Since the outbreak of coronavirus, parents have been forced to change how they do things. Children not going to school and parents having to work from home, all happening abruptly, has left many parents struggling to cope with the adjustments. The change in environment and schedule can prove difficult especially during this period when everyone is expected to quarantine and maintain social distance.
When it comes to taking care of a child with special needs, it takes a different kind of energy and strength. There are endless demands and challenges parents raising these kids go through. As the world marks the Autism month this April, Sylvia Moraa Mochabo shares her story as a mother to an autistic child during the coronavirus lockdown.
“It has been tough, you can’t achieve much because he wants attention all the time. And he wants to go outside all the time. And he can’t understand why people are not allowed to go outside,” Sylvia narrates to Eve Digital.
Sylvia’s second born, Andrew Muia, 10, was diagnosed with Lennox Gastaut Syndrome, a condition on the broader autistic spectrum, when he was three years old. When Andrew failed to meet his development milestones, she took him for speech and occupational therapies. Andrew first spoke when he was five years old, and today, he can partially speak and even identify items.
Having a child with special needs during this quarantine period has its challenges and Sylvia says she has to keep an eye on her son all the time. She has a total lockdown for Andrew in the house. This is after his doctor (Andrew’s) recommended that a lockdown was the only way she would be able to control him during this time.
“Andy is very social child, he likes to greet everyone and talk to strangers, and with this virus, controlling him outside the house is very difficult. I only take him and his brothers for short drives for fresh air once in a while,” Sylvia further narrates adding that Andrew wakes up as early as nine in the morning in full games kit, ready to go outside and play every day.
Keeping up with Andrew’s schedule interferes with the whole house. Sylvia says she doesn’t have enough sleep as her third son also suffers from ADHD (Attention Deficit/ Hyperactivity Disorder) and he suffers from insomnia so she sleeps late as he keeps her up until very late into the night.
The greatest challenge Sylvia is having is the conversation about coronavirus with her kids. Andrew cannot process everything and there are things that don’t make sense to him. Like why he cannot go outside like he used to.
As for home schooling her children, Sylvia says it is impossible for her to teach them personally. As special needs children, they have shadow teachers who come home and teach them but with the current coronavirus isolation situation, the tutors cannot come to the house anymore.
“As a parent how do I do speech therapy? They also need their therapy. Therapy helps them realign their energy. It enables them to cope and channel the excess energy in their bodies because that is what causes hyperactivity,” she says.
Although parents are being advised to consider digital learning for their children, Sylvia admits that she is struggling to find content that has been considered for children with special needs. This is taking a great toll on her, and possibly other parents out there, who are trying to keep their children engaged and learning. To compensate for the lack of digital learning materials, Sylvia buys her children playing items that mimic actions while also teaching them from her actions.
“I also have a problem with accessing his medication too, I can’t take him with me to hospital, not to mention the fear of contracting coronavirus,” she adds.
Sylvia came up with the Andy Speaks foundation to raise awareness about neurodevelopmental disabilities and to seek policy changes to support and empower persons with neurodevelopmental disabilities. Throught the foundation, she also helps other caregivers and parents with special needs children access medicine especially now during the COVID-19 turbulance.
With the current quarantine situation, Sylvia has created various social support groups on social media where parents with special needs children can share their life stories, challenges and encourage one another during this period.
“Most of these parents are single mothers, and their children suffer from cerebral palsy, Down syndrome and some autism. You cannot tell them to depend on their families when they have already been stigmatized by their very families,” Sylvia adds as she highlights the challenges parents of children with needs endure.
(Photos: Sylvia Moraa)