“Discontentment is worse than witchcraft.” This is a saying that my granny pelts out from time-to-time when I complain or express disdain about something. Well, for the past few months, I’ve increasingly become discontented about a dire situation that is no one’s fault, but precious time is a wastin’, and a future is at stake—none other than my daughter’s. I’m definitely not a witch, just a concerned parent with no crystal ball, but ready to take the leap into the unknown.
My daughter, Soanirina, will be 11 this year. I boast to everyone that she is a natural born athlete. She can rollerblade, skateboard, ice skate and even snowboard with no fear. However, she is nonverbal, and can’t read, write, much less spell her name. Everyone who engages with her immediately remarks how incredibly sharp she is, but when it comes to the academic arena, I’m worried. She attends a great school with a caring team of teachers, paras and therapists, but as comfortable as I am with her school just being a hop, skip and jump away, I know she needs more help that is going to take her out of my comfort zone. Note that I said, “my comfort zone.”
When I worked in Manhattan, Soa first attended a half-day pre-school in Brooklyn, where I was allowed to have a nanny ride the bus with her. I was comfortable. When she matriculated into a full-day school in Woodmere, Long Island, and had to ride the bus unaccompanied, the comfort zone got narrower, but at least the school was reasonably close by, where I could hop on the Long Island Railroad in the city and get to her in a jiffy. Once she entered a Department of Education (DOE) public school in New Hyde Park—oh, how the comfort zone became the size of a pea. When one day, it took her three hours to get home from school, I immediately transferred her to a school in Rockaway. Then my life made an about turn. I left my career as a fashion technical designer to focus more on my daughter; return to my first love, writing; and spark a forever flame with Rockaway’s beautiful autism community. The comfort zone got nice and fat, but admittedly as comfortable as I am, it’s time to step out for my Soa.
Soa desperately needs more support in a school setting. She is getting older, not to mention stronger, and her behaviors are becoming more unmanageable. I’ve spoken to countless parents, who were faced with similar challenges, and decided to put their children on the spectrum in a private school setting. It’s not an easy decision, because you have to request an impartial hearing with the DOE to state your case as to why you believe a specialized private education setting is more appropriate for your child’s needs. There are many costs involved including fees for an attorney, parent advocate, and private evaluations. These private schools cost upward of $90K per year, and you have to fight to get the DOE to pay. (Note under the federal Individuals with Disabilities Education Act (IDEA), your special-needs child has the right to a free and appropriate education that meets their individual needs).
I recently heard someone say, "The education law requires that we provide your child with a Chevy, not a Cadillac." I hate to use that analogy to compare public school versus private school, but I don’t want my daughter, or any child for that matter, to lose out on a bright future based on what the system deems an “adequate” academic setting. As parents, we don’t want adequate, we want the best that is possible. There are no guarantees that a private school is going to do magic and all of a sudden, Soanirina is going to be calculating long division and reading Shakespeare, but as parents, we have to exhaust every avenue to help our children be the best they can be. It’s not an easy road, but worth every step because once you get on top of that mountain, and look up, the possibilities will seem as endless as the universe.