I’m a pretty private person.
I know that seems weird to say, considering I write this blog now, but in the non-virtual world I’m pretty good at keeping things about me to myself, only sharing with close family and a few select friends.
This need for privacy is certainly something I learned from my parents, and especially my father. Despite his very public political life, our family life was kept behind closed doors. Nothing illustrated this more than when he got sick with pancreatic cancer. Inside our house, we were a mess, scrambling to get him whatever help we could while attempting to understand what his absence would mean. Outside our house, however, we all circled the wagons at my father’s insistence. When asked how he was doing, our family mantra became “Yup, yup, we’re doing ok.”
But we weren’t doing ok.
By denying this fact to the rest of the world – specifically our friends and neighbors – we were denying ourselves the ability to get outside help and support. We closed ourselves off from the shoulders to cry on, the hands to hold when things were rough, or the understanding voice on the other end of the phone saying that they had been there too.
Fast forward to last year when we started to really notice that things were a little different with Howie. As I’ve said before we knew for a while that something was going on with him, but when he started preschool we could really see that he needed help. My privacy instincts kicked in immediately, and while we were waiting to get him evaluated I kept our whole story to myself, with the exception again of a few family members and close friends. Living in a small town, it would be easy for one person to innocently share with one friend what we were going through, and then that friend would tell another, until the game of “Telephone” had been played to the point that Howie’s story would become something not even close to the truth. I was already uncomfortable enough with the accommodations we had made to his schedule (increasing his school time from three to five mornings, having him enter school before the other kids, picking him up at a different door) – I didn’t need everyone in town questioning why we were getting seemingly special treatment.
Once we got Howie’s PDD-NOS diagnosis, however, I knew in my heart it was time to let it out. Educationally, we didn’t really have a choice. His autism diagnosis led us to a full day/full year preschool program and the need for an IEP. We were now entering the school through a different door and picking up at a different time – clearly something noticed by all the parents who we had previously waited with before school started.
I first let down my guard with three other mothers who were dropping off their kids for the full day special program. Introducing myself to them was not easy for me, but they were so warm and welcoming and understanding it was hard not to think that I should share more. Howie and I attended a gymnastics class in town just for kids on the spectrum and I wrote an essay about it for Autism Speaks. When it was published on their website, our story was out.
Following that post, Tim and I spent a lot of time talking about how I had “outed” Howie to the world as being on the spectrum, without him having a say in it at all. As I’ve written before, we came to the conclusion that this is who he is, and his behavior or quirks or whatever we may call it are explained by his ASD and we didn’t label him for life with something that wasn’t him.
But for me it was more than just that. Sharing his story was the only way for me to get the help and support I needed to get through the day. It was the only way I could feel that I was not alone. Sharing led me to three new wonderful friends, to starting our local support group, and of course, to writing this blog.
I am still figuring out when to break through that wall of privacy around me. I have a constant debate in my head when we meet new people about how much to share with them. Do I tell the mom at the park when she’s staring at Howie when he’s making his noises? The neighbor who calls to ask about a playdate? The swim instructor who can’t understand why Howie won’t put his feet down on the dock? Considering the stigma that is still attached to the word “autism”, I don’t want him shunned from playgroups or activities, yet I want others to know why he behaves the way he does.
When asked by casual acquaintances and extended family members how things are going, I still find myself answering “yup, yup, we’re doing ok”, even when we’re not. But I’m getting there. Because I know that the more I share what’s going on in our house, the more others will understand Howie and spectrum disorders in general. And because I know I need those shoulders to cry on and those understanding voices telling me that I’m not alone.
“It doesn’t matter what they say
In the jealous games people play
Our lips are sealed
Pay no mind to what they say
It doesn’t matter anyway
Our lips are sealed” – Our Lips are Sealed by The Go-Go’s