Confessions of a father of a child with disabilities

Purpose of this blog:

The objective of this blog 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 and is eight years old. For the past three years, I have been writing an annual diary sharing about my experiences through that year. I find it therapeutic to write and hope you enjoy reading it.

We have cumulatively raised over $50,000 in the last 3 years thanks your magnanimity and altruism. I would like to thank all of you who have donated for our causes.

It may come as a surprise to many of you; we made a big life changing decision to relocate to Sarasota, Florida in May this year.  I share our rationale, motivations and how our first six months have been.

This year, we are raising funds for a Florida non-profit Disability Independence group (DIG) who has the mission to expand opportunities for participation, education, employment and acceptance of Persons with Disabilities through advocacy, litigation, education, and training.

Please donate via our Facebook fund raiser or directly via their Donate Page

Feel free to scroll down to read my prior year blogs.

2021

2020

2019

2018

28 November 2021

The Covid-19 pandemic has impacted each one of our lives. It has helped me reassess of my priorities, goals and aspirations and how I want to lead the rest of my life.

We had not had a family vacation for nearly four years, and we decided to explore Sarasota, Florida last December. Sarasota is an upcoming beach town that is an hour away from the Tampa in the west coast of Florida. We booked a vacation condo rental for three weeks to enjoy the pleasant weather/ beach water and at the same time explore if we could move there.

We moved to Sarasota for primarily three reasons.

  1. Better Inclusive and quality education for our children
  2. Rekindle the spark and have fresh start to our marriage
  3. Better quality of life and securing a financial future

We have reached the six months mark and I will be frankly assessing each one of these areas.

Better Inclusive and quality education for our children

As you know from my prior blogs, we are big proponents for having an inclusive education for Navya and have fought for three years in California with the San Ramon School District. The school district literally made us file Due Process multiple times only to finally settled out of court.

Navya met all her Individualized Education Plan (IEP) goals and all the typical peers accepted her. As they say the strength of a chain is in its weakest link. The school district had no other option but to give in our demands. This could have been done in the first place without putting undue stress and mental agony on us parents and legal fees wasting taxpayer money.

We realized that the teachers and staff are not given the required training/resources for inclusive learning. The pandemic put additional pressure on the schools with online learning- which with all fairness was difficult for the schools to adapt and implement.

The teachers, who had autonomy in their classrooms to teach the children in their own style- were now subjected to 25 to 30 students’ parents judging them online. It is like having a boss overlooking your shoulder when you are working on your laptop. That is such a tough situation, and no one can be at their best, how much ever confident they maybe.

We moved here after researching the publicly available school data promoting the wonderful schools in Sarasota. They had Inclusive charter in their website that had started in 2000s. We also spoke to a parent, who had their Down Syndrome child included in the Sarasota school district and anecdotally from the local people we met.

Sarasota has adult vocational Schools like Haven Academy established in 1954 with the vision that would serve children with special needs throughout their lifetime. The founders were forward thinking parents that were desperate for services that would empower the potential of their children rather than placing limitations on their personal growth.

Sarasota is also home to Rise & Nyes, a coffee and ice cream shop run by people with intellectual and development disabilities.

We chose the Southside Elementary as it had high ratings. We liked the neighborhood as it had the small-town feel- greenery with 1950s tree foliage as well as access to beaches and Downtown urban restaurants and arts/theatre.

We came with great expectations only to be welcomed to a bad dream.

Florida state law mandates that a school provide a comparable IEP, right from the beginning SouthSide has been collecting data to dismantle Navya’s inclusive IEP without providing all the services such as initially providing full time attending Special Ed teacher and AAC training to non-verbal Navya and the staff.

We changed our strategy this time; went to School Board Meetings and also communicated with Board Members, the Superintendent & executive staff. The school has lied and retaliated against both our children. Well, this may sound exaggerated like a Bollywood movie, but it is reality.

I spoke on two occasions on Oct 19th Sarasota School Board Meeting (Time Stamped) and Nov 2nd Sarasota Board Meeting (Time Stamped). My wife Rashmi also spoke in the Nov 2nd Sarasota Board Meeting (Time Stamped). We are given 3 minutes to voice our concerns.

That has gone to no avail, we were left with no other option but to file a State due process complaint once again. We have also filed at the federal level with Department of Education- Office of Civil Rights.

Rekindle the spark and have fresh start to our marriage

Rashmi and I have been married for 12 years now. Our marriage has withstood having a child with developmental delays, a long four-year career transition with intermittent income, uncertainty whether we will live in America or have to return to India due to visa issues and lastly our three-year battle against the San Ramon School District.

Though we took it on ourselves to battle the San Ramon school district, unlike most parents who don’t, it came at an expense because the sheer stress resulted in burn out. Rashmi is the primary care giver and raising a child with disabilities is not easy. I do my best handling all the billing reimbursements for therapies, working with the insurance companies and lawyers for the documentation.

