Choosing Joy

 

Happy, happy birthday to our dear Jukie! Although it feels impossible to believe, today we celebrate the 21st anniversary of his birth. Wasn’t it just yesterday that Jukie was spinning endlessly on the tire swing in our back yard, running with abandon across the expanse of a neighborhood park, standing on his head against the wall while giggling, and running around our rooftop at midnight (while also laughing his head off)? Ah, the memories.

No one really teaches parents how to transition through different stages of parenthood as their children grow. We discover and navigate our way through each age, learning to adjust our parenting strategies as we go. Just as one can’t ever feel quite ready to become a parent, I think we’re often not quite ready to see our kids’ childhoods end. No one tells parents how wistful they will feel when they recall hearing their kids’ young voices or holding their little hands. At the same time, nothing prepares a parent for the thrill of seeing their young adult child launch and thrive on their own.

Parenting a child with profound autism sometimes makes Andy and me feel as if we exist on a different planet from the rest of the world, a planet where everything is heightened. Parents like us fear for our children’s future, knowing they will not launch as their siblings will. We sometimes feel guilt, wondering if we are doing enough to help our kids reach their potential. We also take pride in even the smallest of accomplishments, as we know that reaching each goal took tremendous tenacity and effort. And sometimes we feel isolated, wondering if we have any idea what we’re doing. If we’re lucky, we have friends who also live in this alternate world, who know and understand. 

For autism parents, birthdays can bring up a sense of ambivalence: we are reminded of all that our child will never experience, and thus we grieve for the dreams we had for our children. I don’t know what the future holds for my son Jukie. And this sense of the unknown terrifies me. And while all of those conflicting feelings leading up to my son’s birthdays are normal and expected, on the anniversary of Jukie’s birth, I protect our tenuous hold on optimism and forward momentum by choosing to focus on joy. Jukie is joy.

Zen Jukie lives in the moment, and he trusts in the world around him. He doles out pure love in high fives, laughter, and hugs, and expects and receives all of that right back. He trusts and accepts others and complies with most of what he is asked to do. He believes in sharing and being shared with, such as by snagging the lime from my drink the moment I turn my head. Sharing his big and often unexpected smile, Jukie busts out laughing when nothing seems funny, and we can’t help joining him in his infectious joy. 

And today, the occasion of his 21st birthday, our boy Jukie won’t quite understand the reason for the cake, the gifts, or the extra kisses. He won’t know the significance of this milestone birthday. But Jukie will feel our love, our attention, and our focus. He will know that we treasure and adore him. And we will feel so grateful, and so joyful, for having Jukie in our lives.

Jukie Returns to “Normalcy”

Today was Jukie‘s day to return to in-person school! Although his classmates have been back in person for weeks, we did not feel it was safe to send Jukie back until he had reached full immunity after his second vaccination shot. Thank you, scientists!

Normally Jukie takes the bus to school about 30 minutes away in the next town over. But today, Andy and I dropped him off together, wanting to see Jukie’s reactions to his old haunt, and wanting to see the reactions of the school staff that missed him so. Filming his initially skeptical reactions to the news that he was returning to school, we reveled in every element of Jukie’s triumphant return after more than an entire year without a single in-person experience with teachers, peers, or therapists. 

For the past year, school has existed only through small Zoom boxes on Jukie’s iPad. We often wonder what Jukie’s experience of the pandemic feels like to him and how he makes sense of the new ways in which the world operates. In the early days, masks on people’s faces greatly disturbed him. He didn’t understand why, overnight, everyone disappeared behind a face covering. 

Although not able to communicate verbally, Jukie is highly intuitive, having learned how to read facial expressions for context and connection. In fact, reading people is one way that Jukie negotiates the common misconception that people with autism are not social. The masking and social distancing that we have all been practicing, and Jukie’s inability to engage in school activities that give him some independence from his doting parents, have made it more difficult than ever for him to connect with others and to feel a sense of normalcy. Routine is important to people with autism, and he had suddenly lost all his school routines and with no way to process any of the confusing changes. 

And can you imagine Jukie wearing a mask? He won’t even wear a Band-Aid! A year into the pandemic, I think our record at keeping a mask on Jukie is about 90 seconds. For the last 13 months, Jukie’s only outings have been his daily walks with his dad. They walked for miles and miles every afternoon and usually into the evenings. If you live in Davis, there’s a good chance you’ve encountered them walking along the greenbelts or in the arboretum, leaving behind them a trail of branches Jukie pruned from the trees they pass. Since this time last year, our two family hikers have walked over a thousand miles. I bet they’ve covered every path in town. 

