It’s Autism Awareness & Acceptance Month. For the month of April at The Daily Feels, we honor and advocate for awareness and acceptance of all the extraordinary individuals with Autism.
I had a completely different blog ready to roll for this month, then COVID-19 paid the world a visit, and my story changed quite a bit.
I have heard the term “the new normal” being thrown around a lot these days. And with every article I read or conversation I have where that term is used, I am struck by something. “The new normal” is and has always been, the unofficial slogan of the Autism community. In the world of Autism, “the new normal” doesn’t come from a global pandemic, it comes the day a family receives a diagnosis and then continues to evolve every day after that.
Autism parents are so accustomed to “the new normal”, and hence why I feel we were made for times like this: periods of intense stress, increased fear, grim isolation and the discomfort of the unknown. If you want someone by your side during times such as this, we are your people. We are truly fit to handle a pandemic such as the one we’re currently experiencing, for we live out most of our days in crisis-mode. That’s our “normal”. We have developed quite the expertise in preparing and managing uncertainty, quarantining, and dare I say, panic-buying (as you may have experienced if you follow me on Facebook/Instagram when I was in search of Perdue’s Gluten-Free frozen Chicken Nuggets).
As much as we’re familiar with challenging, unpredictable experiences; Autism Parents are currently looking up at a mountain that’s higher than most others. And whereas, we are doing all the things to make this time of uncertainty manageable, our kids are struggling. “Normal” to Autistics is a concrete schedule. “Normal” to Autistics is a sound routine. “Normal” to Autistics is solid consistency. This “new normal” has robbed our kids of everything that feels safe, secure and well, normal.
Parents of Autistics can handle a misstep in routine. We can handle the meltdowns that come from a switched-up schedule. We can even handle the disruption of inconsistency. But what most parents of Autistics CANNOT handle, is regression. That’s our greatest fear on a normal day, never mind at times like this.
It’s now been two and a half weeks since my son has had his regular therapies (PT/OT and ST). Whereas these specialists are doing the best they can with the current conditions, I am feeling a huge resource hole. Not that I’m not getting enough resources, but I feel I’m not doing enough with what I have. I am worried I am not providing my son with the help he needs and teaching him in the way he is accustomed to learning.
I am worried he is forgetting all the things that have gotten him thus far.
I am worried he is getting comfortable with not being challenged to do all the hard things.
I am worried he is losing muscle memory, and the little strength he does have, is weakening.
I am worried he will lose the independent skills his teachers/therapists require of him because he just knows Mom will do it.
I am worried he will grow into the ease of not going to school, and when he does have to return, his anxiety ramping up to a frightening new level.
I am worried about all this social distancing; that he will forget what it’s like to connect with peers and have to relearn how to build those relations.
I am worried I am not giving him all the attention he needs, because I work fulltime for an essential business, and I am expected to rise up, serve, inform and be available. Juggling his work and mine has been hellish, to say the least, and some days downright crippling.
I am worried. Yeah. But, I am not alone. I feel and hear, and read the same concerns from parents of Autistics nationwide
In the world of Autism, small wins are worthy of grand celebrations– because they are in fact not small at all. They’re huge, and beautiful and triumphant events that showcase growth. I started keeping a journal of the wins brought on by quarantining and social distancing…because it scares away all those worries…for at least a moment. These wins are the silver linings that provide sanity and security and understanding that this too shall pass and when it does, we will claim victory and realize that “normal” wasn’t actually serving us in the best of ways. And maybe, just maybe, the “new normal” makes us more aware, more kind, more compassionate and more accepting of all.
PS: For those of you with just good old-fashioned neuro-typical kids, all of this applies too, because lord knows weeks of lockdown with them isn’t easy either.
Janis Gaudelli is The Founder of The Daily Feels. She started this passion project to reveal the magic behind storytelling, and how truth-based narratives bring people together in the most heart-warming of ways. Fascinated by soul, depth, intellect, raw truths and rebellion with a cause. Often captivated by the awe of nature: star gazing, moon manifesting, sunset chasing, waves crashing, crickets singing. Fiercely curious about the inner-workings of the human psyche… she professionally studies human behavior for a living. Forever proud and grateful for being a mom to the force that fuels her life: her 8-year-old son, and greatest professor, Kellan.