Last Friday, I had opportunity to meet another CI kid - Drew! His parents both write in "Turn On My Ears" and they live in Columbus, Ohio. When I was planning my trip to Ohio, I emailed them to see if we could possibly meet. Drew's family invited me for lunch and we had a wonderful time visiting and learning about each other's hearing journeys.
Drew was born with a profound hearing loss and is the youngest child in Ohio to receive simultaneous bilateral cochlear implants. He was eight months old when he had his surgery. He just celebrated his second birthday and is a typical two year old child and so cute! Drew's parents shared with me that two years ago they knew nothing about hearing loss. When they were told that their son failed his newborn hearing tests, they had to take a crash course in learning about hearing loss and find a way to help their son hear. Because they spent so much time with doctor appointments, dealing with insurance, and taking care of Drew's hearing health, they felt like they missed the "normal" things of his early life. For example, they don't really remember when he rolled over for the first time, slept through the night, when he started crawling, when he started teething, etc. Drew also has an older sister, Avery, who is a sweet and active three year old! Avery loves to talk and is good therapy for her younger brother. There wasn't a quiet moment in their house until the kids went down for their naps!
Drew playing with his new car
Like Ethan's parents, Drew's parents are constantly dealing with issues relating to Drew's hearing health - with audiologists, health professionals, insurance companies, etc. etc. etc. Over and over again I hear how hard it is just to get the service and information that deaf and hard of hearing persons are entitled to in order to hear and communicate. Drew's Mom and Dad are very active with other parents who have deaf children and have learned a lot in two years. They recently participated in the HLAA Walk for Hearing in Columbus and met a lot of new people. And said that everyone just loved Drew! I hope they will come to the HLAA Convention in Nashville next June.
Drew's Mommy and Drew
Drew's parents had lots of questions for me because they weren't sure how Drew hears, what he hears, what works best and what doesn't. I asked them if they monitored Drew's CI's with the monitor headphones. They looked at each other and then told me that they had never been shown how to use them and that was one of the questions they were going to ask their audiologist at their next appointment. They didn't know if CI's were monitored while the child was wearing them or if they were checked after taking them off. I asked them if they would like me to show them how so Drew's Dad quickly got the monitor headphones. Since Drew was already asleep for his nap, I plugged the monitor headphones into my CI's and let them listen. They both took turns hearing through my "ears" and made different noises for each other. It was interesting to watch the reactions on their faces. I knew they were understanding something and could hear how some noises could be distracting. They had tried for a long time to figure out how to use the monitors and I was happy to show them.
Drew and Avery were so talkative and playful. While they were playing, Drew's coil would fall off his head. Each time that happened, he went to his parents to have them reattach it for him. He doesn't like it when one of his "ears" is "off the air." He hasn't learned how to put it back on himself yet but he knows when it comes off. Drew & Avery have a little game where they like to hide in the front hallway closet! I think every kid likes the game of hide & seek!
Drew Hiding in the Closet
I thoroughly enjoyed my visit with Drew's family. This is another family that chooses to remain positive, even in the midst of their trials and frustrations trying to get what is needed for a family member that has a hearing loss. Even when things are not going right, they choose to respond and react in a positive way. I love being with people who are optimistic and encouraging. It is contagious! I hope to meet more CI children and adults with cochlear implants because we all share a special bond. And we choose joy in spite of our circumstances.
9 comments:
Laurie, I had no idea about monitor headphones. I wonder why our audiologist don't use them when giving us new programs? Mine always ask me what the "sound" sounds like. Why can't she monitor it and help make it better?
Interesting and heartwarming post by the way!
David
David,
You've asked a very good question. Maybe we should all take our monitor headphones with us when we get mapped! I don't know if Advanced Bionics has monitor headphones but Cochlear does.
The only reason I know how to use them is because of my son, Brad, who is an engineer and likes to check everything out. When I first got my CI, he got the monitor headphones out right away and figured out how to use them! It took an engineer to show me the way - not an audiologist.
Thanks for the sweet comment. I love meeting new people and hope to meet you someday in person!
Laurie,
What a trip to Ohio you've had! I'm so excited just reading about it!!! You have summed up both of your visits just wonderfully!
Take care,
Tammy
I would have loved a headphone demonstration as well!
So glad you got to meet Drew and his family, they're an inspirational family for sure. And I'm sure they enjoyed you every bit as much as you enjoyed them!
I wish I lived next door to drew. We could be buddies!
Awww. I like your "People I Meet" posts. :)
Thanks to parent's like Drew and Ethan, they are paving the way for other parents. Who knows, maybe it makes it easier when more parents are informed, thus informing insurance companies in the process. At least, I hope so. :)
I don't know how to use the monitor headphones either. How sad is that. What a sweet meeting. I kind of felt like I was right there.
Oh!
I just want to pinch his cheeks :) You are so lucky that you got me meet the cutest babies :)
Lucky you got to meet Drew! He has gotten so big quickly!
I don't have monitor headphones...maybe I should ask for one...is it even worth it?
Way to go to teach them! :-)
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