First of all congratulations on writing “It’s Okay to say the A-Word!,” about your autism journey with your son…
Have you ever written an article or book before and what how was the experience of writing it?
I’ve written two books, both fictional pieces and both have been romantic comedies. Although both are totally made up, they each have a part of me in them. However, for my new book “It’s Okay to Say the A-Word!” I started out writing about a mom with a son with autism as another fictional piece and it just didn’t have the umph I wanted it to have. I realized that if I wanted to convey the feelings and the love and the hardships of going through a diagnosis and learning that I had to become a stronger woman than I ever thought possible for my son, I just needed to tell our true story. I love writing, it’s my escape after working an eight hour day, coming home, getting dinner on the table, getting my son to therapy and back and bed time…and after all that, I still make sure to give some time to myself to escape into a story.
In your overview of the book, you share that this isn’t a typical book about autism…how so?
When my son was diagnosed with autism, I remember going to the bookstore and looking at the “special needs” section and thinking that was a huge mistake. They all looked so depressing with a sad, lost and lonely kid on the cover or some lonely flower in a field. My son wasn’t sad or lonely, he was the cutest and happiest kid ever! So what if he was different? We had a ton of fun! So, my book is about how even though autism has been a tough road for us, and even though we’ve had hardships beyond autism, like the loss of previous pregnancies, adoption, an autism diagnosis and then also epilepsy…we’ve learned to take the cards dealt to us in life and make the best of them.
I’ve learned to really listen to my son when he couldn’t speak, I’ve learned not to read books about how I should act and what I should do with a child with autism, but instead to embrace him, to love him for his differences and to act life a goofy nerdball in order to get my son to laugh and learn a language we could both use together!
The key to my son’s learning was to make everything fun! Now, in saying that, my book also explores the many mistakes we’ve made that we can laugh at now, like FedExing poop samples or psyching myself up for an IEP to the tune of Eye of the Tiger. And suspecting that maybe, just maybe, our son doesn’t have autism, but super powers like laser vision and the ability to see sound waves while doing Sonic-Boom stimming to drive us just a wee bit crazy! It’s a real honest and funny look at what it is really like to be a fighting autism mom.
You mention that this book is about the adventure of how you became “an AU-some mom while happily losing your sanity along the way.”
Tell us something AUsome you’ve learned…
I used to be scared of the word autism, I used to refer to it as the A-word because I didn’t want to believe my son was autistic. The most important lesson that my son has taught me is that it’s okay to say the A-word. Autism. It’s not that big of a deal. Because, at the end of the day, my son is not the label, he’s not the disability, he’s David. He taught me to be a fighter, a teacher, an advocate, but most importantly, he taught me it’s okay to say the A-Word!
Share a sanity losing moment and how it was resolved.
I would have to say one of the lowest points in our journey so far, was my 30th birthday. David had been having these weird episodes in the morning when he woke up. I recorded it on my phone and on my 30th birthday, I showed it to my son’s doctor and for all the things we’d been through with his autism and for all the improvements he’d been making in therapy and at home, our doctor handed the phone back to me and told me, “those are seizures. He’s having seizures.” That was a blow that was hard for our family. But, we got through it, we worked as a family, as a team, but we got through it.
Do you have other children? How is their relationship with their brother?
Yes, I have two beautiful kids. Both are adopted as you learn in the book and David is the oldest, my daughter, Cassie, is four years younger. Although she’s younger, she’s taught him things we would have never been able to teach him and she loves him more than anything. She’ll be the first one to mess with him, but if someone messes with him…God help that child because my sassy Cassie is not one to mess with. She doesn’t see him as the label, she sees him as her older brother. I sometimes wish more people had the same mentality towards kids and adults with autism, to look past the label and see how great our kids really are.
What overall message would you like to give to parents whose children have just gotten an autism spectrum diagnosis?
Don’t give up on them. Ever. In my book, I encourage parents to learn more, to research everything, to buy the special education law book and read it. And then smoosh it around and mark it up with tabs and bring it to your IEP so those administrators know you know what’s going on and that you’re in control. It’s so easy to get overwhelmed, but we as parents can’t give up the fight. Our kids are worth it.
Is there any advice for the extended family—grandparents, aunts, uncles, cousins—as to how to best offer their support?
Just listen to us, let us au-some parents vent because sometimes we just want to have a good cry when no one’s looking. And then, when we’re all snotty and doing those choking hiccups, hand us a tissue and tell us you love us and that tomorrow’s a new day. And maybe treat us to a massage once in a while.
Finally, what would you like someone to take away from reading your book?
My book isn’t a guide to raising a child with autism. Really, it’s a helping hand and it’s a reassurance that all the emotions we go through as mothers are okay. I sometimes felt lonely, like I was the only mom out there going through this. But the more I learn from other parents like me, we all felt that way early on and I wanted to write this book as a supporting story that my readers and parents could relate to and think as they’re reading, “Thank goodness I’m not the only one going through all this crap!”
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