I am sick of pandemic living. I’m sick of wearing a mask. I have dreams about hugging people.
I had a dream of eating a resplendent meal, indoors, in a restaurant and woke crying. Then I reminded myself that at least I had food on our shelves, a roof over our heads, and we are free of the virus. That doesn’t change the fact that I am overwhelmed and terrified on a good day while trying to support my autistic children, manage my chronic health conditions and pain, and care for my mother at a distance who is locked down inside a nursing facility. The last time I hugged her was over a year ago.
There are no winners in the competition of suffering and there is no weakness in admitting to the loneliness that all of us feel. This past year has been a living nightmare for many and for mothers most certainly. I don’t need to explain that our country is decades behind most of the world in supporting us in the care of children and our families because I’m living it every moment. Just ask these three moms from the NY Times article, appropriately titled,“Three American Mothers, On The Brink.”
Yet the inequity faced by all mothers in 2020 has been the untenable situation faced by mothers of kids with special needs even before the pandemic. When you are faced with choosing between your children’s safety and the financial security of a job, is there a choice? One is not possible without the other yet women have been bearing this burden overwhelmingly in the last year and mothers of children with disabilities have known this inequity for generations.
Schools are shut because of the pandemic but the doors were shut to children like mine long before the age of COVID. My son was denied entry to several preschools until finally one agreed to have him only if we provided para support for him. I didn’t need a pandemic to tell me the choice I had to make. I had faced it with my daughter as well. It was cheaper for us to have me stay at home because the cost of full-time daycare and assistance for our kids if I didn’t was more than what I would make in social service work and freelance writing combined.
Even with respite care services offered to those on disability, it is a challenge to employ and retain anyone willing to work at pay just over minimum wage who has the necessary skills to perform the job even adequately. And not all children with disabilities, depending on the state they live in, are provided any care without the parents battling and advocating for a patchwork of services that rarely cover all the needs of a child. Private insurance is expected to cover the primary cost and only a fraction of families can afford a decent level of care without the supplemental support of the government. It falls on mothers to be the primary caregiver of their children all too many are having to do it without the support of a partner or extended family. This was true before the pandemic and will continue well beyond this era without drastic progress in how we view parental leave and support of families.
Here’s the reality of being a mom of autistic kids:
I haven’t slept more than five hours in over nine years.
I’m normally in bed by 8p.m. so I can finish the work I couldn’t get done at 8a.m. which means I fall asleep somewhere near midnight.
I haven’t seen fireworks in seven years because my kids refuse and I’m normally asleep.
I wear a special pair of orthopedic sandals in my house because I’m on my feet the majority of the day and I don’t trust stepping on the floor in my bare feet.
My tea is cold 90% of the time I drink it and there’s a good chance it’s been reheated at least twice.
My days start like most. I wake at 4 a.m. when my 9yo daughter needs help going back to sleep. I reassure her that she’s ok and wait while she finds her book. We go over her reminder list of things to help her sleep and she takes care of what she needs. It took us three years to get to this point. I used to be up every day at 2 a.m. so this is progress. The latest compromise is that she can read and watch nature documentaries on her tablet but not until 5 a.m.
Then I go back to bed after taking medication for my PoTS, normally not to sleep but to wait for my blood pressure to even out and my son who is up at 5 a.m. to come in at exactly 6 a.m. to greet me with the same words every day, “Good morning, mama.” I get a hug, maybe some cuddles and even a rare “I love you”, and then he dashes off to greet his sister. I’m not to ask him any questions or detain him because that’s not part of the “plan” and those are not my “options”.
The day of the week doesn’t alter the routine. We’re a neurodivergent household whose lives are mapped with rituals and coded with habits. I’m the odd one out who hates following a plan and craves spontaneity. I drive them crazy when I don’t follow their visual schedule. The truth as of late, I just can’t. I’m battling chronic pain that worsens with the stress and anxiety of living like this and the undertow of depression that is grasping at my heels as I try to tread water and I’m barely surfacing on the days of exhaustion.
The days are predictable in their unpredictability which reassures me and maddens them. The other day my son wanted to try and participate in online schooling but then changed his mind at the last second in a panic and stripped in protest on camera. At least it was an art class hosted by an autism advocacy group with a sense of humor. I joked that he was expressing himself with a performance piece.
Then there’s the days where we attempt to meet up outdoors for playdates after going through a subtle dance of negotiating pandemic precaution discussions not unlike singles navigating online dating and sexual politics. The underlying question of every exchange being, “Is it really worth the risk to hang out with you?”
A friend posted a game on social media the other day. It was an exercise in self-reflection and a way to ostensibly pass the time. A pursuit that feels like a luxury to some in this pandemic era of living with children unless it’s ways to entertain your children so they can pass the time so that you can then hide in a closet and eat their snacks. The game was to search your text messages for your response to, “How are you?”
The candid response I sent from my phone at the beginning of the pandemic was,
“This is the loneliest I’ve ever been with zero privacy.” The one that I didn’t send but thought to myself so often was, “How do I do this?” Even more to the point, “How do I do this anymore?”
Beyond those disclosures were the other laments and admissions. Those I never write even to my closest friends for fear that I would increase their own feelings of depression or anxiety during this time. The ones that other mothers with autistic children know all too well.
I’ve never been this afraid.
Will I be able to protect my kids from this virus?
My desk has never been this clean because I want to have everything in order in case I die.
Will my kids remember me if I did?
There is no “day off” for me or a backup because I’m not allowed to get sick.
I have to survive this because I can’t leave my kids.
Even while trying to write this, I was interrupted a total of fourteen times. My son tried to argue over the count by shouting out the wrong number when I would count aloud but his big sister corrected him. They’re as sick of pandemic living as much as I am and I try to remind myself of this. I hope that maybe they’ll have some happy memories from this time. I asked them about this the other day and they recited a list of things they’ve enjoyed from this past year that feels like a mirror image of mine:
Wearing a mask. (They don’t have to smile or make the right facial expression.)
Not having to go to appointments. (Therapy and doctor appointments.)
Not having to get out the door on time.
Getting us (mama and papa) all to themselves.
People keep their distance.
The world is quieter. (Except for the noise of construction and home repairs, ourselves included.)
They don’t feel strange for wanting to be at home.
I’m trying to embrace the absurd even more than my pre-pandemic life. My son just had his seventh birthday and circumstances taught better than I ever could how much friends are to be cherished more than material goods. We erected a bounce house in the dining room, bought him every toy he requested (within reason and a budget), arranged for surprise drop-in visitors to stand outside and say “happy birthday”, and video messages from those that couldn’t make it in-person. His favorite part of the day were his friends surprising him. I broke into tears when he hugged me and whispered, “My friends came. They didn’t forget me.”
Just to be remembered, to be seen, and understood is a basic need for all of us. Whether that’s from a hospital bed or from the debris strewn disaster of your living room as you try to balance on an invisible tightrope of homeschooling and staying employed. We all are hoping that we will be heard and our sacrifices during this time will be remembered and not in vain. Let’s hope that the powers that be make good on their promises and that all mothers find the support they need because we’ve done it on our own for far too long with our children suffering from the inequity we face. I hope it doesn’t take until their generation being in power for equality to become a given and not a goal.