Camp Talk 2019
The VCU Audiology Department has been putting on a week-long FREE camp for deaf and hard of hearing kids that use technology to access sound for the past 5 years. This technology allows these deaf and hard of hearing kids to listen and speak, just like you and me.
The kids are divided by age and enjoy activities like any other day camp around town from 9am-12pm, but these kids have something special in common outside their age. Every one of these kids wears hearing aids, cochlear implants or bone anchored hearing aids (also known as a “baha”) to engage with the world around them. These kids have also been working their butts off every day of their lives to learn to listen and speak. This alone makes them superheroes to me…. and every one of the parents, too! I know firsthand how much work it takes each of these kids and their families to learn to listen and speak, so creating a time where we can encourage one another and be among others on our listening journey is such a treasure.
Channel 12 came to learn more about Camp TALK. Click the below picture to watch the 5 o’clock news clip - both Charlotte and I are in it. Char’s pretty sure she’s famous now…
This camp has been HUGE for our whole family.
Not only has it been a place for Charlotte to play along side other kids with “special ears,” but Lola and Oliver have been volunteering for the past two years and Emma gets to attend the sibling group where other hearing brothers and sisters learn to support and encourage their deaf and hard of hearing family. (That’s Emma with guest visitor Nutsy from Richmond’s Flying Squirrels baseball team!)
I personally have learned so much from other parents and the speakers the VCU Audiology Department brings in each year. For the past two years, I’ve been asked to speak about our advocacy efforts on Capitol Hill. This year we had some great discussion around the current legislation in question, Senate Bill 1741m, which is being researched in the Joint Commission of Health Care this very summer.
A couple parents who are raising their kids with technology to listen and speak, as well as using American Sign Language, had good questions and fresh perspective for the group. Since camp, I’ve met with one of the parents and been emailing with him as we discuss and debate the purpose of the LEAD-K bill and the impacts it might have on kids like ours who are deaf and hard of hearing. It’s so nice to be communicating with someone who is learning in parallel and trying to make the best decisions they can for their child. We may not see every element of the legislation eye-to-eye, but we definitely align on wanting to continually learn, question and strive for the best futures possible for these deaf and hard of hearing kids.
Audiologist. Jennifer White, introduces a panel of geneticists and young adults who are deaf and hard of hearing.
Above is a group of people who spoke with the parents on Wednesday.
I always love when the camp brings in their patients whom they’ve been helping to hear since they were itty bitty and are now thriving young adults. The three people on the right side of the pic are those rocking humans who shared pieces of their story. The left three work with gene identification for hearing loss.
On the far right is Bridie. She is a rising freshman in high school and an amazing musician. Bridie actually lives near us and has been going to school with Lola since we moved into the Henrico County district in 2014. Bridie was not identified with hearing loss until she was almost three. Her story points out some issues with the newborn hearing screening, but gives hope to those like her coming into the hearing world late. Bridie wears hearing aids on both ears and uses an FM system at school to hear her teachers more clearly. She also made the middle school shot put team this year and has a sister that is a rising senior whom I first met earlier this year when we went to oppose SB1741. Bridie was not able to attend the Senate Health and Education Committee meeting, so her sister and mom went to speak on her behalf.
To the left of Bridie is JD. He is a rising freshman going to college on a wresting scholarship. He is profoundly deaf since birth and bilaterally implanted, but said he wrestles deaf (without his cochlear implants) and is quite a personality. His mother also joined the panel a few minutes after I took this picture. She had great insight on their experiences in the public education system and fighting for services through the IEP process, as JD was the only deaf and hard of hearing child in their district, so very little was in place to support his needs.
To the left of JD is Matt. Matt is a rising Junior at The University of Virginia and plays drums in the UVA marching band. He has mild to moderate hearing loss and is majoring in public policy and currently interning at the FBI. Jennifer White has been begging him for years to not wear his hearing aids when he plays in the band, as to save his hearing as much as possible. He said he hasn’t always, but now wears earplugs, instead of hearing aids, when he plays. Matt spoke about another band member who also has hearing loss, as they help one another out with what’s going on. Matt also said he’s never mentioned to his band leader that he’s hard of hearing, as there is no reason to call out something that makes him different. He just loves to jam out with his fellow musicians.
Hearing range is so hard to understand and drastically unappreciated. Below are some charts to help explain what the hearing range is for typical sounds, as well as what Charlotte’s audiogram charts look like.
The audiologist marks the right ear with “O” marks and the left ear with “X” marks.
You can see both above and below that unaided, Charlotte is profoundly deaf in her left ear and has moderate to severe hearing loss in her right ear. These audiograms show Charlotte’s hearing unaided.
I’m so thankful for the VCU Audiology Department.
Their pediatric specialists changed the path of Charlotte’s life forever, as well as our whole family’s. And their Auditory Verbal Therapists empowered me to teach Charlotte to listen and speak, just like the rest of our family.
From their dedication to hearing health education at this annual camp for families with kids who are deaf and hard of hearing to our very first appointment with a pediatric audiologist that took the fear out of Charlotte’s possible hearing loss, Virginia is so lucky to have this nationally ranked medical college and their professionals at our reach.
Thank you for the time and energy it takes to plan and run a 5-day camp like this. I hope you all are encouraged to continue it for decades to come and can’t wait for Charlotte to become a volunteer and speaker for parents to learn from her personal journey.