The Today Show experience

When Danny and I were asked to join the Today Show for a segment on autism awareness I thought, "Do I really need to answer that?" But then after I said yes, a panic within me ensued!

I'm no stranger to speaking in public. I've done many presentations, spoken to a room full of people, and built community within schools by speaking publicly. But this was different. This was our life for all the world to see. 

I'm not shy speaking about autism. One of the reasons I educate as many people as I can, is not for me, but for my children. Who among us wouldn't go above and beyond for them?  But lately, I've been feeling down.   We all have guilty feelings when we feel we aren't doing our best but it's just a pestering thought and our own self consciousness that makes us think that way. I knew that going to the show would open up the floodgates to my emotions but how could I say to my children to be fearless, when I was scared to death! But off I went, children and husband in tow, to speak to over a million people.

When you're asked to describe your autism family, you have to pick apart everything that you know and say one thing that can bring home everything that you are feeling.  But I wanted to elaborate on two important questions Willie Geist of the Today Show asked me.

What do I find most challenging?

4 things:

1. As I mentioned, communication. Why? Having a nonverbal child and a limited verbal child is very challenging when you don't know what your children are feeling. Aside from basic needs, like wanting food, I don't know what they are feeling.  When they get home from school, I don't know if they had a good day. I don't know if there was someone that bothered them, etc.

2. Since autism is a spectrum and no two children are alike, how do I balance two autistic children's needs that are the total opposite of each other and make sure they are thriving?

3. Making my oldest feel included. Work on educating her on autism and trying my best to make sure she gets it despite her young age. Working on how to maneuver through any resentment she may have of her siblings since most of our energy is devoted to them.

4. How do you get over people you trusted and loved walking away from your life because of your children's diagnosis? That's a tough one. I don't think you can, despite what your head tells you. It's like being slapped in the face with no explanation as to why. It's more of a feeling of 'how dare you" than "I miss you."

My husband's words struck me too. In the four years since Daniel's diagnosis, he has never, ever, EVER said to me what he chose to say on the show. I know it's hard for a father to express himself when it comes to their children and he eloquently spoke about what his heart has harbored for so long. But could I have gotten a warning?!? Sheesh!

And what would I say to those parents of newly diagnosed children? 

Never take no for an answer. Your children deserve 100% of everything afforded to them and more. We are their best advocates until they find their own voice.

Without the Today Show, our family wouldn't have been able to let the world in on autism as it affects us.  I'm grateful that they wanted to hear our story and I hope we did our fellow autism mothers and fathers proud. 


Popular posts from this blog

Month 4 (A Motherless Daughter)

A Year of Firsts

1 year later. A letter to my Mother.