I’m that mom who didn’t know.
Our daughter was diagnosed in 2017. I spent the first few months questioning everything. My husband says that I spent the first three years in denial. And maybe I did but I just wasn’t aware I was doing it.
Looking back, I remember when she was a year old and we joined Gymboree. That was going to be where to meet other parents and have her socialize.
But the entire time we were there, she climbed up the slide and ran away. While the other parents mingled or sat for circle, my time was spent chasing her through the gym. It got awkward when her climbing and inattentiveness got on people’s nerves.
We quickly canceled our membership after a few months because neither of us ever wanted to go with her anymore. We dreaded it. I thought I was being a horrible mother and felt guilty. But I’d rather stay home and feel guilty than face all of those people every week.
I’ve tried to remember the first time I think I might have known, even though I didn’t consciously know. Maybe because I didn’t want to know. Or I had convinced myself this wasn’t happening to us, again.
I think that the first time that I noticed my daughter was different from her friends was at the park.
Our mom friends from her daycare class and neighborhood were able to talk and watch their kids play from afar. But I was running a marathon and even found myself climbing under the playground equipment after my then 2-year-old daughter.
At one point, she jumped off of the equipment instead of going down the slide, and I caught her. Thank god I caught her. I couldn’t believe she wasn’t afraid.
I was exhausted and embarrassed. What was wrong with her, I wondered?
While everyone else was chatting, I ran around the monkey bars and dodged kids on swings to make sure my unaware child did not get kicked in the face.
There was nothing social about our visit.
Even when I tried to stop worrying and let her be, it led to me running into the street to catch her.
I got so sad about it at one point that I basically stopped going out. I made excuses whenever someone asked me to go anywhere. I didn’t want to chase her and resent her behavior.
The only place I ever felt at ease was at our local splash pad because it had a fence and a gate. I could watch her from outside and actually talk to another mom. But it was only open for ten weeks out of the year.
As our kids got older and the others weren’t flighty like my daughter, I began to acknowledge that something was off about her.
Her behavior made me so angry. I dragged my husband to outings and birthday parties so that he could chase her and I could socialize. But that felt awkward too and caused arguments between us.
There were countless times when I had to leave her tricycle behind and carry her home surfboard style. When she would leave her bike and dart into the street randomly. When she would throw it because she couldn’t steer and pedal at the same time and her frustration boiled over. Times when I had to hold it together in front of people because I wanted to cry.
All I wanted was a half-hour to be able to talk to the other moms. To stop running. To stop apologizing for her strange behavior. To stop disciplining her for running away which in turn punished me because we had to leave.
The hardest thing for me to accept was that she did better in a quiet space for a playdate. Going to bounce houses and parks was hard because she barely acknowledged the other kids. It was hit or miss.
But if they were in our living room she had to acknowledge them. If we went to a public place, she ran around like a crazy person.
Some kids she played with perfectly and some kids she didn’t.
I don’t know why any of this wasn’t a red flag to me at the time.
I remember a time when my mom called and wanted to take the kids to iPlay America near her house.
I ran in circles across the entire place.
The arcade lights and the sounds, rides, the noise was so overwhelming.
I was exhausted.
Tired of running.
It was another place I had to leave while carrying a screaming child out in a lock hold so she couldn’t claw me, kick me, or bite me.
I remember being so frustrated with her when she threw herself on the floor and kicked me that I smacked her. She didn’t even cry. It was like she was having some out of body experience where she heard nothing and felt nothing.
That was long before I knew about sensory meltdowns.
We have come such a long way since then. She hasn’t run into the street in a very long time, she listens at the park now but she still can’t ride a bike. Sometimes I still get upset because she is almost five and she wants to ride it so bad but doesn’t have the motor skills to steer and pedal simultaneously.