My Story as a Mother and Parent Mentor – Anne Le Page

My boy Tom is an amazing young man.  I might be a little biased, but every day he inspires me, teaches me and grounds me all at the same time. 

About Tom

Tom was born on the 24^th August 2009 in a public hospital in Victoria.  My ‘text book’ pregnancy and birth took a scary turn right at that moment when I was meant to experience the joy and relief of finally having my child in my arms.  The emergency alarm was activated and Doctors and midwives came rushing in – to save his life.  Tom had shoulder dystocia (his shoulders were stuck) and the cord was tightly wrapped around his shoulders and was compressed for a long time.  He was born ‘blue’ and needed urgent resuscitation.  I didn’t get to see or hold Tom for a few hours, which seemed like forever, but then finally our family was complete.  My husband Rob, my two perfect little guys and me.

The routine hearing screening test was done just before Tom and I left the hospital and he was just over 24 hours old.  The ‘fail’ result did not come as a surprise to the nurses and I was told it was probably due to fluid in his ears as he was still very young.  We returned to the hospital one week later and received the same result – fail.  Such a terrible word to hear.  I was again told it was probably nothing more than fluid in his ears and we were referred to the Paediatric Hearing Loss Investigation Clinic (PHLIC) for further testing. 

The results hit me like a truck – Tom had a significant hearing loss, both ears.  He could probably hear a motorbike but not the birds singing.  He could probably hear an aeroplane engine but not my voice. 

The tears, the questions, the guilt, the shock started to flow.  This was not expected.  It was supposed to be just fluid in his ears.  I was given a handful of brochures and a follow up appointment with Hearing Australia then I pushed the pram back through the hospital, trying to find the exit through my tears.

And so began a whole new world of appointments, specialists, therapies, early intervention, language and learning.  So much learning!!!  Tom’s diagnosis was confirmed as congenital, bilateral, sensorineural, moderate to profound.  He was fitted with his first set of hearing aids at just 2 months old. 

My husband and I decided to link up with Aurora Early Intervention service.  We knew that we wanted both Auslan and English for Tom even though neither of us had any experience with Auslan or knew any Auslan uses.  It just made sense to us to give Tom access to both languages. I was so overwhelmed when we first visited Aurora.  I had no idea that so many families were in the same boat as us and over time that boat load of people became our clan.  We were surrounded and embraced by the wonderful staff at Aurora who all knew how scary this was for us and helped us navigate this whole new world.

Tom’s Journey

While Tom was still a baby, we had home visits from a Teacher of the Deaf, Jenny, and a Deaf Mentor, Heather.  My rocks.  We then joined in the Aurora Playgroup which was an amazing environment for me, Tom and Tom’s older brother Jack who was about 3 years old at the time.  It was not easy to keep track of both my very active boys at the Playgroup, but Linda and Jina never battered an eyelid.  They cared for and played with the children while mentoring the Mum’s and keeping them sane!  It felt so good to be with other Mum’s who ‘got it’ and for our kids to see other kids just like them – kids wearing hearing aids, cochlear implants, bonnets and using both their voices and their hands to communicate.  There was singing, story time, games, messy play, water play and lots of time and space for the kids to explore and learn.  Just like a regular playgroup but with the extra support that we all appreciated.

Tom stayed with Aurora for his 3-year-old and 4-year-old kinder years.  Despite the distance we had to travel each day to get there, I have really happy memories of those years.  Tom was growing, learning and exploring.  His days were full of colour and friendship.  Tom was the cheeky character who loved dressing up as Woody, Buzz, Superman and Batman.  His adventures were mostly innocent but there may have been a few concerns with how much playdough he would eat and his belief that he could actually fly because he was wearing a cape!!

16 years later, the friendships that Tom and I built in those early years are still going strong.

The early years of Tom’s deaf journey were full of ups and downs.  Actually, all the years have ups and downs, but doesn’t every family go through that?  Yes, absolutely, but we have an extra set of ups and downs, like all other families who don’t quite fit the ‘norm’.  It took a while for me to get my head around the fact that we needed supports and services that other families don’t.  Over the years we have worked with many different people and specialists – Paediatricians, Speech Therapists, OT’s, Audiologists, Teachers of the Deaf, Support Workers, Teacher’s Aids, Mentors, Interpreters, Assistance Dogs as well as family and friends.  I use the phrase “Tom’s Team” to describe this bunch of supporters who have all showed up for Tom. 

