“He won’t have to be Deaf for long”

In the past 4 months, I have made so many trips to audiology and ENT, it’s mind-boggling!

The path to identification was a very different experience to that which we had with Zoe, 14 years ago. This time round we went through newborn hearing screening and were referred to audiology after two screening sessions resulted in ‘refer’. So we had confirmation when Carter was 15 days old as opposed to confirmation for Zoe at 15 months.

The screening sessions themselves were bizarre! I have been in many meetings where the process was discussed and the training for the screeners was mentioned. One of the things that stuck in my mind was that the screeners were trained to be very impartial in their dealings with the families. That they were not to use the word ‘fail’ and were to explain to families the many reasons for a ‘refer’ result eg fluid retention, noise interference, hearing loss. The main point was that the screeners are not to ‘scare’ the families, or advise them.

However, our experience of newborn hearing screening was different.

The screener entered the room pushing a trolley with a laptop on it. This was a shock initially as I had in my mind that the equipment they used for the screening was small handheld device. Instead it was a laptop and the a ‘half a headphone’ looking device that was held to Carter’s head.

ABR (image from Google)

I could see the laptop screen as the screening was happening. The graph had a green bar at the top and as the test began a black line appeared and tracked along the bottom of the graph, nowhere near the green bar. The screener looked unsettled and suggested that we try the other ear, same result. This created a ‘refer’ result.

The next day, another screener came in and repeated the test. The same result showed on the graph. I asked the screener was she expecting to see the black line to track within the green section her response was ‘yes we would hope so’. The result was ‘refer’ again.

The screener explained to me that we would need to go and see an audiologist for testing and that they would confirm/clarify what was happening. Then she dropped a clanger! she said “if he is Deaf, he wouldn’t have to be Deaf for long as they do cochlear implants very quickly now a days”! She then went on to tell me about the lovely cleaning lady who worked at the hospital – she had a cochlear implant and she could speak clearly, she wasn’t lonely and was happy! she even offered to bring the cleaner into the room for me to meet!

The ABR process was completely different! The audiologist was lovely! She gave me time to get Carter off to sleep and gave me breaks in the testing when she could see that he was beginning to stir.

She was also very unbiased and gave me information about everything!! (She had no idea that I worked in the field) – I felt like a mystery shopper! It was excellent to know that following the ABR where the results were conclusive and showed that Carter has a ‘profound bilateral hearing loss’ she proceeded to present me with information on hearing aids, NZSL, cochlear implants the lot! She even presented me with the ‘Sign with your baby’ DVD 😉 – she didn’t realise that I am the presenter on it 🙂 Sign with Your Baby

I really appreciated her balanced approach.

Hearing Aids:

We now have regular visits to audiology for new molds – due to the rate of growth of a newborn’s ears! The hearing aids are pretty powerful as they need to amplify the sound so much to meet Carter’s levels.

They give out a lot of feedback although the aural gel seems to be helping with that. He cannot hear the high pitch whistle, but I can. And so can shoppers in the mall (had a few strange looks from people at the shops!)

I am a bit slack with putting them on. Many days I am in the car and down the road when I remember that the hearing aids are still in the box on the table (oops)

I find that Carter tolerates the hearing aids more when he is in his car seat – I like them better when he is in his car seat as the feedback seems to be less.

Part of the newborn hearing screening – identification process, is a visit to the ENT.

We were given the appointment to see the ENT (7pm on a Thursday night!) We saw a locum who had come to Wellington to help reduce numbers on the waiting list for ENT. The appointment should really have been an ‘E’ appointment because it was all about Carter’s ears. He didn’t mention or check his nose or throat.

The focus, from the ENT’s perspective, was to discuss the process for cochlear implants and begin the process. He was taken aback when I politely declined the offer of bilateral cochlear implants. He had never had anyone decline and it didn’t sit well with him. He asked me to outline to him what I saw as being the ‘pros’ and ‘cons’ of cochlear implants – I have to wonder if he asks other parents, who do opt for CIs, to justify their decision also.

I tried to explain that CI’s are not off the table for discussion, but right now they are not something that we want for Carter. I see it as being elective surgery and the ENT did not.

He referred us to a local ENT – meeting her was completely different. She was lovely! Very experienced, knowledgable and respectful. She was happy to take the time and talk through everything. She has left the door open for us to keep in contact with her and ask questions or clarify points as needed.

One professional I have not mentioned in this is our Advisor on Deaf Children (AODC) – I’m sure it must have been weird for her to receive a referral with our names on it. As in my previous work as an AODC we were in the same team:) We are very fortunate to have her. Again she is balanced and respectful. She is a Speech Language therapist and knows NZSL. She brings with her a wealth of knowledge and experience. She is happy to have as much or as little input with us as we see fit.

So although the past 4 months have been a roller coaster of medical visits – we have encountered some fantastic professionals in the field. We are grateful for their work with us.

Just as an aside – The phonak hearing aids came in this cool little bag. Turns out to be the best bottle bag ever! perfect size and keeps the bottles warm 🙂 Thanks Phonak.