The Covid-19 pandemic did not help with all of us being at home- resulting in many more fights and arguments in front of our children- which is detrimental as it is for their very cause we are fighting for.

We have lost that mojo or intimacy that we once had and hence I thought a change of place would probably help us. The logic being if we solved our children’s issues then we could work on our marriage.

I have sought medical help and taken time off from work when the going has gotten really tough. Our therapist, who has been with us for seven years, is surprised on how we have come so far though is very cautious at this time.

Unfortunately, moving to Florida has not helped so far. Having said that I believe this will also prevail and this is an extension of testing time. As they say tough times don’t last but tough people do. I sincerely hope that we are one of those tough people as the statistics of parents of children with disabilities staying married is against our odds.

Better quality of life and securing a financial future

We loved the California SF Bay Area – the scenic beauty, weather, and family & friends that we made over the past decades. It was difficult to say quits as we were among the lucky few who own a beautiful home- with fruit trees and large backyard- the home where our children were born.  The primary reason that people leave the area is high cost of housing.

Covid-19 promoted remote working and I was fortunate to have my company to support my move to Florida. I thrive in person working environment, but I had to weigh the choices- things in my control and things that are not.

Life will get back to normal and the Bay Area traffic will get back to its usual. I would be back in the 3-hour to and fro Silicon Valley commute. Is that something I want? Inflation is catching on and there will be increase in taxes as it is difficult to sustain. It would be difficult to survive with single income.

Rashmi also wanted to get back to school as taking care of children all day can get exhausting. We were also hoping to get affordable help, which has not materialized.

Sarasota is small upcoming town – increasing migration from all over the United States. The housing is comparatively less expensive. I have access to one of the #1 US beaches– Siesta Key- white sand beach in 10-12 minutes, which I go to almost every day for meditating and a run.

We do not need to take the freeway and have access to all essentials in 10-15 min radius. There are botanical Gardens, zoos and many natural getaways but of course the Florida humidity is something to reckon with.

Our children really love it here as they can get into a beach where the water is not chillingly cold.

To sum up, Change is difficult and though we are faced with challenges in the school, we have been welcomed by the local community. Almost everybody is friendly and ready to listen. They are not in hurry to get to somewhere. I have made so many friends of all ages and really broaden my horizons. I would like to leave you with two quotes that keeps me going.

This year, we are raising funds for a Florida non-profit Disability Independence group (DIG) who has the mission to expand opportunities for participation, education, employment and acceptance of Persons with Disabilities through advocacy, litigation, education, and training.

Please donate via our Facebook fund raiser or directly via their Donate Page

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/

17 September 2019

Navya’s Inclusion Journey

It was April 2018 and we were worried about our Navya’s placement after having a few Individualized Educational Program (IEP) meetings ending in an impasse. The school district was recommending a special day classroom for Navya while we were advocating for a full inclusive classroom in kindergarten.

We were anxious like many parents of children with disabilities and reaching out to education advocates and other parents.

Elizabeth Lewis, one of the advocates in Down Syndrome Connection (DSCBA), highly recommended attorney Natashe Washington, who has a stellar reputation of winning cases and school districts fear her name.

I didn’t hesitant to just pick up the phone to call Natashe though at the back of mind I was wondering “Will we be able to afford her fees?

I told myself that there is no harm calling to inquire. Most parents fear taking this step and I am so glad that I made it.

Natashe returned our call that very day and was very courteous. Natashe explained that her firm Miller Washington works on a contingent fee basis;  it costs you nothing from the consultation to the ultimate hearing. Whether or not your case is successful, you will not pay any attorney fees.

There is no catch- the firm only takes up cases in which they believe that they have a high probability of winning. The school district ends up paying the firm if they win the case.

Most parents are not aware about their rights and buckle down to the pressure accepting whatever the school district puts forth as an offer.

Natashe requested us to sign a waiver to review our daughter’s IEP papers.  She evaluated our child’s IEP documents and gave us the good news that she would represent us.

She recommended that we do not accept the special education classroom placement and find a private school placement where Navya could attend kindergarten in a fully inclusive classroom. We would have to show Navya’s progress in full inclusive classroom and that would help us win our court case.

We decided to take the plunge and did not send Navya to school that August 2018.

It was not an easy decision to make to fight a court case against the school district. We felt compelled and felt it was in the best interest for our child. We spoke to parents whose children were fully included and heard about the benefits.

There is also research that substantiates the benefits. (Read my 2018 blog below to learn more if you are interested).

We started the process and called over twenty schools in the East Bay area only to hear “Sorry we are not equipped and staffed to deal with children with disabilities”.  We left voicemails and many schools did not respond.

Private schools in the US are not mandated by law to provide education services to children with disabilities.

Rashmi bore the brunt of teaching and entertaining Navya. She was at home and getting antsy as she was seeing her younger sister Diya go to school. It was nearly 3 months and the month of November.

After making a few enquiries, we got to know about Happy Days School in San Ramon.  Rashmi met with the Director Kirsten Stabile and developed a rapport.

