I owe an update. In case you missed what I am referring to, check out the following post.
After I wrote that post, I did three things. First, I completed the online survey from our pediatric office about our experience/the care we received. I rated our experience/care a 2 out of 5. I think my rating kicked off an automatic reply because the next question was if the clinic could follow-up about my experience; however, disappointedly (and spoiler alert!), I have not been contacted.
Second, I wrote a message to the provider directly. I felt it was very important that he heard the message from me. Here's what I wrote:
Lastly, upon doing the aforementioned items (and not hearing back from either the clinic or the provider!), I placed a call to the clinic. I asked to speak with the business manager. The receptionist was weary to push my call through but I was able to connect with her. This part was not easy. My voice was trembling, my hands were shaking. But then I remembered my purpose and my goal - to educate others and to advocate for my daughters. This was going to be a conversation, not a roast. It would have been very easy to "go off" on the business manager and get very emotional. Instead, I stated the facts:
My daughters have hearing loss
We were in for a sick visit and had an unpleasant experience with one of the providers
The provider said to my youngest "you have a funky ear too"
I described how this word can make one feel different and that I don't ever want my daughters to feel different because of their hearing loss
I also told the business manager I believe there was good intent; however, there are more appropriate ways to address a patient with hearing loss. I emphasized how hard I work to preserve my girls' confidence with their hearing difference, and it can only take one comment to shatter that. And then with a little emotion, I shared how disappointed I was that a medical provider (let alone one in pediatrics!) would make a comment like that. I said that we would recover, since I was able to quickly intervene, but I didn't want this to happen in the future to other families.
Then I offered education. I feel like this was a very critical point. I told the business manager that perhaps the provider was not familiar with how to address patients with hearing aids and that I would be happy to share with her (and him!) better ways to respond. She did not take up my offer unfortunately. But bottom line is that I offered. I cannot change people or their behavior. All I can do is my part, which is to educate and advocate, and I feel like I did that.
Later that afternoon, I received a reply from the provider. (The business manager said she was going to talk to him that afternoon, and it seems as though she did.) Here is our exchange:
It would be easy to critique his replies and sure, maybe I did a little internally but that's not the point. The point is that my message was received. I feel that I accomplished my mission of educating others about hearing loss and was able to advocate for my girls. It is out of my control if he changes his wording and his behavior around other DHH patients, but I did my part. And I feel really proud and happy about it.
Speaking up does not come easy for me. Before I had Lainey, I was the type of person that could be served the wrong meal at a restaurant, and I would just eat it. I would not speak up at all. I know God wanted me to be on this journey with my girls - for multiple reasons. I believe some of it is for my own personal growth, like learning and practicing this new skill of advocacy.
I also believe that my conversations may have not been as effective if I decided to be more emotional about it, and go on the attack. It is not easy, but I am learning to have thick skin in this journey with my girls. If I don't and respond with emotion, my message gets lost. You can't hear a message with a lot of noise. And you certainly cannot promote change if someone is on the defense. I think deciding to have a conversation and to respond with empathy and education vs be on the attack and emotional helped this situation become successful.
I know this is just the beginning. I know there will be more of this. I also feel like I have to pick and choose my battles. When we were at Urgent Care with Millie this past weekend, I got caught off guard when the nurse asked if Millie had any other medical concerns or if it was "just the hearing problems". I did not like the sound of that at all. I was really caught off guard, and we moved on. I know there was no ill intent and I honestly feel like most of society doesn't know how to speak/respond to people with differences. So that's where my job comes in - our society needs more education around this! If I was offended by every little thing people said about the girls' hearing, I would never be able to do that mission.
So just like the girls, I am learning. It's called a journey for a reason. I won't do everything right. But I will always fiercely protect my girls. Lainey and Millie, it is an absolute honor being your Mama and on this journey with you!! I love you so much!! Love always, Mama Bear
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