Auslan Diploma and Diagnosises

When Tom was in the early years of Primary school, I decided to study Auslan.  It took me 4 years, part time, but I finally made it and got my Diploma.  One of my favourite memories is walking on stage to accept my diploma with Tom walking right beside me.  I think we were equally proud of each other and how far we had both come.

Around the same time, Tom was diagnosed with Autism and ADHD.  It was a tricky time for all of us because suddenly we weren’t just dealing with hearing loss, there were other reasons why some things were really hard for Tom.  Although I wasn’t surprised with the new diagnosis, it was a new learning curb for us, as a family, not just for Tom.  A whole lot of other supports were brought in to “Tom’s Team” and yet again we became the family who had to do things differently to other families we knew.

Fast forward a few years, and our family decided to move to Queensland’s Sunshine Coast.  Best thing we even did!!  My oldest son, Jack, is now almost 19 years old and living the dream!  The outdoors, the weather and the laid-back lifestyle really suit him.  Jack has a great job, an adventurous group of friends and he has caught the travel bug. I’m super proud of Jack because sometimes it is really hard being the brother of a kid who needs things done differently. 

Tom also loves the new lifestyle.  He has his own little hobby farm with sheep, goats, a pig, ducks and chickens, and our two dogs are never far from his side. Tom loves hanging out with his Support Worker and Mentor.  The two of them have developed a really special bond, especially on the golf course when their competitive sides come out. 

Tom really is such a lovable character and he makes me proud every day.  Yes, he has a significant hearing loss and being deaf forms an important part of his identity. But it does not define him.  He is also funny, clever, inquisitive, thoughtful, kind-hearted, and bilingual. Tom is interested in the world around him which makes him an interesting person to be around. He is a golfer, a good cook, an animal lover, a gamer and a young man with one foot in the deaf world and the other in the hearing world.

Becoming a Parent Mentor

The move the Queensland also gave me the opportunity to become a Parent Mentor with Deaf Children Australia.  I had heard about their Mentor programme and always thought that I would like to be a part of that – part of a team who can help other families through those tough times that I remember going through.

As a Mentor, I get to speak with parents who are all at different stages of their child’s journey with hearing loss.  The families know that I am not a specialist, not a medical professional in any way.  I am ‘just a Mum’ who gets it.  I’ve walked in your shoes, I’ve had the same thoughts and worries, the same doubts, the same highs and lows.  And yet, we all have a different journey that is unique to our families.

Why do we need a Speech Therapist when my baby is so little?  Will my child be ok at school?  Will my child’s speech sound funny?  Sometimes I can hear myself in the voices of parents who ask me these questions because I’ve been there.  And, looking back now, I can see there was only one player missing from “Tom’s Team” – a Parent Mentor.  Somone I could talk to opening about what I was going through.  Someone who wasn’t coming at me from a medical angle or with a therapy goal in mind.  As a Mentor I feel really privileged to be a part of someone else’s team.  I am happy to share my story of Tom’s journey.  The ups and downs, the tough times, the funny times, the small wins that others take for granted but can be a big deal for us.

Like the time when I was at a playground with Tom when he was about 3 years old.  A little girl asked “what’s that in your ear” while pointing to his hearing aid.  I could see the other Mum drop her head like she just wanted to disappear from embarrassment.  Tom replied with a very matter of fact “that’s my hearing aid, my ears don’t work good, they help me hear”.  Wow!!  And then there was the next time we visited the playground and Tom was playing with a little boy who had one arm shorter than the other.  Tom shouted out “hey Mum what’s going on with his arm?”.  Now it was my turn to go a shade of red.  I found my voice and told Tom that the little boy’s arm is just different to his arm, just like his ears are a bit different.  The Dad and I shared a little giggle while the boys just kept on playing. 

As a Mentor, I hope that I can help other parents to find their path on their journey with their little one.  I’m here to be a listening ear, a sounding board and a friendly voice at the other end of the phone on the good days and the bad.