“Hello, Mrs. Johnson. Is Ava toilet trained? Will you need a cup for her to provide a sample for the checkup today?”
My face involuntarily showed my frustration, as I thought, “Of course, she is toilet trained. She’s 16, and you’ve known her since birth!” However, I kept my calm and replied with a smile, “Yes, she has been since she was 4, thankfully.”
“Oh, right! I apologize. You really are a saint.”
I managed a polite smile, took the cup, and led my daughter, who is now towering over me, to the restroom to demonstrate her ability to use the cup. After we finished, we placed it on the shelf for the lab.
We had barely settled into the waiting area when a new face appeared, called Ava’s name, and guided us to the exam room.
The physician’s assistant was a striking young woman. In a professional tone, she asked me if I could help position Ava for the eye exam.
Doing my best to embody the “Cool Special Needs Mom,” I enthusiastically said, “Alright, Ava, let’s tackle the eye chart.”
“She needs to cover her left eye.”
“Okay, Ava, cover your left eye. Great job!”
“Now, have her read the first line where my finger is pointing.”
“Sure. Feel free to talk to Ava; she can understand you. Right, Ava? Do you bite?” We shared a light laugh. I turned to Ava, “Sweetie, can you tell me what letter she’s indicating?”
We continued this way, with the assistant asking me what to relay to Ava, and I repeated her questions, until we completed the eye and hearing tests.
I reached into my bag of strategies, aimed at helping others understand Ava better. “What’s your name?” I asked.
“Lily.”
“Ava, say hi to Lily.”
Ava looked up, smiled, and said, “Hi, Lily.”
With that, Lily returned the greeting. For a moment, I thought maybe I was making progress with the assistant as she led us to the exam room and handed me a gown for Ava before leaving to fetch the doctor.
When Lily returned, she continued to ask me questions about Ava. I tried to pull Ava into the conversation, but my efforts were largely unsuccessful. I sensed a collective relief when Lily finished her tasks and told us to wait for the doctor.
I want to clarify that I don’t believe Lily meant any harm. She was simply doing her job. And truthfully, Ava isn’t the easiest patient. Yet, I was reaching my limit, and witnessing my daughter treated as if she were less than human was disheartening.
This past year has been challenging for Ava. Despite her developmental delays, which cause her to behave more like a young child than the 5-foot-9 teenager she is, she also battles bipolar disorder. The impact of this illness has been particularly disruptive in her life.
Recently, Ava has experienced more manic episodes—she’s been tearing her clothes, disassembling her shoes, having nightmares, and has developed an intense fear of imaginary monsters. Sleep has become elusive for her, and despite our best efforts to store toiletries, she finds ways to empty shampoo bottles and deodorants faster than we can purchase them!
When we ask her why she engages in these behaviors, she simply says she doesn’t know. I’ve provided her with materials to shred, and when she began “decorating” her school bus seat, I resorted to wrapping shoeboxes in duct tape for her to pick at instead.
The damage has been significant: seven dresses, five pairs of leggings, countless bottles of shampoo, and numerous sticks of deodorant. Sleep deprivation has become a norm, and we’ve had to adjust her medication several times.
I’m exhausted and overwhelmed. More than anything, I want someone to help Ava. At the very least, I wish professionals who interact with her would treat her as a person deserving of respect.
When I encounter someone like Lily, who fails to see the remarkable girl beneath the disabilities, it feels like a dagger to my heart. It reinforces the reality that I am her strongest advocate in a world that often overlooks her, denying her the respect and dignity that everyone deserves.
Ultimately, I must remind myself that Ava is a young girl navigating a confusing world. Her disabilities complicate her journey more than most of us will ever comprehend. All I can do is guide her, hoping that she encounters more individuals who respect her than those who dismiss her.
For more insightful resources on parenting, consider checking out this guide on home insemination techniques from our other blog, Make a Mom. Also, Healthline’s pregnancy resource offers valuable information related to this topic. Additionally, you can visit Modern Family Blog for expert insights.
In summary, it is crucial for professionals and society as a whole to recognize and acknowledge the individuality of children with special needs. They deserve to be seen, respected, and treated with dignity, just like any other child.