Noticed and Heard

During a conversation I had with a friend who was asking about my son Matthew, I shared that Matthew was very opinionated and very good at communicating his opinions.

My friend responded with some incredulity:

“How can he be opinionated when he can’t talk?”

“Oh”, I quickly replied, “his body language, eyes, and gestures can sometimes say it all without any words!”

For instance, every morning, when getting him dressed for the day, we present several choices of bathing suits and tee-shirts for him to wear. He wears bathing suits and tee-shirts every day of the year, no matter the weather. They’re under his pants and shirts during the colder seasons. But he wears them because he loves going to the beach every summer and wearing them gives him hope that summer will always return. Most days, he quickly looks at each suit and shirt and grabs his choice and often strongly pushes away those he doesn't want to wear that day. It doesn’t take much to discern which one is the day’s favorite for him. He’s very clear. 

During colder weather, when I’m dressing him, since he can’t do that on his own, I’ll occasionally, without thinking, try to put his pants on without first putting the bathing suit on underneath it. He lets me know when that happens. He’ll begin kicking his feet to tell me in his own unique way that ‘the pants don’t go on yet. The bathing suit has to come first’. He won’t allow the pants to go on without the bathing suit going on first. 

He’ll never push chocolate away or choose any other kind of sweet if chocolate is in front of him. It’s definitely a favorite, which is good, since we live in Hershey, Pennsylvania, where chocolate famously is made every day. There is also no doubt that Reese's Peanut Butter cups are his favorite Hershey product - peanut butter and chocolate combined. Nothing could be better in his mind. 

He makes all these things - and so many others - abundantly clear without any words being spoken.  

This morning, I was privileged to give a keynote address to a Pennsylvania state-wide organization of people living with intellectual disabilities, family members of people with intellectual disabilities, and professionals who work and care for people with disabilities. I spoke as a father and as a listening professional about valuing people with disabilities and how we can listen better to them - with respect, empathy, and love. 

I spoke for nearly 90 minutes. But I could still be speaking hours later about living with a son who has intellectual disabilities and autism. There are so many examples to give and stories to tell. Our lives have been impacted by Matthew and how we have been listened to (or on a few occasions not been listened to) with respect, empathy, and love, especially when Matthew’s health and well-being are in question. There are more stories to tell than I’ll ever have time to relate. But suffice to say, I have learned so much from Matthew about listening to, observing, and empathetically connecting with someone who doesn’t speak and who cannot convey his thoughts, wants, and needs in any normal verbal way.

Living and caring for him has taught me incredibly vital and useful lessons about getting to know people beyond simply hearing their words. 

I tried to convey in my remarks, today, the fact that listening well is beyond just hearing the words that people say. It’s also noticing what they don’t say, their body language, and the unspoken feelings they are projecting. Listening is a multi-faceted art and skill. It takes intention and resolve to listen well. 

In listening in all its forms to Matthew - when there are still many instances in which I don’t understand what he wants and needs despite his limited but very passionate efforts to convey them - I have learned so much about how vital it is to look for the deeper nuances and underlying meanings of how he is communicating.

But when Matthew’s communication surprises and delights me, I feel more connected to him. In gaining any new insight into his thinking, it helps to unravel just a little bit more of his unspoken preferences and joys. His is a simple, yet deeply complex, communication. He never gives up in trying to express himself, and I honor that about him, even when he’s relentless and I just can’t figure out what he wants. I will never understand him completely. But then, who among us can ever understand anyone else completely? 

I’m a sucker for stories about people living with disabilities who surprise and delight me in their own simple, but deeply complex, ways. Just this week I saw a video of a contestant on America’s Got Talent from 2023 - Lavender Darcangelo. She lives with autism and blindness. She captured the hearts and support of each of the show’s judges, most especially Heidi Klum, that year. 

Lavender sang beautifully and ardently. There was an incredibly heartfelt tone to her singing and she made it all the way to the show’s finale’. While she didn’t win the grand prize, she won the admiration and adoration of the audience, too. Her clear talent and the courage it took to perform in person in front of thousands in a theater and to millions watching on TV, not hiding or diminishing her disabilities, was viscerally inspiring. You can watch her audition and see what a triumph and impact she had.

Lavendar found her own way to be noticed and heard, and accepted for who she is, using the beautiful gifts she was born with. Matthew doesn’t have the ability to perform like Lavender. But he has his own gifts of communicating to be known and heard, that he was born with. And those gifts have most especially taught me what unconditional love truly is.  

Because no matter the struggles and mysteries of living with profound intellectual disability and autism, Mathew offers me the greatest gift of all - the opportunity to love unconditionally as much as is humanly possible, without pretext, or changing who he is. 

A spirit of light. 

A spirit of joy. 

A spirit of wonder and innocence in this world of too much darkness, sadness, cynicism and pain.