“Hello, Mrs. Summers. Is Mia toilet trained? Do you need a cup for her sample for the physical exam today?”
My initial reaction was to think, “Of course she is toilet trained! She’s 15 years old, and this is the same office that has cared for her since birth. You’ve known her all this time!” Yet, I held back my frustration, forced a smile, and replied, “Yes, she has been since she was 3. Thankfully.”
“Oh, of course! Sorry about that. You’re truly amazing.”
Putting on my best smile, I took the cup and guided Mia, who towers over me now, to the restroom to demonstrate her ability to use the cup. After we finished, we left the cup on the shelf for the lab.
We had barely settled in the waiting room when a new face appeared, called Mia’s name, and ushered us into the exam room.
The physician’s assistant was a young woman with a friendly demeanor. In a professional tone, she asked me to help position Mia for her eye exam.
Trying to embody the “Cool Special Needs Mom” I aspire to be, I said, “Alright, Mia, let’s check your eyes.”
“She needs to cover her left eye,” the assistant instructed.
“Okay, Mia, cover your left eye. Great job!”
“Have her start reading the first line on the chart, where my finger is.”
“Sure! You can speak directly to Mia; she’s friendly. Do you bite, Mia?” We all chuckled a bit. I turned to my daughter, “Sweetheart, can you tell me the letter she’s pointing at?”
The process continued, with the assistant asking me questions to relay to Mia. Despite my efforts, I felt the connection was lacking, and I sensed everyone was relieved when she completed her tasks and left us to wait for the doctor.
Let me clarify: I don’t believe the assistant was being unkind. She was simply doing her job, and I realize that Mia can be a challenging patient. Nevertheless, it was disheartening to see her treated as less than human.
This past year has been tough for Mia. Though her developmental delays often make her seem more like a young child than a 15-year-old, she also battles bipolar disorder. It’s unclear if this stems from her other challenges, but it’s her mental health struggles that have caused the most turmoil.
Mia has been experiencing more frequent manic episodes recently. She’s been tearing her clothes, disassembling her shoes, having nightmares about monsters, and staying so fearful that sleep eludes her. Additionally, she has been emptying shampoo bottles faster than we can buy them. I won’t even go into detail about our deodorants, but let’s just say our bathroom grout has never smelled better.
We’ve searched every hiding spot for these products and have resorted to storing them in my husband’s car. When we ask Mia why she behaves this way, she simply says she doesn’t know. I’ve even cut fabric for her to shred as a distraction. When she started “remodeling” her school bus seat, I began covering shoeboxes in duct tape every morning for her to pick at instead.
We’ve lost count of the dresses, leggings, shoes, and toiletries that have fallen victim to her episodes. It’s been days without sleep for her, requiring numerous adjustments to her medication.
I’m exhausted and overwhelmed. I need support for Mia.
If I can’t get that right now, I at least want the professionals who interact with her to treat her with the respect she deserves. When I encounter someone, like the physician’s assistant at the physical, who fails to see the remarkable individual behind the challenges, it feels like a knife to my heart. It reinforces the feeling that I am her sole protector in a world that may never fully understand her, and it’s up to me to ensure she receives the dignity we all deserve.
At the end of the day, Mia is just a young girl navigating a complex world. Her disabilities make her journey harder than most of us can imagine. All I can do is guide her and hope that she encounters more people who respect and acknowledge her as a person rather than overlook her.
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Summary:
The journey of parenting a child with special needs can be filled with challenges and misunderstandings from others. This article captures the emotional struggles of a mother as she advocates for her daughter, Mia, who navigates life with developmental delays and bipolar disorder. The author emphasizes the importance of recognizing the individuality of children with special needs and the need for empathy and understanding from professionals.