News and Knowledge

“Take time to mourn”

That is what the pediatric specialist said to me directly after she told me my son, Connor, was profoundly autistic.  The word “mourn” immediately felt misplaced. The first thought in my head being, “what the heck am I mourning”?  With a million thoughts and feelings going on inside me, absolutely none of them were anything like mourning.

You mourn when you lose something, and at the time I was all too familiar with grief and loss. My father had passed 15 months earlier. On my long journey to complete our family, I lost seven babies. Seven babies I never got to hold or know. That was true loss.  Two of Connor’s older siblings were products of fertility treatments. Not Connor though, my complete surprise baby, he is in all respects a miracle. My living proof that life finds a way.

As I looked at this perfectly healthy beautiful little boy with deep blue eyes and a laugh that shakes his whole body, I couldn’t reconcile the idea of “mourning” anything about him.  I heard the statement over and over in my head as I watched my little dude run around the house stacking his cars over and over in the brilliant way that all made sense to him.

Now don’t get me wrong, confirmation of what we suspected wasn’t a celebration either. There was no ticker tape parade, confetti from the ceiling, or a cake.

Connor is my miracle baby who is diagnosed as profoundly autistic. Connor overcame impossible odds to be here and now he faces even more challenges. Connor, like all my kids, brings me joy and fills my heart. He is also going to face challenges in life, which brings on its own set of emotions: both excitement as I allow him to show me a new world and fear as we live in a world that won’t understand him.

Facing all of this, I did what any good Sailor would do and I went all stop. I let the engines idle while being pushed in the natural direction of tide. Personally, I was at 22 years of Naval service as an Officer, not quite able to retire, and slated to go back to San Diego for another tour. My husband, also military, was at 18 years and hoping to continue to advance his career. Connor’s older siblings at 12, 6, and 4, were in various stages of the educational timeline, and we were in the middle of COVID.

All stop allowed us to take time to learn and reassess what made sense for us as a family. As we researched, learned, and started intervention for Connor, the picture became really clear on where we were going and how we were going to move forward to support him. When we finally reengaged the engines to move forward, we were living in a house we will call home for a couple of decades. Retirement is right over the horizon for me and my Connor is fully immersed in early intervention services.

There is no right way to react to an autism diagnosis. There is no singular emotion set that is tied to the realization of a profoundly special needs child. If mourning the diagnosis resonates with caretakers as an accurate representation of their reaction, then those feelings are valid. The reaction didn’t fit me, but for others, grieving may be their first step.

Every child with autism is unique. Similarly, each family will have their own individual circumstances, dispositions, reaction, and challenges.  This is hard, there is no set path, and there are no gold stars in special needs caretaking.  Respect where your emotions take you and when you need to ask for help. It takes a lot of strength to recognize limits and ask for support.

Now, 18 months after the diagnosis I am moving forward to a future that is going to give me so much. Retirement has always been this nebulous future decision that I always danced around. How was I going to continue to make an impact after my service in the Navy?  Making a positive impact is what moves me; it is why I get out of bed in the morning. That question now has an answer, and I am excited.

I acknowledge I am lucky. I am lucky that I have some flexibility and that I am able to adjust course so easily. I lost nothing with Connor’s diagnosis. In fact, Connor gave me the gift of a purpose. When I retire, I will spend my time supporting inclusion and advocacy efforts, working to give him a world that can better support him and those like him.  I look forward to my opportunity for continued impact from giving him an extra 15 minutes of snuggle time in the morning to start his day or speaking to partners willing to be brought forward into a world where neurodiversity is more and more prevalent.

For me, I had nothing to mourn. I caught my breath, and established support resources for Connor and myself. Now, I have work to do.

Kathy Mahoney is a Captain in the United States Navy. She has served for over 23 years as a human resources officer. Kathy has just started to explore volunteer opportunities to support neurodiversity advocacy and looks forward to making a difference. In her five minutes of annual free time you can find her doing a puzzle or maybe wordle. 

Kathy and her husband Paul live in Arlington, Virginia with their four children, Rebekah (14), John (8), Avalon (6) & the coolest little dude Connor (3). LinkedIn: www.linkedin.com/in/kathleen-mahoney