“The pandemic is taking a brutal toll on children and youth with special needs and their families,” according to a new report by BC’s representative for children and youth.
Let’s admit it, it’s been a tough haul these last several months. In one corner, parents protest the opening of schools, in another they are protesting the closing of them. Goodbye hugs, hello masks. I still clearly remember my son’s last day of school before spring break last March. Truth be told, I pulled him a day early. Colwyn has Prader-Willi Syndrome (PWS) and Autism. He’s shy and curious and he licks things. Before the shut down last March, Colwyn wore gloves and a mask. In fact, he’s been wearing both at school since September of 2019 to help curb his licking.
All families have struggled to balance work, social life, school and safety. We try to understand why schools have different rules than other workplaces, and what activities to let our kids do while ensuring their safety, along with the trick of fostering emotional development with no peer contact.
It has been hard for all of us. But it’s especially hard for families with neurodiverse kids.
Here are six of the struggles special needs families are facing during the pandemic. These findings are based on my conversations with parents of kids with special needs including the autism spectrum, ADHD, Prader-Willi Syndrome, and a rare condition called 16p11.2 microdeletion. None of the kids have complex medical needs but are neurodiverse in how they process, learn and live. Families whose children also have complex medical needs are having to be that much more careful, and the stresses on them are that much higher.
1. Change is hard.
Neurodiversity often makes it so hard to adjust to sudden changes that kids move rapidly toward either shutting down or self-harm. With change comes anxiety and with anxiety comes a range of behaviours.
Last spring, at the start of the pandemic, we had to increase my son’s anxiety meds and give him extra time to process situations and changes. We also began writing down the plan for the day and doing countdowns, and number of sleeps until something expected would happen. Sometimes, those plans were changed because of Covid safety plans. Two hard losses were not being able to see family and friends, and not being able to visit playgrounds. To see the swings at the park, and the yellow tape around them, and to try to understand that the “big cold everyone has” was keeping him off them.
One mom I spoke with whose son has ADHD said her son had a “mini breakdown” during each lockdown. “He just slept all the time for the first week…said he was going to sleep until it was over.”
After days of yelling and talking and trying to verbally figure out the changes, he would suddenly switch to grudging acceptance, “like snapping your fingers.
“It’s like it took a week or two to go through the thought processes that I did in a few seconds—‘Oh shoot! That’s bad. I hate this, but we do this now.’”
2. Zoom (etc) isn’t engaging for neurodiverse kids and they lose their sense of independence.
I’d argue that many typical kids—and adults—find Zoom and other online platforms a bit foreign and strange. For special needs kids, it’s even worse. There is no interaction, and these kids live for hands-on learning.
Colwyn’s Education Assistant (EA) did a lot of home Zoom sessions with us, but for Colwyn to respond to her, I needed to be there supporting him. He did and still does piano on Zoom, which is fabulous, but I used to sit outside the classroom. Now I’m helping him play the notes, making sure he listens to the teacher and engages with her. I redirect, encourage, and keep him on track. Often he’s looking at me instead of at his teacher.
When they move from playing the piano to singing songs, I’m behind the iPad, dancing, mouthing the words, doing the actions—often with a stuffed Garfield on my head—it’s an aerobic workout.
I’m happy to help but I’m also aware that it’s another thing he needs me for. It’s not moving my son toward any sense of independence.
Colwyn’s friend, Trinity, has a rare genetic duplication called 16p11.2. Though verbal, she needs time to articulate her thoughts.
“By the time it’s Trinity turn to talk on a Zoom meet, she’s almost too frustrated and in tears,” says her mom Carol Geisler.
Colwyn will happily do music lessons on Zoom with me helping him, but classroom chats last spring were basically a no go.
The key to all of this, too, is that not all families have access to all that essential technology.
While it has been great to be able to talk to doctors on the phone or via medical online links, but a big concern for many families is “no one is putting eyes on their kids.” Colwyn needed blood work (as did I) and that was a scary venture into the hospital last April and again in November. He will need to start puberty and because of his PWS will need some help, so we’ve had complicated phone, online and hospital visit appointments all of which have resulted in needing to see his specialist when she’s in town so she can actually see him herself. All our medical professionals have been amazing, my son is utterly awesome, but it sure is imperfect and he has no life-threatening issues.
