As a parent of a special needs child, part of our job is to be their voice.
From the time they are infants, we advocate tirelessly for them in doctors’ offices, educational meetings, and therapy appointments.
I’d gotten so used to that role that it threw me for a loop when my daughter started to get upset at a Dr. appointment about a year ago because she didn’t like the fact that I was talking about her when she was sitting right there.
It hit me like a ton of bricks.
I remember that feeling of sitting in appointments with my mother while she and the doctor had a discussion about me, and it wasn’t fun. I remember feeling confused and a little slighted, wondering why he didn’t just ask ME those questions.
So, I made a promise to myself that I would make a point to include her in the discussions during appointments in whatever way I could.
Since she is mostly nonverbal, it has been a challenge and an adjustment trying to find a balance between letting her communicate for herself, and still getting across pertinent information.
She is great with yes/no questions, but the open-ended ones are harder for her to process and answer.
Now when questions about her are directed at me, if I think she is capable of answering, I’ll redirect the question to her. Even if I don’t think she would quite know how to answer, I’ll try not to talk “over” her.
Instead, I’ll try and loop her into the conversation somehow. “I’m just telling the doctor about how well you’re doing on your medicine…remember how you take a little more now than before?”
It has made a huge difference, and I can see that she takes pride in being able to communicate; however she can.
Sometimes she is fine with letting me do the talking, but I have learned to keep a small notepad and pen on hand in case.
As she gets better and better at writing simple sentences, the more she wants to contribute to the conversation.
Many times, she wants to talk about something completely unrelated to the appointment. Many times, she just wants to contribute somehow and be heard.
At her last psychiatrist appointment, she told the doctor all about her recent trip to the Dollar Store and all the cool things she found there.
After she was done, she sat there and contentedly worked on an activity book she had brought while the doctor and I discussed her medication.
It’s definitely not easy, because the “mama bear” in me wants to just jump into the conversation sometimes.
But it’s also amazing to watch her gain that tiny bit of independence and find her voice, because she deserves to be heard.