My Child With Down Syndrome in the world of COVID-19
I inherited the love of gardening from my parents. They took care of plants as children like they had feelings; my mom would be happy when it rained because her plants were happy. When I started my own gardening, I understood why they had such characteristics of patience, love, and happiness. Being a gardener teaches you how to patiently wait for the seeds to sprout, careful watchfulness, the beauty of life, and trust in God. Being a parent of Eman, my daughter with Down Syndrome, this inheritance has helped a lot. No matter how many weeds grow around us, we have learned to thrive on our grounds — stay happy and content.
Parents with children diagnosed with any special needs are having a challenging time in COVID-19. Our kids have in-home and onsite therapies one-on-one and in a group, to keep their lives structured, teach them mind-body regulation, gain coping skills, and develop social skills. Parents are not part of the therapies 80 percent of the time. So, to an extent, we are clueless as to what minute details the therapists cover with our kids. Moreover, the kids have developed an attachment with their therapists. They sometimes spend more time with them than they do with us. I have feared these moments but never imagined that I would live them too.
Eman is in one of the groups categorized to be high risk in terms of chronic heart, lungs, and respiratory conditions. There would be many parents who can relate to me. Not only the therapy sessions are missing, but the regular scans, tests, and check-ups have been delayed too. And for Eman, we already missed two which for her chronic condition is not good and has a toll on its own.
Eman, being a down syndrome loves routine. Every kid with special needs functions better with a routine. We make sure she starts her academic home session on time. In the first week, it was not understandable for her why at home she is learning what she normally does in school. A lot of fighting — guys! At home she knows her routine has been set for 2 years as reading minutes with Mom, drawing time with her siblings, then it is play and a movie. She is in the Extended School Program even in summers, so as not to break her routine and that she does not forget what she has learned. I just hope that everything gets better before the day to day structure fades away.
I am not the one who gives up easily, but frustration is one thing that has come between us during the therapy sessions, I must conduct at-home therapy according to the instructions I receive from the school therapists. To see her struggle through these sessions and not understand what I am saying. Of course, she and her therapists have chemistry of understanding that I don’t have with her. She loves her school — starts crying while talking about her class teacher. She comes down every morning, pours her cereals, after breakfast, the first question she asks is, are we going to school today. I explain to her every day why she isn’t. Sometimes, we think that showing graphics and talking to them will be easy for them to understand. Maybe, they do but it is set routine that has caused a disturbance in their world, which they may or may not be ready to accept for some time.
As a special need’s family — we did not get a manual as to how to deal with uncounted situations for her like this or any for that matter. We must move with her pace and not another way around. I am thankful that she is the youngest and has her older siblings to look up to. They take care of her needs such as playing basketball, watching movies, sleeping with them, and doing homework with her. Although we cannot fill in the missing pieces from her day to day life, we take her for long drives and put her playlist on, so she can enjoy. We go for walks; she loves to feel the air, the smells, the sounds — part of her sensory processing.
Trust and patience have taught us to fight with every situation without whining about it. Watching her every second solving her own problems, absorbing those frustrating tears, smiling because I just looked at her; give meaning to these moments. It is hard, yes, but the grace is to live through it with strength and hope.
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