3. Loss of Community and engagement
Colwyn is mostly with his dad and me when he’s not in school. There is funding for camps and support for families with special needs, but Colwyn is a kid who requires one-to-one support, so he has both been turned away from group activities and we have elected to not send him to camps for the past 11 months.
Many kids his age can go to soccer practice or other sports and be safe. Colwyn and his peers can’t. Trinity was scheduled to attend Easter Seals Camp last summer, but it was cancelled.
“They delivered a box of resources…crafts and recipes and Trinity was looking for the recipes just recently saying, ‘I want to do SOMETHING.’” Geisler and her husband have elected to keep both kids home and homeschool because of Trinity has a history of respiratory illness. Specialists for speech, occupational therapy and physical therapy have moved online, too. Kids who need assessments are delayed even more than usual.
4. Homeschooling is HARD
Trinity’s family is having a really hard time navigating homeschooling and she is one of those kids with special needs who falls through the cracks.
“She’s always in the margins, her diagnosis is rare enough that most doctors don’t know what it is.” says her mom. Trinity displays autism traits, but not enough to meet the criteria. “So, we don’t get extra funding or support other than what is offered through her Individualized Education Plan (IEP) at school. Now she’s not in school, we’re on our own.”
If Geisler’s son attended school, the risk of him bringing something home led to her keeping both kids home.
“Elli is more vocal about how unhappy he is,” she says. “Trinity is more silent, but she spends a lot of time home alone, can’t go anywhere, and there isn’t a lot available, so she’s doing a lot of crafts.”
Though most families with neurodiverse kids have probably already shaped their lives around their kids’ needs, the loss of school and outside support adds an immense strain.
5. Inclusion is out the window.
Teens are programmed for socializing, so it makes that at 14 Trinity is really missing her friends. Colwyn is at school every day, but in so small a cohort, he no longer mixes with the typical kids in the school. Inclusion is out the window. Though I’m relieved that his cohort is only six kids plus EAs and a teacher, Colwyn remembers being a part of the larger school and misses those interactions and the classes that he once attended in academic subjects. Silas, a friend of Colwyn’s with PWS in Vancouver, is also in a small, special needs cohort in school.
“I think as a special needs parent you are constantly scanning the environment for threats like some robot in a movie, which can feel a bit crazy. Are we worried about his exposure in school? Yes. Special needs kids are not as aware of their bodies in space, and ahem, sometimes personal hygiene,” says Silas’ mom, Heather Beach. “I’m worried about his lack of interaction with anyone else in the school, his inability to find any new peers or feel a part of the school community.”
And, like Cowlyn’s school program, the lessons are simplified.
“He is not getting exposure to any subjects other than math, science, English, social studies and art. It’s basic. “There are a lot of life skills programs, which Silas is beyond,” she adds.
Having a special needs child doesn’t exempt you from all the other things life throws at you.
Our family is lucky, but I have Type 1 diabetes and an 81-year-old dad who we haven’t seen since school started in September.
Many families have other kids, so do those kids have to miss seeing friends to protect the entire family? Yes. Parents get sick. Carol, Trinity’s mom, had thyroid issues in the fall so had to take some leave from work. It enabled her to homeschool, but also put other stressors on the family.
Some families are parented by single moms or single dads who must work from home while being the primary or only caregiver to their neurodiverse child.
Our kids don’t work well on their own, for the most part, they need help in doing schoolwork, maybe toileting, eating (or limiting eating) and in engaging with what resources are available. Behaviours flair with the added stress and anxiety, some kids pull pictures off the walls, some kids skin pick to infection, some sleep all day. Teen suicide is on the rise as well.
On the positive side, Colwyn struggled early on with all of the changes, but the frustration led to more speech. He’s been a relatively nonverbal kid, but started saying names, and songs titles, and expanding his words from partial to more full pronunciations. Over the last 11 or so months, he has begun to really talk. Mostly about people he wants to see, or places, but he also read a book to a cousin over Zoom.
Last spring every time we were in the car he’d say something that to us sounded like “Uncle Phil” His cousin, when she was here, thought he was saying “Agatha” but we finally figured it out—Island View! And so began our frequent walks at Island View Beach.
Slowing down between March and June and then throughout the summer meant Colwyn could catch up mentally with things he’d been learning and working on his whole life and begin to talk!
For more information and to view the report, Left Out: Children and Youth with Special Needs in the Pandemic, visit rcybc.ca/wp-content/uploads/2020/12/CYSN_Report.pdf.