My name is Frank. I have a 15-year-old son with “severe” nonverbal autism and epilepsy, whom I affectionately refer to as “The King.”
In 2011, I started a blog and Facebook page called Autism Daddy. I couldn’t find a place online that offered a true, realistic depiction of what being an autism parent was really like — the good and the bad.
Too many blogs I found were all “sunshine and rainbows.” So I began writing daily and posting pictures about my difficult, challenging, yet hilariously funny reality of raising a child with autism.
And along the way, people responded to it.
I get tons of messages every day thanking me for posting reality. People from around the world tell me how refreshing and comforting it is to know that there are parents dealing with the exact same craziness that they are.
My claim to fame on my blog — and this gets me in trouble sometimes — is that I tell it like it is. I don’t sugarcoat things. And I let the world into every aspect of my life: the good, the bad, the pee, and the poop.
That’s kind of where this particular post comes in.
I hear a lot from special needs moms and dads who feel they’re bad parents. They’re always feeling guilty that their kids can’t accomplish what should be simple, everyday tasks: “All the other kids have no problem doing that. Why is my kid having such a hard time? What am I doing wrong?”
I used to feel the exact same way.
And I’m here to tell you that you’re not a bad parent. I’m here to tell you that there are tons of us in the same boat. People just don’t usually admit or talk about these things.
I now wear my kid’s quirks and issues like a badge of honor!
With my son, it’s the seemingly simple things that are difficult. And some of the things most kids would freak out about, he’s fine with.
I’ll readily admit that some of the small, everyday things that he finds difficult have to do with his lack of fine motor skills.
At 15 years old and after years of trying, he still has issues with holding utensils, buckling and unbuckling his seat belt, and handling buttons and zippers on his clothing.
He doesn’t seem to have the dexterity for most of those things, but hmmm, he can sure navigate the tiny icons on his iPad with no issue! What’s up with that?
Then there are the bigger struggles…
Getting a haircut? It’s gotten better over the years, but for a long time, it was a two-parent job. One had to take off his shoes and hold his feet (so he doesn’t kick the stylist), and the other had to hold a mirror, because he’s quite vain and likes to stare and make dreamy eyes at himself as he’s getting his haircut.
Going shoe shopping? Oh my God. It’s freaking torture. Many typical parents tell me, “It’s torture with all kids.” But to them I respectfully say, “Um, no… not like this.” My son won’t push his foot into the darn shoes, and he’s 15 years old!
But the absolute worst task?
It’s impossible. I have a hard time admitting this, but I’ve given up on it. My son won’t let me put a toothbrush anywhere near his mouth. So I stopped trying. It’s been a goal on his school individualized education plan (IEP) for years with little progress, so I just gave up.
The reality of autism parenting for me is this: I choose my battles. And as hard as it is for me to admit this, with toothbrushing I’ve gotten to the point where it’s just easier for him to go into a hospital setting and go under general anesthesia every year and a half or so to have a good teeth checkup, cleaning, and cavity filling.
That’s right. My son is quite happy being a patient in the hospital. Loves it! Loves being the center of attention. Loves being wheeled around on a bed. That’s why he’s The King!
So the lesser of two evils between daily toothbrushing and a hospital visit is… to do dental work in the hospital.
The takeaway from all of this? I used to feel like a failure as a special needs parent because my son couldn’t handle some of these everyday tasks. However, as soon as I started talking about and writing about these issues, it was very cathartic for me. I found that there were tons of other parents dealing with the same issues.
The last thing I’ll leave you with is this…
I’ve learned that having a unique sense of humor about all of this can make things a little easier.
Here’s a perfect example.
The last time I brought The King into the hospital for dental work, I was in the room as he went under anesthesia. This is always traumatic for a parent to watch.
Anyway, as the nurse was leading me out of the room, I said to the doctors and nurses, “While he’s under general anesthesia, can I get his hair cut and nails clipped? Maybe give him a shave, too?”
They all burst out laughing.
But here’s the thing... I was only half kidding.
Frank Campagna — aka Autism Daddy — is father to a 15-year-old son with classic, nonverbal autism and epilepsy. He’s been riding the special needs roller coaster for over 13 years and writing about his experiences. Frank became a social media sensation through his blog and Facebook page. His claim to fame is giving people a raw, realistic look inside an autism household. Frank has also worked on “Sesame Street” for the past 23 years and worked closely on their recent autism initiative, “Sesame Street & Autism: See Amazing in All Children.”