For a little while, Tristin West felt like we were all in this together.
When Utah went into lockdown in March as part of Gov. Gary Herbert’s “Stay Safe, Stay Home” plan to prevent the rampant spread of COVID-19, members of the West family didn’t feel inconvenienced. Truthfully, they hardly felt any changes at all. Ever since the birth of their son Jayson, who has a rare genetic mutation, they’ve become quarantine experts. They were already deep into self-imposed isolation, one they’ve undergone every flu season, roughly October through May, for the past eight years, when Herbert gave his directive.
For a time, in fact, life actually got a bit better for the South Jordan family. With more people cognizant of and actively working against the spread of germs, the Wests felt a sense of kinship with their neighbors. Finally, those around them had a sense of some of the extreme measures they have to take to protect Jayson, who is one of 23 people in the world diagnosed with MN1 C-Terminal Truncation syndrome. It has rendered him nonverbal, intellectually delayed and dependent on oxygen. He is also hospitalized frequently and is extremely susceptible to illness.
Now, however, as restrictions loosen and people return to their old habits even as infection rates reach all-time highs, the Wests and others with loved ones with special needs — especially those who are immunocompromised — aren’t feeling a sense of relief. They aren’t feeling that camaraderie. Rather, they feel terror, exhaustion and more isolated than ever.
“I don’t think people realize what a privilege it is to be healthy,” Tristin West said. “Right now, people are faced with the choice: Should I be cautious to protect others or my family or should I return to normal life? When should I return to normal life? And for us, the family and friends of the medically fragile, it’s not a choice for us. For us, it’s still a matter of life or death, and we have no choice but to protect our medically fragile child as long as this thing lasts. We have no choice.
“The average person can pick and choose what’s worth the risk in their minds. There’s nothing that’s worth the life of your child.”
More than a virus
COVID-19 has elevated everyone’s stress. The disruption of daily routines; the consternation at being unable to find hand sanitizer, toilet paper, basic cleaning supplies and even flour and the concern about being able to afford them; the fear that the virus would infect a loved one and, perhaps worse, the guilt over the possibility of being the one who brought it home. It can be exhausting, and the toll those concerns have taken on the general population has been well documented.
Parents of children with special needs, meanwhile, experience stress levels at two to three times that of other parents. And that was even before the pandemic. Now it’s off the charts.
“Sleep is falling through the cracks, and any self-care,” West said. “During this situation, self-care is out the window.”
It’s the loneliness, though, that West said weighs on her family the most.
The irony in that is that children with special needs are everywhere. Nationally, about 1 in 5 children ages 12-17 have special health care needs, according to the Department of Health and Human Services. A 2010 state census showed more than 60,000 Utah children, or about 1 in 8, have been designated as special needs. Still, by prioritizing their children’s health, families are inherently picking a life of seclusion. And the isolation is real, according to Joey Hanna, the executive director of the Utah Parent Center, a resource hub for families of children with special needs.
Hanna said the center’s workshops, which are now held online, have seen a roughly 500% jump in attendance since the pandemic hit. One reason is that the online courses reduce some of the logistical obstacles to attending. Another is that when they’re the only ones at home, parents are more likely to have to confront their child’s outbursts face to face and be more apt to look for solutions. Mostly, though, the workshops have given parents of children with special needs a place to connect with others.
“We get tons of group messages: ‘Thanks so much for doing this.’ ‘It’s so great to see others’ faces,‘” Hanna said. “It actually has been surprisingly therapeutic listening to each other and seeing each other’s faces. It has been surprisingly effective.”
It’s not just that these families can’t leave the house or the neighborhood. Many have had to cut off most, if not all, outside help. That includes the interactions and specialized services a child would typically get at school as part of an individualized education program, or IEP. It also includes house calls by physical and occupational therapists, nurses, nannies and caretakers.
Dodging a bullet
The Hansen family of Eagle Mountain has long relied on a rotation of nurse assistants to help with 20-year-old Jacob, who requires 24-hour care for complications from cystic fibrosis and cerebral palsy. That entails fitting him with a vest that shakes him to keep his lungs clear of the mucus that collects overnight. It encompasses his every meal, bath and itch that needs scratching.
The Hansens pulled back on that help when the coronavirus popped up in Washington state in late February. Jacob and illnesses “don’t cooperate well,” as he likes to say. Plus, his mother, Jodi, worried that, because COVID-19 patients aren’t allowed visitors, his social anxiety would cause him to “freak out” and he would have to be sedated if hospitalized.
A few weeks after the virus was first found in Utah, though, the threat became more tangible: The Hansens learned someone had tested positive at the physical therapy practice where one of Jacob’s helpers’ father worked. Immediately, they closed their home to all outsiders, including extended family members who live nearby.
After several stressful days, the aid tested negative for the virus. Still, two degrees of separation hit too close to home.
“I remember actually telling my brother, it was like I went down to tie my shoes and there was a sniper bullet right where my head would have been,” Jacob said. “I narrowly dodged the bullet.”
