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.

What I Want You to Know about my Son

Each year on the last day of February, more than 80 countries worldwide celebrate Rare Disease Day (the date falling on the rarest date on the calendar every leap year). We seek to raise awareness of the more than 7,000 rare diseases with the hope of improving treatment and access to medical care for millions of people — 30 million people in the U.S. alone, more than half of them children. A disease is considered rare when it affects fewer than 200,000 people.

As most of you know, my boy Jukie was born with one of these rare diseases, unknown to most, called Smith-Lemli-Opitz Syndrome. People with SLO cannot metabolize cholesterol as well as the rest of us do. And because cholesterol is essential to every cell in our bodies, SLO tends to impact individuals profoundly, causing a wide range of varying symptoms. Although there are several clinical research trials located across the country, no cure exists for Smith-Lemli-Opitz Syndrome.

Today I would like to tell you about Jukie. As my son cannot speak for himself, I have always felt a responsibility to speak for him. Although he was born with a rare “disease,” he is so much more than his diagnostic label: Jukie is a person first. He has more in common with you and I than not. He tunes in to the moods of others around him, often mirroring the tension or happiness of others. His laughter is contagious. He finds comfort in sitting close to me, often gently placing his bare foot on top of my bare foot. His feet are baby soft. Sometimes he bites his baby toe in anger. He takes my hand in a crowd. He feels compelled to run down every hill he encounters. He sleeps in, like most teenagers. We have to drag him out of bed for school.

Nevertheless, Jukie loves school, racing for the bus in the morning. Like other 17-year-old boys, he never stops eating. After he has finished his plate of food, he eats the rest of mine. He communicates with pictures and sign language, understands what we say, and not wanting to miss anything, pays extra close attention to our whispers. Jukie's got a great sense of humor, although we only know what he's laughing at half the time. He has a mischievous streak — like the way he locks the front door every time I pop out for just a moment, pausing long enough to enjoy a good giggle before letting me back inside.

Unmet expectations upset Jukie. Sometimes he likes things to be arranged in a certain order, or to be free of extraneous distractions, such as crumbs on a tabletop. Because he struggles to communicate and cannot negotiate, he experiences occasional rages, and such rages result in the most difficult times for Jukie and for those of us who care for him. Like any of us, he has trouble calming himself when he is upset. Unlike most of us, Jukie cannot transform his fears and anxieties into words. Sometimes he can’t tell or show us how that which he needs the most is painfully out of reach.

Life with Jukie is filled with sweetness. No one expresses joy so purely and abundantly as he. Life with Jukie is filled with sorrow. We worry about his health and about the years ahead should he outlive us. Sometimes I look up to find him staring at me; we lock eyes, and he doesn't blink. When I kiss or tickle him, he signs “more.” I always give him more.

Jukie wants what everyone wants. He wants love and affection. He wants kindness and acceptance. He wants human touch, he wants time with family and the friends who know him best, and he wants recognition on every day, perhaps especially on #RareDiseaseDay.

Distant Hearts, Distant Heartache

And we wept that one so lovely should have a life so brief.

~ William Cullen Bryant

Sixteen years ago, when Jukie was diagnosed with Smith-Lemli-Opitz Syndrome just shy of his first birthday, I had never heard of SLO. Not until his first visit several years later to the National Institutes of Health 3,000 miles away did I have the opportunity to meet another child with Jukie’s syndrome. At our first meeting, no one had to tell me this child shared Jukie’s diagnosis, for he looked as though he were Jukie’s baby brother, with his tiny upturned nose, cute, short thumbs, and adorable second and third toes, joined together in the shape of a heart. And the smile — no child smiles brighter than a kid with SLO. I had only just met this toddler, yet he raised his arms for me to pick him up; I was in love. I wanted to meet every family out there raising a child with SLO. 

All these years later, I now know hundreds of families with children with SLO. We  message and talk daily. I have friends all over Europe, especially the UK and Ireland, Australia, New Zealand, South America, and South Africa. We function like a large, extended international family. When language presents a barrier, we communicate with Google Translate, helping each other to manage our complicated lives and offer support, encouragement, and humor. My friends’ children feel like nieces and nephews. We rejoice together in every victory, no matter how small. And we know that no victory is small in our world; our kids are fighters. Some kids spend years learning to walk with countless hours of occupational and physical therapy helping along the way. I know one fierce girl who took her first step at 8 years of age. Now she occasionally pushes people out of her way. It’s not unusual for a child with SLO to begin speaking in elementary school. I know a young man whose mother feared he might never talk, and now drops the occasional F bomb…just like any other 19-year-old. I feel great admiration for people with SLO, for their fighting spirits, their impish humor, and their loving natures. And their parents are pretty incredible too. We’re spread out all over the world, bonded through the same twist of genetic fate. 

Sadly, treatment for Smith-Lemli-Opitz Syndrome remains inadequate, and the mortality rate is high. Over the last couple weeks, we have mourned the loss of several children and a young adult with SLO. Tonight, I’m heartbroken to learn of the death of an angelic two-year-old boy who captured my heart when I spent a few days with him last summer. I’m filled with sadness for his family, feeling helpless and so far away. I wish I could put my arms around all of our grieving families. As I can’t travel to all of you, I want to let you know that the virtual arms of hundreds of parents envelop you and share your grief from all corners of the globe. You all inspire me every single day. I love you guys so much.