Confessions of a father of a child with disabilities

Purpose of this blog:

The objective of this annual blog is to share my heart felt experiences as a father, raising a child with disabilities. My elder daughter Navya has Down Syndrome and is ten years old.

Most fathers of children with disabilities are resistant and do not feel comfortable expressing themselves. Fortunately, it comes easily to me and I dedicate it to fathers who might find it useful and comforting as they are not alone.

What truly motivates us is the remarkable impact we’ve made together – raising tens of thousands of dollars for charitable causes over the last five years. Big thanks to your magnanimous donations and to the women/ moms who keep encouraging me to write about my experiences.

This year, we’re channeling our efforts into Sertoma Kids, a noble organization founded in 1959. They offer speech and language therapy for children, with fees adjusted to each family’s means.

Currently serving 100 children aged 2 to 17 in Sarasota, they aim to extend their services to 200 children next year due to the increase in need and demand due to high net migration into the area.

Your contributions will play a pivotal role in recruiting more therapists, balancing their budgets and broadening their reach. I invite you to join this cause; you’ll find the fundraising link on my blog and in the comments section.

It has been action packed year with Navya reaching puberty at a young age of 10, serendipitously discovering a world-renowned yoga instructor for children with disabilities, successfully enduring a 7-week vacation in India and finally putting up with daddy’s emotions during a prolonged career endeavor.

I realize many of you are passionate about other charitable causes. I would appreciate a like, repost or a comment so that it has broader reach. We have been successful in getting donations from second degree connections and please let me know if I can reciprocate in any of your charitable causes as well.

Donate Page

11 December 2023

This year has been action-packed with Navya reaching puberty at a young age of 10, serendipitously discovering a world-renowned yoga instructor for children with disabilities, successfully enduring a 7-week vacation in India and putting up with daddy’s emotions during a prolong career endeavor.

Navya’s attaining puberty at 10 years

Earlier this year, we were observing changes in Navya’s behavior and since she is non- verbal, we were unable to understand on what was going on. The school was doing their best and constantly communicating with us.

We consulted with experts who specialize in Communication for children with Down Syndrome and grateful that the school staff during a week end took personal time off to attend a webinar for the benefit of Navya.

Luckily Rashmi had the motherly gut instinct, that probably Navya was attaining puberty. We met with our Pediatrician and Endocrinologist and we were about to run a few tests when suddenly one day in May, Navya got her first period.

The school team was very understanding and quick to come up with binder on how we should handle Navya and communicate with her.

I was little startled – Down Syndrome is about developmental delays and here is my daughter who not potty trained, non- verbal gets her period at age of 10. I thought mother nature is not fair to us- why was not the puberty delayed.

Rashmi is the mother, who is bearing the brunt who is constantly keep checking and having vigil on Navya cycles. Since Navya does not speak, we had to try different options for pad protection to see what works and is comfortable for Navya.

It has been seven months now and Navya has become relatively calmer with the hormonal changes. She does not mind expressing herself and has no inhibitions taking center stage.

We were attending the Siesta Key International Sand Sculpting Festival and there was music concert to entertain the crowd. Navya loves music and she did not hesitate to go up to stage to dance and sing to Prince’s 1999 song. The band was gracious enough to let Navya be herself and got her involved.

Serendipitously discovering a world-renowned yoga instructor

Rashmi is gregarious and never hesitates to make meaningful conversations with people– especially with moms who have children with disabilities- a quality which has definitely helped us with Navya.

She had met Shelley in a Speech and Occupational clinic last year, they had exchanged phone numbers but never connected.

Shelley has a son John, who has Down Syndrome and has been learning Yoga since the age of 2 years from Renata Gaertner and Sonia Sumar who run Special Yoga training programs for children with disabilities throughout the world.

Our neighbor Pam holds a quarterly yard sale, which is popular in the neighborhood and it was destined for Rashmi to reconnect with Shelley.

Shelley was kind enough to speak to Renata about Navya and we were lucky that Renata obliged to give Navya 1-1 sessions despite her busy schedule.

Navya has definitely benefited from Yoga and she is making good strides.

Successfully enduring a 7-week vacation in India

Rashmi got her well-deserved vacation after 7 years this summer. She had not met her immediate family and she wanted that time off where she did not have to take constant care of Navya 24-7.

Though Navya had traveled to India as a3-year-old, we were anxious on how Navya would handle 20+ hours of travel and adapt to India.

Navya got adjusted and acclimatized to surroundings in Bangalore and loved meeting so many people.
We are pretty much to ourselves as a family in America and it is very different in India where it is crowded and all about family and friends.

Here is Navya singing and dancing in a family party.

 

 

Navya got to travel in the rickshaw with no seat belts and perplexed to see the traffic and how vehicles were so close to each other. She did not have any health issues and enjoyed all the love and affection showered on her.

Putting up with daddy’s emotions during a prolonged career endeavor

Over the past year, I have been exploring different career options- interviewing for full time positions, examining investing in franchises and now finally providing business advisory services.

I am not the one who can camouflage my emotions. I have had my ups and downs, emotional outbursts and venting my frustrations aloud. One may want have a ideal environment, that is not always possible. At the end of the day our kids are Happy kids and that is what matters to me.

I do my best to keep salubrious.  I exercise regularly running in the Siesta Key Beach almost 5 days a week, maintain a balance diet, meditate and my medical vitals are in control as that is most important during such times

I constantly look at this wall hanging in my bedroom to keep me in the present moment. It could have been even worse.

 

Thank you for reading my blog and please  Donate Page.

About Sertoma Kids 

Sertoma Kids, a noble organization founded in 1959. They offer speech and language therapy for children, with fees adjusted to each family’s means. Currently serving 33 children aged 2 to 17 in Sarasota, they aim to extend their services to 100 children next year due to the increase in need and demand due to high net migration into the area. Your contributions will play a pivotal role in recruiting more therapists, balancing their budgets and broadening their reach.

(Visited 320 times, 1 visits today)

Leave A Comment

Your email address will not be published. Required fields are marked *