When Alissa (the founder of Sprinkles of Hope) first asked me to speak, I was surprised and flattered and nervous. I thought to myself – what am I going to talk about? Writing a blog, updating my facebook status or tweeting is one thing – addressing an audience is another. For the last 3 weeks I’ve been thinking about what I wanted to say – something that would be inspiring and hopeful.
But last night I came home after a long day of work and a two-hour session of sensory gym with Norrin and I received another rejection letter from a school. We’re in the Turning 5 process and it’s the 3rd rejection letter we’ve gotten this month. Our Turning 5 meeting was canceled the week before it was supposed to take place and I have no idea when it will be rescheduled. And I have no idea where Norrin will go next year for Kindergarten. It seems the decision is out of my hands.
March has been a tough month. I’m far from inspired or hopeful –
I am frustrated.
A few months ago, Dr. Oz featured a show on Autism. The parents Dr. Oz focused on described their life as “a nightmare,” and their children as “broken.” And Dr. Oz spent a great deal of time on “what causes autism.”
I don’t care what causes autism. We are beyond that conversation. The conversation that needs to happen is: How do we provide the proper support and services for our children.
Autism itself is not the “nightmare.” The nightmare is dealing with the Board of Education, budget cuts, and insurance companies, Medicaid waivers, never ending waiting lists, lack of services, lack of awareness and lack of acceptance.
The nightmare is calling an agency for services and hearing “Sorry – we don’t service the Bronx.” Or calling the only after school program for children with autism in The Bronx and being told that there’s not only a 1 – 2 year waiting list but due to budget cuts – the program may terminate by September.
The nightmare is the financial strain autism puts on a family. Paying for private evaluations or therapies that insurance companies won’t cover or lawyer’s fees to secure appropriate school placement because our children are not entitled to the best. Or families taking out 2nd mortgages to pay for private school tuition – hoping the Board of Ed will reimburse them before the next years tuition is due. The nightmare is pulling your child out of that program because the Board of Ed hasn’t paid you back and your money has run out.
Our children are not “broken” and they don’t need to be fixed. They need to be taught in a way that they can learn. Considering we’ve been rejected from three schools this month, I am starting to wonder – who will be able to teach Norrin in the way that he can learn.
I’ve been told that I should move – to Queens, Long Island, Westchester or NJ. Anyplace with a better school district. But moving shouldn’t be an option. Or a solution. And even if I could afford to move, what about the other kids in the Borough that are left behind?
There is talk about restructuring Early Intervention – having parents pick up a percentage of the cost. When Norrin was diagnosed 2 ½ years ago, we bombarded him with Early Intervention services. We had a service provider in our home 5 – 6 days a week in addition to his center based program.
At the time he was diagnosed – he had no language. He couldn’t point, wave, make eye contact or sit still long enough to complete a simple task.
But after months of intensive therapies – Norrin achieved all of those things and so much more. His development has been amazing to watch and we never take a moment granted. Every milestone is celebrated. And there are moments, when it’s very easy to forget that there is a diagnosis, moments when he is just a boy and the words - typical or atypical – do not exist.
The diagnosis has not defeated me, but the system comes dangerously close. So while navigating the labyrinth of the Special Education System is financially and emotionally exhausting – hope sustains me.
When Norrin was first diagnosed we didn’t know anyone who had a child with Autism. No friends or family member who can speak from experience and say – your child will be okay. And there was no greater moment of isolation. We had to create our own network. And years later, my blog – AutismWonderland – was born.
But since Norrin’s diagnosis – our nephew and my best friend’s daughter have been diagnosed with autism. And I want them to have the same level of services that Norrin received. Services shouldn’t become privilege or a luxury, our children need the services and they are entitled to them.
We’ve all heard that old proverb “It takes a village to raise a child.” When it comes to having a child with autism or any other special need – it really does take a village. It takes a village to support our children and it will take several villages to maintain appropriate services. One person or parent or therapist cannot fight a system. It takes every single person in this room to create a village and advocate. It needs to be a collective effort. To call, write or email the Governor, Mayor, Cathie Black, Borough Presidents and other elected officials. We need to tell them what our children need. We need to become one big loud squeaky wheel.
Tomorrow is the first day of Autism Awareness Month. But for me, and many of us here – it’s every day. And Norrin has shown me the difference a day can make. So let’s make our every day count.
|(from left to right) Angelica, Kenia, Me, The Boy, Allie & Alissa