Our Hearing Loss Team – Super’HEAR’os

As Canadians, as Albertans, we are beyond lucky to have access to the most amazing resources. Once we had the official diagnosis from the Audiologist we were referred to our local Children’s Hospital to meet our specialist team.

It was about 2-3 weeks from the point of referral until we sat down around a table and were introduced to three strangers who were going to guide us through our journey. Our team, consisting of an Audiologist, Speech Therapist and psychologist (and also a social worker who wasn’t able to be present) greet us – immediately I wept. Still coming to grasp that my child was labeled as having a ‘defect’ – yet all I saw was perfection, was challenging; all I wanted was for someone to yell “just kidding” and for us to be told there was a mistake and everything was normal – surely it wasn’t MY child that was different.

For the weeks leading up to this appointment I had read into methods of getting around hearing loss and the physiological effects that it has on the individual – google doctor really wasn’t making things easier (I was later outright banned from googling anything because of how upset it was making me – it’s something I strongly suggest all new mothers avoid if possible).

My parents, in-laws and husband sat around the table, each came with a list of questions to ask the specialists about how we would go about supporting our cricket’s development and growth in the world. Each came with different ideas for the meeting – thinking we should listen, or converse, or to even fight – I came to the meeting terrified, scared and with so many questions that I couldn’t vocalize even a single one. I was so beyond overwhelmed that now, even months later, writing this post is hard because that 2 hours so much happened that I’m still trying to process it.

The team explained the hearing loss to us. This was now the third explanation that I had been given – Yes, I understand this isn’t reversible. Yes, that means it is permanent. Yes, my child is deaf.  They went over the anatomy, hearing charts – and I stared at the pages willing myself to not cry throughout the entire meeting. I was already struggling enough to learn how to be a new mom yet alone now have to enter this new and silent world.

We then got to our options.

Hearing aids. They could kind of work – enough to allow the brain to get some sound stimulation and have it “hold space”. It wouldn’t be enough for her to hear normal conversation levels of speech however.

Cochlear Implants. Bi-lateral at about 1 year of age. Results are impressive for what hearing she should have back – but it would also remove what little hearing she did have left. Surgery was a day and then speech therapy would be intensive afterwards – multiple times a week for several months plus audiology appointments to “map”. Highly contentious in the deaf community (although this is another post – so many things going on with this one that there are full websites and books dedicated to this subject).

The brain is “plastic”, meaning that it changes and adapts with us – to an extent. By giving our cricket hearing aids so early on and having her brain able to get sound stimulation, it would “hold the space” in her brain so that learning language later could be easier and learning how to hear wouldn’t be as hard later. The thing with sound is that if you don’t use it – you lose it – so if we decided to let her wait to make any decision around her hearing when she was old enough, the decision to be able to enter the hearing world would have already been made for her – it could perhaps be done, but it wouldn’t ever be “good” or “acceptable”.

My husband and I had done research prior to the meeting (again, thanks google doctor), but we are also lucky to have very supportive parents in the medical communities – and we had been aware of these options so knew how it was going to go.

Hearing Aids Now. Cochlear Implants, if possible, as soon as we could.

Speech Therapy sessions started immediately.

This blew my mind. My 2 month old – who is entirely deaf – was to start in speech therapy appointments NOW? Yup. How’s that for diving in head first. It was explained to us that the conventional idea of what a speech therapist does extends into our area that we wanted to grow – we would be learning American Sign Language, and they would support us with that – there would be a group of other parents with children who were hard of hearing, so it was good to connect with other community members – and then of course they wanted to watch how she responded with her hearing aids in.

Hearing Aid Mold
This was taken at our Cricket’s 3rd hearing aid mold – she is growing so fast that we were in getting them resized every 2nd week or else her hearing aids would just fall right out. In this photo her Grandma was playing with her to allow the mold to properly dry.  A small cotton insert is placed into the ear, and then a hardening and expanding gel is inserted into the ear canal and the outter ear. Once set, it is pulled out and sent away to create the mold to ensure that the hearing aid stays in place and delivers the amplifed sound into her ear.

We were given a binder, filled with information that I still feel was, nice, but also felt silly to me to have to be told – including things like:

“Being deaf is not an excuse for poor behavior”.

This seems obvious to me, but perhaps some people need to be reminded.

“Don’t stop talking to your child”.

Of course not! So much socialization, especially at the early age comes from facial expressions and just the interaction. Also, as soon as she could hear then you want to already be in the good habit!

“Read to your child”.

That isn’t an issue in our academically inclined family – and in fact I think knowing she was deaf encouraged us to read to her more often – picture books are lovely and relaxing and such a great excuse to cuddle.

That afternoon we went down the hall, got her hearing aid mold impressions and walked out of there with appointments booked for 14 more appointments (and we later had to book more for additional ear mold fittings and speech assessments). More impressively we only had to pay for our lunch and parking fees.

What an amazing group of professionals. We left with a pathway forwards – with so many of our fears feeling a little less scary. What an amazing country and province I get to live in to have access to such resources and know that my daughter’s future and ability to hear won’t have anything to do with my financial status.

 

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