Our son Henry is not doing very well with the COVID lockdown. I won’t bother with the perfunctory caveats about all children suffering without school, and all families struggling in this climate of fear and isolation, because it’s only partially true. I think we all know by now that this has not been a collective experience and that families with money, health, real estate and live-in help are doing far better than those without.
If anything, the coronavirus pandemic has revealed the differences in our society more than our similarities. Extreme pressure, applied to a society, a diamond or an individual mind, eventually exposes all the hidden cracks.
Henry has severe special needs, and COVID has been an absolute nightmare for him and millions of other children like him. I’d add more colorful adjectives, but you get the point.
Henry, who turns 5 in September, doesn’t walk or talk. He can’t feed himself efficiently. He doesn’t sit up straight. Now that he’s getting bigger, he can barely move independently. When he was small, he could do a kind of army crawl, propelling himself with his elbows and pushing forward with one knee. Now he’s too heavy for that. He can only move a few inches and it’s hard, so he doesn’t like to do it, as much as we entice and encourage him. Henry still plays with and chews on baby toys. My wife Mary and I know all of this and we have shared his and our journey before, hoping that other families won’t feel alone because it is a very lonely road. It's God’s will. Bad luck. Take your pick. But we were coping better before COVID.
There are amazing therapies out there for kids who need extra help. Henry did equine therapy. He rode a white horse named Coco with two attendants on either side to make sure he wouldn’t slide off the saddle. The rocking movement is good to strengthen his core and the smell of the animal and paddock was a new sensation he visibly enjoyed. He did astronaut therapy in a soft-play room, spinning on a large Lazy Susan to let him feel a mild centrifugal force. He did music therapy and enjoyed touching the vibrating guitar strings. He did hydrotherapy in a warm pool with hoists attached to the deck. He went to a school, for a few hours a day, with an aide who helped him.
That’s all gone. He’s bored. He’s whiny. There is nothing more frustrating than hearing him upset and not being able to figure out what’s wrong and how to soothe him. The TV helps, but you can only put on cartoons for so many hours a day. He’s averaging around one.
Watch TODAY All Day: Get the best news, information and inspiration from TODAY, all day long.
Henry interacts with the world through sight, sound and touch. We cuddle him. We massage him. We bathe him. We talk to him, praise him and shower him with kisses. We rub his ears. His lobes are especially long and soft. We burn scented candles. I do spa baths, combing his wet hair and giving him a head massage with conditioner. Mary sings to him, sometimes a song she made up about Coco, and works with flash cards to teach him letters, numbers and colors all day long. She seems to have limitless energy. We have a new baby, Theo, nearly a year old and healthy, who climbs on Henry and is just now starting to give him little open-mouthed kisses. It all helps — we’d be beside ourselves if it didn’t work at all — but he’s still bored, and his condition seems to be getting worse.
Since Henry can’t play normally, school was the only place where he could interact with other children. The kids would come up and kiss him, tussle his hair and bring him toys. He didn’t always respond as they expected, but the excitement in his eyes told them he enjoyed and appreciated it. Special needs kids have the most expressive eyes. Luckily, we are still keeping up with his physical therapy, which is essential. Humans need to walk. Our bipedal evolution has made it a necessity. Children climb, jump, fall, cry and get up again for a reason. The standing and bumps and tumbles put weight on their bones and joints and make them stronger. Henry’s hips are like jelly. Since he doesn’t naturally bear weight on his legs and his muscles are weak, his hips aren’t forming as they should. They can dislocate easily. Doctors have warned us that unless things change Henry may need major hip surgery, a full redo, cutting and reshaping the bones so they fit better into the sockets. To postpone what may be an inevitability, we put him in a standing frame, an upright contraption we strap him to, so that his body weight pushes down onto his hips, knees and feet. It helps, we think, but only to a limited degree.
