Beth Leipholtz is a new mom who lives in rural Minnesota and has spent several months sharing her family’s story on her blog The Scoop on Coop. In October of 2019, her son Cooper was diagnosed with Waardenburg syndrome, and in July 2020, Cooper received his cochlear implants.
I recently had a chance to catch up with Beth about the last several months and advice she has for new parents of hard of hearing children. I find Beth’s approach refreshingly no-nonsense and love her reminders to simply enjoy being a parent.
Whether you are a parent, an audiologist, or just looking for an inspiring story of family resilience, I hope you enjoy Beth and Cooper’s story. While you’re here, give her a follow on Instagram, Facebook or TikTok to keep up with Cooper.
Q: Can you tell us a little bit about your son Cooper and how you first learned of his hearing loss?
Cooper is our first child. When he initially didn't pass his newborn screening, no one seemed concerned and we were told to bring him back in a few weeks. In that timeframe, I began paying attention to whether he startled at loud noises or not, and noticed he never did. Even before we got the official diagnosis, I knew what we would be told. Before his ABR (a more in-depth hearing test), I had come across something called Waardenburg Syndrome, and everything I read aligned with Cooper. It was like reading a checklist of my child, including the potential for hearing loss. So heading into that ABR on October 18th, I was prepared to be told that he had profound hearing loss.
Even so, it's still a shock to hear those words. You go through the stages of grief almost. The first few days are a blur and I cried quite a bit. I mourned the child I thought we would have, which I think is important to acknowledge and to do in order to make room for the child you DO have. For me, taking action makes me feel more in control of a situation so I started researching our options immediately and diving headfirst into the world of hearing loss.
Q: Any advice for those who are in the first weeks or months of their own child's diagnosis?
I spent a lot of time thinking about this recently. I remember very early on in our journey, a parent of a child with hearing loss told me that one day I would look back and none of it would seem so impossible. I didn’t believe it at the time, but it’s true. Cooper’s hearing loss is just a part of him now, like his blue eyes and his chubby fingers. It just is. I would encourage parents to really dig in and research all their options, as well as start early intervention right away. But at the same time, don’t forget to stop and enjoy your baby.
Q: What does your support team look like right now?
So far we have worked closely with our medical team and audiologist. They are probably the most prominent people in this process. We also started early intervention right away, which is encouraged and free for families in Minnesota. Because Cooper is so little, there wasn't much we could really do right away. A lot of it was learning basic signs and introducing them to him. As time goes on and he begins to develop language, our relationships with the education and early intervention teams will likely continue to grow. We have also talked quite a bit with other families who have been through the same thing. It's been a good way of getting a glimpse of what our future may look like, and also is reassuring for us to see other kids with Cochlear implants and ASL having so much success in mainstream education. We have done a few speech therapy appointments and will continue to add to that as Cooper grows.
My advice is to find a team you are comfortable with but who doesn’t sugarcoat it. I appreciated straight forward information so much throughout this process.
Q: Can you share a little bit about Cooper's activation day?
Honestly it was what I expected. I went into it with very low expectations. I know most kids don’t react like those videos you see on Youtube. Some are just quiet and curious, while others are scared. Coop was a combination of both, which I tried to show in my video. I feel it’s important to communicate the realities of what activation looks like. It may feel like the “big” day in all of this, and it is, to an extent. But the little moments that follow, like turning to their own name, or imitating a sound you make...those are the truly emotional moments.
Q: What's next for Cooper and your family?
Right now we are just focused on keeping his "ears" on as much as possible and exposing him to new sounds. We have a few more audiology appointments coming up where they will look at the programming and make adjustments. But all in all, he's just a normal 10 month old. We focus on sound more than most, but other than that his life is pretty normal.
Q: Anything else you'd like to share with parents of deaf or hard of hearing children?
Don't be afraid to reach out to people who have been where you are. There is so much support that can be offered from experience and you should take advantage of that. Connect with groups on social media, or families in the area. Above all, just remember to love and enjoy your baby.
Thanks to Beth for sharing her inspiring story. You can continue to follow her families journey on her blog The Scoop on Coop.