Before autism, I thought I would work for a think tank and write international policy in response to the war on terror. Before autism, we thought our son wasn’t talking because of a rare speech disorder and he’d eventually “grow out of it” like everyone said he would. Before autism, I was chugging along, managing military life as an Army spouse with two young boys, and preparing for an upcoming deployment.
The relief of receiving an actual diagnosis meant I had direction, the symptoms had a name, and an explanation of things I couldn’t otherwise explain. The overwhelming feeling of helplessness that plagued me for months finally had a place to go. Some friends listened, offering compassionate support, but many slowly started coming around less and less. His behavior and idiosyncrasies were hard to describe and difficult to understand. I learned how to manage his environment and experiences the best I could while anxiously waiting until he could communicate.
The ‘career’ I never expected: special needs parent
I was used to floundering in my career ambitions and fostering my individuality as a military spouse. But once I became a mom, my life came into laser focus. Motherhood was the most overwhelming and underwhelming personal transformation — overwhelming because I was altered down the cellular level and underwhelming because what followed was completely natural. I knew what to do.
But this diagnosis was something I did not inherently understand how to deal with. I knew I didn’t have the tools in my toolbox to understand him, be there for him and worse, help him.
I was now an educational and medical caregiver. My life revolved around speech therapy twice a week and behavioral therapy (in our home) six days a week. Then he started preschool. I threw myself into learning about the diagnoses, treatments, therapies and now, special education and all its nuances, abbreviations, documentation, meetings and so on.
His first two years in preschool on post were pretty terrible. I felt prepared yet also wholly bulldozed. The kind of worry one feels when their child cannot talk about their day at school and only has nonverbal cues for signs of discomfort or happiness is blistering.
TRICARE and the Extended Care Health Option (ECHO) were on speed dial because I was constantly chasing therapy referrals, reauthorizations and obtaining letters to justify the amount of therapy he received. Imagine your child getting their wisdom teeth taken out and receiving a letter saying the surgery wasn’t approved a week later. Panicking, you spend the next three days making calls and tracking paperwork only to find out that, yes, the surgery was approved, and the authorization was sitting on someone’s desk.
Over and over again. The on-post hospital held a monthly patient advocacy meeting where, in front of the entire hospital staff, I presented the problem to the OIC of the pediatric clinic about the lack of efficient process for parents to submit authorization forms and treatment plans that TRICARE required. We discussed the process and possible fixes. I became a thorn in his side but felt that if I didn’t say it, who would? Decision-makers cannot fix a problem if they don’t know about it. And if they don’t know about the issue, how could they be expected to have informed solutions?
(Un)Settled and time to PCS
When we were preparing to PCS to Fort Hood, Texas, I contacted the Exceptional Family Member Program (EFMP) office immediately to ensure our paperwork was squared away so my boys would get the same kinds of services they received at Fort Carson, Colorado. I called school districts with the sole intent of picking the “right” school. Again, I knew I didn’t have all the tools in my toolbox to teach my son, but I was highly motivated to find good professionals I could entrust with important parts of raising children with special needs – support and education. I knew my lane was to love, support and advocate.
During our two years in Texas, I felt confident to use my voice to ask tough questions to the powers that be. That confidence, combined with my previous legal experience, led me to collaborate with the district to create a special education advocacy council for parents and initiate the first special needs parent representative in the PTA. The community was overwhelmingly kind and welcoming. I walked away, hoping there would never be a complete absence of special needs parent representation again as it gravely affects the community as a whole.
No one prepares you for the transformation into a special needs parent. I never considered that neither one of my babies would talk until almost four years old (the oldest still struggles significantly). I never considered my firstborn would be autistic. But here we are. And he is. My world shrunk overnight, and nothing looked the same anymore. Without knowing it, I ditched my previous ambitions because they were far too abstract for my new reality. My interests are still there, but I now reach into my community instead of reaching out into the world as I once wanted to.
Embracing the family business
In the early 2000s, while stationed at Fort Bragg, I worked as a legal assistant/paralegal. The law and litigation process intrigued me because I’d always had a deep love and respect for the law and politics. Fifteen years later, my life revolved around my sons’ education and therapy appointments. When they both started attending school, I had time to rediscover my passion for law and policy, but this time it was fueled by desperately wanting a better understanding of special education law and disability rights.
But how could I work and still be available for school rides, IEP meetings and therapy appointments? Diving into the special needs and special education world became a catalyst to up my parent advocacy game by continuously pursuing opportunities to learn from others in the field.
Two years ago, I saw a special education attorney speak on a panel. Afterward, I introduced myself and asked for a job. Finally, I was working again and in my preferred area of law. She introduced me to a group of military spouses passionate about legislative advocacy for military children in special education – a group who “got it” and had an actionable plan to which I could contribute. This group founded Partners in PROMISE. These opportunities were exhilarating and helped channel my energy, and I still look for ways to grow my own career path.
In Texas, I served on a committee that conducted autism training for police departments. I wondered if my new community received something similar, so I called the local police department. They hadn’t received any disability training but were open to the idea. Alongside one of my son’s behavior analysts, I developed and conducted two disability trainings and helped develop a program to register individuals with disabilities in the police dispatch system. That way, information about their disabilities was accessible to officers.
These examples are not pats on the back; they were real opportunities to dig in, contribute and thrive. We can sit back and tell a system they’re not doing enough or choose to be part of the change, leading to real solutions. (Just be sure you have a cup of coffee in hand!) The civilian world views military life as being quite rigid when, in fact, we are called upon to be fluid with unending understanding and compromise.
As we head to our next duty station later this spring, my bag of tricks is quite heavy. Overall, I’ve learned that others are fighting the good fight and welcome us to join. But if there isn’t, I can pick up the sword.
I created opportunities by diving in and saying, “I want this” – and yes, that’s scary. There is a way to find a career path that marries our responsibilities as a military spouse, the weight of being a special needs parent and caregiver, and one that nurtures our individuality. Life events and personal interests often inspire working parents, but we should always be open to how these personal “interruptions” can help us grow into our potential.
Personal essay by Crystal Mahany. Crystal works as a legal analyst in special education law. A proud wife to an Army aviator, Crystal has served the military community in many capacities and is committed to serve until and beyond her soldier’s retirement. She strongly believes in serving military families and the surrounding community at each duty station.
In 2014, her oldest son was diagnosed with Childhood Apraxia of Speech and Autism Spectrum Disorder. Two years later, her youngest son was diagnosed with the same speech disorder. These diagnoses thrust her family into the special needs and special education community.
Driven by her passion to help, Crystal went back to school and focused her research on disability rights and special education law. She volunteers with Partners in PROMISE and is deeply committed to continuous service to special education families.Read comments