Day Four of the National Disaster Massive Road Trip: Unpacking Memories at HOME!

If you have never driven through the Tahoe National Forest in the northern Sierra Nevada, I encourage you to put it on your bucket list. When California greets you with her spectacular snowy mountains, you may never want to leave. Every time I cross the Nevada/California border on Interstate 80, I’m struck by the beauty of my state and my good fortune to get to live here. Today’s blue sky was punctuated with huge, white, fluffy clouds. The snow on the mountains reflected the sunshine’s bright rays. I glanced back at the kids, ready to suggest that they put down their devices and look out the window. They were already looking out their windows, ready for our long drive to be over. 

Two hours later, I pulled the ginormous van into my Davis driveway, feeling as though we were returning from another world, and entering a new time. The kids and I agreed that we had been lucky on our NDMRT for so many reasons. Every detail worked out, despite a few snafus. I’m rather amazed we pulled it off. 

The ginormous van sits at about the height of a typical monster truck, so one more jumps rather than steps down from it. This van is a beast of a vehicle that served us well, but one that I will not miss. The sheer volume of unloaded college kid belongings surprised even those of us who loaded it in Wisconsin. Was that really only four days ago?

Even though I wanted to collapse on the couch, I made a quick run to Nugget (a favorite local grocery store) to pick up milk and eggs and all the perishables Andy and Jukie had consumed during their time sheltering in place. The checkout guy asked me, “So, you been keeping busy?” 😳 He would soon wish that he had never asked that question. Before long he was nodding with a wide-eyed expression that reflected his amazement and his discomfort. I suspect that he will never cross Wyoming in a snowstorm while navigating a vehicle whose windshield and headlights iced over to near opaqueness about once every 10 minutes.

Back at home, our family of five got our second wind over dinner and took turns swapping stories about our time apart. Surrounded by my own DNA, so to speak, I was done with social distancing. Geneva, on my immediate left, gave away the three oranges that her dad peeled for her, and wolfed down her noodles and fresh rolls, while Jukie, on my immediate right, gave me all sorts of beaming smiles as he devoured his salad. He exuded joy! And Margot, she got to sleep in my lap all through the meal. 

Geneva and Andy will finish their academic spring quarters online, with classes taught or taken in between long nature walks and bike rides, some of our favorite Davis activities. Truman has been making lists of books to read (he is finishing Return of the King now), movies to watch, and cookie recipes to try out. The last play Andy saw this month (maybe this year?) was Hamlet, in which the title character says “there is nothing either good or bad, but thinking makes it so" (or so Andy keeps telling us). This national calamity is awful, surely, as are our federal response and the man in the White House who should be leading us, but in our tiny corner of Davis this spring we will exercise social distance from everyone except those in the house, the close participants in our unexpected, extended, and, one hopes, healthy staycation. It starts for real tomorrow after we return this van with seating for 12, one which has been filled with stuff and memories that we will be unpacking for a long time.

Day Three of the NDMRT: Menace in the Mountains!

I feel lucky for us to have arrived in Salt Lake City safely. The Snow Hailnado we encountered on much of our drive through snowy Wyoming mountains caused the most treacherous driving conditions I’ve ever experienced. And I’ve driven through plenty of Midwestern blizzards. Visibility was awful. Snowplows were nonexistent. And thick ice kept coating our windshield wipers, necessitating frequent stops to scrape the ice. I’m so grateful to have had my fellow driver Mary with me, and can’t imagine having tackled the day without her. 

Every day each of us discovers what our new realities look like as we navigate our new restrictions. For example, at our Salt Lake City hotel tonight, our traveling party of five was told that no more than five people can occupy the lobby at once. We had to decide who was going to stand back out in the blustery wind so that room could be made for the hotel clerk or random passers-by. 