We waited until this morning to tell Jukie that today he would finally be able to return to school. I’m not sure he believed us until we pulled into the school parking lot. His eyes grew wide, and I think we all felt like maybe this was a dream — it had just been so long. While many of us spend time in long conversations with others, on social media, in Zoom rooms, or in our heads, Jukie lives in the center of his own awareness. Now that Jukie has returned to the teachers who know him so well, we look forward to him blossoming into a more comfortable version of himself.

Ninth Grade: 2.0 — A Restart to High School

Today was Truman‘s first day back at in-person school since this all began. He was given the choice to continue distance-learning at home or to return for the last few weeks of 9th grade. He enthusiastically chose to go back to school. In fact, he may never have felt more excitement for school than he did this morning. Andy and I both dropped him off so that we could witness this moment together. Truman didn’t even mind me taking his photo, saying that he knew we would always want to remember this day.

I know there are a lot of differing, complicated, and sometimes conflicted feelings about in-person versus distance learning. In our home, we are all fully vaccinated (except Truman, who is still too young). And as Truman has not had any in-person interaction with his peers in a over a year, we felt that consideration of his emotional well-being superseded the risk. So off he walked into school this morning, wearing pants about five inches longer than the last time he made this walk, and new shoes the size of his dad’s. He turned back for once last wave, and I recognized a hesitant smile behind two layers of mask. I kind of wish I could have followed him or peeked into the windows to catch a glimpse of how it’s all going.

I’m thinking of parents all across town and around the country who have bravely navigated these uncharted waters, trying to keep it all together and make the best decisions for their families. And I want to express my gratitude and appreciation for wonderful teachers for the endless extra hours they’ve invested in teaching our kids with enthusiasm and diligence, all while reinventing their profession. 

I wish all the students and parents a great first day back! May we extend one another compassion and patience as we figure it all out.

Seeing Jukie

This World Autism Awareness Day, let us celebrate and show solidarity with all people with autism. On this day, and on behalf of my son Jukie, I ask for more than just awareness. 

We must promote acceptance of individuals across the spectrum, which includes recognizing the profound end of the autism spectrum: people like my son are rarely seen. 

People with profound autism need a tremendous amount of care. This burden of love leaves many families feeling defeated and depleted. Especially during this ongoing pandemic, we need the support of advocates and champions to help us ensure that those living with autism have the resources and support they need to live life to the fullest.

My son is so much more than his label. He is not his autism. Autism doesn’t define him. He is a person who was born with a syndrome which causes autism. He’s more like you or I than he is different from us. Like anyone, my son seeks kindness, patience, and understanding. 

Please recognize my son’s value. Include him. Treat him with dignity. Though he cannot speak, speak to him. Though he may not look you in the eye, he sees you. My boy is a font of curiosity and of love. Look at him. See him.

Rare Disease Day 2021

This is my son Jukie. Jukie was born with a genetic disorder called Smith-Lemli-Opitz Syndrome. SLO is one of more than 7,000 rare diseases which are recognized today on Rare Disease Day, always the last day of February each year. A rare disease is one which impacts fewer than 200,000 individuals in the U.S. On this day, we come together to raise awareness of such diseases and show our support for one another. 

Most people have never heard of Smith-Lemli-Opitz Syndrome. My husband Andy and I had never heard of it before receiving Jukie’s diagnosis when he was 10 months old. We didn’t know that we were both carriers of the gene mutations that cause SLO in one in four pregnancies for couples like us. Twenty years later, we know more about SLO than most physicians. There’s a steep learning curve in the beginning for parents like us, but we loved our little guy so much that we had to learn quickly to figure out how we could best support him. 

In a few words, SLO is a metabolic condition involving cholesterol. Many of his challenges have resulted from his difficulty in metabolizing cholesterol the way the rest of us do. We give him supplemental cholesterol every day, but the SLO metabolic error causes (and caused) much damage before birth. One of the NIH research trials Jukie has participated in reviewed how cholesterol could better reach the brain where people with SLO really need it. Jukie has participated in many medical trials, and has undergone multiple spinal taps so doctors could better understand the blood-brain barrier, but after all these years, researchers still haven’t found a way to help his brain. 

