Edira Brown is on the autism spectrum disorder. She is one of many special needs children who thrive with routine, and whose routine, like everyone else’s, has been disrupted by the COVID-19 pandemic. And she doesn’t understand why. The disruption in her routine has resulted in Edira expressing her emotions in the only way she can – lashing out and hitting. It’s a turn in behavior, her mom, Akera Brown, noticed a month after the country shut down after the first case of COVID-19 was confirmed on March 15. Approximately five months on, and in the midst of a two-week lockdown, Brown said Edira’s lashing out has not improved, and her daughter’s energy level is “through the roof”.
“She’s on a routine and that’s been totally disrupted. She’s not getting dressed to go anywhere and she’s not allowed to leave the house, so she is acting out more in her behavior. If she’s frustrated, she will hit you,” said Brown.
The mom added that sometimes Edira, six, may give a frustrating scream before hitting, or she may not.
“At this point, you don’t know what you’re going to get, but as a parent, it’s very frustrating. Not only can you not control the tantrum, but you have to see your child experience this and you can’t help her.”
Before the lockdown, Brown said when her daughter would have a meltdown she would take her for a drive in the car in an effort to calm her down. But under the tighter restraints of a COVID-19 age, she said, it’s more frustrating for her daughter and her because there’s nothing she can do.
And like other special needs children, Edira is one of many who have not been able to have their needs met in the age of the pandemic.
She attends The Learning Centre (TLC), where she receives behavioral therapy and food therapy (in which therapists try to expand her food horizon as she does not eat much).
“We haven’t been able to keep up with therapies online, because they’re hands-on, but the teachers stay in communication, even on weekends, to try their best to make it as comfortable, but it’s so hands-on,” Brown said.
According to the six year old’s mother, Edira’s sleep pattern sucks and her daughter’s day consists of 22 hours, and no matter how tired she may be, she can’t leave Edira unattended. She’s also been unable to get her daughter to eat new foods now that she’s not able to attend therapy.
Dr. Michelle Major, clinical director of the Caribbean Center for Child Development, an evaluation and treatment center, and executive director of the Seahorse Institute, a day program center serving children with autism spectrum disorders and special needs, said the most important thing for children with special needs during this time is structure.
She explained that it’s important for parents to continue to establish a daily routine for their children, with consistent wake-up time, meal time, bed time and work time.
“Most of our kids benefit from having a visual schedule of daily tasks, creating pictures to let them know this is what we’re doing, and this is going to happen next. These are things that reduce anxiety,” Major said.
“Kids with special needs thrive in consistency and routine, so in many ways we have to have special considerations for what they are going through at this time, because for many of them it’s very difficult to understand cause and effect, what’s really happening. ‘Why is there a big change in my routine and transition?’”
Major said parents are feeling the parental burnout of having their children home, and having a special needs child at home also puts a lot more strain on them to support in a way that the child needs that they’re not getting from their regular daily intervention programs – whether that’s school or therapies that they get on a weekly basis that help them with their communication challenges and their behavioral challenges.
Challenges and regression
Major said the special needs children who would be most challenged during this period and in this environment, would be those who have more behavioral-based issues – children with neurodevelopmental disorders like autism, or with extreme behavioral disorders like attention deficit hyperactivity disorder (ADHD).
She indicated that they would be the ones struggling at home to regulate their emotions and their behaviors.
Major said children with special needs, when not receiving the interventions they need, will see a stall in their developmental process – and in many cases, regression will be seen.
“Once you have higher levels of emotional and anxiety issues going on as well, then you have regressive behaviors, sleep disturbances happening, destructions in their eating patterns. Some parents have even experienced regressive behavior like toileting issues coming back, wetting the bed, more clingy behavior, [children] sometimes being more withdrawn, maybe even aggressive behavior at home. So, these are things that possibly would be increasing at the home and providing parents with a lot more parental burnout, and they’re lacking the support.”
Because special needs children need constant reinforcement, Major said it’s for this reason Seahorse Institute is a year-round program.
“Even when we would close for two weeks, we would already see a regression in our children. Imagine the whole summer… now add the fact that many of our kids, due to COVID, have not been in an environment since March.”
Seahorse Institute had to identify virtual means to connect with their children, like everyone else.
While all therapies were not able to go to the online platform, Major said, they began speech and language therapies as well as providing ABA (applied behavioral analysis) therapy to children on the autism spectrum and children who have ADHD, emotional difficulties, anxiety and/or depression since July.
She said some children were able to engage virtually one-on-one without a parent or guardian, but many of their children, she said, need an adult with them in order to supplement the therapy or activities they are doing online. She said that means parents had to make themselves available for the treatment, or find someone that can be with their child during that time.
Major, a certified school psychologist, said it is important during this time that parents promote caregiver-child interaction, which she said means learning how to play with their children, having directed play and infusing as much as they can to stimulate their children during this time.
She said parents should learn how to praise their children, and create a reinforcement plan for them to focus on positive behaviors. She suggested parents allow their special needs children to earn points for stickers
Major said giving children sensory opportunities is also key.
“Even if they can’t go outside, think about how tactile, auditory, visual they can stimulate their kids, because they need that brain stimulation – and honestly, it’s focusing on the positive.”
Major said it’s critical that parents keep up their self-care so that they can support their children during this time.
She encouraged parents to reach out to teachers, former teachers or therapists about things that their child has mastered already that they can continue to reinforce at home so that the child does not experience regression.
“So, if the child has that repetition of tasks that they were able to do and parents can reinforce that at home, I greatly recommend that as well.”
Seahorse Institute was supposed to reopen to children on August 3 with safety protocols that include one-on-one, in-person ABA, but the new two-week lockdown went into effect on Tuesday, August 4 at 10 p.m.
Major is looking forward to getting back face-to-face interaction with their children.
“We’ll start as soon as this lockdown [is lifted] with the appropriate PPE (personal protective equipment) and safety. Children will be in a setting where it’s only one therapist, one child, one room so that we keep the safety measures in place,” she says.