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.
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