When Marius Rotaru’s son Nikolas was born in Brooklyn, N.Y., on a sunny day in April 2017, the first thing he noticed was how strong his baby son’s legs looked. His legs were no different from any average infant’s, but Marius would have convinced you that that was not the case. He was already looking forward to playing soccer with him on weekend afternoons.
Newborn Nikolas was a perfectly healthy baby, measuring 20 inches and weighing 5.7 pounds. He was quiet and soft, and usually wore a big smile on his face.
Within two years, Nikolas seemed to be developing normally. For his first toy, his parents bought him a baby-sized soccer ball. Running in the park, playing in sand, and kicking his toy ball with Marius were Nikolas’ favorite activities. He was a true outdoor kid.
Then, one sunny Sunday morning last January, something in Nikolas changed. He stopped saying the words he had learned; He stopped eating the food he enjoyed most. When he started walking solely on his tiptoes, Marius and his wife, Deneisa, grew worried. After a series of pediatrician visits, they discovered that Nikolas had autism.
Even though they had never heard of this developmental disorder before, the young couple quickly adapted to their new reality. A crash course in Autism helped them develop a new routine and daily schedule for the family, orientated completely around Nikolas. Soccer balls were replaced with learning cubes. They also hired a caregiver, Rona, who works with children with autism under the age of 6 years old. She worked with Nikolas every morning and practically became part of the family. Within a few months, Nikolas became comfortable and seemed cheerful in his new world.
Then came the pandemic.
The start of the lockdown felt like a strange dream to Nikolas. Nothing seemed familiar. All of the regular voices, smells, and little objects he was accustomed to were now gone. He felt lost. He felt trapped in darkness.
Marius quickly noticed his son was having trouble processing what was going on. Due to restrictions imposed by containing COVID-19, Rona was now absent, and the family could no longer visit outdoor spaces. Every little routine and repetitive action they formulated over the years for the sake of accommodating Nikolas’ special needs disappeared. “Now, we feel like we need to start from the scratch all by ourselves and I actually do not know how,” said Marius in a Skype interview.
“IT ROCKS THEIR WORLD”
Marius and Deneisa Rotaru are among the thousands of parents of kids with special needs worldwide who are struggling to figure out how to adapt to the pandemic now that their normal routines have been lost or disrupted. The problem is global. However, the solutions and remedies vary from country to country, culture to culture, and across the socio-economic divide.
“Neurotypical adults orient themselves through daily, weekly and monthly routines – and when our routines get broken and we’re staring at a future of uncertainty, of course we feel fear, anxiety, grief and despair,” said Rebecca Duvall Scott, the author of “Sensational Kids, Sensational Families: Hope for Sensory Processing Differences.”
“We have developed years of coping strategies, however,” she said. “Children have a hard time not having the same coping strategies as adults, but when you layer in special needs it is like a double whammy.”
When she first started working as a behavioral intervention specialist for children with autism in Louisville, Ky., Scott had no idea that one day she would have to rely on her professional expertise to raise her own children. When her son Jacob turned 3, he was diagnosed with sensory processing disorder (SPD), which falls under the pervasive developmental disorders umbrella known as autism. “All people with autism have sensory challenges,” Scott writes in her book, “but in my son’s case, he had the sensory component without the communication or socialization challenges that generally characterize autism.”
During the pandemic, Scott has watched Jacob struggle to orient himself to his family’s new routines, from what they can do or where they can go, to what food is available in their home, to how he learns using educational platforms online. Jacob, for the most part, enjoys staying at home. With the lockdown in place, it removes the stress he feels when interacting with people face-to-face. “That is why we are watching his amount of screen time closely and doing more things as a family – walks, games, movies, time outside, reading books,” said Scott. “I keep him working on the sometimes more uncomfortable social skills so when it is safe to congregate again, he hasn’t lost too much ground.”
DOES TELETHERAPY ACTUALLY WORK FOR CHILDREN WITH AUTISM?
Jessica Leichweisz, the CEO of Hope Education Services, a New Jersey-based consulting service that helps children with special needs acquire language skills and manage challenging behaviors, first fell in love with working with kids with special needs after teaching a young boy with autism in her bible class at her church.