The former buffet breakfast is now served in individual bags, which only five people can grab at one time. Our fellow guests offered us knowing smiles as we attempted to give each other wide berths in the hotel’s narrow hallways, as if it were imperative that we not share the same Utah air. I caught myself imagining each person’s story — are they all on their way home, too? Were they as freaked out about all of this as we are? I would love to have asked them these questions, but I was in a hurry to collapse into my (also narrow) double bed, and those hallways weren’t wide enough to afford us what once might have seemed an everyday chat. 

Tonight Mary and I agreed that we really could have done with a bottle of wine. Instead, we settled for Door Dash noodles and a rousing game of Taboo, which Truman had packed. Tomorrow I deliver Mary to the Salt Lake City airport for her flight home to Denver, upon which time I will drive the 663 miles back to Davis. We’re returning to the temperate springtime of California, all of whose citizens were ordered today to Shelter in Place, something unfathomable just a few days ago. I don’t think I have ever felt so eager to return home to my own private shelter, and to see my guys and Margot. 

Just as rainclouds in California become snow squalls in Wyoming, so has the epidemic become an even more deadly pandemic since Truman and I left our golden state at the beginning of this week. As a “hot spot,” the Sacramento Valley may be more “hot” to the touch than anyplace else I have visited in our cross-country trip this week, but there is still no place that I would rather call my sanctuary than back in the arms of my husband and back within at least waving distance of many of you.

Day Two: The Outstretching Space of the Midwest

Day Two of our NDMRT feels more like Day 22. Is it just me, or does time now move at lightning speed? The news breaks come so quickly; we hardly register one alert buzzing in on our phones before the next news shock shakes us again. Feeling beleaguered, I find myself reacting viscerally to each incoming bit of information. Sometimes my heart races as I read aloud from my phone to whomever is nearby. I have no control over my body now as it regularly seeks either to fight or to choose flight. 

Even in such a state, I still have control over my breathing. Deep breaths help slow my heart rate. My state of mind usually follows my heart. Worrying for all our safety, I feel that I can’t get home soon enough. 

Slowly pulling away from Beloit College this morning felt surreal and so very sad: there were no students or faculty in sight. The moods of our small moving crew were helped by our sense of accomplishment for getting all the boxes and bins and people to fit into the ginormous van. I’m not sure any of us thought we could pull it off, but somehow we did, playing a complicated game of real-life Tetris. 

After that, with a mix of personal relief and public dread, we drove 678 miles through rain, through Iowa, and through most of Nebraska to reach a deserted hotel in Gothenburg, population 3,574, home to The Sod House Museum. Looking around the hotel, and around the town, we felt socially distanced. The kids went for a swim, which seemed safe, what with all that chlorine and not another soul in sight. The water seemed to feel like such a fun and soothing way to end a long day. 

Just before turning in, I look around and see that the pizza has been eaten, the many devices are charging, and everyone is asleep but me. Tomorrow we head for the mountain states and Salt Lake City, grateful that we missed the earthquake by a day.

Day One of Four: The Ginormous Van

What an incredible day. Truman and I made it to Wisconsin! Finally in Beloit, I am so happy to have my eyes on and my arms around my girl. Now to the challenge: cramming everything Geneva and her partner own into this ginormous van, which feels too big to drive, yet seems way too small to encompass all the stuff these kids have acquired over the last four years. I just want to get us HOME — and as soon as possible. 

In this uncertain new reality, we are all getting used to the idea that we cannot now come into contact with the people we love who are physically vulnerable. Today, I could not safely visit my three Illinois parents, all in their 80s. They live in Independent Living for Seniors, so there are no visitors allowed. How strange it felt to land at O’Hare Airport, and not drive straight to my mom’s home. And how could I possibly not visit a dear friend of 30 years who has been undergoing an intense treatment regime, a friend who needs every kind of support she can get? I parked outside her house, she bundled up and stepped outside, and then we stood about 10 feet apart and air hugged each other like crazy. What a strange and wistful feeling to have to keep your distance from a beloved friend you want only to throw your arms around.