I say he’s lucky to be keeping up with his physical therapy, because we are paying about $100 an hour to have a private therapist — known to us and part of our bubble — come to our home. There are risks with having the therapist come, touching and moving Henry, but not doing the therapy has risks too. So we roll the dice, hoping not to hit seven and COVID out. The standing frame cost about $1,000. We probably have about $5,000 to $10,000 worth of equipment in our living room, some of it provided by local authorities where we live in London. That’s why I say we’re lucky. Other families can’t afford to turn their homes into therapy gyms, and not all community support is strong. Without physical therapy Henry’s body would deteriorate, collapsing under its increasing weight. It goes without saying you can’t do physical therapy online any more than at-home dentistry or a Zoom appendectomy.
Since COVID began — 10 years ago if I remember correctly — Mary and I are noticing a deterioration in Henry’s overall condition. His tremors, whole body shakes, are getting more pronounced. I don’t know if that’s because of the stress or just a progression of his condition, a genetic disorder known as MECP2 mutation, most commonly called RETT syndrome. His hand-mouthing is much more frequent. He has an uncontrollable urge to put his hands in his mouth all the way to his knuckle. When he’s agitated or upset, for reasons we don’t always understand, he does it every few seconds. We have braces for his arms that prevent him from doing it, but when they’re on he can’t do much with his hands at all, so there are tradeoffs. We sometimes put socks over his hands so he doesn’t chew them to the point where they bleed. For a child who interacts with the world through touch, this contactless society we’re living in has made his world smaller and less interesting.
Henry’s situation is not unique. Other families, doctors and advocates for children with disabilities say the disruption caused by COVID is reverberating throughout the entire special needs community. Doctors tell me children with autism are among the most affected. Their disorder seems almost custom-built to kick into high gear when everything they know suddenly turns upside down.
Kids with autism often have trouble dealing with change. They get easily overwhelmed by sounds and new experiences. They often regulate by self-stimulation or “stimming.” Sometimes, they lash out in frustration and tantrums. They can get violent and do self-harm, a strong sensory input.
To find out more about autism and COVID I reached out to Carolina Landa, a mother in Olympia, Washington, with an autistic son. The special needs community, a bit like foreign correspondents, is a tightly knit group. I didn’t know Carolina before. I was passed her number from a mutual contact. But within minutes, our impersonal Zoom chat opened a window into her life. Carolina is struggling now. So is 13-year-old Zach.
Zach has autism and is non-verbal. He’s also strong and well built. When he tries to hurt himself, he’s more than able to. Stopping school was a traumatic shock, a cruel trick for a kid who isn’t programmed to cope with change.
Carolina said when school shut like a tap, Zach started hitting himself and stimming for several hours a day, every day.
“It was from the moment he woke up, like at 7:30 in the morning, clear to what felt like noon time. Just this block of time where the episodes kept on going and going,” she said.
“He would hit his head or he would bang his body up against the wall. It gets really difficult to see that. Behavior is communication. He is trying to tell me something. But it is hard for me to understand what he's trying to tell me in that moment,” she said.
This continued, Carolina says, for around two months nonstop.
“It was super stressful. Every morning, all I could do is try make him feel calmer,” she said.
Carolina doesn’t have a lot of money. She works for an oversight agency for Washington State’s prisons, talking to inmates as a kind of liaison. When the inmates have issues, they call her and she tries to mitigate the situation before it escalates. I tried to picture her day. Her partner works outside the home until 4 p.m. I pictured Carolina struggling to calm Zach while also trying to work, dealing with inmates whose issues may also be pressing and stressful.
All of Zach’s therapies were at school. She can’t afford to hire private help. Carolina has invented her own therapy regime, timed to the minute to help keep Zach from slipping out of control. He needs structure, so she’s built one.
Related: According to a recent Syracuse University study, people with intellectual and developmental disabilities are four times more likely to contract COVID-19, and twice as likely to die from it. TODAY’s Craig Melvin spoke to families and caregivers of people with special needs about the challenges they face.
One of the first things she does in the morning is wrap Zach in a weighted blanket.
“I put a timer on, we do fifteen minutes,” she said. “I basically drape him in it like a little burrito, and then I just tuck it in on the sides. He rolls around and I put pressure on certain areas of his body,” she said.
Then, she does grass time, sand box time (her partner built one during lockdown), water time and foot bath time, along with puzzles and games Zach likes.