“He was the cutest. He used to pray for McDonald's French fries and chicken nuggets and thank God for Pokémon,” Lechiweisz said. “There was something special about him.”
The way in which he saw the world led Leichweisz to devote her career to helping children with autism and, also, their parents. As challenging as the pandemic has been for households with individuals with special needs individuals, Leichweisz is encouraging parents, especially fathers, to see confinement as an opportunity to strengthen their relationship with their children by participating in activities that are new to them. “When a child is diagnosed with autism the father doesn't take an active role in participating in their education,” she said, noting that now is as a good time as any to do that.
To help fathers get more involved with their children’s upbringing, Leichweisz co-created an online course called “A Dad's Roadmap Tools For The Autism Journey.” She has been producing videos and posting them to the platform every day since then.
COULD THESE SAME METHODS WORK IN THE EAST, AS WELL?
Using teletherapy, Leichweisz has increasingly been working with more children from different parts of the world, from Saudi Arabia to Malaysia. In developing regions of the world, like Pakistan, the challenges revolve around not only the children's capacity to embrace the digital space but also with access to the internet itself. According to a 2019 estimate by the International Telecommunication Union, the United Nations’ specialized agency for information and communication technologies, Pakistan was listed among the countries where 75% of the population do not have access to the internet.
Sobia Qamar, a speech and language pathologist, is also the principal of Chambeli Institute, a small school for children with special needs in Rawalpindi city. Among the student body are children on the autism spectrum. According to Qamar, laptops and smartphones are luxuries that few families can afford.
Qamar is also skeptical about the efficacy of teletherapy. “For something like speech therapy the child needs to look at me and my body language, until there is a situational understanding that the child is not going to give me a response,” she said.
For Qamar, the key to interacting with children with special needs is gaining their attention, which can only effectively happen during a clinically structured session. Since children with autism associate certain places with certain activities, and because they associate professional settings with therapy, they have difficulty adjusting to teletherapy in, say, their living rooms.. That said, Qamar has let parents decide whether their children should have teletherapy or not.
More than a thousand mile away from Islamabad, in the major port city of Karachi, Dr. Ayesha S. Jamal, a psychotherapist and the chief care officer at the Center of Inclusive Care, holds a less pessimistic opinion about teletherapy. She said that, since teletherapy is still in an exploratory phase, people should not jump to conclusions about its efficacy. While she recognizes the challenges associated with teletherapy, and admits it wasn't an easy shift for her and her subordinates to move their practice to a digital space, it’s the only option available during lockdown. Plus, therapists are getting a window into the lives of children with autism, which also helps them in their work.
“The idea about therapy has always been that it’s for a certain limited time period, and that the skills learned in therapy need to be generalized for the real world” said Dr. Jamal.
For example, an occupational therapist helps children with autism learn fine motor skills, such as turning door knobs.. But when children return home, they often don’t get ample opportunities to practice that skill because their families do it for them without realizing they are depriving them of repetition time.
“By [virtually] visiting their homes we were able to get an insight into what level of application was taking place inside their homes,” she said.
This has helped them better communicate with parents, and it has in turn made the parents more proactive about their children’s development. They see now the connection between therapy and practice in daily life, whereas that wasn’t as salient before the pandemic.
As in the West, the lockdown has given families in the East an opportunity to come together and allowed fathers to pay more attention to their children. However, many differences between the two cultural hemispheres for children with autism and their parents are evident.
The lack of public discourse around special needs in Pakistan is one of the reasons why parents of children with special needs do not openly seek help. It’s not particularly easy for the parents who do seek help, either, but the clinic can be a haven for them from societal pressures and stigmas related to treating neurodivergent conditions. Also, once they leave their child in the care of experts, parents are afforded a few precious hours to themselves, allowing them to recharge. But the pandemic has stripped them of this meager luxury.
ONE DAY AT A TIME
One thing is for sure: Unusual time requires unusual efforts, especially to the parents of kids with special needs. The path ahead might look blurrier than ever, but these determined families keep spreading hope and seeking new custom solutions.
“Keep taking it one day at a time, and look for progress, not perfection,” said Rebecca Duvall Scott. “Things will eventually get back to a sense of normalcy, so we just have to maintain until services and schools open back up and we can get back to life.”