My full time job (as long as such a thing remains a concept) is spending my days working as an autism behavior interventionist. It’s the hardest and most rewarding job I’ve ever had. The end of the day today will be a heartbreaker, for sure, as I say goodbye to my client and put our relationship on pause indeterminately.
I will grieve the change in our day-to-day routine. To some degree, I already am.
We’re all grieving right now on a global scale. In a way we never have before. In a way that eclipses my previous touchstone for collective grief on a massive scale: Sept. 11, 2001.
Part of our training at work is trying to better understand what the parents of our clients experience emotionally. And a big part of that is understanding the grieving process.
(Quick reminder: the grieving cycle is generally considered to be denial, anger, depression, bargaining, and acceptance, as developed by Swiss psychiatrist Elisabeth Kübler-Ross.)
Typically, our view of this process is fairly orderly. A relationship ends or a loved one passes away or something else along those lines. The grieving cycle begins, the grieving cycle is experienced, and the grieving cycle ends. That’s not the case, though, for parents who have children dealing with disabilities.
Before I go further, I’ll share an essay we use in our trainings. Entitled Welcome to Holland, it’s a powerful piece that vividly explains what our clients’ parents experience. Read through it, and then I’ll write more about how this connects to our new COVID-19-dominated world.
Welcome to Holland by Emily Perl Kingsley (All rights reserved)
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
We find ourselves at a unique place in modern history. We are, collectively, in Holland. And all our planes landed at the airport at roughly the same time. And we’re experiencing the same realization that the plans we made aren’t lining up with reality.
In a way similar to (but also quite different from) the parents Welcome to Holland is about, we are discovering that the grief process stretches far beyond the major life events we typically reserve it for. We are also learning that it’s possible to have many plates of grief spinning at the same time, each one at a different stage in the process.
We are mourning school closures, empty grocery store shelves, the inability to celebrate birthdays with loved ones (my father’s birthday is today, and I won’t get to see him), the postponement of weddings, childbirths happening away from partners in isolation, the loss of jobs, hugs, handshakes, high fives, sitting with friends over dinner at our favorite restaurants, community gatherings, a night at the pub for St. Patty’s Day, vacations, and the list goes on and on.
In short, as a species, we are mourning life as we knew it, and it’s happening in countless ways.
I’m not writing this with any sort of solution in mind. Sorry. Rather, I’m writing it to make people aware if they’re not, that we experiencing several states of grief simultaneously over many different things. And self-isolation does not mean that you are cut off completely from others.
Call, FaceTime, or shout to someone. Find common threads of grief and compassion. Mourn together and heal together. Laugh, cry, and find the beauty in our collective Holland.
There is, after all, still beauty in this amazing world. Find the tulips and windmills and Rembrandts that surround us, and celebrate them.
We can and must make this New Holland our home.