SLO causes a wide range of challenges, and every individual is unique. Sadly, because every organ in our bodies depends on cholesterol, many children with SLO die at or before birth. Andy and I have had four pregnancy losses. We’re so grateful we didn’t lose Jukie. 

On this day, we celebrate Jukie and focus on his many strengths and gifts. 

Jukie lives in the moment; his example encourages the rest of us to do the same. He stops walking to look up at beautiful skies. He pauses to listen to the whoosh of the wind. Sometimes he looks intently into our eyes and touches our face. He shows us that life can slow, and we can benefit from a long pause. 

Jukie communicates with PECS, sign language, and an iPad, as well as with smiles, laughter, and love. Jukie demonstrates that the most important messages can be conveyed with a look or a touch.  

Jukie’s joy is front and center. He seeks and finds joy throughout the day. He spreads joy with his infectious laughter and impish sense of humor. In addition to his sometimes plaintive yodeling, Jukie fills our home and our hearts with joy. We are grateful for everything he has taught us, and we invite you to join us in celebrating him on this special day.

Jukie turns 20 in 2021!

Today Jukie turns ✨2️⃣0️⃣✨ years old. As I fell asleep last night, I thought about how we would make his birthday special. Although we could shower him with gifts, he has little interest in presents. Instead, Jukie craves our presence. So we will spend the day spoiling him with all manner of affection. And in that way, his birthday will look a lot like his every day. 

Jukie can use PECS (pictures), signs, and iPad to communicate with us, but he prefers to speak to us through smiles, laughter, side-hugs, and love. Jukie’s joy infects everyone around him and fills our hearts and our home.

HAPPY BIRTHDAY, sweet JUKIE! 🎂 🤟🏻 🧡

The Summer of Our Discontent

This is the story of our rough summer.

Some of you know that we spent the entire season selling our house...that is, trying to sell our house. A horrendous process during the best of times, this is one activity I do not advise: selling your house during a global pandemic. No one’s much in the mood to make a major life decision when we don’t even feel safe going to the grocery store. And selling your house while a deranged and tyrannical POTUS stokes fear and racism, attacks peaceful protesters and destroys democracy? It turns out that Trump-driven national instability also makes for somewhat of an uphill battle regarding home selling. Just for fun, the end of summer hit us all with the second largest wildfire in California state history at the edge of Davis. Nope. Not great timing.

In order to provide that perfect showplace illusion — that five human beings did not occupy this space known as our home — we spent the summer living with the knowledge that anyone could request a showing of our place at any moment. And when these requests came, we frantically texted, or yelled up the stairs to each other, some version of: SHOWING AT 11:00! After a week or so, we developed clear duties; we all knew our roles, and we got into a frenetic rhythm. (Truman probably vacuumed, swept, and mopped the floors 25 times this summer.) Sometimes we had to stash breakfast pans in the stove and clothes hampers in the garage. Always we hid toothbrushes and hairbrushes in cabinets and stowed loose paper in drawers. Every garbage can was emptied. Every light was turned on. Every bed was made to military perfection. And we walked out our front door knowing that strangers would soon enter to judge our most vulnerable and private spaces. 

I quickly realized the wisdom of removing all traces of personal effects as I found the process invasive and intrusive; I didn’t want people looking at photographs of my children or my husband on our honeymoon. After a while, I began to feel resentful of anyone looking at ANYthing in my house. Sure, showings are part of the process, but did these people have to enter my home? 

More than once I wanted to give up. We had had to cancel our vacation due to COVID and home-selling. Our anxiety levels seemed to increase by the day. We encountered many roadblocks along the way (starting with the shocking discovery that someone had recently stolen Andy’s identity and messed up our credit), but we navigated our way around each obstacle and never gave up. 

In the final weeks, we learned that the seller of our dream home threatened to accept a cash offer. Way too long story short: we found a buyer for our house! Just in time! We told our kids that the money was going through, and we celebrated the end of the journey: we would move into our dream house in about three weeks. We went to bed exhausted, but happy. All of our hard work and sacrifice had been worth it. 

And then we woke up the next morning to the news that overnight, the owner of the dream home sold his house to the cash-offer people. (As I see no point in going into the frustrating details here, I would just like to say that if you ever need a realtor, Chad Kime DeMasi is your man. He goes above and beyond what’s required. He did everything humanly possible to make our dream a reality.)

And so you may wonder why a picture of a loaf of bread accompanies this post. It represents all of the many silver linings we have discovered through the loss of this home. 

