The Traun family has done what it takes to be actively involved in early intervention services in spite of many obstacles, including their daughter’s complicated medical needs and living in Hope, a small community in the eastern Fraser Valley.
**From our archives. Originally published in our Fall 2019 newsletter.**
My husband Sheldon and I both grew up in small towns and we live in Hope, BC with our two daughters; Lily is five, and Rebecca is almost three. We did not know anyone who is deaf or hard of hearing until we had Rebecca.
Rebecca was born with several challenges, and the first one we found out about was her hearing. She did not pass her newborn hearing screening, and at six weeks old we found out that she had a permanent severe hearing loss in both ears. I was initially devastated and so sad at the thought that she would never be able to hear what her name sounded like. I felt guilty, and I cried a lot for many weeks. I didn’t know what I was supposed to do to help her. Then a short time after receiving her diagnosis we were contacted by a Parent Guide who had a teenage daughter with similar hearing levels. That was an extremely inspiring and comforting conversation that helped me calm down and relax a bit.
Then at ten weeks old Rebecca was hospitalized with severe anemia and failure to thrive. At this time she was also found to have a cleft palate.
When Rebecca was hospitalized, it changed my perspective on her hearing loss a lot. That was a big shifting point for my grief, as I was forced to advocate for her related to her hearing access (e.g. with nurses talking to her in the hospital when she couldn’t hear them). It forced me to “put my big girl pants on” and start to move forward.
Rebecca went through the first two years of her life with basically no immune system, and undiagnosed recurring bone marrow failure. This meant we had to take extreme cautions to avoid viruses – we could not attend any public events. Becca had very little social interaction with other people. This was made even more challenging because it meant keeping Lily, our healthy, active preschooler, away from germs as well.
We had a lot of medical and therapy appointments during those first two years and continue to! Becca was fit with bilateral hearing aids at 12 weeks old. During the first year, Rebecca became very orally averse and required a nasogastric (NG) feeding tube. Her cleft palate was surgically repaired when she was 14 months old, and after the repair, we aggressively worked on helping Becca learn to eat orally and not be dependent on her tube. We were supported by the Speech Language Pathologist (SLP) and Occupational Therapist (OT) from our local CDC (the Fraser Valley Child Development Centre).
Throughout all of this, we were actively engaged in early intervention services through BC Family Hearing Resource Centre. We started weekly online sessions once we got home from the hospital, when Rebecca was four months old. Those sessions were a big source of support for me. It was so helpful knowing I had someone I could talk with each week about Becca. I would ask questions, share challenges and frustrations as well as successes – it was someone to lean on.
Shortly after starting early intervention we began individual sign language sessions, also online once a week. I received a lot of resistance from people close to us about using sign language with Rebecca, and it actually challenged me to advocate for Rebecca even more. Part of that was learning as much sign language as I possibly could and exposing her to it. I did my best to make signing a normal part of my communication with Becca. Becca never really signed back to me in those early days, but understood a lot of signs, and was very receptive to me signing to her.
In spite of her hearing levels and her cleft palate and oral aversion, Rebecca has always shown us that she wanted to talk. She has always enjoyed listening, and listening/spoken language is clearly her preferred modality, in spite of being exposed to sign language from a young age. Even so, acquiring speech has been a difficult process given her other challenges.
When Becca was almost two, we noticed she was starting to sign more and her progress with spoken language slowed. Shortly after this change, during a routine hearing test with her audiologist, it was discovered that her hearing access had decreased significantly. We then started the process two determine if a cochlear implant (CI) would improve her access. This was all while still dealing with her ongoing health issues. After several months, in August 2019 Becca was implanted with one CI on her right ear. Since activation, Rebecca has exceeded all expectations and flourished with her CI. For the first time in a year, she is once again making progress with her spoken language development. We truly feel it was the best choice for her. She continues to use a hearing aid in her left ear.
Once Becca’s immune system was strong enough, after the age of two, we started to attend the ASL toddler group at BC Family Hearing Resource Centre. We have made the hour and a half drive to the centre every second week. It has been really nice to meet other parents and children, as that’s been challenging living so far away. It’s also been great for Becca to see other kids wearing hearing devices. She finds it very amusing for other people to sign with her, given that up until recently I’ve really been the only person signing to her.
Today Becca is almost three. She is very social, strong-willed, and feisty, with a playful sense of humour. She is medically complicated, but is starting to thrive with language and communicates quite fluently using a combination of signed and spoken language.
With all of Becca’s challenges in her short life so far, I cannot say enough about the early interventions that are available. They can make such a difference in your child’s life and in their development. It can be challenging when you live far away from others, but one thing I found helpful was reading these newsletters, seeing inside other people’s lives. This is especially important when you live in a small community that doesn’t have any other hard of hearing children.
One thing I’ve learned about is the importance of advocating. Don’t be scared to advocate for your children. Don’t feel that you’re inconveniencing people. I have found that when I do stand up and advocate, I’m always surprised about the positive response I get. My other advice is to embrace your child, and love them no matter what their hearing levels or challenges in life. The one thing they want and need the most is to be loved.