OUR FAMILY INCLUDES MYSELF, MY NINE YEAR OLD DAUGHTER AMELIA, AMELIA’S DAD, TIM AND OUR GORGEOUS SCHNOODLE PUPPY SOPHIA.
WHERE DO YOU LIVE?
We live in the northern suburbs of Melbourne.
WHAT IS YOUR CHILD’S DIAGNOSIS AND HOW DOES IT AFFECT THEM?
Amelia is both profoundly deaf and on the autism spectrum. This combination of diagnoses affects her in myriad ways.
Her deafness was discovered late (at two years), which resulted in a severe speech delay that she is still working hard to overcome. In the beginning Amelia had some hearing and wore hearing aids. In 2017 she lost the rest of her residual hearing for some unknown reason and now has a cochlear implant. This decline over time has meant that her speech development has continued to be a struggle for her.
Amelia’s autism is characterised by a number of traits and behaviours. She can be highly anxious and obsessive, finds social interactions difficult (compounded by her deafness in a hearing world), displays extreme emotional responses and is sometimes hard to draw out of her interior world.
The combination of diagnoses has made Amelia’s connection to other people and engagement in social situations very challenging.
WHAT LED TO THE DIAGNOSIS?
At age two, Amelia’s speech had not really developed; she only had a few words but seemed to be losing these too. In the process of seeking help for her lack of speech a routine hearing test (her first) was conducted, revealing that she had a moderate-to-severe hearing loss.
It was thought that Amelia was probably born deaf, given how little speech she had acquired since birth. It is impossible to learn how to speak if you can’t hear speech sounds properly.
Around this time, Amelia started to exhibit some troubling behaviours and was prone to rage-filled outbursts. We assumed that she was feeling very frustrated as she adjusted to new hearing aids and was exposed to some sounds for the first time.
By the time she was four, these behaviours had settled in and made her life (and ours) so hard to manage. I realised that there was more going on with Amelia than ‘just’ deafness.
An urgent referral to a paediatrician and psychologist led to her autism diagnosis and from there a new understanding of our daughter’s challenges.
IS YOUR CHILD IN SCHOOL? HOW ARE THEY DOING/HOW ARE THEY SUPPORTED?
Amelia is in Grade 4 at a wonderful bilingual school for deaf children. There, she learns in Auslan (Australian sign language) and in spoken English. Her class sizes have been small (5-6 kids), which means that she gets an amazing amount of care and attention, particularly where she might need extra help to join in and engage in class discussions.
The school offers group speech therapy and I participate in a one-on-one session with Amelia and her speech therapist once a week.
A subsidised bus service collects her from our house in the morning and brings her home in the afternoon.
Amelia LOVES school passionately and I have seen her grow into a confident and happy girl. She has come so, so far.
WHAT THERAPIES DOES YOUR CHILD DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE?
Over time Amelia has seen an occupational therapist, a child psychologist, speech therapists (school-based, private), attended a social skills group and the numerous medical appointments that go along with her diagnoses and their ongoing treatment.
It is easy to feel overwhelmed by the sheer number of appointments, especially when I’ve had to take Amelia out of school and she would have incredible meltdowns about the change in routine.
My tip would be to regard therapies as required on an intensive basis for certain periods of time. In the beginning, Amelia needed so much help just to cope with the day so her therapies were numerous and regular.
Now she is maturing and adapting, we maintain speech therapy that keeps her in school, which is the most important place for her overall development. You can opt in and out as it suits your child and your family.
WHAT CURRENT GOALS DOES YOUR CHILD OR YOUR FAMILY HAVE?
Our current goals for Amelia are pretty simple. Outside of school and her speech therapy homework, we want her to have FUN. She’s doing a drama play group on the weekends and has started doing some Pilates this year too. These activities feel like a gift to her and us after years of hard work.
For our family, we just want to keep moving forward. Every year we grow braver and try things we didn’t think possible, like go on more holidays together.
WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY?
Listen to your instincts. There have been times when I knew that something was seriously wrong with Amelia’s health and wellbeing before others were prepared to admit it. That voice in my head that spoke to me at night, saying, “my girl is in trouble and needs help.” There’s no harm in seeking advice if it turns out that things are okay, but in my experience, that inner warning system is usually buzzing for a reason. Back your knowledge of your child first and foremost. Nobody knows them better than you.
AND WHAT’S THE MOST ANNOYING/UNHELPFUL/ STRANGE ADVICE YOU’VE EVEN BEEN GIVEN?
Someone once said to me that all Amelia needed was for me to love her. I really hated that advice because I know from experience that she needs way more than my love to meet the very real challenges ahead. I felt like it negated the hard work and effort we were all putting in to make Amelia’s life better. I still do.
WHAT DO YOU DO FOR YOU TIME?
I take care of my health. For me, this means exercise. I have always been active but after Amelia was born and things started to become difficult, I made time whenever I could to be outside, to run, to do Pilates and go for walks.
Last year I published a book about my parenting journey – Amelia and Me: On Deafness, Autism and Parenting by the Seat of My Pants – writing has been a highly therapeutic way to cope with the things that have happened to us and help people around us to understand Amelia better. Find out more at: melindahildebrandt.com.au
WHAT ARE YOUR HOPES FOR THE FUTURE?
I hope so much that Amelia grows up feeling happy and safe in the world. I want her to be independent and confident as a deaf-autistic person navigating her way through a hearing world that may be confusing and isolating at times. I want her to discover her passions and follow them with all her heart.
WE WOULD NEVER MANAGE WITHOUT THE FOLLOWING…
PEOPLE (OR BUSINESSES) WE LOVE:
Our family and friends who have supported us for so long and love Amelia.
Our paediatrician who is a saint and the greatest medical professional in the world. All of Amelia’s teachers and the people who work at her school who ‘get’ her and help her grow every day.
Our speechies who are so patient and dedicated.
House of Muchness
St Martin’s Youth Theatre