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.

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

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