What's So Funny About That?

In our latest blog, podcast episode - A Place to Belong - our guest, Kait Gillis Hanna - talks about her four-year old daughter Nour, who was born with Down Syndrome, and how Nour’s diagnosis inspired Kait to create a coffee shop - Nour - that hires others living with neurodiversity. 

During the conversation, Kait talked very personally about what it has been like being the mother of a child with an intellectual disability and an advocate for others like her daughter. It was a much more personal conversation for me than many, as the father of a son - Matthew - who lives with profound intellectual disability and autism. I rarely identify myself in the blogs that we publish or write from the first person. But every once in a while it’s impossible not to, when the topic is so close to my heart and such a defining part of my life. Since Kait was so open and vulnerable in our podcast conversation, I am motivated to be more open and vulnerable in today’s blog, too.

When Matthew was three-years old (he is now an adult), his pediatrician suspected that in addition to his intellectual disability, he might also have autism. She felt his behaviors checked off many boxes on the list of autism characteristics. So, she sent us to see a genetic specialist in a major medical center about 45-minutes away from where we lived at the time in north central Pennsylvania. After asking us a multitude of questions about Matthew, and observing him, that doctor’s verdict was that Matthew did not meet every single characteristic on the list, which meant that he did not have autism. He compared his reasoning to pregnancy. You are either pregnant or you’re not, he said. You can’t be partially pregnant. You either meet every single characteristic of autism or if you don’t, you do not have autism. Autism is not a spectrum, he declared. It was 33 years ago when that was the common belief. So, we left for home a bit deflated. The purpose of receiving an autism diagnosis was to open up Matthew to more targeted therapies that could help in his social, physical, and cognitive development. Without a diagnosis or attaching a name to certain characteristics he possessed, his therapy and support would be more limited - and so would his life.

But Matthew’s pediatrician, an absolute angel of compassion, empathy, and kindness in the minds of my wife Kathy and me, wasn’t satisfied with the specialist’s rendering. She was certain that autism was an appropriate diagnosis. So, she sent us to another medical facility - the PennState Hershey Medical Center, where Penn State’s Medical School resides, in Hershey, Pennsylvania. There, we met with another genetic specialist and a team of medical residents for 90-minutes, plus with a photographer, who took a score of photos of Matthew with me holding him to keep him as still as possible for the pictures. The specialist wanted to share Matthew’s photos with other specialists around the world, to learn if there was anything even more specific that could identify the many physical and behavioral anomalies he possesses. 

During the interview with the specialist and her team, she asked us to talk about some of Matthew’s unusual behaviors. Just at that moment, Matthew obliged by flapping his arms and hands wildly and shaking his head the same way. I looked at the doctor and said, deadpanned, 

“You mean like that?” 

The assembled medical professionals all smiled and chuckled. Matthew had obliged perfectly, unwittingly as far as we could tell (But maybe he did understand what he was doing. We may never know.). 

The specialist declared to both Kathy and me, 

“It’s really important that you can have a sense of humor about these things. I know that it will help you a lot in the years ahead, to help you as you care for Matthew. I’m so glad you can see the humor in this moment.”

Truer words have rarely been spoken. 

We’ve needed a sense of humor on a daily basis with Matthew, to help us keep from despair, exhaustion, lingering anger, resentments, and giving up when his care is overwhelming, non-stop, and limits many aspects of our lives that most people simply take for granted. We have to think about every single action we take on a daily basis and how our care for Matthew will impact or be impacted by every choice we make.

Several years later, when I was leading a seminar for people living with cancer (of which Kathy is a survivor), and we were talking about some of the challenges in our lives and how we meet them to keep as healthy as possible, I shared the story of our meeting with the genetic specialist and her affirmation of us having good senses of humor and being able to laugh at some of the many unique and sometimes absurd experiences with a child living with neurodiversity.

One of the participants in the seminar didn’t find that to be so funny,

“I’m surprised that you would laugh at your son who has disabilities. What is so funny about that? I don’t think you should laugh at someone with disabilities”, she replied to my example.

I took a deep breath and replied, 

“Well, most of the time I would agree that it’s not good to laugh at someone’s disabilities, especially to mock them or degrade them. But for us, we live with those kinds of behaviors and challenges with Matthew every single day. They are just part of who he is - the hand- and arm- flapping, the almost violent shaking of his head that some people living with autism commonly will do, the spinning around until he drops over onto the floor. Laughing sometimes keeps us sane. It releases the pressure, like a safety valve. It keeps us from descending into darkness that could be all too hard to come out of. We can laugh or we can cry to release the pressures. Sometimes we cry. But mostly we laugh. It brings more light into those moments and into our spirits. We need those lighter moments very, very much. And I'm certain that most families who have someone they love living with neurodiversity feel just the same.”

I caused her to think. I believe I won her over. I hope I did.

Kait Gillis-Hanna feels the same way, too. We talked about that in the podcast. A sense of humor is so vital to have in the lives we are living with Nour and Matthew. Humor is a lifeline that keeps us going, that keeps our marriages from disintegrating, that keeps our other children from resentments that may never go away. It shines light on the darkness that can often wear us down.  

Kait has a brother - Shane Gillis - who is a nationally-known and popular comedian. He sometimes shares funny stories about Nour and disabilities. He gets criticized, sometimes, for those jokes and stories. Someone people will ask, “What’s so funny about that” Sometimes, people come to Kait and ask, incredulously,

“How can you let your brother make jokes like that?” She responds:

“He’s an adult; can you make your brother stop doing things you might not like?”

But she also appreciates those jokes. They are another release valve for her. Besides, her brother Shane is Nour’s biggest advocate and supporter - for both his niece Nour and the coffee shop Nour. He loves his sister and her family. He’s headlined fundraisers for her advocacy for people living with neurodiversity. He’s an investor in the coffee shop. He’s a stalwart champion of inclusion for those living with disabilities. Kait says a few jokes and some crude words don’t diminish for her the love and care Shane gives to her family.

So, what’s so funny about that?

Not much. Inclusion for people living with disability is serious business. And I’m all in favor of that.