And then finally, at Beloit College, we are all feeling so sad about saying goodbye to Geneva’s college experience prematurely. I had imagined that Geneva would be wearing a cap and gown the day we moved her out of her final campus residence. During what should be the end of spring break, most of the dorm rooms and apartments now sit empty of students but full of their belongings. Now everyone must leave. The virus struck our country so quickly; of course all the students had intended to return. Nothing is normal. Nothing feels right. 

Tomorrow we attempt our most ambitious day of driving, and straight into a snow storm. As a Californian since age 24, I wonder if I even remember how to drive in the snow. My first day of Driver’s Ed took place during a Chicago blizzard, so I suppose I can handle weather. I’m so grateful for my bestie Mary who flew up from Denver to provide driving relief, moral support, and lots of laughs. 

Meanwhile, we all must flatten the curve! As more and more of us “shelter in place,” I hope your adventures this week are domestic, warm, and at least a six-foot distance from those outsiders who do not share your DNA. I’m thinking about all of you, and hoping we all stay safe and well. 

Nebraska, here we come!

A Plea on Leap Day

Today on Leap Day, the rarest day of the year, we celebrate Rare Disease Day. On this day, we seek to advocate for and to raise awareness all around the world of the more than 7,000 rare diseases which typically receive little or no notice, as most people have never heard of them. 

My son Jukie was born with Smith-Lemli-Opitz Syndrome (SLO). SLO affects between 1 in 20,000 to 1 in 60,000 individuals and is primarily seen in people with European ancestry, and rarely in Asian and African populations. People with SLO cannot metabolize cholesterol properly, which affects every system in their bodies. All have some degree of Intellectual Disability, most have ASD (autism), and researchers have found that heart, lung, and kidney defects are common among those with the syndrome. Most kids with SLO struggle with motor development, feeding issues, and behavior challenges. And saddest of all, many of our children die as SLO has a high mortality rate. 

Children with disabilities are often defined by what they cannot do. My 19 year-old son Jukie, for instance, cannot speak. He can’t drive a car or take a date to a dance. He can’t go for a walk by himself or read a book. The list of “can’ts” seems endless; even all these years into his diagnosis, this list threatens to break my heart. But there’s another long list of things that Jukie can’t do on which I choose to focus.

As he is filled with love and innocence, Jukie cannot treat others unkindly. He greets everyone he encounters with the same sweetness. Jukie is everyone’s ally. He is incapable of bigotry, intolerance, or bullying. 

Jukie is unimpressed with titles or prestige. Whether he’s meeting one of California’s U.S. Senators or Mikey Mouse at Disneyland, Jukie sees all as his equal. When we toured the White House years ago, Jukie assumed that roped off rooms were merely jungle-gym invitations to sit on antique chairs. 

Jukie doesn’t experience sibling rivalry. Competition doesn’t exist for him, so he loves his brother and sister without the typical complexities which get in the way of sibling relationships. When he hears the voice of big sister Geneva (who lives thousands of miles away at college) on the phone, he waves and blows kisses. His smile tells me how much he loves her. When his little brother Truman gently redirects him many times a day, he accepts the correction even though Jukie is five years older and fifty pounds heavier. Jukie allows his little brother to play a big brother role and offers many regular, spontaneous hugs as evidence of his love and affection.

Jukie is filled with wonder, especially out in nature. He notices the tops of trees, morning dew on blades of grass, and just the force necessary to prune a neighbor’s fruit tree. He loves two-person bike rides (for he doesn’t pedal), greenbelt walks, and unknown vistas. Tie his running shoes tight, and he is ready for an adventure! Jukie has lessons to teach many of us about opening our eyes wide and filling the spacious “now” with his presence.

