By Kim Shauer
Do any of these statements ring true for you? We didn’t expect this. Our baby makes appropriate sounds back to us. How can you tell me our baby has a hearing loss when they so clearly seem to hear me? Are hearing aids necessary? Why does my baby seem to respond to me the same whether the hearing aids are on or off? How do we know we are making the right decisions this early? We know the first set of hearing aids is free, but how much will the next ones cost us?
These were some of the questions parents had for Jenny Hatton, Audiologist for the BCEHP, who was on hand at a recent BC Hands & Voices Parent Coffee Night, “Bring Your Own Audiogram”. If you’ve ever had similar thoughts, please read on…
“We didn’t expect this” is a common reaction from parents now that newborn screening and follow-up occurs within the first few months of life. Jenny shared that audiology has changed how parent counselling happens. In the past, kids were usually 2-3 year olds before being identified as deaf or hard of hearing. By that age, parents had often figured out for themselves that their child had reduced hearing, so audiologists were often confirming what was already suspected. This is usually not the case with early identification, where parents are often shocked and in disbelief at the news.
Mild/Moderate Hearing Levels
The parents of babies with recently identified hearing loss who attended the Coffee Night are certainly not alone in their “confessions“ – wondering if their child can “do fine” without wearing hearing aids, or by having them on only for appointments with their early interventionists. I remember the same thoughts crossed my mind for my own daughter after I found out about her hearing loss. Her hearing levels are in the sever range, so I can only imagine how much these thoughts can play a part in everyday decisions, like deciding to put your baby/toddler’s hearing aids on, when your child has hearing levels in the mild-moderate range (particularly when they just pull them straight off again!).
Jenny’s explanation was really helpful; she described how many children in the mild-moderate range have pockets of good hearing and can detect many sounds but they will not be getting all the information from all frequencies to fully develop speech. One parent of a toddler with mild-moderate levels shared her exact experience with this. Early on, she felt her daughter was hearing just fine but the effects of her hearing loss on her spoken word has become more apparent now that her daughter is older. For example, she now notices that her daughter seems to be missing certain sounds (k, d, s, and many endings on words) and prefers to sign certain words that she is not yet able to produce (e.g., words starting with “d” such as “dog “). Mom comments that “this makes sense now, as she wasn’t hearing that sound without her hearing aids being worn consistently”. An experience in the sound booth gave another ‘aha’ moment to a parent, and encouraged them to try the hearing aids again on their child; the parent clearly heard a tone, but it was obvious in that moment that her child on her lap did not.
In the midst of grief, and being a new mom experiencing all the life changes that can entail, a parent expressed her wish that she’d had some kind of decision making checklist to guide her in choosing an Early Intervention program and communication options.
The Decision Guide for Communication Choices (http://www.cdc.gov/ncbddd/hearingloss/freematerials/Decision-Guide.pdf) is a tool that has been developed by parents for parents, with the guidance and support of professionals who work with children who are deaf or hard of hearing. This guide walks parents through the steps of making communication choices and decisions for their child and family. Although developed in the U.S., much of it is relevant and can be applied by us parents here in Canada. Another useful guide is the Question Guide For Parents produced by the BC Early Hearing Program These can be used along with other resources such as Communication Considerations A-Z (http://www.handsandvoices.org/comcon/). Keep in mind that decisions are not set in stone, and these resources can be useful to refer back to as new decisions arise and others are re-evaluated.
We want parents to know that it shouldn’t feel like you are picking a forever future for your baby (you are just getting to know them after all!). It’s important to get started, though, to meet other families, and start receiving early language services and support. Early intervention programs, professionals and your Guide By Your Side will all support you along the way as you learn what works for your child and family, and support you in changing programs if you choose.
Hearing Aid Funding
Another parent wondered how long their baby’s first pair of hearing aids last might last (about 4-5 years depending on wear & tear) and what possible funding sources there are for the next hearing aids. Parent organizations in BC, including BC Hands and Voices, are advocating for better hearing aid funding coverage for school-aged children and young adults in our province. In the meantime, here are some current organizations parents can apply to when it is time to replace your child’s hearing aids. Please note eligibility criteria vary by organization.
All in all it was an informative evening, and everyone went away feeling that they’d gleaned some gems from the conversation. We hope you’ll join us for the next Parent Coffee Night on Monday 25th April 2016 –http://www.bchandsandvoices.com/post/parent-coffee-night-monday/