Tuesday, September 30, 2008

The People I Meet - Drew & His Family

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 & Laurie (we both have bilateral CI's)
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.
Drew's Family (Mommy, Daddy, Drew & Avery)

Wednesday, September 24, 2008

The People I Meet - Ethan & Heather

Last Saturday I drove to Ohio for a little getaway. . .I take this trip once a year to have some time with family and friends. I also use this time to reflect, ponder, and have some quiet time at my aunt's home in the country in the middle of nowhere. (I'll write about this visit in another post.)

Ethan and LaurieOn the way up, I stopped in Cincinnati to meet a new CI friend, Ethan (or E-boy) as his parents call him. Ethan is three years old and has bilateral cochlear implants. His mother writes at "Ethan's World" and I've been following Ethan's progress and story for several years. It was wonderful to meet Heather and E-Boy in person! He woke up from his nap right after I got there and cautiously came down the stairs when his mommy signed to him that he had company. He did not have his "ears" on or his glasses on but Heather took care of that right away.

Ethan adjusting his glasses
Ethan is a special little boy with a great personality. He is also a challenge because he has some other developmental issues along with his hearing loss. I got to see and hear first hand the trials and struggles that his parents have to go through just to get the care and services that he needs. He has apraxia, which is a neurological disorder. This includes a missing connection in his brain that keeps him from speaking. But he knows many words in sign language and is a bright and happy kid. He doesn't have any trouble communicating what he needs or wants and I loved watching him sign to Heather. He is doing very well for his age and circumstances. And is such a cutie pie!

Ethan checking out his new carI got right on the floor with him and interacted with him while Heather and I talked and visited. I held some books for him while he looked at the pictures and showed him how to operate the car I got for him. He had to turn the car upside down and check it out first (a future engineer?) It didn't take long for him to take my hand and he started to take me upstairs. I couldn't figure out what he wanted but Heather said that he wanted to show me his tent in his room. He has an Indian teepee in his room and is really proud of it! He also likes to play a game of hide & seek and hides in the kitchen cabinet. He "peeks" out and has a big smile when Heather calls out "Where's Ethan?"

Ethan hiding in kitchen cabinet!
Heather and her husband moved to Cincinnati from Athens, Ohio because they were driving 11 hours a week for all of Ethan's appointment and health needs. She also quit her job as a teacher to take care of him and says that being his "administrative assistant" is a full-time job! He goes to preschool 4 hours a day and as soon as she drops him off, she is on the phone or the computer trying to get the services and help that he should have and is entitled to. She is constantly trying to deal with the school system and insurance company and does this day after day. They also have a deaf babysitter for Ethan, whom they love. After hearing in person the challenges that Heather has regarding his education and insurance needs, I went back and re-read her blog. And saw everything in a new light. Why do we have to fight so hard for the things that are needed just because someone can't hear or has a medical issues? I truly believe that the earlier you help a child, the less help (and expenses) they will need later in life. This is just one example.

Laurie & Heather
I told Heather not to give up. Ethan is her son for a reason and she and Rich are the best parents for him because they are doing whatever is needed so that he can be all that he can be. He has a great future ahead of him because he has a wonderful support system with his family, friends, and people that love him and only want the best for him. And that alone speaks volumes. Go visit "Ethan's World" and give them a word of encouragement!
Heather, Rich, and E-boy (he doesn't stay still for long!)

Wednesday, September 10, 2008

Taming The China Cabinet

Ever since I got my cochlear implants, I've been more aware of sounds I haven't heard before. Others CI friends have had to oil squeaky hinges on doors or turn down the volume on the TV and other electronic items. In our house, we have a noisy china cabinet in the dining room! Our dining room sits in the middle of the house and is a major walk-through area from the hallway to the kitchen. The china in the cabinet rattled every time someone walked past it. No matter how I divided or arranged the dishes and glasses, they still made noise.

We recently replaced the carpet in our dining room because one of the dogs chewed a hole in it all the way to the sub-floor. (We needed to replace the carpet anyway because it was so dirty and I couldn't clean it anymore.) I had to unload ALL the dishes in the china cabinet and serving cabinet in order to move the furniture out of the room. I have two sets of china, mine and my mother's. And can't part with either set (but will gladly hand them down someday). I also have a few pieces from my Grandma Royer.

Anyway, when we moved the china cabinet back into the dining room, I decided that I had to find a way to eliminate the "rattling" noise. I also wanted to get rid of some items that we didn't need anymore and organize the china a little better. After doing some research on the Internet on how to organize china cabinets, I also found a very helpful hint. And will share it with you.

I put a plain coffee filter between each plate, bowl, and saucer! (And had to run out to the grocery to get more!) They come in different sizes and are supposed to protect the dishes from scratches and breakage. But, the coffee filters also cut down on the rattling noise because the dishes can't "wiggle" as much.

Here is the final result!

Wednesday, September 03, 2008

Labor Day Fireworks!

Steve and I went to Knoxville on Labor Day to see the Boomsday Fireworks. For those of you who don't know what Boomsday is, it is a huge three day festival held in Knoxville, Tennessee every Labor Day weekend on the waterfront in downtown Knoxville. It is a free event that brings thousands of people to Knoxville’s Volunteer Landing (near the University of Tennessee campus) and Neyland Drive for food, live music, has a play area for kids, and the biggest Labor Day weekend fireworks show on the last night. In addition to watching the wonderful fireworks show, those who attend can also hear the show choreographed to patriotic and contemporary music on radio.

This was my first time hearing and experiencing the fireworks with two CI ears. I could hear the music playing on the radio that the family next to us had with them. I also noticed an "extra" sound during the fireworks show, which I'm assuming that I'm hearing with the little residual hearing that I have left. If I had turned off my CI's, I probably would have heard the fireworks as "clicking" sounds in my ears. And felt them, too.

The fireworks were great! And fun! Enjoy the pictures!