This guest Q&A is with Frank Campagna aka “Autism Daddy” who is the father to a 13 year old son with classic autism & epilepsy. He has been riding the special needs roller-coaster for over 11 years now and has been writing about his experiences and has become a social media sensation with his blog and Facebook page. His claim to fame is giving people a realistic, non sugar coated look at the world inside an autism household; the good, the bad, the pee, and the poop.
Frank has also worked at Sesame Street for the past 22 years. He most recently served as the producer for all of the video content related to Sesame Street’s Emmy nominated autism initiative Sesame Street and Autism: See Amazing in All Children that you can learn more about here.
When did the idea for your blog Autism Daddy come about?
The idea for Autism Daddy came about in the spring of 2011 when my son was 8 years old and going thru a really difficult stretch behaviorally. I went on line to try and find blogs that were talking about the realities of parenting a child on the more severe end of the autism spectrum, and all I found were sunshine and rainbows and people saying things like “God doesn’t give you more than you can handle” and “God only gives special kids to special parents.”
So I started a Facebook page & blog called “Autism Daddy” where I show it all, the good and the bad, the triumphs and the tragedies. And people have really responded to it. 5 years later and I have over 140,000 followers on Facebook! I get messages daily thanking me for posting reality and people from around the world telling me how refreshing and comforting it is to see that somebody half way around the world is dealing with the exact same craziness that I am.
How is your family doing today?
Our family is doing pretty good. It’s just me, my wife, and my now 13 year old son. My son is nonverbal and has epilepsy on top of his autism. (The seizures started when he was 9). So life still has lots and lots of challenges and ups and downs, but for the most part we are all doing ok. My son is in a great school that hopefully he can be in until he is 21 so that takes a lot of the stress out of our lives. It feels like we’ve settled into our lives and reached a place of acceptance that we are going to work with what we’ve got, which on most days is an extremely happy kid.
How did it feel to be able to contribute to Sesame Workshop’s initiative? Julia, the first muppet ever to be on the autism spectrum went viral!
Well I didn’t work on the Julia storybook directly. That book was the brainchild and was written by another Sesame employee and autism mom, named Leslie Kimmelman. However, I did work on and helped produce all the films that were part of Sesame’s autism initiative. We produced films featuring a bunch of autism families and got to document a day in their lives. It was a truly amazing experience for me having my two worlds collide!
You’ve had several blogs that have gone viral that you’ve written. Is there a blog that stands out to you today as one of your all-time favorites?
My favorite blogs are the ones that truly help make special needs parents’ lives easier. For example, when our son was about 5, our pediatrician told us we could get a handicap parking placard for our car because our son has autism and had no sense of danger and would bolt off in parking lots. So when I started my Autism Daddy blog I googled “autism and handicap parking placard” and there was no website that gave you this info. So I wrote a blog post saying that it was possible and then I found the web links to all the handicap parking permit info & forms, state by state for all 50 states. And now when you google “autism and handicap parking placard” my post is the first thing that comes up! And at least once a week someone will send me a pic of a handicap parking placard that they just got in the mail thanks to my blog post. Nothing makes me happier!
Along these same lines of helping parents, another blog I’ve written that I’m extremely proud of gives step-by-step advice on how we potty trained our autistic son. I repost that from time to time and love to see how many shares it gets. Autism parents sharing it with other autism parents. I love that! That makes me proud!
What would be a piece of advice you’d share with autism dads based on your experiences with your son?
Being a parent is hard. Being a special needs parent is harder. You’ve got to figure out a way to roll with the punches. And fathers need to let go of whatever preconceived notions of what being a father is. I always dreamed of taking my son to lots of Yankee baseball games because that’s what I loved growing up. I always dreamed of exposing my son to the movies that I loved as a kid. We took him to a few Yankee games and it was a disaster. The sensory overload was too much. I’ve tried to make him watch a few of my favorite movies when I was a kid, like “Ferris Bueller’s Day Off” and he fell asleep! So being an autism dad is a lot about dealing with the hand that you’ve been dealt. It took me a while to accept all of this.
What’s next for you?
I’ve recently starting doing some public speaking and would like to take that to the next level. I do a very fun & funny presentation called “Things No One Ever Told Me After My Kid Was Diagnosed With Autism”. Hire me! And I’m slowly working on a book with the same title.
Any fun plans coming up?
Well my son goes to school over the summer, but in late August we have our annual upstate NY lake vacation so we are all looking forward to that.
Anything else you’d like to share with our readers?
I want to share with other autism parents how important it is to take a break from being an autism parent. It is important that you and your spouse each have non-autism related activities that you enjoy, that help recharge your batteries. You know what they tell you on an airplane, “put on your own oxygen mask before helping your children”, well that applies to parenting. You need to take care of yourself first so that you can be a better parent to your kids.
Hope you have an AMAZING Father’s Day Frank!
Thanks! We are having a brunch for all the dads in the family over my sister in laws house. And then me, my wife, and my son will probably head into Manhattan and walk around for a bit weather permitting.