I have plastered my son’s face all over Facebook. I’ve Tweeted Norrin’s scripts and Instagramed his antics. I have shared our lives via my blog. Sharing my joys. My sorrows. My fears. The stress of parenting a kid with autism and all of my added angst.
I have pushed my kid out of the special needs closest without even asking him. Or my husband for that matter.
I can’t tell you how often I’ve asked myself: Do I have the right to blog about him?
I remember when Norrin was in that horrible school and they were all reading my blog, picking my words apart to use them against me. I questioned whether or not I should continue blogging. I questioned if it was worth the risk.
I started blogging as a class assignment. I wasn’t thinking about comments or tweets, page views or pins. I never thought Norrin would become a “face of awareness.”
I just wanted to share our journey. I wanted to write the posts I would appreciate reading. Posts that were realistic to me and our life.
I’ve had conversations with other parent bloggers about this – our right to blog about our kids and the impact it will have as our kids grow up. It’s not a decision any parent blogger takes lightly – especially when a child has a disability.
Some bloggers are anonymous and reveal no photos of their children. Others change their names and share some photos of their families, and only from certain angles. And others – like me – have their real names and faces all out for the world to know.
I can’t speak for any other blogger except myself when I say I know why I am so open about Norrin’s autism.
I’m a writer. I was a fiction writer before Norrin was born. And being an autism mom has simply given me another subject to write about.
I write openly our life with autism because when Norrin was first diagnosed, I didn’t know a single person raising a kid with autism. I didn’t even know what autism was or how greatly it impacted the Latino community.
Every single book I read about autism was written by upper middle class (white) women who were able to quit their careers to become stay at home moms. Many of these women were married to white collar men, they lived in nice homes with backyards, in neighborhoods far far from mine.
I found myself comparing my life to theirs and feeling like a failure. And I felt like if these people with money and means struggled for services – what chance would my kid have? When Norrin was diagnosed with autism, there was never the option for me to quit my secretary job. And there was never the option for Joseph to quit his FedEx job. There was no way we could move to another neighborhood. We had to just make it work within our means.
So we scheduled some of our therapy sessions at the playground and when the weather was bad, we used the apartment building hallway for additional therapy space. And when it was time to sue the Board of Education, we didn’t have the money to hire an attorney, we went on our own. And won. Twice.
There is so much stigma about autism. And within the Latino community – autism is not something we are openly talking about or writing about. Latino children are going undiagnosed because parents do not know or understand what to look for.
I write openly because I want others to know the signs of autism. And I use my son’s pictures because I want people to see a real face. I want them to know that my son, Norrin, has autism. And he’s okay. We’re okay. I want people to see all the amazing things my kid can do and I want them to understand him without judgement.
So do I have the right to blog about my kid with autism?
Well, I’m his mother. And as his mother I wouldn’t want to do anything that will cause him any kind of harm or humiliation. I believe I share things about my son that are respectful to him.
I’ve shown him the pictures I’ve posted but right now, I don’t think he has the cognitive ability to understand what any of it means. But when he does, we will sit down and talk about it. And I hope he will understand why I’ve been so open about our lives. And I hope he will be proud to know that his face, his life, his words have made a difference.
[Previously published on AutismWonderland 12/1/12 – Do I Have The Right to Blog About My Kid With Autism? It has been edited & updated for Atypical Familia]