By: Laura Thompson
“Hello, Ms. Thompson. Is Chloe toilet trained? Do you need a cup for her sample for the physical exam today?”
My face betrayed my frustration. “Of course she’s toilet trained! She’s 15, and you’ve known her since birth!” Yet, I kept my composure, smiled, and replied, “Yes, she has been since she was 3. Thankfully.”
“Oh, right! My apologies. You’re truly amazing,” the assistant said, flashing me a sympathetic grin.
With my best “Cool Special Needs Mom” demeanor in full effect, I took the cup and led my daughter, who is now towering over me at 5’9”, to the restroom. After a quick bathroom trip, we placed the cup on the shelf for the lab.
Within moments, a new face appeared, calling out Chloe’s name and ushering us into the examination room. The physician’s assistant was a young woman with a friendly demeanor. In a professional tone, she asked if I could help get Chloe ready for her eye exam.
“Sure! Come on, Chloe, let’s do the eye chart,” I said, trying to project confidence.
“She needs to cover her left eye.”
“Okay, Chloe, cover your left eye. Perfect!”
“Have her start reading the first line on the chart where my finger is,” the assistant instructed.
“Go ahead and talk to Chloe; she’s friendly,” I encouraged, hoping to ease the tension. “Do you bite, Chloe?” We all shared a laugh, and I turned to my daughter. “Honey, can you tell me the letter she’s pointing to?”
The assistant directed our interaction, asking me to relay her questions to Chloe, and I did my best to include Chloe in the conversation. I introduced the assistant to Chloe, saying, “This is Maria.”
“Hi, Maria,” Chloe said, beaming.
Maria responded warmly, and I felt a glimmer of hope that perhaps she understood how to engage with Chloe. After handing me a gown for Chloe to wear, she left, saying she’d return shortly.
When Maria came back, she continued to ask me questions about Chloe, but despite my efforts, getting Chloe involved was a struggle. By the time Maria finished her duties and left us to wait for the doctor, I sensed mutual relief.
I truly don’t think Maria meant any harm; she was just doing her job. Still, watching my daughter being treated like she was invisible stung deeply. I felt as though I was the only one standing up for Chloe in a world that often overlooks her, enforcing the idea that she deserves respect and dignity just like everyone else.
Chloe has had a challenging year. Though she’s physically a teenager, her developmental delays make her function more like a 4-year-old. This year has been particularly tough; she experiences frequent manic episodes associated with her bipolar disorder. The turmoil manifests in various ways: she’s been shredding her clothes, having nightmares, and emptying shampoo bottles at an alarming rate. Our bathroom is the fragrance capital of the neighborhood, thanks to all the deodorant she’s been “redecorating” with.
We’ve tried hiding the shampoo and deodorant everywhere, even stashing them in my husband’s car. When we ask Chloe why she does this, she often shrugs and says she doesn’t know. To redirect her, I’ve provided her with boxes to tear apart instead of her clothes.
We’ve lost countless dresses, leggings, and shoes. I’ve adjusted her medications repeatedly, and the exhaustion is palpable. I’m desperate for help for my daughter.
I wish for professionals interacting with Chloe to see her as a person first. It’s heartbreaking when someone like Maria fails to recognize the vibrant girl beneath the challenges. I want to ensure that Chloe experiences kindness and respect from everyone she encounters.
At the end of the day, Chloe is just a girl navigating a world filled with confusion. Her disabilities amplify her struggles, which is something most people will never truly understand. My role is to be her advocate and guide, hoping she encounters more compassionate individuals than those who overlook her.
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In summary, my journey as a mom of a child with special needs comes with challenges, but it’s also filled with love and hope. I strive to ensure that my daughter is acknowledged, respected, and treated with dignity by everyone she meets.