As a writer, blogger, and participant in social media, I make choices everyday about how much to share of my family's lives. This responsibility takes on even greater meaning as I share the story of someone who is unable to participate in the sharing of his own story.
I do not take this responsibility lightly, but as someone recently called me, I am a staunch "defender of authenticity." I like to tell my truth on this blog, even though it doesn't always paint the prettiest picture of our lives.
Why do I do this? Well, for one thing it helps me. Blogging is, as they say, "cheaper than therapy"(though I pay for that too). Writing helps me process my feelings, and writing about even the hardest times lightens my soul and puts things in perspective. This also gives Jeff a break, since I can cry on my blog's shoulder once in a while instead of his.
Of course, I don't have to blog publicly to write my feelings, and I do keep a journal for more private thoughts (and a lot more swearing). But blogging also brings with it support. I get support from my community and I hope that I provide support for others.
On the other hand, I do believe I have the responsibility to correct some of the misconceptions about autism. Mainstream media outlets are quick to speculate, for example, about the autism diagnoses of the perpetrators of school shootings and this, among other stereotypes, is immensely harmful to the autistic community.
Media also love to share stories about remarkable individuals who "overcome" their diagnoses, or do amazing things despite their challenges. This is a more positive spin, certainly, but one that can be harmful in a different way. For one thing, these tales give a lot of false hope to parents like me, whose children may never have such accomplishments. For another, it sets the wrong expectation for the future needs of our children. Authenticity means being able to share a story of a severely disabled child who will grow to be a severely disabled man—a man who will require lifelong services, support, and resources.
Some bloggers just want to write happy blogs and there's nothing wrong with that. As for free therapy, research shows that people who express gratitude are in fact happier. According to Emmons & McCullough "in an experimental comparison, those who kept gratitude journals on a weekly basis exercised more regularly, reported fewer physical symptoms, felt better about their lives as a whole, and were more optimistic about the upcoming week compared to those who recorded hassles or neutral life events."
Others express the concern that their kids will one day read their blogs, and could be hurt to learn that their parents thought they were difficult. This is a real concern. But the truth is that in all likelihood Moe will never read this blog, although reading is a skill I long for him to have above almost any other. In case he ever is able to read and comprehend this blog, and because Moe is a person deserving of respect regardless of his abilities, I strive to always write first from a place of love.
Positivity and authenticity do not have to be in conflict. We have good times too, and I aim to share these more regularly. But I will continue to share the challenges as well. This parenting gig is tough, made even tougher with the uncertainties and struggles of autism in our lives. If there is anything I want other parents to know, it is that they are not alone. I never want someone to come here and think that if they are not all sunshine and roses, they are doing something wrong.