By Natasha D’Arcy
Stories with soul: Source Mamas raising their kids with disabilities. The tears, the triumphs, the raw and the real.
How did you first become aware that there might be a concern about your child’s health or development? What were the early signs that led you to seek a diagnosis?
Miller’s pregnancy and birth were completely normal. Our first indication that something was ‘different’ about our little guy was when he referred on the newborn hearing screen. A few tests later revealed that he had moderate bilateral sensorineural hearing loss.
At first, we thought that was all we were dealing with, but around the 7-8 month mark it was clear he was falling behind in reaching his milestones. I have two older boys so I knew what to expect and when he was around 9months old we reached out to a physio and eventually, we were referred back to the Queensland Childrens Hospital for genetic testing as global delays in addition to a hearing loss were considered “Red Flags”.
Can you tell me a bit about the diagnosis your child received? What does it mean, and how does it affect your child’s life?
Technically, Miller doesn’t have a diagnosis apart from hearing loss and Global Developmental Delay. He has hypotonia and diskentic movements and now at 3.5 years he is unable to crawl, walk and talk.
Our genetic tests came back with one abnormal SPATA5 gene, but the other SPATA5 gene is of unknown significance, meaning no one else in the world has yet presented with this gene. We’ve been told although it’s likely that is the cause of his delays, it’s not official until more genetic data comes to light.
Without an official diagnosis it can be tricky to describe Miller, so often I liken him to a child who has level IV Cerebral Palsy. Without a diagnosis it’s hard to determine what his needs will look like in the future and how his disability will affect him later in life.
How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make to support your child?
Our life has completely changed since having Miller. We were a very active family prior but now it’s difficult to go out and about as a family. As Miller gets older, his physical needs are quite challenging. We’ve had to learn how to navigate the NDIS system and advocate for his needs in a variety of settings.
Communicating with Miller is a challenge as he is non-verbal. We have learnt sign language as a family and we’re currently using a PODD book and trialling AAC devices. The amount of equipment in our home is next level! I could almost open a playcentre for all the softplay equipment we have in our home.
What kinds of treatments, therapies, or interventions has your child been receiving? How have these approaches helped your child’s development and well-being?
Each week we see a physio, OT and speech therapist. Miller also attends weekly Hydro which he absolutely loves, he is such a little water baby! We have also attended 3 intensive therapy sessions. Two were in Sydney NAPA for 3 weeks, and another 3 weeks on the Gold Coast at the Centre of Movement. Although there’s a lot of benefits to this delivery of intensive therapy, it is very taxing on the family as I’ve had to travel and be away from my husband and kids during these sessions.
Miller is also in our local Race Running group. He loves his little bike and the community spirit within the group of kids is awesome. Despite all of this however, we try to treat Miller the same as his brothers and do our best to ensure he doesn’t miss out on anything by including him as best as we can.
As a parent, what are your primary concerns and hopes for your child’s future in light of their diagnosis? How can those around you offer support during this time?
We just want Miller to be happy and to become a contributing member of society. We want him to have friends, join communities, enjoy hobbies, get a job, drive a car, meet a partner etc. Just normal everyday stuff that most people take for granted is all going to be challenging for Miller as he ages. The best way people can support us is to just ask about Miller, check in on him and cheer him on from the sidelines!
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