Borrowing Hope
Today marks 5 months since my son was in school- in person- and the second day of the 2020-21 school year as a remote learner. A lot has changed in the world since March 13, 2020 and I know that I’m preaching to the autism choir when I say “change is hard”. It’s not just hard for my son, but for myself as well. As autism parents, we make plans for change. We have Plan A ready but Plan B, C, D and E are also available when things don’t go as expected. But 2020 has happened and for many of us Plan A didn’t work and Plans B, C, D and E have been scrapped as well.
At first things were going pretty well, then it stopped going well. Spring is always hard for us, but this year was almost more than we could handle; allergies, no school, no swimming, no therapy, no volunteer work, weird food brands and different generic medications because what we normally got wasn’t available. But he wasn’t the only one struggling. I had taken a leap of faith and started this nonprofit before the COVID-19 pandemic was even on the radar. Now 5 months later, I’m sitting at my desk, wondering just how am I supposed to get everything accomplished when all of the sudden I have to take on even more tasks than ever before- many now related to my son’s education and socialization.
Autism families were social distancing long before it was trendy and let’s face it, we didn’t necessarily want to. We had to and it’s hard. It’s hard to go to a restaurant and deal with the meltdown related to food, noise or waiting for a table. It’s hard to go on vacation and figure out the sensory modifications we need at the theme park, museum, or hotel. It’s hard just to do everyday things, like grocery shopping. It’s hard, but we muddle through and with each experience, we gain more tools we could try next time….because there’s always a next time. It’s hard, but it doesn’t stop us from trying anyway.
So now we have a pandemic and the whole world is getting a tiny glimpse of what care giving and living on the autism spectrum is like. Everyday activities are being modified because what was normal isn’t going to work anymore. Restaurants that didn’t offer take out before, suddenly are. Working from home is a real option for many jobs. Online therapy services and doctor’s appointments? Sure- no problem. My personal favorite- online grocery shopping is more readily available. What’s unfortunate is that the disability community has advocated for many of these things for years and only when all the typical people were inconvenienced, did the solution that seemed impossible, finally become a reality. And guess what? Just like for those with autism, not all of the modifications work for all of the people- go figure!
When I started writing this post, I was in a funk- and honestly, I still am. I’m anxious, but more than that, I’m angry! I don’t know about you, but when I got my son’s diagnosis, everything was so overwhelming. After a good cry, I got to work learning everything I could about autism. But eventually anger showed up. When it did, it motivated me to create new opportunities and be part of the solutions needed by those affected by autism in our community. Anger made me act. Recently I started listening to the Evolving Faith podcast and at the end of every episode they are asking their guests “Where are you borrowing hope from?” I’ve been asking myself that question for a while now and although it seems strange, for now I’m borrowing hope from my anger. My anger is making me rethink things as they are today and asking myself, How can I make positive change by causing some good, necessary trouble? Because when we’re complacent, nothing changes. I think this June 2018 tweet from John Lewis sums it up well.
“Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month, or a year, it is the struggle of a lifetime. Never, ever be afraid to make some noise and get in good trouble, necessary trouble."
So, where are you borrowing hope?