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.

17th September 2018 Blog

It was Thursday, 11th July 2013. We had met with the doctor earlier that morning and relieved that our daughter Rohini (Navya) was gaining weight and doing well. She was born full term weight over 4 pounds at 37 weeks on 29 June 2013.

M.S. Dhoni had played an excellent knock to win India the tri nation cricket series in West Indies. I was in my family friend Milind’s house to distribute green plums from our backyard.

It was around 4.30 pm when I got the call from my wife Rashmi. She said “Rohini has got Down Syndrome. The geneticist had just called.

We were unaware that the doctors had ordered for Karyotype test. I don’t remember how I drove home to get to know more.

I reached nick of time to speak with our pediatrician Dr Erburu. She spoke to us calmly and asked us to meet her in clinic the next day.

My brother Sanjeev and his wife Vasudha came home and my in laws kept comforting us that evening that things will be alright.

The next few weeks we were busy spending in cardiologist/ ENT clinics and other labs. Luckily we were blessed that Navya did not have any major health issues unlike other children with Down syndrome at birth.

What is Down syndrome?

Down Syndrome is a genetic order (not hereditary) caused during time of conception. Every gene cell contains 46 chromosomes, half of which are inherited from father and mother.

Down syndrome occurs when an individual is born with full or partial extra copy of chromosome 21 meaning they have 47 chromosomes. This extra gene causes developmental delays. Here are some of the myths and truths about Down syndrome.

Coping up with the news

We were startled and in disbelief. This could not be happening to us. We had taken prenatal screening tests that came in negative. We were like just other parents expecting a normal baby.

It was such an excruciating feeling that one cannot explain. It was the Unknown that we were coping with. I started researching online and came across this table on Wikipedia.

Anybody seeing this chart can get unnerved; we started thinking what are the odds that our daughter was born with these issues. Were we in denial?

Counseling

We did not have any history in our families and we were never exposed to children with Down syndrome growing up in India.

Rashmi and I had met an adult Blair in one of my USC alumni events in 2012 and it was not until we met his mother Martha in the Down Syndrome Connection, DSCBA, non-profit in Bay Area, that we had met a person with Down syndrome.

We were lucky that the DSCBA was in nearby town Danville, just 3 miles away from home.

Martha was a family counselor, who was very caring and motherly. She shared her experiences and just kept listening and comforting us while we were venting.

She gave us a binder of research and articles on Down syndrome to help us cope. I don’t know what gave me to strength to read at that time but some of the research had a profound impact.

The Kubler Ross Grief cycle explains the various emotions that we go through when we are having grief- Denial, Anger, Bargaining, Depression and then finally Acceptance.

We definitely experienced these emotions and knowing about this cycle helped us realize that we would reach acceptance.

Another article that really touched me was “Welcome to Holland” by Emily Perl Kingsley. She gives analogy of the experience of raising a child with disabilities to planning a trip to Italy but unintentionally ending up in Holland. She sums up

“But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there.

And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”

My brother Krish connected me to Rekha Ramachandran, founder of Down Syndrome Federation of India based in Chennai. Rekha gave birth to her daughter Babli in 1980s and there was not much awareness in a country of a billion people.

She has painstaking worked in India training people to help Down Syndrome children live fulfilling lives and advocating for full inclusion in India over the last 40 years. When we spoke to Rekha, we were complaining about our situation.

She listened and directly told us you have to count your blessings that we are in the United States, a developed country and your child is healthy with no major issues at birth.

Imagine the children in the villages in India for years go undetected and do not have access to occupational, speech and physical therapies.

Parenting

We were able to swing into action in the first few months of Navya’s birth and started providing her occupational and physical therapies the first one and half years. Navya made tremendous progress and hit many of the developmental milestones.

We spoke to a geneticist who gave us advice to have a second child. He recommended having a smaller age gap of 18 to 24 months would definitely help Navya.

He advocated the concept of sibling synergy rather than rivalry. The Almighty heard us and we beat the geneticist to having our second daughter Diya within 16 months.

We didn’t realize what we was in store for us. I accepted a limited restructuring package and did not anticipate that I would be in a career transition for nearly four years in and out of work.

At the same time, Navya started to regress and did not hit any of her communication milestones. Our daughter Diya too had developmental delays though she did not have any diagnosis. We provided her therapies too and she is doing better now.

I got a chance to spend more time with my daughters at home. I was involved in all the therapies, doctor appointments and actively involved in pre-school setting Navya’s individual educational goals.

I still felt that I could have provided more speech therapy services in addition to the Regional Center services but our financial predicament did not allow us to do so.

I was spending several thousands dollars per month to keep the lights on paying for PPO health insurance. As a father, you want to be a provider but it does not always happen.

My wife Rashmi has been bearing the brunt dealing with the day-to-day activities of our children.  Like many couples raising a child with disabilities, we have had our fair number of squabbles with one another.

