Confessions of a father of a child with disabilities

Purpose of this blog:

The objective is to share my authentic experiences as well as raise awareness among my professional and personal network about raising a child with disabilities. My elder daughter Navya has Down Syndrome.

I also dedicate it to fathers with children with disabilities who might find it useful and comforting as they are not alone.  I find it therapeutic to write and hope you enjoy reading it.

17 September 2020

This year has been tumultuous for the entire world with Covid-19 outbreak and getting used to the New- Normal. We all have had our ups and downs getting used to Zoom call fatigue working from home and online school for the children.

Navya made tremendous progress completing her kindergarten as she was included in a private school with a 1-1 aide. She interacted really well with typical children in the same classroom and they developed great bonding and empathy as well.

The inclusion has helped her grow emotionally, socially and vibrantly participate in outdoor activities with typical (normal) children. We saw remarkable changes and she met most of IEP goals. Unfortunately, since the Covid-19 crisis, things have not been so easy.

Children with Down Syndrome thrive in social interaction and keeping them at home in restrictive environment has its limitations. Navya has been having more screen time than usual, which has been the case for most children confined at home.

It has been overwhelming for parents especially for mothers as children gravitate towards them. As for me as a father it has been a mixed year.

Like most people, I got totally immersed in work the first few months from March to May getting adjusted to new work environment. I ended putting more hours including the 2.5 hours of commute time that I was saving.

Rashmi bore the brunt during the week managing both the children. In the weekends, unable to go out anywhere, I spent time either watching a few TV series or spending time understanding the financial markets and tracking Covid-19 global statistics, which became an obsession.

When the summer vacation began in May- June, I realized this is not working and I need to spend more time with the children.  I set myself a goal that I had to teach Navya and Diya riding a bicycle by end of summer.

TEACHING RIDING A BIKE

I called my brother Sanjeev as his children had recently learned to ride their bikes. He offered me his daughter’s Bike as she had outgrown it. He advised me to get a Balanced Bike with no pedals versus a bike with training wheels.

Children learn the concept of balancing easily- they sit on the seat, walk to get started, slowly they pick up speed and then they gradually glide putting their legs in the air. This balancing helps them when they transition to the bike with pedals as it becomes easier.

I came across some great training videos on how to teach children with Down Syndrome? I wanted to make sure that I get the right balance bike for Navya and came across this company Strider Bikes that make special bikes  for  children with developmental delays.

I had a make a decision to either go for the Strider 16 (developmental delays) or 14 for typical kids. I decided to go with Strider 16 though Navya was a 1-2 inches shorter for it.

So now I had two bikes-14 inch bike that Sanjeev gave me for Diya and the new 16 inch strider for Navya.

I was all excited when the Strider 16 package came. I unpacked it and started assembling it asap. It took nearly 20 to 30 mins until I got stuck when I had to put the left stationary pedal for the bike.

I was literally stuck for 45 mins and I was getting frustrated.  I saw my neighbor Chris who was mowing his front yard. He is really adept and I ran across the road to tell him about my predicament.

Chris took nearly 2-3 minutes and improvised putting the screw  in anticlockwise direction. I was relieved but also at the same time kicking myself how could I miss that.

I immediately came back home and wanted to get Navya on bike. I had to get started after spending nearly 2 hours assembling it.

Navya excitedly came to check out the new bike. She sat on the seat and before I could react, she fell down and started crying. I just got flustered on how I could miss it. Why did I not help her and make her first experience pleasant?

The second time around I was more careful and made Navya sit on the bike but to my luck she was shorter for Strider 16. She was unable to put the feet on the ground. I immediately improvised and put her on Diya’s 14 bike. She moved a couple of steps and she fell down again. Ever since those 2 incidents, I have unable to get Navya on the bike.

Rashmi suggested that I let Navya practice on the tricycle. In the meantime, Diya was excited and showed a lot of enthusiasm to learn. I took Diya around the neighborhood everyday for nearly 4 weeks and she finally learned.

Here are videos of Navya and Diya riding

Three months of summer have passed, and I am guilty that I have not been able to spend time teaching Navya. I have been partially successful in my mission. getting Diya to ride.

Navya has grown a few inches and is now perfect for Strider 16.  I need to strategize and keep cool on how I can get her back on the bike.

Hoping the next year when I write the blog, I share a video of Navya riding a bike.

I am raising funds for the Down Syndrome Connection Bay Area (DSCBA). This year has been really hard for DSCBA due to COVID-19 environment as they have been unable to raise funds through their Gala Dinner event and Step Up Walk.

They have been unable to reach their fund-raising goals this year. I would appreciate it if you could be generous and donate magnanimously.

Donate in Down Syndrome Connection Page

https://www.ds-stride.org/bayareastepup/profiles/team/TeamNavya

or via the Facebook Fundraiser

https://www.facebook.com/donate/4372867926116490/

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