On Being in Crisis

Things are really hard right now.

After discovering earlier this fall that our son has a PDA profile of autism—rooted in a deep need for autonomy and equality—things have continued to feel more challenging rather than easing. At home, we’ve had to reimagine what’s possible for our family and provide a very different level of support than before. At school, things have also become difficult, with increasing school refusal and significant anxiety around attending. I won’t sugarcoat it—it’s been an incredibly tough season.

Suddenly, I’m caregiving around the clock and squeezing work into whatever small pockets of time I can find. I feel particularly grateful right now for my unconventional work schedule. Being a working musician and teacher has allowed me to be present for many full and partial mental health days at home from school. I keep reminding myself that when things get this hard, it often becomes clearer what kind of support is actually needed—and that this is sometimes what it takes to bring a full team together to figure out next steps.

But it’s messy. Often, things have to reach a crisis point before you can even begin to advocate for more support, especially at school. And even then, there’s no guarantee that the support will be available, which places a heavy burden on parents to advocate persistently. Those first few mental health days were particularly hard. I felt pressure to get my own work done while also feeling responsible for helping my son keep up academically. Since a lot of his anxiety seems tied to school feeling too hard, I felt compelled to support learning at home in hopes of easing that anxiety.

Of course, that pressure—my pressure—wasn’t helpful. It only left me exhausted, burned out, and with less patience and presence to offer my kids, which is exactly what they need most right now. I’m learning, slowly, to let go of my own expectations and focus instead on what truly matters: my connection with my son, and helping him move away from constantly living at the edge of his capacity.

In the midst of all this, there have still been moments of joy. We’ve enjoyed cooking projects together over the past week, and a long visit to the BMX bike park—one of the most regulating activities for my son. I only wish it were open more than five days a week until 5 pm. These moments don’t negate everything else, but they matter. Focusing on them helps to bring things into greater balance, and helps my mental health.

This period has also prompted some important self-discovery. I’m confronting my own limits and realizing how essential it is that I tend to my needs, not as an afterthought but as a necessity. Supporting a child in crisis requires parents to be as resourced as possible. Radical acceptance—of where things are right now, of what is and isn’t possible—has become an essential practice. It’s forcing me to think more deeply about what supports and changes are needed, and how to make it all happen.

Being in crisis is hard. Sometimes the struggle has to become visible before meaningful support can come. And none of this is sustainable without care for the caregivers, too.

If you are in your own version of crisis right now, I see you. It’s hard. It’s lonely. And you are resilient—and your child is resilient.