On the heels of that relief came more responsibility, however. Suddenly, Jodi Hansen and her husband, Mark, both of whom work full time, and their 22-year-old son, Brendon, who has a high-functioning form of autism, were tasked with all of Jacob’s care. The silver lining is that Brendon, who worked outside the home as a caregiver before the pandemic, can care for his brother and get paid for it. As one of its coronavirus relief measures, Utah temporarily lifted a ban on guardians being paid to care for their wards. That measure ended June 30, however, and the Hansens aren’t sure what they’ll do now.
Jodi said she has an injured rotator cuff that makes it difficult to maneuver her 130-pound son. Plus she’s already struggling to find that work-life balance while laboring from home as the Utah Parent Center transition coordinator.
“It means our days are totally different. We’re needing to make sure his needs are met as well as get our full-time hours in,” she said. “If I go help him, I end up doing more hours for work because I’m not sure how many minutes I was with him, so I end up doing more work because I want to be fair to the company.”
Jodi also wants to be fair to her sons. Jacob isn’t the only person whose needs matter, and Brendon isn’t blind to the fading of opposition to social gatherings. But trying to appease both has come at an almost unbearable cost. When Brendon’s girlfriend flew in from Missouri for a visit last week, it set off a caustic chain reaction.
Typically an optimist, Jacob became obsessed with the virus and convinced himself he had contracted it. He began to have as many as 30 panic attacks a day and became suicidal. Within days, the family made the difficult decision to admit Jacob to the hospital for a two-week mental and physical cleanse.
“I originally thought the worst thing about the coronavirus would be getting it. That would be really hard on Jacob,” Jodi said. “But this has been really, really hard to deal with.”
Christine Evans, who lives in Tooele with her husband and four children, is also fighting for both sides in the battle to reopen. Her second-oldest daughter, Camryn, has cerebral palsy and epilepsy and is in in-home pediatric hospice. Her husband and oldest daughter, meanwhile, work outside the house and her teenage son has begun offseason football workouts at Tooele High School.
Life was simpler when Utah was in the red and orange risk phases for the coronavirus, Christine Evans said. Then everyone stayed home except her husband, whose job transporting heavy equipment for paving projects was deemed essential. Family rules required he sanitize, shower and change clothes upon his return home.
Now, though, Evans’ older daughter has returned to work at a dental office, and it has become futile to try to keep her son, who she said has attention deficit hyperactivity disorder, contained in the house. So she controls what she can: her own actions and those of Camryn and her 5-year-old daughter, Robyn, all of whom are homebound. And she worries.
“To me, it’s just so unknown. There are so many things that are so unknown about this virus that it just makes me nervous,” Evans said. “If I can do everything I can to keep her healthy, then if, God forbid, the virus does sneak into our house, I won’t blame myself. It’s a huge guilt thing. I know if I’m doing all this, there’s nothing else I can do.”
It’s working for now. Evans wonders, though, how long she can keep it up.
“It’s actually really daunting to know that there’s no light at the end of the tunnel, so to speak,” she said. “I don’t even know what school will look like. If we’re still in a yellow [phase], I don’t foresee sending Camryn back to school. I would have to think about sending Robyn. She doesn’t understand hand-washing.”
No end in sight
Parents of children with special needs have, by necessity, made a habit of looking on the bright side. When it comes to the coronavirus, they’re thankful for the closer bonds they’ve formed within their families. They’re ecstatic about the development of telehealth, which has saved them both backaches and anxiety by eliminating the need to load their kid’s wheelchair and possibly the entire family into a van for a doctor visit. They also are thrilled by the connections they’ve made within their communities, whether it be finding flour through NextDoor or experiencing empathy from neighbors who heretofore had no idea how it felt to be homebound.
Those revelations become less lustrous with time, however, and no one knows how long COVID-19 will be a threat.
West said her family members live for the summers, when they can finally take Jayson out to experience the world without as much fretting about him getting sick. They’ve canceled one trip to Disneyland and another to visit her parents this summer and won’t be going on their weekly farmers market excursions. The worst part is, if the virus threat remains until October, which it almost certainly will, she and her family won’t be able to come out of their strict quarantine until at least May. And if it lasts into fall 2021, she may be looking at 2½ years, at least, of not leaving the house.
West said she’s gotten to the point that she’s fantasizing about joining other moms in circling their wheelchair vans in a parking lot some evening to enjoy a cold beverage and some desperately needed, socially distanced socialization.
“It’s affecting us more now because of the realization that this pandemic is going to last awhile,” West said. “At best, we’ll be in isolation until May of next year. That’s not good for anyone’s mental health.”
But her own mental health is one of the many things that will take a back seat to the health of her child for as long as the pandemic lasts. As for when that will be, or even how she will know, is fuzzy.
“I don’t know when it will be. Maybe when there’s a vaccine. Maybe when they’re having cases but no deaths. I don’t know,” Evans said. “That’s the hard thing. I can’t say when we’ll be able to [go out again]. Maybe it’s a whole year. That’s scary. But I’ll do anything to keep my daughter safe.
“I might not be sane at the end of it, but I’ll do it.”