One Family’s Journey:
Finding Our Way Through the EHDI System
Meet Brooklyn Walter, the new Pennsylvania Hands & Voices Chapter Co-President and parent of three children with hearing loss. She shares their family’s story which began in Indiana and took them to Pennsylvania.
Where should the introductions begin? My husband Ben and I met in college in Indiana and married in 2000. Two years later, our daughter Annabelle was born in Indianapolis. Anna was a healthy full term baby. Her only issue? She failed her newborn hearing screening in her right ear. She had six tests for that ear and three or four on the other. The left finally passed, but the right wouldn't. We were assured that it was “just fluid in the ear” and she would be fine when it resolved on its own. When early intervention (First Steps of Indiana) called to follow up with us, we made the audiology appointment, but we didn’t worry about it too much. Every time we went to audiology, even with two sedated ABR’s, we were told to come back in three months to be checked again with no other decisions being made. By the time she was 18 months old, she was showing some speech irregularities. Her audiologists finally agreed that her hearing loss was permanent and bilateral, mild sloping to severe/profound in the high frequencies. Despite the early finding of a unilateral loss, only the tiniest difference exists between her left and right ear testing.
Missing the 1:3:6 Month Guidelines
Knowing what we know now, we should have insisted on getting a clear diagnosis by three months and amplification by six months old. Her tests showed the same results every time; there was no need to put off hearing aids for so long. The audiologist, functioning as part of the EI team, insisted that we shouldn't jump to the conclusion that she had a hearing loss that would affect her development and learning. We obviously now realize that this approach to hearing loss was not effective for our particular child. Once she began using hearing aids and the speech therapist began coming to our home, we had nothing but wonderful experiences. Now as a third grader, she speaks quite well. She has been discharged from speech therapy but still receives services from her teacher of the deaf.
Onto baby number two, Alexandra "Ally." Ally was born in the fall of 2004, and similar to her sister was healthy and full term. When she failed the hearing screen (in both ears this time) we were again told that it was probably due to fluid in her ears, which would resolve on its own. We were advised to have her hearing checked in a couple of months. I took her to the ABR and watched the screen for the familiar wiggles and spikes of that test, but only saw a flat line. I had no idea what that meant. The audiologist, who was unfamiliar to me, kept fiddling with the wires thinking there was a connection problem. After an hour or more fiddling, she finally gave up and told me we'd have to bring her back in two months for confirmation and a sedated ABR, adding that she was fairly certain that Ally was profoundly deaf.
What Does That Mean?
I laugh to think now that I had to look up where profound fell on the mild/moderate to severe/profound scale. Our experience with our older child might have helped us, but we were never actually given the words for her hearing loss; they just showed us the Decibel loss on the audiogram. We had been operating on the thought that her loss would be similar to her sister's. We had no experience with deafness and no idea who to talk to, or where to turn. Our lives were flipped upside down, having no one to look to for information or help. Early Intervention really was disappointing in that they did not provide speech therapy or a Teacher of the Deaf from the beginning who might have helped us.
Eventually we were assigned a Developmental Therapist who could also begin teaching us to sign with Ally. Jodee Crace became a lifeline and a close friend. Through her, we found out about Hands & Voices. She was involved with Indiana's chapter and made sure we had access to the information we so desperately needed as well as opportunities to meet other families. One of my favorite memories of this time was seeing Jodee come to the door with piles of information for us about communication choices. After much discussion, research and talking with other families, we chose the path of communication we felt was right for our child and family. Ally received a cochlear implant, and we focus on both speech and ASL. The next challenge was the lack of experienced speech therapists in the area at the time. So we were assigned a therapist who had experience with Deaf/hh kids but was not a licensed speech therapist. After a year with her, the system finally got a speech therapist who would work with us. Fast forward to today, Ally has bilateral cochlear implants and is catching up to her peers very quickly. We also use ASL and have her in speech therapy, auditory training, and she attends a language development preschool.
An ABR Just In Case
Finally, our boy, Austin was born early 2008 and was a healthy little man. We had moved to Pennsylvania while I was pregnant with him. Austin, unlike my girls, PASSED his newborn screening and we were so excited. I was thrilled to not have to schedule what felt like dozens of appointments with audiology, ENT, renal, optical exams and more. I did make an appointment with the local audiologist to do an ABR just to verify that Austin didn't have a sloping loss like our oldest that might not show up on the newborn screen. The doctor’s office took months to get into because he wasn't referred by the official early intervention system. When we got there, the ENT told us our appointment was with him and that we had no reason to worry. He sent us to audiology for a simple OAE. Austin failed in both ears! The ENT acted shocked and told us we'd need an appointment for an ABR. I was frustrated that they wasted two more months of valuable time. The non-sedated ABR showed him to have a severe to profound loss, but since he was so old by the time, they felt there might be a different result under sedation, so he was retested two more months later. Nope. Austin, now six months old, had the official diagnosis of profound loss.
I spent the next months tracking down early intervention services again. Since Anna was in Kindergarten and Ally was in preschool, we had therapists and service providers to bug for information. Eventually, I stumbled upon the phone number that begins the process of accessing EI services. Today Austin has bilateral cochlear implants and is almost age appropriate with his expressive and receptive language. Austin also uses sign to fill in the words he can't remember or speak clearly and he and the rest of us continue to work in therapy.
The most valuable advice we were ever given was to "let the child lead you.” So we knew that we could pick a strategy, but that each individual child would show us what they preferred, and we could change our minds at any time. It has been a long and sometimes frustrating road but we now feel like our experiences have made us a closer and stronger family. We want other families to have the same support, encouragement and understanding that we received from Indiana Hands & Voices. Indiana's chapter gave us practical information and support when we needed it most. My goal is to see Pennsylvania Hands & Voices grow just as strong and look forward to helping families find an easier way through the EHDI system and beyond.