My name is Amanda McKee, and I am the mom to a little boy with CHARGE syndrome. His name is Carter, and he is eight years old. We, along with his Dad and four-year-old sister Julia, live in Jefferson City, MO. Prior to having Carter, I was an elementary teacher. Since having Carter, I work part time doing a home visiting program for families who have children with special needs. I also got a master’s degree a couple years ago in Early Childhood Special Education. As I am sure most of you can relate to, a majority of my time is spent being Carter’s medical case manager, school advocate, and taxi service.

When I was a teacher, music was a huge part of my classroom. We had songs for learning, routines, and transitions. I used music for break times, motivators, or even to elevate our moods. When I had my first son, I was so excited to continue using music to soothe, bond, nurture and love him. To my surprise, I was born with a child who is Deaf.

We started down the path of pursuing hearing aids, and eventually it was determined he would qualify for Cochlear Implants. It was a difficult decision and not an easy journey. We had a failed attempt initially that almost lead to facial paralysis, and it made considering an elective surgery almost seem silly. Still, we had discovered that he was also visually impaired, and we felt that it was important due to him being Deaf-Blind to work to get him as much access to his environment as possible including hearing. At 15 months, Carter received his first Cochlear Implant. Soon after implant, I started researching about music therapy and the benefit for auditory rehabilitation for children with cochlear implants as well as other developmental skills. Often times children with implants have a hard time adjusting to the complexity of music. I found a music therapist in our area and started pursuing private music therapy.

We had a wonderful experience with music therapy. Carter’s skills were growing in so many ways. The music therapist was targeting so much including auditory awareness, discrimination, attention, localization, auditory processing/understanding and also expressive communication and socialization. We loved it, but there was one huge problem, the cost. I was unable to find any way to get this intervention covered by insurance or our state early intervention program. We paid out of pocket for a while, but quickly realized this wasn’t sustainable. I felt it was so important for his development, and it was such an enjoyable activity for my child that I decided to look for outside funding sources. One funding source was the June Jessee Memorial Foundation.

During the pandemic, we ceased almost all outside interaction. My son had his onset of seizures and subsequent Epilepsy diagnosis in January of 2020, so going into the pandemic we still had quite a bit of PTSD from terrible experiences where we thought we had lost our son. This meant that Carter was no longer not only getting music therapy, but also all other therapies (PT, OT, Vision, Deaf Education, Speech) had halted as well. I needed something that could encompass aspects of all of these areas as well as to help us get through long days of isolation. That’s when I pursued the funding for music therapy. Thanks to the grant funding Carter was able to receive private, individualized virtual music therapy. Music is a big motivator for him, and his therapist was able to target many goals in several developmental areas including motor, communication, auditory, and academic. Since this was done in the home, our whole family could learn from the strategies. Even Carter’s little sister, Julia, would sing the songs to him. It therefore bridged to be a great opportunity for socialization. This therapy was a bright spot in our day and allowed for much needed therapy progress to continue to be made in a safe, fun way.

After we completed the private sessions, we realized that JJMF offered monthly music therapy virtual sessions. Since we are not in the St. Louis area, we were thrilled that these were offered in digital format. This allowed us to continue with this great learning experience as a family. We participate most months and my family loves “music time!” where we sign, sing, dance, and play together. We get all of our instruments (homemade ones too!) and are ready to jam out together. They also love that they get to do song requests. I’m pretty sure my daughter requests “Let It Go” every month. My son loves it when the therapists sings books or highlights him on the screen to do something that everyone else copies.

To any families who are thinking about music therapy, I say give it a try! I promise you don’t even have to sing! The format is very laid back, and the therapist works hard to accommodate and include everyone. If your child has a hard time participating/attending, there is no judgement at all! You never know what your child will pick up just from being exposed. You can participate in the comfort of your own home. It is a great time for your family to gather and participate in something together. We have loved seeing other families on similar journeys and building a community together. Thank you to the June Jessee Memorial Foundation for continuing to offer this group resource to families with children with neurological conditions. This is rare, fantastic opportunity for families, and I hope sharing our story helps more families understand what a gift this is. Music Therapy is magic!

Join JJMF families for virtual group music therapy, hosted by Maria Carron, founder of Midwest Music Therapy. Children with medically complex, neurological conditions and their siblings are invited to sing, dance, and play along with Maria’s engaging musical activities. The virtual event is free, but reservations are required. Sign up here.