“I do feel like it is helping him. He just seems more focused,” Carolina said. “I do feel like it's working.”
Zoom learning isn’t an effective option for kids like Zach. It’s hard enough for most children. Many adults struggle with it. Try putting a child with severe autism in front of a computer screen with a teacher and 20 children in video boxes, some muted, others not, a chat bar scrolling down the side.
“It would probably feel like watching 20 different sets of fireworks and not being able to pay attention to any one of them,” said Dr. Jenny Radesky, a developmental behavioral pediatrician in Michigan.
She says for kids with autism, “the world feels overwhelming because you have all of this visual stimuli, auditory stimuli, just the feelings of things on your skin or your taste or the way your body is moving, it feels overwhelming to kids because their brain connections take in too much of all this information. They can't integrate it and filter in what's important and filter out what's irrelevant,” she said. “So, the world kind of feels like an extra loud, bright, overwhelming place. And that's one reason why kids develop such a fear of new things, the neophobia, because they don't want to have to suddenly learn a brand new environment and all these brand new faces. And that's why sameness feels so good, because the same food or the same house that looks or tastes exactly the same way every time is comforting.
“All of these big changes around COVID have been especially disruptive for kids with autism,” she said.
Henry doesn’t have autism, but his physical and developmental difficulties also make Zoom learning extremely challenging. Mary does a great deal of it and she’s getting better at customizing it for Henry, but he can’t hold his head in a level position for very long. He can’t sit in a chair, even an adapted one, for long either. Mary keeps him in her lap a lot. She feeds him on her lap too, more now than she used to. She can brace him better that way as his body gets longer and it's harder for him to manage. We carry Henry around our house and up and down the stairs. We move him a lot. If a toy is out of his reach, we have to move it to him or him to it. We are his legs. We move him so his world feels bigger now that COVID made it smaller.
Adrienne Stuart from Tacoma knows Henry’s struggle well. Her son Jack, about the same age as Henry, has the same genetic disorder.
“For kids with disabilities, schools are the epicenter of where they receive their services,” she said. “I just can't understate how much of a loss it is; I know for all kids, but especially for kids like Jack with disabilities.”
Adrienne is the director of public policy at Washington State’s Developmental Disabilities Council. She says in all the debate about how to reopen schools, special needs kids are getting little attention, even though school is their everything.
“I think they're an afterthought to be honest with you for many of our schools, not just here, but across the country,” she said.
All kids are missing out because of this damn pandemic. There, I added the caveat. There may be that one child who uses the lockdown to teach herself piano and write an opera, but generally kids are not getting what they need. They’re missing out on learning and opportunities for maturity. But there is a fundamental difference for kids with special needs. They’re not just missing out on new enriching experiences, they’re regressing. They’re going backwards.
Mainstream kids and adults hold information and skills for a long time, even if they don’t access or use them often. Special needs children like Henry, Jack, Zach and millions of others need constant repetition and training to keep what they’d worked so hard to get. When a mainstream child is potty trained, he may make mistakes, but generally he keeps doing it and gets better without thinking about it. If a child learns to speak, she usually doesn’t forget how to do it. Special needs children need practice to hold on to what they’ve learned. Without school and therapies, special needs kids are moving backwards. There is a danger COVID is going to set back a whole generation of special needs children. We see it with Henry. Dr. Radesky sees it in many of her patients.
“I hear lots of parents grieving the fact that their child was making progress this year and with this sudden removal of supports, they’re seeing regression. They're worried about the long-term effects of this year or more of disruptive therapies,” she said.
Adrienne worries Jack, who was just learning to use a computer to speak, will lose the skill and with it, his ability to communicate.
“Jack was an emerging communicator. He was just starting to figure out how to interact with other people in the world, primarily with other young people and his caregivers in his school environment. Now, he's not doing that,” she said.
Having a special needs child was difficult before COVID. Now it’s dangerous for the children and for the mental health of the parents. Without therapies, these kids are breaking. When policy makers and public officials prioritize what to open, where and when, I hope they keep special needs children in mind.
Editor's note: To learn more about MECP2 mutation, and the research around this genetic condition, go to Duncannri.org.