It started with football games… or so we thought.  From little on Fletcher was a football enthusiast and loved going to watch his daddy coach high school football under the Friday Night Lights.  Games were his favorite…until they weren’t.  What he looked forward to as a two-year-old became an anxiety-inducing experience when he was three.  His poor little body was so torn – he wanted so badly to watch his dad on the sidelines and high-five his favorite players, but when we’d get to the stadium, he’d melt into a puddle – sometimes it was just a little rain storm and others it was total tsunami.  I wanted to honor his desire to go, but also prevent a traumatizing experience.  We made it into one game that season.  It was the playoff game and he wanted to be there so badly.  We prepped him all week, talked about wearing his noise cancelling headphones and figured out a few other strategies that would work.  And they did for that game.

My beloved aunt saw a photo of us from the game and thought to gently ask about how we were doing.  I explained Fletcher’s struggles that season.  Having a career’s worth of knowledge working with individuals experiencing sensory integration challenges, she mentioned that there may be value in having him evaluated by an occupational therapist.  For a long time, we thought that conversation is what started everything for us, but the reality is that our journey with SPD began long before we realized. You know how hindsight works… now we can see it so clearly.   

For at least a year prior, we were dealing with tremendous meltdowns – often without warning and frequently resulting from things that we couldn’t quite put our finger on.  Transitions were hard, environments with loud noises caused Fletcher agony, and gatherings of almost any kind were enough to make his sensory bucket completely overflow.  Looking back, it felt like there was always a looming feeling of anxiety. For him it was uncertainty and lack of control in his environment and for us it was the unknown of how and when … On more than one occasion we had to make a quick exit from a family gathering to avoid a complete disaster of a meltdown.  Sometimes that meant leaving without so much as a goodbye.  I come from a large family of innate gatherers where we joke that a typical “goodbye” is no less than 45 minutes.  So such an abrupt exit was really hard for me – but it was necessary.  Transitions had always been hard for Fletcher.  We started visual schedules with him before he turned 2 without realizing what they were called.  It was the only solution we could come up with that might make our mornings just a tad easier.

Soon after that fateful chat with my aunt, I met with a dear friend whose son was on a similar journey, just further along than us (yet I didn’t know the extent of their struggles at the time).  I’ll never forget how validated I felt in talking to her.  I was overcome with emotion and couldn’t help but feverishly nod my head with every word she uttered.  For the first time I was hearing someone describe exactly what we had been trying to manage for months.

But we didn’t know what we were “managing” nor did we talk much about it.  It felt like a huge weight had been lifted from my shoulders.  We seemed to at least have a path forward even though the months following would constitute one of the most challenging times of our lives.

When our journey with therapy officially began, we didn’t know about sensory diets, vestibular or proprioceptive input or “heavy work”.  We knew that Fletcher was struggling and as a result so were we.  

We started occupational therapy and eventually therapeutic listening followed by craniosacral therapy.  For months we endured heart wrenching melt downs, long days filled with negotiations and dysregulation and made some really tough decisions about the best fit for Fletcher as it related to school.  No matter how difficult our days were, I’d peek in at our sleeping boy each night and pray that we’d soon find the magic answer.  The hurt and frustration melted away with that sweet sleeping face – he looked so peaceful.  Every single night I was overwhelmed with this conflicting combination of grief and gratitude.  I longed for Fletcher to experience life in an easier way and yet I was so grateful for all that each day taught us.  

Six months after Fletcher started occupational therapy, Max started speech.  He was just shy of 20 months and didn’t have any true audible words while also struggling with some feeding issues.  His pediatrician had been concerned as early as his fifteen month check-up, but he didn’t yet qualify for services through Birth to Three so we had him privately evaluated.  Two months into speech his meltdowns had gotten so bad that we made a joint decision to transition him to occupational therapy to address feeding and sensory issues.  

And there we were.  Two precious boys, two exhausted and overwhelmed parents and two very different sensory journeys.

Fast forward a few years.   We’ve spent hours in therapy and know that occupational therapy and therapeutic listening have played integral roles in the development and progress of both of our boys.  We have navigated genetic testing and know that Max, Fletcher and I are all missing a small part of the AUTS2 gene (more on this later), have endured a whole lot of trial and error at home to find our groove and most recently, have discovered the magic that is cranial sacral therapy.

While it feels like we’ve already traveled a long road, we know that there are a few more hurdles on the horizon.  Beyond the gift of Fletcher and Max, we feel the most gratitude for the incredible access we’ve had to an amazing support team, brilliant therapists and strategies that have been game-changing for us and we’re happy to share our own journey with the hopes that it helps families on a similar path.