How the Covid-19 lockdown is affecting children with special needs — and their parents
It’s almost past midnight. Finally, my five-year-old fell asleep after a gruelling meltdown of two hours.
My son is autistic. And he is a treasure. However, this pandemic is making it painfully clear just how much we rely on an army of people to help us care for him. They are wonderful people: Therapists, family members, and relatives who see engaging with him as joyful, meaningful work. And for the past few years, we have formed our lives around being able to depend on them.
My son is non-verbal. He has few words that he speaks inconsistently, and finds phonetics really challenging. His difficulty with expressive language makes him unable to tell us if he’s hungry or hurt, or what he wants to do. Despite his lack of verbal communication, he loves being around people — especially his maternal grandparents, aunt, and his therapy school teachers.
We usually try to give him a fulfilling social life. We bring him to social engagements hosted by understanding family and friends, and allow him to enjoy at his own pace. However, now with Dhaka being the centre of the pandemic and the vigorous lockdown, like everyone, we are having to follow social distancing as well.
Quarantining a child with autism is a different set of challenges. It is very difficult to isolate a child who is already somewhat isolated due to his autism without his support system. And more so, it is mentally draining for both the child and the parent tackling him. His therapy school was suddenly closed due to the gravity of the situation.
His education comprises of a complicated latticework of services which includes ABA therapy, speech therapy, occupational therapy, and group therapy. Going to his centre was an integral part of his routine, and now not being able to do so is affecting him greatly. His meltdowns have now become a frequent and consistent part of our daily routine.
As a parent, it is a constant struggle between my patience and perseverance to cope. Parenting is not an easy job, but it is an entirely different set of challenges during a pandemic, especially for families with special needs. In addition to taking care of our children, we still have to manage our homes and work — this is one big balancing act for us parents. Like me, I surmise most of the special needs parents are facing the same pressure.
With the sudden closures of schools and therapy centres, children with autism are a bit baffled. They are still preoccupied with their routines in their minds, but clearly wondering what is happening outside. They cannot internalize the temporary closure of schools, stores, malls, or restaurants.
Unsurprisingly, they cry, throw tantrums, scream, and spin. Parents become depressed too. So here are some key points for drawing up a schedule during the coronavirus quarantine with our autistic children: One of the positive outcomes of this pandemic is it has given me time to understand my child and his needs better. Being cooped up indoors is tough for children.
If a child is on the autism spectrum, it could prove to be even more complicated. For children with autism, structure and routine is the key. Disruption in routine is very difficult for children with ASD. We don’t know how long this situation will last for. If parents never had to prepare a routine, because their kids were at school, then they should definitely start building a structured life for their child and really focus with them.
Making a schedule that is quite similar to their daily routine is vital. The morning routine can be set the same. Then they can start studying or involve in therapy activities. Allowing a break is important to release their feelings and energy. More importantly, home-learning should be consistent, so they know they have the same schedule as they have at school.
Children with autism are not the same. Those with sleeping disorders can wake up slightly later than usual to get their much-needed sleep and help them recover from emotional disturbances. It is not necessary to push your children into the exact same schedule as normal times; parents should be flexible with regard to special conditions of the children.
It is important to give a clear idea about quarantine to children. Explanation is essential to make the children understand the rather drastic change of routines. Using pictures, videos or any other possible source to explain the concept of quarantine to your autistic children can be helpful.
Once they understand the concept, they will try to adjust their daily routine at home. Some outdoor activities can be replaced by fun indoor activities, such as watching movies, listening to music, painting, or others.
Although schools and therapy centres are closed, most of them are providing online learning. For autistic children, studying or working means being at school or therapy centres, whereas activities at home mean relaxing or playing.
Changing the concept of learning from school to home can be burdensome for them, so give them time to adapt to the home-learning concept. A video call with their teachers and therapists is one way to build an atmosphere of enjoyable home-learning. Autistic children usually do their activities with teachers as their companions.
They learn by looking at examples and working in groups. Therefore, parents should take the teachers’ role of accompanying and guiding them in the tasks. Of course, when the children can work independently, parents should stand back, for they are guides only when needed. Parents have to control their emotions while teaching their children.
Being patient is the key thing when handling home-learning for autistic children. Involving children in household chores is another encouraging practice. These activities can help them release their stress while in home-learning. Lastly, appreciate everything that your autistic children have done.
Even though their work is not perfect, give compliments for every single step they do. It is not easy to manage time efficiently with autistic children during the quarantine, because they can easily become bored at home. Find activities that can raise their enthusiasm, but most importantly, create a comfortable environment for them during these hard times.
And of course, do take some time off for your own recreation, because it is very important for parents to have stable mental health in this pandemic situation.
Farahnaz Zarrin is a contributor to the Dhaka Tribune.