At the age of two, my son barely spoke. His only word was “milk,” which he used when he wanted a refill of his sippy cup.
He communicated by pointing at objects, baby sign language for “more” and throwing tantrums. At this age, it can be hard to decipher if it is typical toddler behavior or something of concern. I kept telling myself that he would eventually ‘catch up’ with his peers as long as I continued to read to him. It wasn’t until a business lunch that I seriously began to worry.
I met with another military spouse to discuss plans to work together on a project helping veterans with PTSD. The conversation took a swift turn when she began to cry while talking about her teenage son recently being diagnosed with autism. Now a nurse practitioner, she could look back and realize several signs she may have missed during his childhood. While trying to be supportive, I was panicking inside about my own child’s development. Afterward, I made an appointment with the pediatrician at the Military Treatment Facility. The days leading up to his visit, I watched and questioned every behavior. He would hyper focus on particular objects, put together complex puzzles with ease, scream uncontrollable when water touched his face, and group all his toys by color and size.
His pediatrician put in a referral to a developmental pediatrician and gave us the information for New Jersey’s Early Intervention Program. We were fortunate to get him enrolled in the program while waiting nearly six months for the specialist appointment. Tricare was very responsive and helpful with facilitating referrals, but the lack of developmental pediatricians in the area meant an unusually long wait. Early Intervention provided speech and occupational therapy in our home, and we quickly saw some improvements in his behavior.
The day we finally went in for testing was overwhelming. Test after test for what seemed to be all day. The hospital called us in for the results after a week. ‘Your son does meet the criteria for autism spectrum disorder.’ The words will never escape me. I immediately felt all kinds of shame. It wasn’t that I loved my son any less. Instead, I felt his diagnosis was somehow my fault. Was I exposed to something during my previous deployments? Or may it was the extra screen time I gave him when I needed a break. Do I tell people? How will I react if someone says something inappropriate related to his diagnosis? Honestly, I did not know how to feel. Each day proves to be a new challenge. While my son now does exceptionally well with his language, he still has sensory and behavioral concerns.
Air Force Veteran and military spouse, Dina Farmer, recalls a similar experience with her now eight-year-old son. He was born at 33 weeks’ gestation, so she worried about his development from the beginning. Farmer started to worry more when she noticed certain behaviors. Her son would stack objects perfectly in a line, he did not understand personal space, and he did not begin walking until 16 months. Friends, along with the pediatrician, assured her not to worry. “It took the birth of my second son to say, ‘this is not normal,'” says Farmer. After watching her younger son hit developmental milestones, she began to push for testing for her oldest.
After his official diagnosis, Farmer tried homeschooling before eventually sending her son to public school, where he still has some challenges. She continues to advocate for an Individualized Education Plan (IEP) instead of a 504 for her son. Farmer believes her son would benefit from Applied Behavioral Analysis (ABA) therapy but Tricare must approve before any treatment begins. Advocating for your child’s best interest comes with the territory.
Farmer believes that parents have to find what works for them when parenting a child with special needs. As for her neuro-typical son, she says, “It’s okay to parent them differently.”
Each child is unique and requires individualized attention. Farmer also understands that having a special needs child doesn’t stop families from living their lives. Farmer is the owner of Lily & Magnolia Travel and is a Certified Autism Travel Professional. She is passionate about making sure autism families have a smooth vacation experience.
Keischa Pruden, LCMHCS is a North Carolina based psychotherapist that specializes in autism advocacy. According to Pruden, “Parents often struggle with their child’s autism diagnosis because the diagnosis in many ways diminishes the dreams they have for their children.” Guilt, shame, sadness, and anger often plague parents. Some initial reactions to a diagnosis can stem from feeling like they did something either during pregnancy or afterward to cause autism or other developmental delays. Did you take the right vitamins? Did you stress too much during pregnancy? Did you eat the right foods? Did you choose not to breastfeed? All of these questions can ruminate in a concerned parent’s mind and lead to additional feelings of guilt and shame.
Pruden, who is also an autism mom, urges parents to stop self-blaming from the beginning and focus on the care of the child.
Pruden helps other parents advocate for their child’s educational needs by offering IEP/504 reviews and consultations. She believes if you concentrate on getting the child the care he or she needs, your journey on the spectrum will be smoother. Autism looks different in each individual. There is a lot of misinformation about how ASD looks. Autism children are not monolithic, just as neurotypical children are not.
Consistency and structure are vital components to help children on the spectrum thrive. For military families, life can be unpredictable and hectic. From frequent moves, deployments, family separations, lack of support systems, and sometimes limited access to specialized care, military lifestyle can create additional stressors for families with special needs. There are many services available for military families, but knowing how to find them can be tricky. The Organization for Autism Research developed a guide specifically for military families. Military families can also visit their installation’s Exceptional Family Member Program office for support and program enrollment information.