Shifting From Resolutions to Focusing On Reflections.
Yes, it's January 2022. I keep seeing all sorts of wonderful hints, tips and tricks about ways I can lose weight, get healthier, save more money for my retirement, make my house more organized, cleaner, you name it. Setting goals for the new year usually seems like a good idea, but then reality sets in. That is just not happening here. Instead, I have been doing a lot of thinking and reflecting. Sometimes that is at 2AM, so bear with me.
People keep asking me, “how are you doing?” and I am tired of putting on a smile and saying, “Fine.” Or, “Things are good.” They aren’t. And I think we all need to be honest about that. We are almost two years into this pandemic and it dawned on me that some of the same feelings I am having, feelings of exhaustion and frustration, isolation and fear, are similar to those I had when we first learned Harry had autism.
We saw signs that things weren’t quite right, just like when I heard news that there was this virus in China. But the thought that it could happen to our family, when we had all these hopes and dreams and had “done all the right things” seemed hard to fathom. And yet Harry did get diagnosed. We went through many of the stages of grief, not necessarily denial, but anger, bargaining, depression, and finally acceptance. Oh yes. But we didn't get through those stages in a day, or a week or even a year. Each day presented new challenges, new things to inform us about the real barriers Harry lived with. But there was also new information and new communities to lean on.
We had to learn how to navigate this new world we had not wanted but was now ours to live in each day. I remember thinking that some family and friends just didn’t get it. They didn’t know that often success or failure was moment to moment, one guessing game after another. But also that each day we built on the success of the day before. We kept educating ourselves and looking for what resonated for Harry. That took years. And a lot of hard work.
As I said, in a very bizarre way, that is how I have felt these past two years as we wander through this pandemic. Maybe others will now understand how different life can be for families who have loved ones with disabilities. That feeling of loss and fatigue, of isolation. All of us are now living in a different world. We are surviving. We didn’t ask for this, we didn’t want it, but here we are. Though I often long for what life was like “before”, I also know that this experience, like when Harry was identified, has forced me to reflect on my values. What is important. Not what I wanted, but what do I need? What are the things that we, as a family, will need to do to keep each other safe from this virus, but also keep us true to our core values, find those moments of joy when we can’t do the things that once were a part of everyday life?
So if you are feeling lost, isolated, and just “done,” I get it. For the families we support, adding this pandemic to the load they already carry can feel beyond overwhelming.
I have had conversations with families about things like, "what does online safety look like for someone who is neurodivergent?" "My son wants to start dating. How does he do that as a young adult with autism AND during a pandemic?" Or, "We just started getting out in the community without a tantrum and now my child is afraid to go anywhere."
Many of our families struggle knowing how far to go in protecting our loved ones, but also knowing that to teach them to be independent means working through the ugly things. The times when people are mean, when even with the best of planning, things didn’t turn out the way we hoped. I have wiped away tears from scrapes and falls but also from heartbreak and loss of trust. Those tears go deeper. But they also help build character. Helping someone understand why people make the choices they do is still one of the hardest things. To know that empathy and compassion are the right thing but still being so angry that someone could do something that would hurt the person we love. Or make choices that we may see as selfish and not think of how that choice affects all of us?
And that again is sort of like how each day has been since March of 2020. First we isolate and lock down. Then we open up and have hope but learn that it’s not over, there is a new strain. Then we have this vaccine but not everyone trusts it. Yet it provided hope that life could return to “normal” again. And then there was another strain. It is all those stages of grief all over again. And this time, heck yeah, there was denial; this can’t still be happening, can it? But here we are, facing record numbers of cases and understanding this is impacting our collective mental health. Our kids are growing up in a world none of us have ever experienced. How do we face this challenge when we still feel so isolated and lost?
Yeah, those are feelings I have had before.
So what did help? And what can we do?
How about asking hard questions and having honest conversations about coping and choices and mental health? That seems like something we all need to do. We need to be able to talk to each other without anger or judgement, but do our best to understand the “why” behind choices. We are going to need to find a way to come together to support each other, and know that we are never going to make everyone happy. Somehow compromise has become an ugly word or concept. It doesn’t have to be that. There is no perfect solution out there but there are better ones. As long as we realize that we need to do this together, with our family, friends, neighbors, and also with people we might disagree with. Only then can we get back to what was once known as civil discourse.
Isn’t that what we all need to do now? To look at one another and say, “Hey, what do you need to get through this? How can I help?”
For our family, just having the time off between Christmas and New Years provided the down time that made a huge difference. We just needed to do nothing, a break. We ate, watched movies, slept late, and putzed around the house. It was wonderful.
So, how are you doing? Please be honest.
How have you changed in the past two years? What do you miss? What have you learned? And what do you need?
Now is a wonderful time to reflect. We don't need resolutions. We simply need to think.
Think deeply about how to support yourself, your loved ones, and the ones you may not see eye-to-eye with.
Think about what you want “tomorrow” to look like. How do you want to feel? How do you want to make others feel? How can you help them?
At IOB, we're having similar conversations and asking these very questions.
How can we help YOU?
Sending a simple reminder that we're here. With open ears, open eyes, and open hearts.