I have questioned my wife’s family hereditary lineage fully knowing that Down syndrome is not a hereditary disorder. Stress makes you want to blame your circumstances on someone.

It is difficult to delineate the roles and responsibilities between the father and mother. I rather load the dishwasher, do laundry and clean the house than spend time with the kids.

Am I a bad father because I don’t read stories to my children at night or play intellectual games with them? Am I a good father because I dance and play monkey tricks that make my children laugh and feel happy? I don’t know and I am still grappling with it.

There are events that trigger Why Me? especially when you are in an IEP (Individualized Education Program) meetings and listening that your child can’t do this and that.

Those are the times you kick yourself and believe you have been cursed. You may think I am exaggerating but those are the real emotions at that moment. There is nothing such as full 100% acceptance. It is more realistic to be at 80 to 90% acceptance.

We have indeed benefitted speaking with our couples’ therapist periodically who has kept us on track with objectivity. There is research that shows that there is higher incidence of divorce amongst couples that have child with disabilities than without disabilities.

Full Inclusion

We have been advocating the last six months for full inclusion placement with a 1-1 para aide in kindergarten. We want Navya to go to school in general education classroom rather than segregated classroom.

We are going to have a due process hearing for Navya on March 26-28th 2019 and fighting the San Ramon Unified school district. Our lawyer has thoroughly reviewed Navya’s school academic records and knows that Navya deserves to be in inclusive general education placement.

We have done exhaustive research on full inclusion; speaking to parents from other Bay Area school districts that have their children included, National Down Syndrome Society (NDSS) educational advocates and parents across the country.

We have also spoken to parents, who have older children and regret they should have fought harder and advocated for full inclusion earlier for their children. We are convinced that full -inclusion is right for Navya and won’t leave any stone unturned to secure it.

California school districts encourage segregation and especially do not include children with intellectual disabilities. Only 6% of CA kids with Down syndrome are included in general education compared to 65% in Iowa and 42% in Alabama (Source- 39th Annual report for implementation of IDEA, Page 155, PDF page 189) 

The reason for such a low number is because CA school districts don’t want to change their mindset to retrain their teaching/ para aide staff and also parents of children with disabilities do not advocate enough due to fear of retaliation or just because of lack of awareness.

School districts settle with some parents in one off basis but there is no change in attitude and it is business as usual.

Charlene Comstock Galagan, in her paper, Why Inclusion begins in kindergarten … Or Doesn’t states that children who are included from the start are welcomed in the community and don’t have to depend largely on human services systems for their lifelines.

Children learn from one and other. Peers provide models as they react to and interact with each other and teachers. Even the most talented, dedicated special education teacher with the most innovative materials and equipment is unable to provide these models in a setting exclusive with children with disabilities.

Thomas Hehir, who served as Director of the US Education Department Office of Special Education from 1993 to 1999, in his research paper- Summary of Evidence of Inclusive Education studying inclusive setting models across the globe, cites children without disabilities can benefit academically, develop socially and emotionally by having more empathy.

Students with disabilities in inclusive settings academically outperform students in segregated settings and they too develop more socially and emotionally.

I am working hard to change the school district’s mindset. I have made this my mission to let more parents aware of their rights and what their options are? I

Tt is indeed a personal decision for parents to do what they feel is right for their child but having said that they should be fully informed while making that decision.

There are role model school districts such as the West Linn School district in Oregon that have 100% full inclusion.

(Source -https://www.king5.com/article/news/local/oregon-school-district-includes-all-students-with-disabilities-in-regular-classes/281-557552151)

State of Down syndrome in the world

Until the 1980s, people with Down syndrome were institutionalized even in developed world and life expectancy was 28. Today they have better life expectancy of 60 years and society is evolving though much work needs to be done.

It is sad to note that countries across the globe from Denmark, Netherlands to China are investing heavily to promote abortion of fetuses even as late in the ninth month of pregnancy. (Source- The Last Downer: China and the end of Down syndrome).

Even the Down syndrome research dollars are being invested in prenatal screenings than post natal care and treatment.

A competing set of scientists is on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it. (Source- A Drug for Down syndrome)

The National Institutes of Health (NIH) has been spending between $18- $58 Million per year on Down syndrome, which is relative lesser to other categories. (Source- NIH Spending Categories)

To sum up, I have been completely humbled and happy to be father of Navya. I have learned so much from her. She has the tenacity and determination.

I don’t deny that I have moments of self-pity but that is only 5 to 10% of time when I feel the need to defend and speak for my child. My daughters Navya and Diya bring me joy and make me smile. Can’t ask for more.

Ask your child whether he or she has a fellow student with disabilities in the class.

Please also make it a point to ask your child’s teachers in Parent teacher meetings their thoughts on inclusion and what is the school district doing about it? It is important that we shape the lives of all the children in an inclusive world.

I request you help me raise money for DSCBA and please share this blog with your friends and family.

http://www.ds-stride.org/bayareastepup/profiles/team/teamnavya

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