Nicky, like many 12-year-old 6th graders, loves video games, junk food, and watching YouTube videos. This wasn’t always the case.
My pregnancy was uneventful. He was a healthy, 9 lbs. 6 oz. bouncing baby boy. He was a champ when it came to breastfeeding, latching on the day he was born. Nicky seemed to reach all the milestones of all typical babies; he was fully potty trained by the age of two with very little effort. His older brother Adam, a 5-year difference in age and who was always a happy baby, differed from Nicky, who instead exhibited early signs of social awkwardness.
Nicky was very indifferent to others and would get very upset when I left him or try to hand him over to anyone, including his Dad. We often laughed he had a Kung Fu grip that was tough to pry loose when I held him.
I noticed very early on Nicky had some quirks. He always pointed with his middle finger. He was extremely picky with food and would fuss with certain clothing. He kept to himself a lot and rarely gave eye contact. Between 2-5 years old he could spend hours and hours just lining his toys up and completely enthralled in imaginary play. He would often get frustrated because his speech was tough to understand. I always felt there was something off, but my husband would laugh it off and say, “He is just like me, more independent and a loner.” Although I didn’t fully agree, I kept shrugging off those pesky feelings and kept telling myself, all kids are different. After all he was able to compute huge numbers in his head and exhibited high intelligence; even Einstein didn’t blurt out his first words until he was three years old.
It wasn’t until Nicky was in 1st grade, and his remarkable first grade teacher, Ms. Marchese, confirmed all my suspicions. To this day, I am grateful for her intervention; had it not been for her, I may have delayed testing him. His school guidance counselor, who was very knowledgeable with IEPs (Individualized Education Program), guided me through the process. I have been very fortunate everyone involved with Nicky had experience and was able to provide me with great resources. I also didn’t wait for things to happen; I made them happen. I started the process of getting a diagnosis soon after that meeting with Ms. Marchese.
When I called CHOP (Children’s Hospital of Philadelphia), it was a 10 month wait for an appointment. I was going to learn everything I could and latch on to anyone who could provide any guidance in those 10 months. I called every 1st of the month to check on any cancellations, making friends with the receptionist who immediately recognized me and thankfully never showed any annoyance accepting my calls. With a little bit of patience and diligence I was able to get an earlier appointment with CHOP and a diagnosis which made advocating for him at school much easier.
With guidance from his teacher, his pediatrician (whose own son was Asperger’s) and working with Foundations Behavioral Health Services in Doylestown, within just a year, I received a medical diagnosis from CHOP, MA (Medical Assistance) benefits, wrap around services, which included a behavior specialist 3x a week, a speech therapist and a full IEP with support at his school. They say it takes a small village, and it did. We called this village, TEAM NICKY.
Nicky continues to show us he is capable of anything he puts his mind to. In 4th grade, he took a lead in his school play. Never in a million years would I have imagined he would sing and dance in front of audience of over 400 people! Just only a few short months ago, Nicky started his own little business called Birthday Lawn Bandit, where he decorates lawns, he calls raiding for special occasions.
Since May, he has raised enough money to buy his own gaming computer, donate over $500 to his favorite charities, and donates raids to kids whose parents may not be able to afford one. The BLB, as he also likes to be referred to, has raided over 180 lawns in only a few short months: that’s over 4,000 balloons, 100 t-shirts, 100 sidewalk chalk sticks, 10 helium tanks, and a whole lot of smiles!
Nicky has been recognized by his community who continues to give him unwavering support. Congressman Brian Fitzpatrick even honored him with a state flag and spoke on the congress floor in his honor!
Our family has been extremely fortunate to be part of an inclusive community that has always been supportive. Nicky has been able showcase his skills and talents that he otherwise may not have. The kid that struggled with social cues, hardly could get a word out, so often, struggling to express himself, is today, a confident, intelligent, outgoing, and a leader among his peers.
I would tell any parent who has a child diagnosed with Autism, it’s going to be okay. Autism is not a death sentence. Be your child’s biggest advocate, but also know his/her limitations. There are so many resources for you. Use them. Don’t be afraid about being labeled. Give yourself a break and there is no wrong or right answer. It’s what is right for you and your family.
I truly believe Nicky’s Autism has never not been a deterrent but instead a special gift, one I have embraced and are I am truly grateful for.
Sara C., The BLB’s Mom and Secretary!
Visit the Birthday Lawn Bandit on Facebook or watch the video below where Congressman Fitzpatrick honors Nicky for his community work.