If you ask 8-year-old Sam and his 6-year-old brother Paul what their favorite thing to do together is, they’ll tell you it's a game where Sam pushes Paul and Sam makes an exploding noise.
But summer vacation and the days of endless goofing around have come to an end. A few days before heading back to school, Sam shared that he was most excited for recess, like a lot of kids. For Paul, he really enjoys music, according to their parents – from making it, to dancing to it, he’s got a love for music.
Sam is in third grade this school year, and Paul is repeating Kindergarten, due to the pandemic, at Maple East Elementary in the Williamsville School District. Their parents, Will and Emily Mondschein have been looking forward to the boys going back, and Emily says Paul lit up when they visited the school ahead of the first day.
“I could tell when he got in there he just, like walked straight ahead of me, confidently swinging his arms, heading straight to his classroom. Like was like a deer caught in the headlights when he saw his teacher, like 'oh my god, where did she go?' He was like enamored almost. Saw all the other staff, everyone was like, 'Paul! You're back! Hey!' it was like he had entered his community, you know?” Emily said.
But the past few weeks have been nerve-racking for the Mondschein family. For Paul, in-person school makes a huge difference in his learning, but it also comes with risks. Paul has Down syndrome and autism.
Studies have shown the people with down syndrome are more likely to become severely ill or die from COVID-19. The CDC lists Down syndrome under its list of conditions that have an increased risk of severe illness from COVID-19. In a March 2021 Yale Medicine Article, a clinical geneticist at Yale pointed out that the studies have mainly focused on adults with down syndrome, but that they do treat children with the condition as high risk.
“I worry that he won't survive this virus. He doesn't clear colds, he doesn't clear a flu, he doesn't clear a cough, as the typical human body does. It's stressful. It's hard on him, our kids with down syndrome are in the hospital all the time with, you know, immuno-compromised issues, and RSV," Emily said.
Emily shared what it was like to sit in school board meetings over the past few weeks after the New York State Department of Health initially did not provide guidance for schools and left masking decisions up to districts.
“So I was frightened and worried, [of] course, because the people shouting at these board meetings aren't thinking twice about my little guy who could literally be killed by their freedoms. So um, yeah, really discouraged, really scared, really angry about the state of affairs," Emily said.
Emily shared that it was hard for Paul to focus on a screen during virtual learning last year, but when students were allowed back at times for hybrid learning, they saw a huge difference, which emphasizes why, they say, he needs to be in the classroom this year.
“His stamina, his energy level was higher. He was more engaged, more focused, he noticed others around him so much more. It was almost like he was stronger. There was a strength to him when he was in the classroom," Emily said.
The Mondscheins have had to put in work to get their kids to wear masks for school. They know the challenges families face – Sam doesn’t always love wearing it but he knows why he has to.
SAM: "I keep wanting to take my mask off. But, I have to keep it on."
EMYLE: "And why do you have to keep it on?"
SAM: "Because mama keeps telling me to."
[His parents laughed]
WILL: "But you know why we're all wearing masks right now?"
SAM: "Yeah."
WILL: "Yeah, you do. What's going on in the world right now? "
SAM: "Coronavirus."
WILL: "That's right.”
For Paul, it has taken more of an adjustment. For some kids with disabilities, wearing a mask can be very difficult due to sensory concerns or for other reasons. So Emily and Will did what many parents of children with disabilities have had to do, which is find ways to adjust their child to wearing a mask.
“He loves the iPad. So whenever he gets it, he's just all iPad. So I would sneak up behind him and just put it on his face while he was watching the iPad. And, you know, he would, of course, back and forth, tear it off, put it on the floor, tear it off, but we just kept doing it. And eventually, he would just let it sit because he was so frustrated and just wanted to watch his show that he was watching," Emily said.
"I would also sing to him the song about you know, 'Paulie, can you wear a mask?' and I would just put it on his face, 'wear a mask?' and he would throw it at me, then I would say 'mommy can wear a mask' and I'll put it on my face. And my mom would say 'grandma can' and he would look at us like... we did this like a million times. To just a little ditty song that he likes, because he likes music," she said.
Emily said it took them probably 100 to 200 exposures like this to get Paul adjusted to wearing a mask, and while he can now wear one, it’s not a perfect fit on his face and he still relies on others to wear their masks to protect him.
"But now even when it's on, he chews on it, it's wet. His ears are lower placed, so there's gaps on the side. So even just for him to wear a mask, you know, for people who say, 'why don't you just let your child wear a mask? And that'll protect them and don't you know, tell me to have [to mask my child].' The way his mask is worn and the way I see a lot of people with Down syndrome at GiGi's Playhouse the way, the way their masks are worn are not, they're not effective. I mean, they're probably better than nothing, but they need some extra protection," Emily said.
That’s why Emily and Will were thankful for the county’s decision to mandate masks in schools.
“I mean, last year was rough on everybody. We're very, very excited for both of them to get back in school full time, very relieved that mask mandates are in place, because we probably, you know, we don't know what we would have done quite, you know, quite frankly," Will said.
Emily and Will are also both very active in the parent and disability communities locally, and run the local GiGi’s Playhouse, a non-profit that offers resources and programs to people with Down syndrome and their families. Emily has one thing she asks other parents to think about as the pandemic continues.
"I would ask that you would try and protect my son who I love dearly, and who means so much to me. And I would ask that you try and protect you know, the population that I serve at GiGi's Playhouse and in this community, the disability community, that I love dearly, would you try and do your best and protect them, as their lives are so valuable, as valuable as your child's," Emily said.
