The first time I explained my son Jack had autism, we were at the Bronx Zoo. He was about eighteen months old. I was pregnant. The zoo was crowded. And he took every opportunity to run away from me. When he wasn’t running into throngs of people with their own little kids, he was trying to grab half-eaten pretzels from the garbage cans, or snatch napkins off the hotdog carts. He was terrified of the animals—all of them, the doe-eyed deer in their green valleys, the multicolored birds peering down…
My son, I’m waiting to read you your nightly story, like I do every night, like I have for years. You still play with Thomas The Train and watch childlike videos. You still need to be bathed just like a young child. I wonder if I’ll do this forever or if one day you’ll grow up. You see, you are actually all grown up physically. You’re a grown up 20-year old man but cognitively…well, that’s a different story. I know some things will change, but what I don’t know is…
My mom and dad raised three children. My sister, Lauren, was the first-born, and then came my brother, Aaron, and lastly, me. My sister has Asperger’s Syndrome, which is a high functioning form of autism, diagnosed at the age of four. Like any daughter, there are things I wished my parents did differently. I wished they never got a divorce, I wished they worked together instead of spent their days fighting, and I wished they were able to take a step back from autism so that they could evaluate our…
This week is my birthday. I will be 27 years old. Almost 30 as my best friend keeps jokingly reminding me. I’ve always loved birthdays. I used to celebrate for the whole entire month. This year though, the thought of my birthday can bring me to tears. I find myself wondering, where has all of the time gone? When I got divorced, at 22, I was just a kid. I remember thinking, I have all the time in the world. I don’t need a man, anyway. I can do it all…
It could be worse. I have repeated these four words while laying in bed crying, feeling helpless over my son’s recent autism diagnosis. All my hopes and dreams for his future no longer existed. What’s going to happen? I can’t explain the feeling that sets in, your child has a life long disability. The feeling of panic took over me. Some days consumed me. The sleepless nights and anxiety take a toll. It could be worse, he is healthy. Will he be a victim of discrimination, taken advantage of, mocked or hurt?? …
There’s a saying we’ve all heard before ‘behind closed doors’. It alludes to not knowing the entire story since there is something being handled in private. I suppose being the parent of a special needs child is much like that. We tend to lead two very separate lives. And sometimes we do it so efficiently and effortlessly so many are none the wiser. It doesn’t happen overnight. We slowly seem to adapt and overcome, but are we? For years my husband worked at a local prison that was close to…
You don’t understand how hard it is to let go of my child’s hand in the morning and hand him over to you. You don’t know how long it took me to make this decision…to let him ride the bus. Some may say it’s brave or courageous to trust another with your child’s life. I sometimes think it can be daring but also really unwise. In today’s world we live in, we must worry about things that could happen. Yes, I understand it’s hard for most parents to watch their…
Are you walking into a new world of special needs parenting for the first time? Are you a few years in and finding things hard to manage right now? Or are you the parent who has walked this path and is now looking ahead at what services are there for your child’s future? Here are some gems of advice that I have received from others who have walked this path alongside me, before me, and some of my own. Advocacy Can Come in Many Forms If you are the loud…
I think about the beginning sometimes. When I first heard the word autism. It was in a lunch-and-learn at the nonprofit I worked at. I was eating a sandwich, minimally paying attention, when the woman started describing signs of autism in toddlers. As she ticked off a list of traits, I did everything I could to keep my cool. The only sign of my internal panic being the flush that turned my cheeks and neck a deep red. I could feel the heat radiating from my face. She was describing…
To the woman I saw crying in the parking lot of the OBGYN’s office this morning: I saw you in the waiting room first. Maybe even before you saw me. You were sitting to my right. I noticed you because your partner was sitting next to you and I haven’t seen a man in the waiting room since before covid. Something that has been hard honestly. Having a support person at baby appointments, whether it be your husband, boyfriend, mom, dad, whomever, is comforting. Looking back though, seeing you with…
