This week, I had a special assignment for The Rockaway Times to spotlight local eight-year-old baking tycoon, Connor Rodriguez, known for his company, Connor’s Cupcakes, that has gone beyond viral, not because he has Down syndrome, but simply because his precious sweet gems are off the hook! (See story on page 12). After chatting with his parents, Fred and Marian, I left feeling empowered as a special-needs parent. Their testimony will truly inspire anyone—parent, caregiver or guardian with a special-needs loved one. I left even more reinforced with the sentiment that the term, “disability,” should be thrown out and replaced with “SPECIAL-ability!”
This family is a testament that laying on your laurels and bemoaning your child’s diagnosis, whatever it maybe, is not going to help. As Fred Rodriguez aptly said, “Yeah, they diagnosed him with Down syndrome, but that diagnosis doesn’t put a value on his worth and what he can contribute to society. Who’s to say what’s normal? As their advocate, you have to kick every door down, exhaust every avenue and try your utmost best to give them a chance at the best life.” And Rodriguez family, kudos to you, because Connor’s life is as sweet as his cupcakes and his precious smile.
However, admittedly folks, as the evening wore on, my euphoria waned as I thought of my little Soa. Am I “kicking every door open and exhausting every avenue” to help her be the best she can be? Have I laid on my laurels, just accepting what the system has given her? Late at night, after giving myself a headache from pondering and beating up on myself, I decided to listen to the recording of the interview. The way this family truly laid out their lives, struggles and ongoing journey were just so bare bones. No sanctimonious talk, just the raw truth.
Then it dawned on me! This interview, little Connor and the Rodriguez family were a gift. This family was so transparent about not just the struggles, but the variety of resources they tapped to help Connor. From lawyers, special needs advocates, schools, therapies—they shared so much and are equally passionate about helping other parents facing obstacles. They even launched nonprofit organization, Connor’s Place, a rich resource of information for special-needs families, regardless of their loved one’s diagnosis. For more info, visit www.connorsplace.org.
Regarding schooling, they recommended the following:
-Little Meadows (a half day preschool program) and Steppingstone Day School, (according to the Rodriguez’s, an awesome school with a top-notch staff and well-equipped with a sensory and handicapped-compliant gym).
-Tiegerman (formerly known as School for Language and Communication Development). Tiegerman serves Pre-K to grade 12 students with developmental disabilities. The elementary school is located in Glen Cove, LI; the middle school is in Woodside, Queens (which from this upcoming September will be located in Glen Cove); and the high school is in Ridgewood. For more info, visit: www.tiegerman.org.
To get Connor into private school, the Rodriguez family went through the NYC Department of Education’s (DOE) hearing process to basically fight for Connor to be placed in the school they deemed best for his needs. Note for this process, you have to hire an attorney and pay for a host of evaluations. They employed the services of attorney, Michele Kule-Korgood from Kule-Korgood & Associates (www.specialeducationlawny.com), and psychologist Sarah Birnbaum, (www.nyspecialneeds.com), who conducted some of the evaluations and was a vast wealth of information for the Turning 5 process with the DOE .Note that I wrote an article about this process featuring local, Regina Skyer, who also is a passionate advocate and runs special education law firm, The Law Office of Regina Skyer & Associates (www.skyerlaw.com).
Another priceless gem of information Fred and Marian shared was Self Direction through OPWDD (Office for People With Developmental Disabilities). Self-direction gives parents the flexibility to choose the mix of supports and services that are right for their child. With self-direction, you are given a yearly budget, where parents or the designated guardian choose services, or the staff and organizations that provide the services. That can include for example, swimming lessons at the YMCA. The Self Direction funding can be directed to that, or any other recreational activity or therapy that benefits the special-needs individual’s development and overall happiness. For more info, visit: opwdd.ny.gov/selfdirection.
So folks, as you get ready to kick off the summer this Memorial Day weekend, and honor our veterans, check out these resources. And put an order in for Connor’s Cupcakes (connorscupcakes.com)!BLOG COMMENTS POWERED BY DISQUS