Rethinking the Nest

Rob Hudson is a Frank Trippett Advocacy and Outreach Fellow, and Digital Communications Manager for The Arc of Northern Virginia. Rob’s advocacy on behalf of his daughter, Schuyler, who has a rare disorder called polymicrogyria, has guided his personal philosophy for the past twenty years.

Rethinking the Nest

For families like ours who support loved ones with intellectual and developmental disabilities (IDD), there are family dynamics and experiences which feel very different than those of typical families. It makes for weird family discussions around the Thanksgiving dinner table, where our bar for success can feel so alien compared to everyone else’s. We stand apart in so many ways, even though as a community, we have a lot more company than we probably realize.

I know for me, one of the topics that comes up where I feel the difference of my daughter’s experience so keenly is that of the empty nester. I’m at the age where most of my contemporaries are coping with the pain and the joy of watching their children move out into the world. It’s something I watch with a curious mix of horror and envy.

As a young parent, before my daughter’s disability and her uncertain future were revealed, I imagined a day in the distant future, one where I’d tearfully wave goodbye as she left for college and then shuffle off to sit in her childhood bedroom, looking wistfully at her posters on the wall before heading off to bingo night or whatever old person’s activities I’d chosen to occupy my time. (Clearly, my idea of what the future looked like was unduly influenced by bad TV.)

With her IDD diagnosis at the age of three, I began to see another future.

I struggled with a version of that future where the nest might never be empty. When I became a single father, I tried to wrap my head around the reality that any future romantic relationship would need to occur with someone who was willing to entertain having an adult live with us far into the future. I’d never know the pain of saying goodbye and the worry of her living on her own, but I’d also never get to experience the joy and the pride of watching her succeed on her own terms. We would be tied together until the end, probably my own end, and didn’t that just open up another giant can of anxiety?

Turns out, that narrative was also untrue. I did indeed marry an amazing person who was willing and even excited to join my little pre-formed family, and as we move forward, I can see how a kind of independent life might be a possibility for my daughter. There are so many organizations that we partner with here at The Arc of Northern Virginia, including collaborative  events like our upcoming Housing Tour with Our Stomping Grounds. They work tirelessly to provide living scenarios for people with IDD, as well as things like employment supports and community outreach. Exciting approaches like Supported Decision Making and Special Needs Trusts help family and other support people learn how to provide much-needed supports into an increasingly independent future.

One thing that has become clear to me over the last few years is how out of all the impediments to my daughter having a more independent life, one of the most complicated obstacles might be the ones I put in her way. My own inability to easily let go has turned out to be a powerful force. I’m also discovering that I’m hardly alone.

In advocating for our loved ones, it can be easy to convince ourselves that we are irreplaceable. Honestly, it’s easy to believe that because by and large, it is absolutely true. We learn the hard way, particularly when our people are very young, that if we don’t stand up for them, if we don’t do the work that goes so far beyond what others are required to do for their children and family members, and if we don’t allow ourselves to feel pain and outrage and hope on their behalf, who will?

We work so hard and without pause to teach the world around us to respect those with disabilities, to acknowledge their humanity and to give them the spaces and the opportunities to flourish. Because we understand the stakes and see all too often how loved ones like ours can fall through the cracks, our advocacy is of a very protective nature. I can’t tell you how many times I took a chance with my daughter by encouraging her to step outside the safe space we’d created for her and did so with the dread that the world was a dangerous, uncaring place. I feared that the woods were full of wolves, and I was setting her loose at their mercy.

If this feels like something you’ve felt or are feeling right now, I don’t have any magical solutions or easy answers for you. But I do have some reassurances to offer. The first is that it’s okay to make mistakes. It’s okay to let our kids stumble as long as we know, and more importantly THEY know, that they won’t do so alone.

This was a very difficult lesson for me to learn, and it’s one that I still struggle with. My daughter’s speech difficulties mean that she is often frustrated by the world’s inability to easily understand her. I have to learn to be okay with her frustration and to step back to allow her to navigate those moments. I don’t need to speak up in order to make clear what she’s saying. The uncomfortable silence while they figure this out is incredibly awkward, but it can also be a powerful learning moment. I just need to let it happen if it must.

I have to let her botch the laundry or break dishes or burn popcorn in the microwave (although that really is the worst, for days). As long as she knows that someone is there to help her and guide her through her difficulties, I have not failed her by letting the mistakes happen in the first place. It feels counterintuitive to me, the idea that the best thing I can do for her sometimes is to let her crash. I’m still working on this one, and it is the thing that scares me the most about the next step, a world in which she might live away from me, when my nest might not be completely empty but certainly looks wildly different that it does now.

The second reassurance I can offer is that contrary to the creeping feeling that so many of us feel, we are not alone in this. We don’t have to find all the answers to what an independent life with supports might look like or how to make it work. Letting go of some of our workload is easier when we understand just how many people are out there who can help make it work. We’re not sending our folks out to face the wolves. We’re learning to trust other people who care.

One of the reasons I personally enjoy working at The Arc of Northern Virginia so much is how I get to meet so many of those people who care, and how I get to watch the small, gentle miracles that they facilitate. If you feel anxiety at the thought of exploring new possibilities for your loved one, please don’t be afraid to reach out.