One of the hardest parts about thinking of moving had been leaving all of our close friends and neighbors on the South Side. (We don’t call South Davis the South Side, but I was raised part time on the South Side of Chicago, and that sticks with a person.) We love this side of town, and we knew we would miss it. The couple who live across from us felt for our dream-home heartache and appeared at our doorstep today with this freshly baked loaf of bread. (I ate several thick pieces for dinner tonight with an extra large glass of crémant — thanks Nathan Tran and Erik Reynolds!) An act of kindness like this helps quell our sad, mopey feelings and fosters our connection to others, something we all need right now. And when doesn’t fresh sourdough bread make everything better?

Losing our dream home gave us the gift of perspective. We already have a lovely home. Spending the summer attempting to sell it to some other family made us fall in love with it all over again. Fifteen years of memories live within these walls. Truman came home from the birth center not long after we moved here. Geneva held all of her slumber parties here. This is the only rooftop Jukie has ever explored after bedtime. 😬 Okay, that’s a memory that I could live without. But it did happen here. Twice.

We have not lost everything we own in a wildfire. We have our health. We have each other. And ours is a home filled with love and laughter and homemade bread, all appreciated consolations in a world of peril and uncertainty.

On Graduation Day

🎓 Imagine Geneva in a cap and gown because today was to have been our girl‘s college graduation day! The class of 2020 surely feels some heartbreak in missing their in-person ceremonies and all of the events leading up to their big moment. But we celebrate the graduates nonetheless, and all the more, recognize their growth, grit, and achievement.

Boonie graduates today with a Beloit College Bachelor’s degree in Creative Writing. She completes her college years with honors and having won the English Department’s short story award. I loved to watch her face light up whenever she talked about working as a TA for a Magazine Feature Writing class and as a tutor in the Writing Center. She’s already freelance writing, including book reviews and interviews with authors, and she plans to get her Master’s degree: Geneva wants to teach.

Geneva has already taught us lessons about perseverance, for she has faced all sorts of obstacles on her way to reaching today’s milestone. Her path wasn’t easy, so I am especially impressed with her effort. Our former Davis High Grad has become a lovely and remarkable young woman who maintains her compassionate heart and sensitive manner. It is a joy to watch her thrive.

Congratulations, Boon — We’re so proud of you and can’t wait to see what you do next! 👩🏼‍🎓

A World of Isolation

Today on #WorldAutismAwarenessDay, let us all stand together in celebration and support of every individual with autism. Let us recognize their unique gifts and seek to understand their challenges. Let us learn from their perspective and the ways they experience the world. Let us include them, always. 

I thank friends for asking about Jukie’s adjustment to our new realities living with COVID-19. People with autism typically find predictability in their routine necessary for comfort and survival. They need to know what to expect in any given situation and to be offered time to adapt to proposed changes. Jukie loves school. The sight of his school bus pulling up each weekday morning fills him with joy. Long weekends are hard on him. Spring break is hard on him. Quarantine has been especially hard on him. 

Struggling without his routine, Jukie has taken to pacing upstairs. “You must really miss school,” I say to him. He signs, “yes,” and studies me, waiting to hear when school will resume. I know that he must miss trips (what we call adventures) to the grocery store and the farmers’ market. He must wonder why we haven’t taken him to a restaurant or to a movie theater in so many weeks now. I watch him look out his bedroom window at the cul-de-sac below. He must be wondering where all of his adventures have gone, and when they might return. Jukie has multiple underlying conditions which put him at high risk for a severe reaction to this virus, so we are not taking any chances with his health. 

I feel sad for Jukie, and for all of us, but I also recognize our good fortune. We have a  grassy backyard in which Jukie may frolic and a trampoline on which Jukie may jump. We live on the greenbelt path which weaves all through the town of Davis, stretching for miles, and a puppy who needs our company on long walks — one of Jukie’s favorite activities. We take Jukie to the Arboretum where he can watch the ducks and squirrels and commune with the horses and the donkey. If he’s lucky, he may see an otter or a great blue heron. Jukie’s a nature boy, so our walks have always been part of our daily routine. 

As we all learn to navigate our new normal, we feel our anxieties rising. We’ve developed domestic routines that we must follow, and we find the dangers and the unpredictability of the outside world frightening. Perhaps our new, shared experiences offer us insight into the world of someone with autism. 

Let’s all support one another. Let’s show solidarity with individuals with autism today and every day. 💙

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.