Saturday, December 1, 2012

Do I Have the Right to Blog about My Kid with Autism?

The Husband taking a picture of me taking a picture of me & The Boy. Both pics were uploaded to Instagram.

I have plastered my son's face all over Facebook.

I've Tweeted his scripts and Instagramed his antics.

I've added text to his pics and pinned them to Pinterest and G+'ed them too.

For the last two years, I have lived 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.

And yesterday someone asked me the question:


Does your son know you are blogging about him?  Is he okay with it?

And I can't tell you how often I've asked myself: Do I have the right to blog about him?

I remember last year when The Boy 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

When I first started this blog, I started it as a class assignment. I wasn't thinking about comments or tweets, page views or pins. I never thought my son 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 they 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 (aka The Boy) autism. 

I'm a writer. I was 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 (aka The Husband) 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.

But do I have that right? 

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. 

 ***

Any other bloggers willing to share their thoughts on this? Would love to know!   

2 comments:

  1. I have been asked the same question and its as though you took over my thoughts with this particular blog post! I want people to understand my child. Educating the masses is a surefire way to help people understand that these kids are just "wired differently". While an Autism diagnosis isn't a death sentence, it is life changing to all those involved in that child's life. I love reading your blogs and Facebook posts! Keep up the good work! You are an amazing mom and human being in my eyes!

    ReplyDelete
  2. Awesome article! I believe that Norrin will love and respect what you have done and all you continue to do for him & autsim awareness! He will admire you for making a difference & respect you for all your accomplishments that you have made for youself, him & your family♡♥ I admire & respect everything that you are doing in the name of love & family! You & Joseph are doing everything you can for Norrin. You are all amazing in my eyes!

    ReplyDelete

AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.