The Wrong Word

By an Anonymous Parent

“I don’t suffer. I just have hearing loss. And, in fact, I’m thriving.”

A few weeks ago, it was time for my child’s annual 504 Plan review. Having several years under our belt, we felt our experience, knowledge and relationship with her 504 team would ensure a positive outcome and experience. Our requests for accommodations were reasonable and had always been met before.

What we didn’t expect was a new word that would be used during this meeting. A word we didn’t expect to hear, and quite frankly we weren’t prepared to address it because it caught us all off guard.

“We are here today because you, [insert name of student], suffer from hearing loss,” the administrator said. The word “suffer” was repeated a few times in those first few minutes. I sat in my chair frozen, my child sitting next to me staring blankly across the table. My child had participated in these meetings for nearly ten years, from the moment she was diagnosed as hard-of-hearing. Having her realize, from an early age, that her disability entitled her to services and supports and that she had a voice in those decisions was something my husband and I felt strongly about. My daughter was not a stranger at the table, but an active participant, especially as she matured in higher grades. This professional’s choice of words was unexpected. I drew a blank on what to say in response. I said nothing. 

As the meeting moved forward, I could feel my child’s silence next to me. The six of us weaved our way through the 504 Plan, making edits along the way for the following year, but my child remained quiet. Reserved. Only chiming in when asked a direct question.

Later that day, I inquired about what she thought about the meeting. I suspected she might comment on how I talked too much, or how she thought the meeting was too long. But, instead, she paused and shared her honest and open feedback.

“It was fine, but there’s something I really didn’t like. I didn’t understand,” she said. “The 504 Plan facilitator said I suffer from hearing loss. He’s wrong, I don’t suffer.”

I sat back, stunned. My heart filled with guilt for not having spoken up earlier in the meeting room.

She added: “I don’t suffer. I just have hearing loss. And, in fact, I’m thriving.”

Looking back, I am amazed at how much we are all still learning at this phase in our journey. Just when we think we know so much and feel ready for anything; we’re not always ready. We don’t always know what to do or what to say. We find ourselves facing circumstances, even simple circumstances that we didn’t expect–and our ability to think on our feet leaves us just when we need it most.

I am grateful that my child and I saw this as an opportunity to grow together. To discuss why she, and so many other deaf and hard-of-hearing children, aren’t suffering but thriving because they were diagnosed early and received the services and support they needed to achieve greatness. I am grateful that my child with a disability sees herself as capable of anything, because she is capable of anything. And, I am grateful for good-intentioned professionals who make mistakes and who are open to conversations and feedback well after meetings take place…because sometimes that’s how it happens.

We try, we learn, we grow, and we move forward – taking every life lesson with us. This was one of them.   ~

Editor’s note: The identity of this parent is kept anonymous out of respect for the ongoing relationship with the team and district.

H&V Communicator – Winter 2019