Launching a Neurodiverse Teen

Learning to Trust in the Midst of Uncertainty

Aug 18, 2024

Lately, I’ve been wondering if we are making the biggest parenting mistake of the year.

Over the past fourteen months, our nineteen-year-old daughter’s body has become riddled with a constellation of debilitating health conditions. Despite our best efforts to diagnose and treat Ellie’s body, she hasn’t improved to the place that we hoped for.

Tomorrow, she is going to college anyway. Three hours away. Yet it feels like a world away.

Tomorrow, everything will change. The routines of our life for the past year - endless doctor appointments, lab tests, new medications, physical therapy treatments - will all grind to a halt. We won’t be cooking anymore for someone with severe digestive issues and food sensitivities. The gray and black recumbent bike that we picked up from a stranger’s house for Ellie’s home exercises will sit motionless in the family room, haunting me. I won’t trip over her cane in the mornings or push her walker out of the foyer. Her rainbow-colored tray of daily medications won’t block the toaster anymore.

Our dog will feel the Ellie’s absence; they cuddle while the rest of the family is gone.

As we’ve looked towards this day, I’ve felt a mixture of emotions. Fear and anxiety. Hope and gratitude. Doubt and anger. Ultimately, I feel grief at saying goodbye. Ellie and I have shared a special kind of intimacy that comes from walking together on her extended health journeys. Ellie has always needed me more than her siblings, which makes the prospect of separation agonizing, as if someone is ripping something out of my skin. But it’s also exhilarating to consider that she might have healed enough to walk, at least haltingly, on her own.

Why College Now?

I live in a sea of parents launching kids to college.

Some friends feel the bursting, almost palpable energy of teens who can’t wait to launch into their new life. I think of one teen, an athlete who spent her senior year driving herself to practice at 5 AM daily and single-handedly packed herself for college. Another friend’s son is so organized that he started his own income-generating business during high school.

Other parents, like me, wonder if our kid is ready. We have the kids who can’t remember to check their email, whose anxiety prevents them from getting a driver’s license, who prefer to engage with friends through a device than in person. In my case, my neurodiverse kid also has serious mobility issues.

I have wondered many times if Ellie needs another year at home, even though she already took a gap year due to health. I worry that she won’t be able to manage, between her neurodiversity and her health challenges.

But six weeks ago, I put the decision in her hands.

It was early July, more than three months since we had cheered and hooted over Ellie’s acceptance as a transfer student at her first-choice university. Soon afterwards, we praised God when a program for neurodiverse students within that university offered her a spot too. This program offers support around executive functioning, social skills and independence. When Ellie withdrew from college last fall, we realized that this was a key missing piece that she needs to thrive.

During family therapy, I asked Ellie to make a decision. Ellie’s health had worsened significantly since we sent in a deposit to the university. Language like, “if I go to college this fall,” had floated into our conversations. I told Ellie that I would support her decision to attend college or defer for another year, but we needed to move out of limbo. I said that I believed she was capable of navigating college, despite her health conditions, but I wanted her to commit for at least a semester this time. Our family therapist asked Ellie, “What do you need to make this work?” Then we brainstormed options together.

By the end of the session, Ellie decided to take the leap, her eyes joyful and wide.

Neither of us expected that this decision would be put to the test in coming weeks, with even more health challenges. But we keep moving forward. As someone who loves a good plan, I am struggling with living with the uncertainty of how Ellie will fare in college. I’m focusing on trust in three areas.

Share Evidence of Grace

Trust My Kid

At some level, as kids become teenagers and emerging adults, parents have to trust them to take care of themselves. Or at least, our teens deserve the opportunity to make mistakes, to explore new paths, and find their people, without their parents’ constant commentary. But it can be hard for parents like me to let go of our kids, especially when our kids have struggled with health challenges, even when we’ve watched them fall on their faces in painful ways.

I believe that deep down, Ellie’s healthy self knows what she needs. Ironically, even though making the college transition can be nerve-wracking for teens with physical disabilities, we’re learning that it can also be good for their mental health. For a student like Ellie with significant health conditions, engaging in activities that feel “normal” can be healing. Becoming sick-identified for extended periods of time can have negative consequences. Finding outlets, like an academic community or meaningful work, provides a sense of purpose and identity.

If Ellie’s mental health was unstable, especially in terms of her eating disorder recovery, I would be hesitant to support her in moving away. But she has demonstrated a solid commitment to recovery. When I feel anxious, I try to notice the moments when Ellie makes a mature choice, when she asks for help, when she shows good judgment. Even though part of me wants to keep her close, I know that I need to trust her to navigate her world without me by her side.

Trust Others

Over the past few years since Ellie’s depression, anxiety and eating disorder spiked, we have built an incredible support team which includes a nutritionist, psychiatrist and therapists. Now we have a medical team, too. As we transition Ellie to living apart from us, I sense an invitation to trust this team to support her well.

In college, I want to believe that there will be new arms to catch her when she falls. Perhaps I can already envision some of them: the caring director of the neurodiversity program, the academic advisor who welcomed Ellie with gusto. I imagine there will be others that I may never meet: classmates and friends, “Access Specialists” from the Office of Disabilities, Resident Advisors, professors and food service workers.

It is not easy for me to entrust my daughter to others. Admittedly, I have made myself the center of her caregiving team, both because she is precious to me and because I want to ensure that she gets the best care (hello, control issues). Letting go can be hardest with our children. Yet, I know that releasing my teens from their dependence on me is their path to growth.

Recently, I met with Ellie’s individual therapist. In an uncharacteristic move, I told her that I wanted to retire as chief organizer of Ellie’s recovery program, which includes four different sets of exercises to do multiple times a week. I admitted that I was done nagging, monitoring, and riding the wave of frustration when Ellie didn’t cooperate. I asked the therapist if she could please take over the whole thing. She said yes.

I felt a little bit empty, like I had just handed in my resignation. But I also felt an overwhelming relief.

Trust God

When I feel overwhelmingly anxious, I imagine my daughter wrapped up in the purple pastel blanket, dotted with butterflies, that she knitted. In my imagination, once Ellie is comfortable and cozy, I release her into God’s1 care.

Other times, I furiously write down my worries on little pieces of paper and put them in a box or in a candle, where I can burn them. It’s one more way of releasing my fears to God.

For those of us who raise a child in a church or a synagogue or another faith tradition, we hope that they will develop their own relationship with God. If I teach my daughter that God will be with her wherever she goes, I have to act like I believe it. God can take care of her in ways that I cannot even imagine.

A friend asked, “You’ve trusted God this far. Can you take an extra step to trust God when you cannot see the way forward?”

I ask myself the same question in a different way: “Can I trust God with Ellie when I cannot see her anymore? What does it mean to have faith when my mind racks up endless nightmares about what might happen to her?”

Ultimately, this question forces me to examine what I believe about God, especially after many difficult years. I know I’m not alone. The Psalms are full of pained prayers of people who agonized in times of betrayal, sickness, loneliness and loss, yet chose to believe in God’s goodness. Maybe they asked themselves similar questions.

As I prepare for tomorrow, I think that faith looks like trusting God especially when our children fall apart in mind or body. It looks like driving an overflowing minivan across the state and plugging in a dorm-size fridge without being certain that my daughter will be stay there more than two weeks. It means finding ways to breathe and meditate in our little garden in the days after drop off, despite Ellie’s loud absence. It looks like trusting the certainty of God’s goodness while accepting the unpredictability of how our children’s stories will unfold. And believing we will all somehow make it through in ways we cannot yet imagine.