To Blog or Not To Blog

Two years ago I wrote my first autism blog for a hospital parenting program. I had mixed feelings about sharing my personal thoughts about Evan’s autism. I also wondered if it was my story to tell or if I was violating my son’s privacy by talking so openly about him.

As a writer, I felt an obligation to use my skills to help increase autism awareness and reach out to other parents of kids with special needs, so that their journey might feel a little less lonely. My goals were (and still are) to give hope, humor and a sense of camaraderie to others who can relate to the highs and lows of special-needs parenting. Fortunately, I found camaraderie early on in my journey, and that was key in my path to acceptance. It is such a relief to talk with someone who understands why birthdays can be so hard, why IEPs suck and what it feels like to have your parenting skills constantly judged.

The response to my first post was overwhelmingly positive. By sharing our stories, I felt that I could give moms and dads of typically developing kids an idea of what autism in a family looks and feels like.

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Although initially I worried about whether my writing was an invasion of Evan’s privacy, I have since concluded that there is nothing I could say that would embarrass my son. At the age of nine, Evan is comfortable with who he is. He loves attention – even though he doesn’t exactly know how to get it.

He will talk to anyone and everyone willing to listen. And if he’s not talking, he’s serenading strangers or dancing for them. It happens everywhere we go, from crowded elevators to restaurants and parks. Anyone who comes within five feet becomes an audience member.

Sadly, Evan’s peers don’t always know how to react, but most adults are willing to engage in a conversation or watch him “perform.”

Evan does not understand embarrassment, even though we’ve tried to explain it to him. Perhaps one day he will. When he innocently asks if it hurts when your face turns red, we know that feeling embarrassment is still a foreign emotion for him.

Although Evan wants other people to like him, he would not care how many Facebook friends he has or followers on Twitter. Engaging people in conversation and making them laugh gives him a sense of pride and accomplishment.

I am envious of my son. There are so many of us who feel we need to keep our guard up because we don’t want to be judged by others. Yes, Evan wants people to be nice and play with him, but if someone is not interested, he moves on; the way Evan sees it there are plenty of other people out there who would like to be with him.

So while Evan does not understand the concept of a blog, I am confident he would be fine with me writing extensively about him (unlike his siblings) Just, know that your comments, likes and shares won’t mean anything to him but I will always appreciate them.

4 Comments

  1. Laurie O'Meara

    Great job, Jen! None of us plans to be have a child with special needs, but we do the best we can and we are blessed by meeting so many people we would not have known otherwise! Evan can be proud of all you do on behalf of him and all children!

    Reply
  2. Lisa

    In so many ways I am envious of Evan…May he never know what it means to feel embarrassed and may his bright light continue to touch all that get to know him!! Xxxooo

    Reply
  3. schawna

    excellent work My friend. There is so much to gain and learn from hearing your stories and those of others.
    Thank you for taking the risk to help make the world a better place. Lots of love and congratulations on this endeavor.

    Reply
  4. Mary McMahon

    Great article Jen….life would be so much more simple if everyone didn’t care how many Facebook or Twitter followers we all had or if we never had to feel the pain of embarrassment. I look at my brother Jeff who has Downs and envy how happy and simple his life is. Keep up the good work, your stories will help many.

    Reply

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