I get sad thinking about 2018 and how it doesn’t look like much is going to change for the better this year. I’m hoping it does and will do everything in my power to make it better but I can only change me, not anyone else.
It started yesterday morning when it truly hit me how isolated from the world I have become when I had not a single Happy New Year text or message from anyone except my mother. It wasn’t intentional that I hadn’t messaged anyone right away because I had fallen asleep. But it just felt bad to see how left-behind I have become.
My existence has become so insignificant to anyone except my daughter. I have lost my entire identity outside of her. This is usually the part where people stop listening because it makes them uncomfortable. My current best friend is 4-years-old and 3-feet-tall. I’m also her best friend because most people can’t stand her. That sounds insane, right? But it’s true…people can highly dislike a beautiful and funny little girl who is only 4.
I’ll start with her most recent hater: Her Occupational therapist. She has been going to OT on the weekends for about a year and a half. There were never consistent issues or meltdowns there until recently. I could see the disdain in the woman’s face when I walked to the back where parents aren’t permitted because I heard my child screaming. She was being restrained in a chair as the woman held her arm tightly; her face was filled with frustration, the same look I get when I’ve had enough. I held my daughter’s hand and directed her to the table, she sat and I stood behind her until she calmed down less than a minute later and then we went home. It surprised me that someone in that line of work didn’t know how to manage a child like her when her OT at school never complains. She is a younger woman who is smart and sweet and appears to adore Ally, and Ally adores her in return. The professionals in her life are so inconsistent.
Next is her private Speech Therapist who clearly dislikes her. We gave her tips on how to get Ally to comply and it has worked thus far but when therapists look less than eager to greet your child upon arrival, you know something is up. It’s even clearer when they avoid giving you any kind of update or info after the session. And again, her Speech Therapist at school doesn’t complain and has my daughter’s respect. It surprises me when people who work with children on the autism spectrum every day can dislike them. But then again it doesn’t because our temporary BCBA who covered her regular BCBA’s maternity leave last year hated her as well. Her biggest complaint was how much more work it was to work with a child so intelligent and independent (yeah, what?).
More of Ally’s haters include a large group of people: five daycare center’s entire staff, directors, and owners. Each and every center that expelled her did so with a glowing smile as if ridding their school of Ally was winning the lottery. The last daycare was the most detrimental to her since it had been the only place she actually enjoyed going to (she even had an aid). She still asks regularly if she can apologize and go back there. While this empathetic journey has flourished, she doesn’t yet understand that the world isn’t as simple as saying you’re sorry and everything goes back to the way it was. She is too young to understand karma but I’ll explain it to her someday–that karma is coming for them all.
Most staff and parents of other children from two dance centers and gymnastics also hate her. They made sure to make me aware of it during the short time we attended those activities. The child who dances to the beat of her own drum isn’t even cute at 3-years-old anymore since everything is so serious and competitive nowadays.
The characters at her second and third birthday parties complained about how annoying Ally was. They said she wanted too much attention. Even some of the cast members at Disney World complained when she cried and melted down in line (and yes, their new Disability Access Pass is complete bullshit when toddlers with autism are expected to wait patiently in hour-long lines without losing control and upsetting the people around them).
This list keeps going and includes some of our neighbors, doctors, strangers in public places, bus drivers, “friends,” and the daycare mom who came to her birthday party last year just to yell at me.
We feel so alone all of the time and I don’t even hide it. Even when I put out a branch and say it, it feels like people aren’t listening. I blatantly said a few months ago that my daughter had no one to trick or treat with and friends just kept talking as if they didn’t hear me, or it made them uncomfortable and they didn’t want to acknowledge me because they, like everyone else, didn’t want to be around us. It feels like everyone expects us to just disappear or stay home forever. I’m not supposed to talk about my kid. I’m supposed to pretend our lives are perfect and engage in short fake conversations, or be alone. Well, I’m alone because my best friend needs me and I’ll always choose her over everyone, even when it shouldn’t be one or the other.
For 2019, I can only hope we’re not as alone and try to befriend more compassionate people, because I’m not going to put up with people hating my daughter any longer.