Parenting a Special Needs Child During Quarantine, Between Challenge and Inspiration

It goes without saying that the past three months have been the weirdest our generation experienced. We all realised how we need each other and that living without human interaction is more difficult than we thought. Living one day at a time and not having any speculations for tomorrow is what everyone practiced during this past period. If you ask anyone now what will you do next week, his answer will be “we have to wait and see.”

But we all had different experiences with quarantine. Just as I read somewhere “we are all facing the same storm, but with different boats.” Yes, people needed to slow down and reflect on their lives, but to us, slowing down was not an easy option.

Let me talk to you about our experience with Tala and Celine during lockdown. There are a lot of happy moments and a lot of anxiety and fear.

Every parent knows that it’s a disaster for kids to be stuck at home all day with minimal social interaction and activity. To me, staying at home with Tala was not only a disaster, it was the scariest time of my life. Before the lockdown Tala went to school and had private sessions with her tutors. She went to therapies after school and swimming classes. All this helped her through her journey. After the lockdown, all this was taken away, and we had to make up for it. Suddenly I was supposed to be her teacher, tutors, therapists and trainer. It was overwhelming, but I took on the challenge.

Every parent knows that it’s a disaster for kids to be stuck at home all day with minimal social interaction and activity

I prepared all her work, talked to her tutors, bought millions of boxes and files to arrange everything she needs. I printed out her worksheets and flash cards; I looked up activities. I was ready. What I didn’t consider was if Tala was as ready as I was. She wasn’t.

Tala likes staying at home watching TV like any other child. The problem is I noticed that as time passed with her at home, she was starting to fall behind. Not only academically, but physically as well. Her mouth and hands were weaker, and no matter how hard I tried to get her to work, she pulled away even more.

I felt like a failure. Devastated, frustrated, mad at her, mad at myself

She gained weight, so even her back and feet looked different. After eight weeks of absolute frustration I broke down. I felt like a failure. Devastated, frustrated, mad at her, mad at myself. I wanted to take her back to therapy or bring her a tutor at home, but I was too scared because Tala won’t wear a mask and won’t abide by social distancing rules. I stayed two days in bed not talking to anyone. Ali, my husband, talked me through it and we agreed that we don’t need to fill in for all that she is missing. We will do our best and live each day as it goes, which was always the plan with Tala.

Tala’s sister, who never knew how to play with Tala and didn’t spend enough time with her before, now doesn’t want to do anything without her

It took me a couple of days for this idea to sink in and I started looking at the bright side. Celine, Tala’s sister, who never knew how to play with Tala and didn’t spend enough time with her before, now doesn’t want to do anything without her. She encourages her to play and helps her with her activities. I started doing fun activities and would ask Tala if she wants to join us. If she doesn’t, I let her be. I stopped trying to push her and wouldn’t let her feel my frustration. I invested in things that helped me work with her like a laminator to laminate all her worksheets, so I can use them more than once. I bought an inflatable trampoline and slide and two gym balls so she can do her physical therapy moves while playing with Celine. I stopped feeling guilty if I didn’t finish everything on her schedule. And even better, I tore the schedule and just kept a journal of what we do every day. I made her feel in control of what we accomplish.

I spent more time doing house chores with the kids. Like laundry, which involved a lot of physical activity and fine motor skills, cleaning their room, going for walks, and naming things in the street. Bit by bit Tala started to join us more often, focus more on activities and getting better. It is not the best result I hoped for, but still there is progress and that is what matters.

You are not a superhero because you can do everything. You are a superhero because you fight every day for your child. You love your child the way they are. You come up with a way to make things work. You celebrate the little victories and you know when to stop, when to run and when to slow down. You are your child’s number one advocate, so never make them feel that you are frustrated or that you could give up. Easier said than done, but you can do it. You are a parent of a challenged kid; you’re built to be a superhero.

A mother of a challenged kid and a chemistry teacher in Manor house School the British section. I have a passion for teaching, even though I graduated from faculty of pharmacy, I started working as a teacher as soon as I graduated. I started my blog http://thetalaeffect.blogspot.com.eg / and Facebook page Mother of a challenged kid https://www.facebook.com/thetalaeffect to share my experience with having a challenged child in Egypt in attempt to spread awareness about this issue and encourage other parents to share theirs so we can all learn from each other.

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