While we have learned many of those lessons from Jukie, every week on Facebook and via email I meet parents of children who have been newly diagnosed with Smith-Lemli-Opitz Syndrome. I am often the first person to disclose some of the difficult realities that I know well, sharing with parents truths that I wish I didn’t have to reveal. That’s why I donate my time as Director of Communications and Family Support for the Smith-Lemli-Opitz Foundation, so that I can connect the parents of new patients with other families spread all over the world and with the most knowledgeable specialists, and so I can raise money to fund research into this rare syndrome on Rare Disease Day.

If you are able, please consider helping people like Jukie, for the Foundation supports the thousands of individuals worldwide who have someone in their family as rare, as wonderful, and as deserving of care as is our beloved Jukie.

https://www.smithlemliopitz.org/donations/

Diagonal Adventures

All year long, we look forward to the second week in February. We get to spend it in San Francisco, which I think is the just about best place to spend a few days seeing sights. As we’re a family of writers, attending the San Francisco Writers Conference has become a family affair. Andy presents poetry summits by day, and with a quick change of clothes, dazzles as host of the jazz and poetry performances. This year, Truman participated in his first conference workshop for young writers. Some of you may know that Truman has completed a draft of his first novel (titled “The Impossible Luna Jade”), so he had some context for the lessons he was learning about writing. I enjoyed watching Truman excitedly exchanging texts about his experience with his big sister, off at college. Next year, she will attend as a conference volunteer and as a recent college graduate with a degree in creative writing. 

Because we take a similar trip every Valentine’s Day week, I can use this week to assess my kids’ (and dog’s) growth, physical as well as emotional. For instance, I should be used to Truman’s deep voice by now, but I’m still startled when I hear him intonate a phrase like “Let me check my phone to see what restaurants are nearby.” And I should be used to his height, but it still surprises me when I notice that my walking buddy now looks me in the eye!

While the Writers Conference is a big draw for us, any time we spent not thinking about, talking about, or dreaming about writing, we spent exploring the City on foot. Remembering tiny Margot’s fatigue on long walks this time last year, I took along her puppy sling, imagining that she would need to be carried when her wee Frenchie legs grew tired. But never did she slow or even pause during our typically 15,000-step journeys. Evidently, our daily four-mile walks had prepared her well for a series of grand city adventures. She seemed to delight in every moment. And why not? SF is crawling with dogs, especially Frenchies, and people who love Frenchies. Margot received significant love from dozens of strangers. I think she thinks she is famous!  

As we set out each day, we had a general sense of where we were headed, but by now we know the City well enough to navigate without the use of maps, which could spoil the fun. Besides, we feel that the best discoveries are the surprises we happen upon, such as the time we looked up to see what Jukie found so interesting in the sky: it was the parrots of Telegraph Hill. While lost in Golden Gate Park, we stumbled upon Shakespeare Garden, a popular site for weddings. And have you visited The Musée Mécanique? Who knew there was a museum filled with antique working arcade games down at the wharf? 

We could walk so much and so far because Margot was full of energy, because my knees lasted longer than expected, and because Jukie used all of his best behavior, even though we know grueling marches can be hard on him. I couldn’t blame him when he repeatedly stood stock still in front of me during the long climb up to Nob Hill. I encouraged him with, “There’s a park at the top!” He shook his head “no.” “I’m not pushing you up this hill,” I said. He signed, “yes.” We compromised by pausing every so often to eat bananas. And when we finally did reach the top, we delighted in hearing the bells of Grace Cathedral, which rang for many minutes, and which prompted Jukie to stand and watch the bell towers. People out walking their dogs stopped and sat on benches to listen. I don’t know if there’s a more magical sound than its forty-four bell carillon. 

Because we were stopped so often by Margot’s new fans, on our long walks Jukie had opportunities to rest and to share affectionate hugs, gentle head bonks, and kisses with Truman and me. Sleeping in (thank you, blackout curtains) and diagonally in a double bed next to his brother, Jukie must have realized that we were on vacation. I think the whole family is ready for another hilly adventure!

