Island Parent February/March 2021

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Special Needs Families & the Pandemic he pandemic is taking a brutal toll on children and “T 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. 10 Island Parent Magazine IslandParent.ca
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 IslandParent.ca February/March 2021 11
Page 1 and 2: FEB/MAR 2021 Vancouver Island’s P
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Page 25 and 26: JUNIOR GOLF CAMPS Spring Break Camp
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Island Parent February/March 2021

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