When I arrived in my alternate universe, my first thought was not to start writing a blog. Early on in my adventures, all my thoughts and energy went into SURVIVAL. Yes, I know this sounds a bit exaggerated and overly dramatic, but it’s true.
I think every parent of a child with special needs has read the beautiful essay by Emily Perl Kingsley called, “Welcome to Holland”. I get all teary-eyed when I read it, and I’ve shared it several times on Facebook over the years. In the essay, Emily describes her experience of finding out her child has a disability by comparing becoming a parent to a trip to Italy. You’re excited and prepared for Italy, read the guidebooks, learned some Italian phrases, and planned out which sites to visit. As the plane comes in for a landing, the stewardess announces that you’ve arrived…in Holland. Her description of the shock, the confusion, the disappointment, and finally the acceptance – that’s pretty much what it feels like.
But I’ve always imagined that our plane did not land in Italy or Holland. After all, Holland is peaceful and serene, with tulips and windmills – a nice, relaxing, slow-paced destination. I’m guessing that our pilot came over the intercom with an irritatingly jovial voice to announce, “Well folks, we know you love mystery and adventure! So we’re letting you jump out of the plane and parachute into this jungle here! Heh! Heh! It’s pretty crazy at night, so we recommend sleeping in shifts or not sleeping at all. Your mission is to find some friendly natives who live in the jungle. The quicker you find them the better off you’ll be in the long run, so pay attention! They will direct you to the nearest civilization – a busy and confusing city, crowded with honking cars and people who don’t speak your language. THAT is where you’ll find the next clues in your adventure. Aaaaaannnnd if you’re lucky, you might eventually find your way to HOLLAND!”
Ah, yes. That’s more like it. Now you see why I was focused on survival and self-preservation for those first few years. Our lives had become “Survivor”, “The Amazing Race”, and “Nanny 911”, all rolled into one.
After four and a half years in this place, the inspiration to write a blog hit me. WHY I wanted to write about my experiences is pretty selfish, really. I was looking for empathy. I wanted people to understand. I wanted to feel less alone.
Because this universe is terribly lonely at times. The nature of autism is a “separate-ness”, an “alone-ness”, not just for the child but also the parents. It doesn’t happen right away necessarily – it’s a distance that grows over time. Even after making new friends in the special-needs community, I still felt isolated. I missed my old friends, my old life. I found myself becoming ever more envious of the friends who ended up in “Italy”.
It was nobody’s fault really. My friends and I still tried to get-together and hang out. But I felt weird right after my son’s diagnosis – like an exposed nerve, electricity buzzing all around my head. I’m surprised people couldn’t hear all those excited electrons zipping and banging into each other, because all that racket was making it very difficult for me to put coherent thoughts together. And my anxiety was such that my head felt detached, as though it was floating a little above my body like a helium balloon.
Electrically charged particles, floating head, thoughts lost in a static haze…hmmm… sounds a little dangerous. Indeed, I should have had some kind of warning sign on me, mainly for my newly acquired case of “blurting”. I often found myself interrupting a pleasant conversation with friends to blurt out, “My son has autism…”. Of course, my poor friends would have no idea what to say or even what look to put on their face.
Later I’d be driving home, thoughts bouncing around in my electrified balloon head: Why weren’t my friends making me feel better? Didn’t they understand? Didn’t they know how difficult and painful this was for me?
The truth is, no, they didn’t understand. They COULDN’T understand, not really, unless they had been through it themselves.
This was my first “empathy epiphany”. I realized that when you empathize with someone, you try to put yourself in his/her shoes and understand their feelings from their perspective. This is a little more difficult to do when that person is going through something that you have absolutely no personal experience with. You end up pulling things from your memory that are closest to what they are going through, hoping those words of advice or reassurance will provide some comfort. I know, because I’ve done this before myself, when I really care about that person and their struggles, and I’m desperately trying to find a way to make them feel better.
But that’s not always easy…or even possible.
This was my second epiphany: It was not the job of my friends to make me feel better about my son’s autism. Because really, there was nothing anyone could say at that point to make me feel better. It was an unfair expectation.
So how does all this stuff about empathy lead to my decision to write a blog?
Well, the idea to write a blog came from my last “empathy epiphany.” It started with a fundraiser:
A month or two after the diagnosis, my sister-in-law called to tell me about a fundraising walk for an autism charity. “We should form a team!” she suggested. It sounded fun, so I agreed. It was only two weeks until the walk, but we managed to register our small team and raise $400. The event was such a wonderful, positive experience. Everyone there was celebrating someone with autism, just like us. With all the stress and anxiety that is autism, this was like a deep cleansing breath, and the positive energy grounded me. The buzzing electricity began to fade, and my head slowly returned to my shoulders.
Posting our team photo on Facebook was kind of like our autism “Big Reveal” to anyone who didn’t know about it yet. Empowered, I shared pictures and articles related to autism and posted occasional updates about my son’s progress in the months and years that followed. Autism wasn’t a secret to be hidden or discussed in hushed voices, nor was it something shocking that I needed to blurt out at dinner parties. It was simply a matter of fact: Our son had autism, and it was part of our reality now.
With this approach, friends wanted to know more about my son and his progress. They asked questions and took an interest in learning about autism. Some asked to join our team for future walks. It was as if people no longer had to worry about looking for the right words or the correct expression to put on their face when I talked about my son’s autism. Being open and honest, I felt more connected to people, sharing my experiences without placing unfair expectations on them to comfort me.
And here’s the strange thing – although there was no expectation of comfort, I WAS comforted. My comfort was the feeling that I was no longer ALONE in autism.
That was my final “empathy epiphany”, the reason I chose to start writing this blog. My friends didn’t have to understand everything that I was experiencing in order to give me love and support. They did that by just sharing in the journey.