Pure Presence

Andy and Jukie have the most purely present relationship I have ever witnessed. 

Anyone who has seen these two together has noticed their special connection. Early on, Andy earned the title of Jukie Whisperer, for he can intuit Jukie’s needs and manage his sometimes challenging behavior with gentle, firm direction and greater ease than anyone else. Jukie listens to his daddy. And Jukie adores his daddy. They communicate differently than most fathers and sons as Jukie uses a combination of sign language, PECS, and his iPad to speak for him. But mostly, they communicate through love, laughter, and play. There is a delightful surplus of spontaneous affection in our home.

I often hear reports from friends and acquaintances of Jukie/Andy sightings around town. “I saw them riding down third street on their cargo bike,” they’ll say. “I saw them sharing kettle corn at the Farmers’ Market last Saturday.” “They were at an art gallery for a poetry reading, and Jukie was so well behaved.” People often compliment Andy’s parenting. He’s patient and sweet with our boy. He takes Jukie on adventures all over Northern California, and they are seen in museums, performance venues, and college lecture halls: places one might not think to take a kid with Jukie’s particular differences. What people don’t see is that Jukie is also teaching Daddy. Yes, Daddy works his parenting magic, but Jukie is the master teacher.

While Andy regularly practices Zen meditation, Jukie seems to live with Zen in his heart. Quietly attentive, Jukie’s natural state is peaceful and relaxed. He lives in the present with his attention sometimes focused on the beauty of nature: the wind in the trees, the clouds in the sky, and the French bulldog puppy in his lap. He studies pictures that he loves, pointing to show us what he notices. Sometimes out of context, loudly, and often, Jukie laughs, reminding us not to take life so seriously. He touches our faces when he wonders what we’re thinking. And he climbs in bed at the end of the day, and sometimes before the day has ended; Jukie always knows when he’s had enough.

If I’m being real, I need to add that it’s not always easy being Jukie’s mama. I worry all the time about issues that parents of typical kids don’t imagine. Sometimes his frustration overwhelms him, and he erupts. I fear that he could have an illness we will miss because he cannot tell us he’s in pain. I wonder if he yearns to communicate something more complex than what we understand. And I worry about his future life without the Jukie Whisperer and me.

When these thoughts threaten to overtake me, I think of Jukie’s teaching, and see the boy before me. I laugh with him. As we spin with our eyes closed, walk the greenbelts of Davis, take in the patterns of clouds after a storm, or taste each section of an orange as if it were our first, we are reminded of Jukie’s foremost lesson: We have today – be present.

Yoda Grows Up: Jukie at 18

For my special son on his 18th birthday. 

Today, sweet Jukie, you turn 18 years old. It’s almost as if I thought this day would never arrive, for when I held you and rocked you in my arms all those uncertain days and long nights so many years ago, the road ahead felt so daunting that I couldn’t imagine you ever growing up. 

Soon after your birth, people commented on your unusual look. They told me you looked wise, like Yoda from Star Wars. You were my silent Buddha, taking everything in, withholding your smiles, like you were rationing them for special occasions. You spent your time looking narrowly and deeply into my eyes. What do you know, I wondered. 

You have always kept your own timetable — you grew and developed on your own schedule. You cautiously waited 17 months to walk. Three days after your first step, you took off running. Running was your favorite, I used to say. It’s still your favorite. 

The countless hours we spent at physical, occupational, and speech therapy each week throughout your early childhood felt overwhelming, but they also made us hopeful. So many people loved and nurtured you along the way. When I felt anxious about your development, I borrowed from the hope and enthusiasm expressed by your therapists and teachers. I depended upon them as your cheerleading squad. Maybe I needed them even more than you did; they helped get us through those tough years. Even as you lost your language, you found your way. 