Luckily for us, Happy Days had the experience of having a couple of children with Down Syndrome in their school.  They evaluated Navya and were willing to give admission only if we provided 1-1 full time aide.

We were being thrown one curve ball after another. Rashmi started calling over ten agencies to get an aide. It is very difficult to find aides in the Bay Area and it takes a lot of time. It was bad timing as we were approaching the holiday season.

Rashmi simultaneously started working with our medical insurance to see if they reimburse the aide fees. Obviously after months of providing paperwork the insurance company denied the authorization.

Fortunately Rashmi was able to find Advanced Behavioral Therapies to provided us with an aid and we finally got Navya started in school in early February 2019.

We can’t explain the anxiety that we were going through but finally after 5 months we got Navya enrolled in a school.

Navya developed a bond with her aide Maryriel and her class teacher Ms Patty. She had a great camaraderie with her fellow students and started making progress in a few weeks.

Many school districts across California such as Los Angeles and Oakland were having strikes. San Ramon School district was planning to have a strike too. The teachers’ union were having informational meetings.

I attended and realized the gravity of the situation. I personally got involved and started advocating to avoid the strike. Strikes have dire consequences and are not beneficial to both sides. I took the time to understand the issue and wrote a blog from the teacher’s perspective as well as the school district management’s.

My blog  San Ramon Teachers’ Strike is Coming. Parents Act Now to STOP it was well received and fortunately the strike was averted as the negotiations were successful.

In the meantime, our court date was set for March end.  Our attorney Natashe was in touch with the school district’s attorney. Just one week prior to the court date, we had final settlement with the school district.

We agreed to have Navya continue in private school for the academic year 2019-2020 and get reimbursed for the tuition and services.

Navya has definitely made significant progress in Happy Days. We have ramped up her speech and occupational therapies. We are indeed grateful to Happy Days School to give us the opportunity and thank Mayriel for being such a loving aide.

Navya is still non-verbal but is definitely babbling much more. She is saying Da..da meaning Daddy and the word  ‘No’. It is not the best word in the English language, but we are fine with it.

I am anticipating when I write the blog next year Navya will have many more words in her arsenal.

Our battles are not yet over. We need to reconvene  next year in April 2020 to discuss Navya’s placement in school for academic year 2020-21. Hopefully I have great news to share.

PS- I would like to thank you all for the magnanimous support you showed last year helping us raise over $10,000 and come in the top 5 teams. Please help us this year as well.

Donate and join us for the Down Syndrome Step Up Walk on 6th Oct 2019, Sunday.

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

The Down Syndrome Connection (DSCBA) is offering 1 to 2 hour workshop titled “Best Practices to Support and Include Individuals with Disabilities” in Bay Area Companies.

Attendees will gain an understanding about:

  • How to define disability and discuss coming to terms with a diagnosis?
  • Best practices that foster inclusion and support individuals with disabilities and their families
  • Various resources and services available for individuals with disabilities from birth through adulthood
  • Down syndrome, the world’s most common genetic condition

We had the first workshop in our company Pure Storage in May 2019 and it was really well received. We had over 60+ attendees from all over the United States.

I highly recommend your company Corporate Social Responsibility or Employee Resource groups have a workshop. For more information contact Laurie Hawley (laurie@dsconnection.org)  or Elizabeth Lewis (elizabeth@dsconnection.org)

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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16 Comments

  1. Ayona Shome September 17, 2018 at 2:02 pm

    Hi Sandeep,

    Thanks for sharing your story. I hear you !! You and Rashmi are great parents and appreciate the awareness your spreading. Your girls are adorable. God bless

    Reply
  2. Kbrmurthy September 18, 2018 at 4:49 am

    My sister’s grandson had similar problems and moved over to Chennai from Boston
    As the parents felt American syst was slow in progress
    Thirr son I believe is doing much better and parents spend lot of time
    I am sure u too will see the progress for the better

    Reply
  3. Nandini September 18, 2018 at 5:34 am

    Dear Sandeep ,

    Thank you foe putting down every emotion so well. This is going to help people across a lot of spectrum – parents, teachers, social workers, doctors, therapists, counsellors and more importantly parents of ‘normal’ children.
    Inclusiveness is possible only through awaress and acceptance amongst all in the communuty. I am going to share this valuable information. Both your girls are adorable. May Almighty bless you all!

    Reply
  4. Marina Kotsianas September 19, 2018 at 6:12 pm

    Sandeep, your honesty and courage touched me. Your beautiful daughters are lucky to have you both as parents. We all learn to be fearless to discover joy, not just accept the pain. My warmest wishes, Marina

    Reply
  5. Ken Kubota September 19, 2018 at 9:26 pm

    I can empathize because I have a second cousin with Down Syndrom. From my experience, they can be some of the most emotionally honest and gentle people on earth.

    Reply
  6. C R Narayan September 20, 2018 at 5:26 am

    Fantastic work Sandeep. Wishing you well in this endeavour of yours. Best. CR

    Reply
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