What’s in a Name? What’s in a Diagnosis?
Amanda Meneses, RN, BSN, is a writer, practicing registered nurse, and proud mother of two. With a career in nursing and a knack for writing, she aims to help others by drawing on her life experiences. For Amanda, writing is therapy, as are road trips with her family and finding the fun in everyday life. She lives in Baltimore, Maryland, with her husband and kids.
I remember when we finally got our daughter’s diagnosis—ADHD-inattentive type. We had seen signs and worked through the challenges for years. We pursued the evaluation for months. And still, having the paper in hand and the words in print, it stung a little. My oldest, my first child, had a diagnosis.
As parents, we make decisions for our children—and we base those decisions on their best interests. We want them to feel validated, not ostracized. We want them to feel understood but not excused. We want them to know themselves but not feel defined by a label. So, we made the decision when she was in second grade, not to tell our daughter about her diagnosis. We told her that she had “focusing challenges” and that she “learned differently” than other kids. We assured her that she would go as far as everyone else; she just had to work for it. Electing to start with therapy instead of medication at that time, we explained that her therapist would help her learn new ways to organize and to give her someone else to talk to. We didn’t want her to feel as though there was something “wrong” with her, so her diagnosis — ADHD — was our secret and learning to focus was her challenge.
She made gradual improvement in the next year and a half. With a 504 plan in place, and teacher conferences and accommodations in full force, we began our journey upward. With that journey, I started a new practice. Every year, on the first day of school, I e-mailed our daughter’s teacher : “Hello, my daughter is in your class this year and I want to tell you a little bit about her. At first impression she will not strike you as being at risk academically and she will, as a result, fall through the cracks. So, I’m writing to you to tell you about her ADHD and what she and I need for her to be successful in your classroom and in academia as a whole.” The letter proved, over the years, to be incredibly insightful and effective in my child’s success.
In fourth grade, however, the e-mail led to a new level of insight and success. When I wrote the letter that year, I didn’t specify that our daughter was unaware of her diagnosis. I was so focused on her needs that I didn’t explain that she had never heard the term “ADHD.” When she came home that first week and said, “Mommy, Mrs. [Teacher's Name] took me aside today and talked to me about my ADHD,” my stomach fell. I held my breath, my mind swirled, and I prepared to explain myself. I braced myself for the trauma that was sure to ensue with her knowing about her diagnosis.
But her little fourth-grade self never skipped a beat. She told me how her teacher’s sister had ADHD and which classroom accommodations she would have. She showed me the little fidget toy her teacher gave her to use when she needed to move and told me about the reading nook she could escape to when she needed to get away for a few minutes. But mostly, I noticed, she said “My ADHD” over and over and over again. “You know Mommy, that’s the name of my focus challenge. You know how it’s hard for me to pay attention—it’s because I have ADHD.”
In those few short minutes I learned a lifelong lesson. I didn’t have to save my child from the name of a threatening diagnosis. She already knew she was different. She was living the challenges. In keeping the name, the diagnosis, a secret, I wasn’t saving anyone. Our adult secret had been screaming at her in her head for years. That monster that had haunted her every day now had a name. And the name was all she needed to separate her self from her disability .
In one short afternoon, everything she had fought for during the last three years was explained by a teacher who didn’t know any better, but who cared.
“It’s because of my ADHD, Mom.” Who would have known that a name would be the key to her understanding and that a diagnosis could actually be so liberating.