Your early elementary school teacher became my friend. She and I communicated in notebooks and then via email, filling each other in on your home and school life so that you’d have consistency going back and forth between these realms of love. With our letters, we took turns strategizing for you and speaking for you. Giving me her strength and her encouragement, your teacher told me to publish my stories. When I became a writer, you were my first subject.

Our last few years haven’t been easy. Adolescence rocked your equilibrium, caused you great frustration, and triggered your truculent impulses. Still you look into my eyes, and still you can’t tell me why you’re upset. We do our best to communicate with each other, often failing to understand. But we never stop trying. 

And now you are my teacher. Every day in your Zen way, you show me how to slow down, and how to focus mindfully on the small things in our lives. You draw my attention to a single leaf falling from the towering sycamore tree in our backyard, the sound of the wind chimes blowing in the breeze, a tiny droplet of condensation in the corner of a copper table, or the scent of curry coming from a neighbor’s home. I’m grateful to see the world the way you see it and through your eyes. That is my gift on your birthday.

My mercurial little adult, my beloved, take my hand. We will continue together.

Conserving our Love (for Jukie)

My husband Andy and I walked hand in hand into the lawyer’s office that first day expecting to discuss our son Jukie’s upcoming 18th birthday. The office was warm, but my hands felt cold. We had come to enlist a stranger’s help in taking away our son’s rights. And I felt kind of awful about that. 

Jukie was born with a rare genetic condition called Smith-Lemli-Optiz Syndrome, which caused autism and developmental delays, and which has required for him to benefit from constant supervision. He has no ability to speak or to care for himself. He cannot read or write. He can become aggressive when frustrated. He has been known to sample food from strangers’ plates in nice restaurants, and to climb out his bedroom window for late-night dances on our rooftop on a summer evening. He’s a handful in nearly every way. And his smile lights up a room and melts our hearts. 

When a child turns 18, s/he becomes an adult in the view of the law. And so in order to protect Jukie, Andy and I needed to obtain something called conservatorship, which entails a judge transferring all of Jukie’s adult rights to us. As we discovered the day after Jukie’s big sister Geneva turned 18, we could no longer schedule her doctor appointments or obtain her medical records without her consent. She had the right to make all decisions for herself. We hoped we had prepared our firstborn well for adulting. Always living between childhood and adulthood, our second-born Jukie would need his mom and dad to make his decisions of consequence going forward. 

The lawyer named Michael greeted us with a warm, welcoming handshake and invited us to join him at a conference table suited for about twenty people. He told us that he only practices special needs law with families like ours now, and that he had many questions for the two of us. How long had we been married? He smiled, commenting on our still sitting so close together after 26 years. We talked a bit about Jukie and his book-end siblings. And then Michael looked at me with sweet smile and asked me about my dreams for my life. I cleared my throat and asked, “MY life?” Yes, he wanted to hear about my hopes and my vision for my future, separate from Jukie. 

I found that I was trying hard not to cry. No one had ever asked me this question, and I realized that I hadn’t ever considered a life without caring every day for our boy Jukie. Michael began talking about the need for adults with disabilities to have their own life separate from their parents. Intellectually, I knew this was true. Jukie’s life growing up is a subject that Andy and I talk about, but one that we find nearly unbearable to think about. And here at the long table sat Michael the lawyer, a man I had only just met, asking me about my dreams. I realized I could no longer stop the tears that began streaming down my cheeks. Michael jumped up and left the room, searching for tissue. Andy removed his outer shirt and dried my tears with it. When Michael returned, he saw this scene, and commented, “that’s right Kate; you wipe your tears on Andy’s shirt like you’ve been doing for 26 years.” And I knew this Michael fellow was special. 

We started to talk about our dreams and the trips we’d like to take, a trip without the kids. Andy wants us to go to Nepal, I learned, while I thought we should pick a country in Europe that we hadn’t already visited. Similarly, Michael helped us imagine our dreams for Jukie, too, and this meant our framing the conservatorship differently from how we had before. Michael asked, “What good are rights for Jukie if he cannot access them?” Rather than taking away Jukie’s rights, we were beginning a plan to hold onto our parental rights. Nothing about life would change, Michael told us, except that we as Jukie’s parents would continue to make decisions for him just as we always had. This subtle shift in thinking helped me feel comforted by the process. 

