Unacceptable Collateral Damage
Prior to COVID-19 lockdowns and restrictions our family was thriving. My husband and I were working in jobs we love and living with our family in a beautiful area, actively engaged in our church, schools, and community. I am a mother of three children, including a 12 year-old daughter that lives with intellectual disability and has always received special education support and therapies through the school district. Our daughter needed extra help and lived with a perpetually childlike view of the world, but she was happy, thriving, and growing in her own ways and on her own timeline. Still, her successful navigation of the world has always relied heavily on a very consistent routine and the dedicated support of her team of professionals.
At first when everything shut down for “two weeks to flatten the curve” we were managing to keep our heads above water, barely. My husband, a construction electrician, had his job site “temporarily” closed for what was supposed to be only a couple weeks. Then when it eventually reopened with a much smaller crew to allow for “social distancing” requirements, he was one of the workers laid off at that time. Between the two of us we were holding things together for our daughter as much as we could (and for our two other kids) but she was increasingly struggling without access to any professional support and we were struggling without any respite from her care.
During last summer our daughter had one of her regular appointments at the Neurodevelopmental Clinic at Seattle Children’s Hospital and the doctor emphasized that it was important for her school environment in the Fall to be as close to what she had been used to as possible. I managed to join the re-opening committee for our school district in an attempt to advocate for her and other children with similar challenges but the experience was frustrating as I was constantly told that the safety guidelines were “non-negotiable” so universal masking and distancing was absolutely required and all adults working with the life-skills kids would be wearing masks, visors, surgical gowns, and gloves at all times.
As school started back up in the Fall we were told that, because her disability made her unable to keep a mask on, our daughter would only be eligible for remote online learning for the entire 2020-2021 school year. Knowing how badly she struggled with that in the Spring, we decided to instead pull all three of our kids out of school and form a homeschool pod with two other families. We also combined our resources to hire a tutor who had worked with kids with special needs before and I felt like it was the best scenario we could create for her under the circumstances. Even so she was becoming increasingly anxious, regressing in basically every skill area, and having dramatic outbursts of anxiety and frustration at home. I began to also fear that her outbursts would move from resulting in only minor injuries to herself and me to something more serious.
Meanwhile, after eight months my husband was still out of work and not getting any closer to a job assignment from his union. So then, in order to get back to work to feed our family, he accepted a job assignment that required him to move to the other side of our state where there were more available work projects. Since then he has been able to come home for the weekend roughly once a month. In the six months he has been living separately from our family our daughter’s decline has been even more dramatic. The loss of access to her school, our church (it is still closed and only providing online services), and her second parent has completely devastated our daughter. Her mental health, academic skills, life skills, and social relationships are in the worst shape of her life.
My happy, thriving child who just happened to have some special needs is now a shell of her normal self. I am physically exhausted, I am bitten and bruised, and I am weary in heart and mind.
We had a follow-up appointment this Winter with the Neurodevelopmental doctor at Seattle Children’s and I have rarely seen anyone look so defeated in my life. When I asked him for advice or resources he basically shrugged his shoulders and told me that everything he thinks would be helpful to her remains shut down right now and that every single patient he sees is struggling dramatically and failing to receive appropriate support.
I requested a meeting with the head of special education for our school district to discuss plans for the 2021-2022 school year. I was told that they were open to allowing my daughter to attend school in-person next year, even though she can’t keep on a mask, but that she would have to be isolated from all other students and that the adults working with her would still be gowned, gloved, masked, and visored when working with her. Somehow I can’t imagine how that scenario of total isolation and disconnection could bring back the spark of life into my beautiful daughter’s eyes.
If I’m being honest, my patience with the “better safe than sorry” self-righteous mask-up/vax-up, lockdown crowd is non-existent. I’m over all of this completely. I’m ready for my child to be treated like a human being rather than a biohazard. I’m ready to get back to life.
Interestingly enough, we did all end up having COVID right at the start of 2021. My husband had a few days of feeling a bit under the weather. I had about two miserable weeks of flu-like symptoms. Our oldest and youngest children had 24 hours of feeling “a little tired” and having 99 degree fevers. Then our special girl, who was the only one I actually worried about due to a history of hospitalizations for pneumonia and a tendency to take illness harder than the rest of us, never showed a single symptom.
Our experience of being ill with COVID can’t even begin to compare to a fraction of the devastation we have experienced from the measures in place to fight COVID. I know that we are not alone.
— Kimberly Cancelosi
