One week from today I will be in New York City speaking at the first ever BlogHer HealthMinder day. New this year, HealthMinder is the pre-conference to the BlogHer conference that aims to focus on the impact that our health has on our lives. Last year, there was a special needs mini-con during the first day of BlogHer. I went and listened and talked and cried and felt both amazingly close to people and amazingly distant from the special needs world.
This year Healthminder Day includes a special needs track and I find myself in the position of speaking. And much like my experience last year at the mini-con, I feel both honored and completely out of place. Part of it is that I am speaking with moving writers Ellen Siedman of Love that Max and Marisa from Sheeps Eating Me. They are both amazing advocates for special needs.
And I feel that they are eloquently amplifying their message of special needs advocacy. While I am quietly whispering my message of what it’s like to be a special needs parent. Much like last year, when in a space of love and acceptance I stood up to say that I didn’t feel lucky, that I felt like this was a burden on my kids, my marriage, and me, I feel like I am a little dark rain cloud on a beautiful blue sky.
I think this is the bittersweet world of invisible disabilities. My girls are so beautiful, so smart, so wonderfully alive. And so different from their peers in so many tiny, almost imperceptible ways.
In our world, my kids’ eccentricities make life like living in a Monet painting. From far away everything appears normal, but the closer you get, everything seems to dissolve into a blur. My girls between them have a “typical” speech delay, apraxia, OCD, hypotonia, torticollis, fine motor delays, gross motor delays, sensory issues and social anxiety. All of that adds up to: nothing. There is no official diagnosis, no overlaying cause, no disease I can wrap up and present to people as a tidy excuse.
Instead it adds up to a hundred tough moments. A million tantrums that skirt the line between “normal” and “special.” It’s constantly comparing the girls to each other and every other child we see. It’s explaining to our family that yes, there are delays and causes for this, while wondering to ourselves if there really is something wrong or are we just jumping on the bandwagon of putting labels on every kid. It’s fighting for services since our social system only seems to care if you can sit at desk and write your name.
There are many moments of kicking ourselves for not doing more and moments of turning on one more TV show because we just can’t take it anymore. It’s tears and laughter and loving so much that it hurts mixed with the dark feelings of hate and regret because this is just so damn difficult.
So while I know I am not qualified to speak about the big picture of special needs blogging and what it is like to represent a community; I am qualified to speak about what it is like to come out of the closet and admit that there is something wrong with your child. I know what it is like to be “labeled” and dis-invited to birthday parties, to have your kids pre-judged before people even meet them.
This is what I hope to add to the conversation: the downsides of being open about special needs when your kids could easily pass for “normal.” But also how important it is that we stand up and speak out so that our kids don’t get lost in the mix. I hope you will be there to talk (and hug) it out with me.