This place in the snow
The snow falls so gently here you can barely hear it… until you’re surrounded by the soft white blanket around you, that is! This really is a soft place to fall with an even softer place to land… over the last six years (yes, it’s been that long!), I’ve slowly learned that I am absolutely in the right place – for many reasons. Though I knew when we moved here there was a bigger reason for our relocation in the ‘Grand Plan,’ most of my early days here were spent devising daily escape plans to get back home (four states away!). What I hadn’t planned on is the priceless gift of uncovering layers of life that could only be discovered here in this place – physically, emotionally, literally. Of course, this only happened after I allowed myself to breathe in my new surroundings. These days I’m more inclined to slow down, sit back and enjoy where I am – my new “home” …especially in the snow.
A long and winding road…
Little did we know when we began this journey to New England, that another journey was already underway for us… our life with Sensory Processing Disorder, Anxiety and Autism. Lots of stories from many families begin with that “moment” when they first heard the words, “your child has Autism.” I have to say that ours was – thankfully! – more of a gradual process.
We’d been working with Early Intervention for our oldest son’s physical and sensory processing delays, feeling our way around what all of that meant. Backing up a bit, when he was about 18 months old, his Occupational Therapist (OT) noted delays in his proprioceptive and vestibular systems… wait – his “proprio-WHAT?” …right, we had no idea at the time how involved it all was. Already working with a follow-up program through the NICU where he’d spent his first week of life, we were assured that these new developments (or rather, under-developments) were likely tied into his preemie start. There was so much more than we knew at the time… looking back now I realize there was much more than the doctors and therapists even knew, or at least dared to mention. But by the time we moved to Massachusetts when he was two, it was clear that I needed to focus full-time on the increasing challenges he was facing to get through his days.
To say that it wasn’t easy is an understatement. We were lucky enough to continue Early Intervention here with an OT who “got it.” She understood the sensory issues and what that meant from sensitivities to lights, noise and crowds to his under-sensitivities to pain, temperature and textures. We became better educated, thanks to the hands-on experience with her. What also became apparent back then was that there were more challenges for our son with each new day… sometimes with each new hour. Some things were truly hard to pinpoint. His verbal skills were off the charts… and he seemed to be able to express himself… didn’t he?? Then again, processing was becoming more difficult for him. Putting thoughts and multi-step instructions together was more and more of a challenge, and his level of frustration (not to mention the intensity of meltdowns) was quickly increasing. We were assured by some that it was probably nothing to worry about, since he made eye contact… well, for the time being anyway. When he turned three we transitioned out of Early Intervention and into the amazing hands of our current OT, whose dedication has pulled us through some of our darkest days. We had (hopefully well-meaning) acquaintances at the time who looked at us like we had four heads – literally like we were crazy, telling us things like, “there’s nothing wrong with him!” and “he seems perfectly fine, what are you worrying about??” and the old “he’s fine!” Still… there was this feeling. There were new difficulties with pre-school. And still.. this feeling.
A few years earlier, I’d had a close friend who described to me in detail what it felt like to have the light in his son’s eyes fade… around the age of three. After that he was diagnosed with Autism. His beautiful boy who had been so lively, until then. It was a thought that was tucked away for me, but as our days moved on my friend’s words were back in my ear. So, as much as I say it was a gradual process for us, what I can clearly remember – and what still shakes me with a sick feeling today – is the point at which our son simply stopped making eye contact. It came first in a photo. Then another photo. And then all the next photos. Until I would beg and plead for him to “please look at Mommy…” snapping away with the camera, hoping and praying for just one shot directly into the lens. So, I suppose that’s my moment. Every year since, I hold my breath while opening the envelope with his new school photo. Just maybe he’ll be looking with those gorgeous chocolate-brown eyes…?? Not usually. Even on our most positive days when things are going well, it’s a dose of reality.
And so for that moment and all the others since those early days, we are here in this place. Over the last six years we have formed special friendships and developed a strong support team… the ultimate safety net! While we learned terms like PDD-NOS and eventually heard Asperger’s Syndrome, many of our pieces had begun to fall into place with the right people on our side. Today more than ever, even while we learn more each day, I feel a sense of community that I can’t imagine having any other place. That may sound odd – and even feels odd – coming from the girl who drove over three hundred miles each way every chance she got with our then three-year-old and four-month-old to get away from here! But this soft place to land… it’s bigger than all of us. I could not have imagined and may well not have believed that I could feel so at home. On the harder days, there is tremendous comfort in knowing that we are exactly where we are meant to be. In this place in the snow… this place in my heart.