 

 

 

 

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Language Development

Carter is now 4 1/2 months old and one of his favourite things to do is to watch the Hairy Maclary story in NZSL and the NZSL nursery Rhymes app. Watching these apps is like ‘being read to’ he can relax to enjoy the story. This is equivalent to a hearing child relaxing and listening to a story. It also exposes him to a variety of signers and surrounds him with accessible language.

We have even been showing him stories in ASL and BSL, (signed stories) although these are different languages we want him to get use to seeing visual language. Unfortunately there are only a couple of stories for pre schoolers in NZSL. This is an area of need for families in NZ with Deaf and hard of hearing children.

 

It is interesting to watch where his eyes are tracking while he is watching signing. He is really focussed and moves his eyes from the picture to the signer and back.

I am often asked if Carter is signing yet. No has not produced an actual sign (he’s 4 1/2 months old), he is displaying the building blocks of signs ie Manual babble. So things are on track 🙂

There are particular vocab items that we consciously use repeatedly with him as they carry the most meaning for him in his daily activities. For example

Screenshot (232).png

 

all of these signs have very simple handshapes and simple movements.

We also make sure that we are repeatedly using the family sign names so that he is exposed to names also.

He is now starting to control the movements of his hands. It was so exciting to see him giggle as he moved his fingers and realised he was in control of them.

In this clip I am signing ‘FINISH’ – I deliberately sign it close to him and then in contact with him, this is so that he can feel the movement of the sign. You can see him take hold of my hand and then as he feels the movement he starts to open and close his fist.

 

 

 

 

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Open letter to Nyle Dimarco

Hello Nyle: I hope this letter finds you doing well.  I have been meaning to send this to you for some time.  I was not sure how to frame my thoughts, which led me to put it off until now.  I have …

Source: Open letter to Nyle Dimarco

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Acquiring NZSL as a first language

Carter will have NZSL as his first and primary language. Watch the development in 5 short weeks! It’s so exciting to see him becoming more alert and attentive. We are constantly surrounding him with language and then watching as he begins to produce mabble (manual babble).

Watch the clip of how we are interacting with him and providing him with early visual language.

Carter NZSL development 0-5 weeks old

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Sign with your baby – great online resource

 

Sign NZSL with your baby

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Learning NZSL

http://youtu.be/_Hvcc0CIy6U

Check out the clip of Bella and Nana signing!

 

Easter weekend away with Great Nana, Nana and Grandad, aunties, uncles and all but 2 cousins was a great opportunity to share and use NZSL. Wee Bella is 11 months old and was able to produce the sign for BABY after a couple of attempts!! Fantastic to see Nana interacting with Carter in NZSL.

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Here we go again!!👍🏼🙌

Reflecting on our parenting journey so far!
Posted on October 28, 2014
I’ve been reflecting on what, if anything, I would do differently if I had my time again as a mum of a new-born baby. I vividly remember that overwhelming sense of excitement, fear, joy and exhaustion! I remember the day that it hit me that this little life was utterly dependent on us.

……fast forward to 17 February 2016 and here I am again a mum of a new-born!! We welcomed into the world Carter Henry Ferguson. Our third child!! We are now a bilingual-bimodal family consisting of three Deaf members and two hearing!

Carter had newborn hearing screening the day after he was born. This was an interesting and somewhat intimidating process. After two screening sessions in the maternity ward at the age of 48 hours, we were referred to audiology for an ABR which was done when he was 2 weeks old. This is vastly different to our experience with Zoe of months of back and forth for behavioural testing and finally an ABR and confirmation at 15 months!

My knowledge of the system is from my work in the field over the years as a teacher of the Deaf, and Advisor on Deaf Children at the Ministry of Education and in my current role with Deaf Aotearoa NZ. However the book/head knowledge was nothing compared to actually being on the receiving end of the service.

I am not sure how I feel about the newborn screening timeline. On the one hand I am happy that we have confirmation so early in Carter’s life and we know where we stand, but on the other hand I am thinking of families who are new to ‘Deaf’ things and the process of screening, audiology etc is quite stressful and so early in the wee one’s life. The urgency to make decisions about amplification and language choices comes so early is stressful.

I am excited about the future for Carter – I am of course nervous about education options for him (just as I was for Zoe). Relocating to Christchurch and Australia (for Deaf schools) is not an option for us, like it was 12 years ago. He’s only a month old at the moment so we have a couple of years to get things sorted for him!

My aim is to use this blog as a place to document Carter’s language development. Already we can see him  hitting milestones and I cant wait to see him go from strength to strength!!

Back in 2001 and through Zoe’s pre school years it was very rare to see Deaf people in mainstream media. Now in 2016 we see people like Nyle DiMarco winning America’s Next Top Model and now on Dancing with the Stars, and Drisana Levitzke-Gray winning Young Australian of the year 2015! Here in NZ, NZSL has been an official language for 10 years. Some things have changed and some have stayed the same.

Carter’s experience growing up as a Deaf child will be very different to Zoe’s experience which was very different to Oliver’s (their Dad) and their Grandparents’!

Exciting times ahead!!!

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