I need to be real for a minute. It’s not that I don’t want to be around you. It’s not that I don’t like your kids. It’s not that I don’t love watching your kids grow up from afar. It’s not that I’m not happy for you. It’s just too hard. It’s too hard to see your children developing at a normal rate. There’s no speech and language delay. There is no vocal stimming. There are no show stopping meltdowns. You have kids who have a typical path to follow.…
From as far back as I can remember, Skyler has always expressed himself by using his hands. The most common of his ‘gestures’ is open hand smacking of walls, cupboards, doors, counters, people, etc. Basically, if he could reach it, he would hit it. Hair pulling was his second favorite method of contact. Oddly enough, it often wasn’t done to gain the attention of the person on the receiving end of his torture, but simply because he liked the texture of the strands of hair between his fingers. What began…
There are many things that you start to realize when becoming a mother to special needs children. You learn all in the ins and outs of your child. You learn how to survive from day to day. You learn all the official terms and acronyms…..IEP, BCBA, PCA, TSS, OT, PT, self-contained, inclusion, etc. You start to realize some things that were not even thought twice about, earlier in life. I started to see really quick how the world views people in the special needs community. I see how the world…
My son’s birthday is this week and I am planning a party for him. He will be 14 years old and we are having a Sesame Street themed party with an Oscar the Grouch cake. The party guest will be me, his dad, his younger sister, and his grandmother. That is his limit. More than four very familiar people will overwhelm him. This is what birthdays with severe autism and developmental delay look like for us. When my son was born, I had several friends who had baby boys around the…
When we are out in public, I don’t worry about how my son will act. I don’t worry about his struggles or mannerisms. Or his uniqueness. Because I know exactly who he is and how he is going to behave. And that he is learning and growing. I know he will flap his arms in pure joy. I know he will run. And sit. And maybe feel the cool of the cement with his cheek. I know he will squeal. And hum. And laugh. I know he will wave to…
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?? …
