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 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)

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