Tag Archives: disability

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.


Discovery – The start of our journey

I was a beyond happy mother who immediately bonded with my baby. There wasn’t a doubt in my mind that I would do anything and everything for her. Postpartum depression (PPD) was a very real fear of mine, having struggled with depression and anxiety for the previous years and throughout the pregnancy. Everyone talks about it and it is so common (1 in 7); I was lucky enough to not have been affected…yet the day after I returned home I immediately felt that something was wrong – not with me, but with my child.

We had a home visit from public health, something that is standard in our province, and the nurse was… just okay. Honestly she gave me some really horrible advice about some things that I really wish weren’t said to me. One thing that did happen however was that I was sitting in our chair holding my daughter and our dog – a very large and loud German Shepard x Rottie x Malamute – barked several inches from her face. She continued to sleep soundly through. I questioned the nurse on this, saying that I didn’t think that was a normal response – to which she told me that my baby had heard the dog barking for the last nine 9 months so she was just use to sleeping through that sound. Even at the time I felt unsure, but I knew as a new mom I would be very sensitive to things so if no one else was worried, then I wouldn’t be either. I wouldn’t let my anxiety control me as a parent.

At three weeks of age, we traveled to visit my husband’s sister and enjoyed an amazing weekend at her wedding. At the reception, Jason and I were planning on leaving at the dance portion of the night – how could a baby sleep through night club volumes? Yet, she did. The other guests commented on how lucky we were to have such an amazing sleeper and relaxed newborn.  After an hour or so at the dance, we decided it was time to go back to our room – we were still new parents after all. On our way our a guest let off an air horn several feet from us. I flinched and jumped at the unexpected sound, yet, our daughter still slept through.

It was at that time I allowed my anxiety and suspicions to begin to surface. For the past 3 weeks I had been repressing this horrible feeling in my gut that my baby was ‘wrong’. I feared that it was PPD – I didn’t want to give up breastfeeding to go on medication, and I held an irrational notion that if I admitted I thought something was wrong with my daughter that someone would try to take her away from me… it was as if I would be the worst parent if I thought something was wrong with this perfect new human.

The night of the wedding a large thunderstorm came through. Hail. Thunder. She slept through; I cried knowing my daughter had hearing loss. There was something wrong with my baby.

Upon returning home we went to our family doctor, who agreed that her reaction to sound wasn’t appropriate – meaning non-existent – we were sent to an audiology test in the city. At this time, hearing screening only existed within the cities and us “rural folk” hadn’t yet been given the resources to do the tests.

At 6 weeks of age, the littlest cricket went to her first audiology exam.

She failed her test.

Saying that I cried at this appointment was an understatement. I bawled hysterically and at the end of the appointment stormed out of the room leaving the audio technician, husband and baby in the room. The technician continuously tried to insist that it could be ear wax or fluid causing a false result – or it could have been that she woke up and fed through the exam. I so wholeheartedly believed that my daughter was deaf that these suggestions for the test results made me livid.

I was angry. I was over tired. I was hormonal. I was scared.

Two weeks later we were back at the audiology clinic with an audiologist for a three hour test to determine the level of hearing loss. Our littlest cricket was a champion that afternoon and slept through the entire appointment (which is what you want, silence to measure the Brain Wave activity). The audiologist was gleeful (no, really – GLEEFUL) she was able to get such great data from our daughter.

The results were the same, our daughter is deaf – something appeared to be wrong with the cochlea. What could she hear? Nothing.  70db in on ear and higher (so a jet engine taking off) and the other ear couldn’t be tested as they don’t play loud enough sounds in newborns for her threshold. Jason and I sat in the chair holding hands and our baby girl. Scared of the unknown. Scared that at 2 months of age she already had a disability – and we were aware that it could only be just the beginning. We cried for her, we cried for us – and now that she is 4 months old we still do once in a while.

This is a visual graph showing our Cricket’s hearing loss. The right ear is marked by circles and arrows – showing that is how high it was tested, but without any feedback, so her hearing ability on that side is “worse” than what is indicated. The ‘x’ shows her left side, indicating that she has a severe-profound hearing loss. The “blue bubble” at the top is normal vocal range during a conversation. Not surprising anymore that we could vacuum around our sleeping baby.

I’ve been complimented by many (we have daily doctor appointments for the last two months – I mean MANY) health care workers that I was able to determine that my daughter had hearing loss so fast. How attentive I must be!

I hate hearing this.

Prior to her diagnosis everyone just brushed off her behavior as her being relaxed and calm, it was only due to some exact moments in time that we actually wondered. It isn’t that I’m more attentive, we are just lucky to have had those situations occur and the anxiety to push for a simple test. Additionally, our cricket can’t hear anything. Children with only moderate or severe hearing loss can still pick up some sounds here and there so could and would react to some of the situations we were in which is why most children weren’t determined to be deaf until later in life when their speech patterns didn’t evolve correctly, between 1.5 – 3 years of age. It was only in occasions where hearing loss was expected (other medical issues or family history) where it was really identified earlier. I’ll take credit for being an attentive mother – I am; but it isn’t the reason why her hearing loss was identified so quickly.

In our province, hearing testing has now been implemented in all hospitals (as of September 2018) – and as such we are leading the “new generation” of children with hearing loss in our area. Our daughter is currently (at the time of this post) the youngest at our hearing loss clinic.

Where To Go From Here?

Apparently writing is therapeutic, although whoever insisted upon this hadn’t watched me scribbling across a page. Stressed. Anxious. Simply tedious.

I decided to blog about our journey with our daughter, who i’ll refer to as the littlest cricket. Upon her diagnosis we were informed we were the ‘beginning of a new generation’ – and when trying to find more information and stories about what to expect, we were quite disappointed_DSC0033. Not much existed and what was out there didn’t feel relevant to us.

We hope that by sharing our experiences, stories and thoughts we can educate and bring a virtual hug to others who are raising deaf children.

At the time of this posting, we are hopeful that our daughter will be eligible for Cochlear Implants, something that we know some members of the Deaf community are strongly against. It’s a time of emotion and days where I can’t help but cry, and other times I am so hopeful and excited that I’m confused as to how I could ever be upset.  It’s a time of confusion, trying to figure out what is “normal” for our family and daughter now between daily doctor appointments and being alone while my husband works out of town.

Perhaps writing can be therapeutic when I’m already anxious and stressed about the topic. So long as this blog can bring a singular person a moment of clarity, or a sense that they aren’t alone, then it’s worth every letter and second that gets poured into it.

I hope that you’ll follow our story along, share your thoughts and stories as well.

“I always like walking in the rain, so no one can see me crying.”
― Charlie Chaplin