to watch all three in action, and notice the differences. That had to be the answer. So, I labelled these feelings as Denial.
Now, unlike my wife who had to deal with this new situation, along with maintaining the family responsibilities every day, I could block this out of my mind while deployed in Iraq. However, when I returned stateside, and became more involved with my wife on the topic, I realized that I didn’t know what I didn’t know about Autism. And, that was (and still is) a very uncomfortable feeling for an Army soldier who was (and still is) accustomed to understanding the issues and overcoming the challenges of any problem presented to me. Just the thought of the unknown and permutations beyond my comprehension or control created a sense of Fear—another powerful feeling.
For me, it was interesting that through this particular reaction—Fear—three other feelings emerged that I had to cope with. The first was Embarrassment—not knowing how my son would respond in different social settings, I felt a sense of embarrassment for him as a boy who would never quite be “normal” around other boys and girls his age. I worried that he would never make friends and that others wouldn’t understand and accept him for the way he acted, or spoke, or thought. But I also felt embarrassed as a dad, because I now had to deal with the reality that my son was probably not going to be playing football or other team sports like I did. Or, like other boys his age are doing with their dads. The second feeling was Concern for his safety, given today’s environment of bullying, whether it be physical or virtual on the Internet. How do parents protect their child who may not possess the innate abilities to pick up on social cues and other group behaviors? Finally, the third feeling was Anger. “Why my son? He did nothing to deserve this. Was this God’s way of punishing me in some way?”
Now, that last feeling of Anger led ultimately to Guilt. I must have done something wrong and am being punished—but it is my son who must bear the consequences.
5 Lessons Learned.
Although this story of my son and his journey has just begun (he and his sisters are now 10 years old), it is not bleak. In fact, it evolves every day into a story of hope, happiness, daily successes, and a bright future. And by the way, he along with his sisters currently attend the local International Baccalaureate (IB) School in town. He’s doing extremely well both in school and in his social interactions with his classmates. There are reasons why in my opinion:
- Parents’ education is the key. There’s a famous saying: “The best defense is offense.” That applies 100% to the issue of learning everything you can about your child’s special need. In the age of social media and Wikipedia, you literally have instant access to a wealth of information as well as online forums and community groups. The Springbrook Autism Resources page has a wealth of information for parents who are looking to reinforce Applied Behavioral Analysis and Occupational Therapy sessions at home. Google it, read it, understand it. And if you don’t understand it, do the next step:
- Identify your local, regional and national network of families, organizations, and resources. Often, service members are problem-solvers who don’t like to admit when they need help. But this doesn’t work when you have a child with autism or another special need. Fortunately, there are other families going through a similar ordeal just like you. You just have to find them. How? Start with your local base Exceptional Family Member Program (EFMP) Coordinator. If you have a special needs child with a TRICARE diagnosis, you need to stay linked up with your EFMP coordinator who is a resource of knowledge for you. Participate in your EFMP Parent Outreach Meetings. Again, you’ll meet other families with similar issues—and you can share information on different resources, who are the best providers, and what are the resources on other military bases. Whatever you do, find resources and don’t try to go it alone. The Springbrook Autism Program, for example, is an excellent resource for military families who are dealing with severe problem behaviors and need professional intervention. As a TRICARE Certified Provider, Springbrook works closely with your caseworker to help your family get the care that you need.
- Get involved with your child’s school—teachers, faculty, ESE, school psychologist. In most cases, special needs children will require some form of assistance that is required by law. The one to know is Wright’s Law. Written by Peter and Pamela Darr Wright, this book contains text of key laws and regulations including the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, and the Family Educational Records and Privacy Act (FERPA). The book features U.S. Supreme Court decisions, caselaw, and analysis and interpretation. The book also outlines the basic process requirements from the initial meeting to establish a 504 or IEP for your child, all the way to the formal and legal due process hearing between a parent of a special needs student, the local school board, and a hearing judge. Many base EFMP coordinators can provide it to you for free so ask them for a copy.
- The cup is half full, not half empty. Rather than focus on, or lament over, your child’s inability to do or think or act in ways you believe are “normal,” celebrate the uniqueness of your child and what abilities he or she does possess that are noteworthy. In our family, it is obvious to everyone that our son is brilliant in math, has an incredible memory, can focus on a task to completion without being distracted, and—most importantly—is so good with maps and directions that I’ll use him while driving over my own GPS! One of the things that Springbrook’s residential program for children with autism does is focus on the unique strengths of special needs children, as well as each child’s specific skills and tastes, using rewards-based programs, recreational therapy, aquatic therapy, and more to reach your child.
- Don’t treat your child differently, hold your child to the same standards and expectations as your other children, and always show unconditional acceptance and love.
In summary, the biggest lesson I have learned thus far during my Journey with my son is this: I’ve learned more from him than I could ever teach him. And in the process, I’ve learned more about myself, imperfections and all.
After all, what exactly are the definitions of “normal” and “perfect”, anyways?
At Springbrook, we understand that all parents of children with autism face real challenges and need resources and community partners to help them on their journey. This is especially true for military families who are also balancing deployment, PCS orders, and base living along with the stresses of everyday life. Please reach out to your base EFMP Coordinator to make sure that you get the support that you need—and ask for a referral to the Springbrook residential autism program if your child needs help overcoming maladaptive or self-destructive behaviors. We are proud to provide additional support and resources to military families seeking care, including free accommodations at the Ronald McDonald house for military families who are visiting their child.