If ever there were a human being who understands the needs of the special-needs community, it’s Lyndhurst’s Deborah C. Wertalik. After all, her grandson, Tyler Banuls, now a super senior at Lyndhurst High School (we’ve known Tyler since he was a wee chap) is autistic — and Wertalik, many years ago, became the voice of the special-needs community when she saw there weren’t enough resources around for them.
More than 15 years ago, she started “Putting the Pieces Together,” a support group for parents of autistic children. And, she started the “Special Angels” program, which gave the special-needs community a place to go for athletics, activities, dancing and so much more.
When Tyler was little, being at home was common, as it is for many who are autistic. But now, after years of hard work from Wertalik, Tyler’s mom, Tara, his sister, Bella, others and a score of teachers at Lyndhurst High School, Tyler is now known as “The Mayor of Lyndhurst High School.”
So much has changed — almost all for the better — since Wertalik packed up her family, moved from North Arlington to Lyndhurst … and after Tyler was enrolled at Lyndhurst HS.
“His teachers love him,” Wertalik says of her grandson, 17. “One of the secretaries, Miss Karen, tells me Tyler greets her every morning. He’s the only one who does that. One of his teachers says he pops in to say goodbye every day. If Tyler doesn’t come to say goodbye, he knows Tyler mustn’t have been in school that day. He never fails to do that. He says, ‘Thank you for coming to work today,’ too. No one says that but Tyler. No one.”
And while these simple greetings of welcome and salutation may seem simple, they’re not.
In fact, they’re vital — and could go away because of school closing down, at least in a physical sense — for Tyler and others who are considered special needs.
Now you’re asking, “Why?”
It’s complicated, but it’s a huge reason why Wertalik is concerned that COVID-19 may have a far-greater effect on Tyler and others, so much more than the virus itself.
You see, those who are special needs are creatures of habit. They love routines. They follow them religiously. And when those routines are interrupted, even ever so slightly, it could cause serious regression, something so bad that it could be like going back to step 1 for the kids (and adults) and their parents and caregivers.
“Tyler knows that he wakes up at 6:30, takes a shower, has breakfast, then gets on the bus at 7:15,” Wertalik says of Tyler’s morning routine. “Then he goes to period 1, period 2, he has lunch by himself, and at the end of the day, grandma is there to pick him up.”
That very routine ended, abruptly, on March 4, when Wertalik, in consultation with her family, pulled Tyler from school more than a week before it all transitioned to distance-learning protocols. She saw what was being said on the news about the virus, and decided it was best for Tyler to stay away from school before administrators did. And, since Tyler’s presence at school is no longer mandatory — he’s a senior-plus, waiting for his 21-and-over program to start — it was OK for him not to come to school.
Aside from the obvious, though, why make this early decision? The answer for Wertalik was simple — and likely was for others in the special-needs community.
Many have underlying health conditions. Tyler has respiratory issues, so Wertalik knew she couldn’t put Tyler in a situation where he could catch a virus, especially one where he might not be able to tell her he was feeling sick.
“Tyler could have perhaps told us he had it if he had it, but many who are non-verbal (Tyler is very much verbal) might not be able to say, ‘I’m having trouble breathing,’” Wertalik says. “It is a situation parents are dreading — what do we do if our child, or adult, comes down with this? It would be torture.”
Again, aside from the obvious, what else would make this so difficult?
Well, as most know by now, when someone is admitted to hospital with COVID-19 symptoms, visitors, parents, guardians, friends, cannot go to the hospital with their loved ones. They can’t come for a daily visit. They most certainly cannot spend the night.
So imagine, just a moment, for the parent of a special-needs child, the thought of having to drop the kid off at the hospital. Imagine having to leave the child there, in a strange place, where they know no one. Imagine all of this for a human being whose very existence is inspired by the people in their lives, their families, having to be left alone, unable to express symptoms, how they’re feeling, what they’re thinking?
This reality is what a special-needs person could face if they come down with the virus, and it’s something that causes angst, anxiety, for Wertalik and so many others.
“Parents are extremely worried,” Wertalik says. “It doesn’t matter whether they’re (special-needs person) young or old. The worry is our child can’t always find the answers to questions asked, say by a nurse or doctor. If the child has to go to the hospital alone, no one on the hospital staff is going to be trained to deal with them unless they possibly have a child of their own in the special-needs community. That’s a huge risk to have to take. It would be very hard for doctors or nurses to assess a non-verbal patient.”
And this is just the beginning.
We all take for granted the food we eat, quite often. But for many in the special-needs community, food is so much more than the simplicity of cooking it and putting it on a plate to consume.
Wertalik says special-needs kids are extremely selective about the food they eat — almost to the point where it causes glances of obsessive-compulsive behavior.
“Say a child loves Swanson chicken,” she says. “What happens if the supermarket runs out of Swanson chicken? For me, I don’t care. I’ll get a different brand and enjoy it. For many who are special-needs, they’re not going to eat it. They can literally taste the difference. A few times when he was younger, I tried to trick Tyler, but he knew. If it’s not his hot dog brand, he knows — and he won’t eat another brand. It’s a serious issue.”
It’s such a major issue that one parent Wertalik knows bought a new freezer and stocked up on brands of food her child loves — a month’s worth — to be sure eating time isn’t a problem. And so while this might seem a bit out of the ordinary, it’s not — it’s a real concern in this pandemic.
With all of these changes, Wertalik fears it will cause an immense regression — perhaps for Tyler, perhaps for many special-needs people.
“It’s so hard when they’re out of routine,” Wertalik says. “The thought of them losing their social skills — skills that in some cases took a lifetime to develop — is very frightening. I’m worried many may retreat to spending time, alone, in their rooms, playing games, whatever it is. When he was younger, Tyler wasn’t social at all. But he became very social through his time at LHS. I pray to God, every night, that there is no regression for Tyler or for anyone.
“But I am worried it could happen — and if it does, it’s back to square one.”
To meet the challenges of being at home, Special Angels, like many other groups, have turned to Zoom-based activities. Is there any doubt as to the importance of Zoom during this crisis?
When we spoke with Wertalik, her daughter, Tara, and granddaughter, Bella, now 16, were conducting bingo on Zoom with special-needs participants. Bella has conducted dance classes that she’d normally do in person. Earlier in the week, there was karaoke — one where Tyler was belting out tunes as if he were auditioning for “American Idol.”
And while the athletic programs are on hold — like flag football — it’s clear that as she’s done for a lifetime, Wertalik is still ensuring there are things for the kids to do — from home. And it’s inspiring.
Indeed, the challenges are there. The road ahead will not be easy. But when you have Deborah Wertalik in your corner, on your side, you just couldn’t ask for much more than that to get through, well, anything.
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Kevin A. Canessa Jr. is the editor of and broadcaster at The Observer, a place where he has served on and off since 2006. He is responsible for the editorial content of the newspaper and website, the production of the e-Newspaper, writing several stories per week (including the weekly editorial), conducting live broadcasts on Facebook Live, including a weekly recap of the news — and much more behind the scenes. Between 2006 and 2008, he introduced the newspaper to its first-ever blog — which included podcasts, audio and video. Originally from Jersey City, Kevin lived in Kearny until 2004, lived in Port St. Lucie. Florida, for four years until February 2016 and in March of that year, he moved back to West Hudson to return to The Observer full time. Click Here to send Kevin an email.