I received the following very sweet comment on my blog on Thursday.
"I've been reading your blog for a couple of months now. I must say that you are both a very good and a very entertaining writer. So if that medical career doesn't work out for you(which I'm sure it will), I think writing might be a good, albeit not very well paying, backup.
Anyway, I just want to thank you for your blog. It has really helped me cope during the past couple of months. While I am a long way from 15 (41 to be exact), I read your blog because one of my daughters (she's five) was just diagnosed with a mild unilateral hearing loss. Currently, she still has tons of usable hearing - her loss is at 35 db on the 2000 and 4000 Hz frequencies in her right ear, with the two lower speech frequencies still testing at 10 db. Her left ear tested at 10 db across all speech frequencies. So I feel fortunate that she still has so much hearing, and I hope and pray that her hearing remains stable.
But as you know, that's pretty hard to predict even with all of the anxiety-inducing testing that accompanies a SNHL diagnosis. So your blog has shown me that no matter what happens - even if she loses most of her hearing and will require CIs, she will still be able to succeed at school, have lots of friends, and have great aspirations like becoming a doctor! So thank you for that - it means a lot to a scared mom. I would also appreciate any advice you can give me on how your mom has helped you over the years cope with your hearing loss aside from just being a great mom and advocate for you. I'm new to this, and I appreciate any advice I can get.
I'm going to keep reading your blog - I learn a lot about hearing loss issues, and it's just wonderful to get a peak into the psyche of a 15-year-old girl who loves her life and looks forward to a great future while dealing with hearing loss, CIs, and the trials of being a teenager in general.
All the best.
First of all, thanks Rebecca!
It's these kind of comments that I really appreciate, and they make me want to keep writing. So, Rebecca, (and all you other parents) this is what my parents have done for me that believed has helped me immensely.
Teach by example
A huge part of having a hearing loss is learning to be an advocate for yourself. When I was younger (toddler age to early elementary) I was painfully shy. I never felt comfortable explaining my hearing loss or my needs to people. My mom, on the other hand, was always fiercely determined to make sure I was given equal access to everything we did in school and elsewhere. She would always explain my needs and equipment to all of my teachers, from the very day I started wearing hearing aids. While I wouldn't say a word, my mom would always make sure I was there when she had this conversation. She'd tell me that she wouldn't always be there to advocate for me, and that if I didn't make my need important, no one else would either. I listened closely to what she would say and how she would explain things, and now, when I am explaining my hearing loss to people I use a very similar dialogue that I'd heard my mom give my teachers year after year.
Don't lower your expectations or place restrictions
My parents have always told me that as long as I did my best, they would be happy with me. However, they did not have any lower expectations for me than my older (hearing) sister, and never really let me use my hearing loss as a crutch or excuse to not do well on something. (Unless, of course, it was due to me not hearing the information, which would bring me back to #1.) They also never told me I couldn't do anything because I couldn't hear. For example, when I started middle school, we had to choose whether to do band, choir, or orchestra. I changed my mind three times (I can't imagine how different things would be if I had chosen choir!), but my hearing loss played a minimal factor in this decision. I was never once told by my mom, "Maybe you shouldn't take the violin-what if you can't hear it?" The same was true when I had to decide when to take a foreign language (starting in 7th grade or 9th grade) and what language to take. I chose to take French, purely because I liked the way it sounded. I was never told it might be better if I waited two years so I could take ASL instead.
Open the lines of communication
One thing my mom always told me was not to be afraid to tell her anything. Whether it be a broken FM, a teacher who wasn't quite doing what she was supposed to, or a kid who just didn't "get it", I knew I could talk to my mom about it. Not only that, I knew she would help the situation. One important, I must say, is that if your child comes to you and says that her FM has been broken for the past two weeks, don't yell at her for waiting so long to tell someone. I had teachers who did this, and I would always think they'd be mad at me, so I just wouldn't tell them at all. Instead, thank your child for telling you, while nicely encouraging her to tell you sooner the next time it happens.
Follow your child's lead
When I was about five, my mom asked me if I wanted to go to some program and meet other kids who were "like me" and also had a hearing loss. I cried and cried, saying that I wasn't different than anyone else and did not want to go. My mom never pushed the issue, and I was perfectly content with not being with other who had hearing loss for years. As I got older and into my teen years, I became more aware frustrated with certain issues that I felt like my hearing peers couldn't relate to. I began asking to go to conventions, camps, and programs for other teens with hearing loss. While these weren't always the most fun or interesting things for my mom to attend, she understood that I needed to interact with others who could relate to me hearing- wise- but only when the time was right for me.
I hope this helps some of y'all out there. I will also ask my mom if she has any advice that she'd like to share.
Thanks Mom, for all you've done over the years!