Then we discussed all the various steps to come next. A court date would be set. Jukie would receive documents in the mail informing him of the conservatorship hearing, and he would have to be served (handed) these papers by someone outside our family. Then a court investigator would talk to Jukie’s extended family members, teachers, and doctors, and then come investigate us and our home. This process would take about a month, and we would have a few weeks to spare before Jukie’s 18th birthday. When the inspector came to our home, she inspected his bedroom and conducted a one-way interview with him. The report was thorough and included comments from telephone conversations she had had with our parents in Illinois and Washington, D.C.  

On the day of the court proceeding, we arrived early, and Jukie made himself comfortable on a bench outside the courtroom. In Jukie’s world, any chance encounter with an stranger is an opportunity for connection, and Jukie chose to connect with a woman whose purse interested him. After the first time he unzipped her purse, I apologized and she smiled. The second time he took something off of her purse, I sat between them. “We’re here for conservatorship,” I kind of wanted to tell her. She looked like a lawyer — maybe she’d be interested. Instead we sat in silence. I noticed that rather than the special book Truman had selected for Jukie to take to his big day at court, Jukie was holding a copy of Wine Spectator magazine. 

We entered the courtroom and were called to the lectern. Jukie spied a spinny, swively office chair and made himself right at home in it. “It’s Jukie’s courtroom,” Michael had told us. The judge examined the investigator’s report, asked us a few questions, including, “do you have plans for Christmas?” And just like that, conservatorship was approved. We stepped outside, and Michael photographed us high-fiving Jukie.

The courthouse photograph reveals the smiles on our faces and in our eyes, smiles that reflect the sort of calm confidence that comes from having accomplished so much with and for Jukie during his almost 18 years. While the challenges have been significant, we have embraced the ways these challenges have strengthened us as individuals and as a family, rather than letting us be defined by the inevitable setbacks and limitations that we have endured. Whether we eventually venture to someplace as mountainous as Nepal or as flat as Holland, we know now that all of us, even Jukie, will benefit from these important and necessary step towards greater independence. As our children grow older, as they exercise new rights by our sides or at increasing distances, we recognize that love means not only staring at each other, but also staring in the same direction, buffeted as we are by our familial love, and by all the requisite bravery we can muster.

World Autism Awareness Day

Today is World Autism Awareness Day. On this day, we shine a light on autism in the hope that those living with autism will feel less alone and know that people around the world celebrate, support, and welcome their difference, their uniqueness. 

Sometimes when a person becomes identified with a label, that label becomes all anyone sees. But as is true with members of any group, whether easily identifiable or not, we are all so much more than our labels. 

If you’re wondering what to do when you encounter an adult or a child like my 17-year-old son Jukie, I have some suggestions. 

Talk to them. Even though my son cannot use spoken language, he, like everyone, appreciates attention and respectful acknowledgement. 

Show kindness and compassion, as you would any other person. Be kind in your tone, in your curiosity, as well as in the content of your words.

Welcome them. Include them. If you’re throwing a party, invite them. If you observe a difficult moment, offer assistance or a kind word. 

Discuss their special interests with them. Have patience when they’re having a hard day. We all have hard days. 

Hire them. People with autism need and want meaningful and productive employment. All of us want something to do, a way to contribute.

Know that people with autism, like the rest of us, are individuals. As the expression goes: if you meet one person with autism, then you’ve met one person with autism. Don’t shy away from what it means to “meet” someone.

Get to know them. Sit with them; join them in silence. See what they see. Enjoy their company. 

Love them. The response to that love may be atypical, but the connection can nevertheless be authentic and consequential for you both.