McCarton Gala 2015
At this year's gala, I was asked to speak on my experience being a parent from the Bronx and what is was like trying to obtain services for my son Daniel and my daughter Chloe so many years ago. And while Daniel has been diagnosed for 5 years and Chloe for 3 years, yesterday proved that those feelings I had so long ago are ever present.
Chloe and Daniel with big sister Adriana leading the way. Like always!
It was an overly emotional experience to share my heart with some many people that I did not know, but I knew that it was an important message that needed to be heard. I wanted to share with you my speech from last night in hopes that it will inspire you to join the McCarton Foundation continue to raise funds to open a successful and much needed program.
"When I first got the email that the McCarton Foundation was opening a center for children in the Bronx, I said yes! Finally!
Being a native of the South Bronx my entire life and raising my children in the borough, I know first hand how difficult it is to find good programs for children and especially for those with special needs. Programs that value quality over quantity are practically non-existent.
My autism story begins in September of 2009 at my son's, Daniel's, 15 month visit with his doctor. There I voiced my concerns with his development. His doctor was very helpful in giving me information to contact an early intervention agency and life as I knew was changed forever.
While the meetings and evaluations seemed endless, I would not know until much later that my son was being shortchanged. His first series of evaluations concluded that Daniel did not qualify for services based on his scores. I urged the agency to get him reevaluated as I did not accept their conclusions.
The early intervention agency, which closed during this process, set up another set of evaluations with another agency that began in January of 2010. My son Daniel, was finally diagnosed with autism in May of 2010 and his services began in June, just after his 2nd birthday.
Daniel lost over 8 months of services because of the ever changing opinions of an agency that thought they knew better. I encouraged myself to keep pushing, the agency gave me little support. I was all I had. The back and forth between agencies and evaluators was at his detriment. The lack of support from experienced professionals became more and more apparent. I knew that Daniel only had me to depend on.
Once he received the services, I soon realized that it was not enough although I met 3 gems aka therapists during this process. I felt, however, that I had to accept what was given to him. The final blow came when he was aging out of early intervention and preparing for preschool. I was told that Daniel should have also been receiving occupational and physical therapies. The agency failed to evaluate him for those crucial services and I had never even heard of those therapies.
Like many parents, I was left in the dark. And although I did my research, the emotional toll that it took on my personal and professional life was too much to bear. The injustice was blaring.
When my daughter Chloe was diagnosed 1 1/2 years later, I knew better. I found that I could demand better services for her. She was given ABA services and center based services. I did not budge from what I knew she needed.
The early intervention center based program that Chloe attended is now closed. And many early intervention centers in the Bronx continue to close. Those left do not offer ABA services or just do not have the space for more children. There is a need for these centers so that a child can begin to thrive.
Nothing eases the frustration and sadness of this process like having a staff of professionals help a family go through the motions of a diagnosis in a positive manner. When there are multiple agencies involved, almost certainly, someone will get lost in the shuffle. My son got lost in that shuffle.
Receiving a diagnosis is heartbreaking enough. Parents too need a stable support system that will ease the blow of a diagnosis, and of what comes next. But we, parents, should not do this alone. It simply cannot be done.
With the McCarton Foundation opening a new center in the Bronx, I believe that families will be able to become empowered in this journey. Being able to receive comfort at the most vulnerable time with a team of experienced professional will mean that no child will be lost. Many families can begin this new life with the tools necessary to ensure their child a successful future.
Thank you for listening to my story."