The pandemic has added a level of complexity to the lives of families of people with disabilities. For us, it means that more than ever we live in a constant “flight or fight” state.
Welcome to my definition of the term “new normal” circa Fall 2021:
- Two unvaccinated children under the age of 12.
- Significant COVID-19 Delta variant community spread in the region.
- A family with two children on the autism spectrum.
- One child who’s intellectually disabled and nonverbal, with comorbidities that could potentially increase her chances of serious complications.
- The start of a new school year in a region where there’s no mandatory indoor mask mandate.
- Zero pediatric ICU beds available in the area.
Yes, I know it’s a lot. But, at this point, a lot is my default setting. And this is just the beginning.
In 2020, when we started facing surges in transmission rates for COVID-19, some states immediately started planning for triage protocols.
This meant medical teams had to make some pretty difficult decisions about who received attention. This was mostly based on personnel, equipment, or room shortages.
But what these triage protocols revealed, in some cases, is that the rights of people with disabilities weren’t always taken into consideration.
As U.S. hospitals strategized on how to ration care, disturbing reports came to light on how these triage protocols were created and implemented.
For example, the Washington State Department of Health wrote in their recommendations that in circumstances where resources are scarce, medical personnel should take into account a patient’s “loss of reserves in energy, physical ability, cognition, and general health.”
Advocacy groups, such as Disability Rights Washington, spoke up about how this method had the potential to leave people who are older or people with disabilities without adequate care.
At the end of 2020, an NPR article wrote about how an Oregon caregiver of a man with disabilities was told that testing him for COVID-19 after presenting symptoms would be a waste of personal protective equipment.
The article also covered instances where medical reports about people with disabilities classified them as having a low quality of life. This meant they weren’t given the same level of care as their counterparts without disabilities.
What it means to us
Part of my job as a mom of a child who needs significant medical supports is to do my best to see around the corner when it comes to her care.
I’m aware that being reactive, instead of proactive, has the power of negatively affecting my daughter’s future outcomes.
The thought of my daughter needing healthcare when there’s a run on resources is persistently on my mind in the current climate.
While family members, teachers, and therapists are familiar with how she communicates, my daughter’s still unable to advocate for herself.
Conventional channels like verbal speech or extensive sign language aren’t part of her tools at the moment.
In pre-pandemic times, my husband and I stayed vigilant to ensure that our kids get the kind of healthcare and education they need.
Given our children’s various needs, our minds are already in a constant “fight or flight” response.
The past year has brought forth a balancing act in our home.
We introduced in-home therapies for a while. Then, we had to shift back to a therapy regimen in the clinic.
All of this while teaching the children how to wear their masks in order to reduce the chances of transmission of the coronavirus.
When your family represents multiple marginalized communities, you’re very aware of disparate health outcomes.
We sleep with one eye open knowing that nobody else’s keeping watch for us. The gravity of this realization can weigh heavily some days.
Yet, I still consider us one of the lucky ones.
We’re privileged enough to still be employed. We have the kind of health insurance that allows our children to continue the therapies they need, despite long stints of not being physically in school.
Despite what we have, we know that when it comes to many facets of life, including healthcare, staying vigilant is key to my children’s future. Other people may not have to fully contemplate these aspects.
When you can’t speak or sign, it can be difficult to communicate if you’re in pain. So, every passing day counts when you’re not well.
In the era of this Delta variant, we observe my daughter more than usual. We pray that we don’t miss a nonverbal cue that she isn’t feeling her best.
I think about my daughter’s challenges and the frustration she sometimes exerts when she can’t adequately communicate her wants and needs. I’ve broken down more often than I’d like to admit.
I told an aunt one day about what I was going through. I knew that she’d be able to relate on some level because she has a son with a traumatic brain injury.
My aunt watched me break down into tears again as I recounted my daughter’s birth story. She was born not breathing upon arrival, which may have contributed to her intellectual disability.
She actively listened to every morsel of my narrative as I spoke in graphic details about the complications I experienced as a result of giving birth.
Then, my aunt simply took my hand and acknowledged that I had undergone trauma, but it was time to take my life back.
It was time to reframe my mothering experiences. She told me that I should instead behave as though I went to the store and I bought it.
I needed to hold my head up high, realize that my husband and I would give her an amazing life and just own it. All of it. The challenges, the triumphs, the very humanity of all of it.
I took it to heart then and I relate to her advice now as I live through a very challenging chapter in my mothering journey in the present.
Nobody knows what the future holds.
My family has taken precautions and made lifestyle changes that can be described as more conservative than most. This is with the whole purpose of protecting our most vulnerable family member.
This is what we’ve learned this season and now offer to you to consider:
Own all of your feelings and embrace how you feel in each season.
I’ve learned how not to sweep anything under the rug. I have learned to embrace how I’m feeling in the moment in a way that has resulted in increased self-awareness.
Because of the life we live, we can use our story in various forms of advocacy.
Being an advocate helps me to think about my own personal challenges less and focus on ways upon which I can aid in the growth of others.
When given the opportunity, I lend my voice in a way that can help others better understand my family’s journey, whether it be through my nonprofit work, in the workplace, or elsewhere in my community.
Keeping the faith
My husband and I believe that children are assignments from God. So, while we’re teaching and raising them, they’re definitely teaching us about life as well.
Hope is a choice
Don’t wallow in sorrow continually, but don’t ignore your pain, either.
It’s more than OK to lead while you bleed sometimes.