OUR FAMILY CONSISTS OF:
My husband Glen and I, our beautiful girl Ivy and her baby brother Austin.
WHERE DO YOU LIVE?
We’re in Malvern East, Melbourne. Fortunately, it’s about halfway between our families and the Royal Children’s Hospital!
WHAT IS YOUR CHILD’S DIAGNOSIS AND HOW DOES IT AFFECT THEM?
The umbrella term is Developmental and Epilepsy Encephalopathy, with the affected gene being SCN8a. Ivy endures ongoing seizures, cortical visual impairment, a movement disorder, global developmental delay, is significantly low-tone, non- verbal and has gastrointestinal complications so she is tube fed.
WHAT LED TO THE DIAGNOSIS?
I look back on what could only be described as a typical and trouble-free pregnancy and birth. Two days in, Ivy’s infant hearing screening returned as ‘inconclusive’. A month later a follow-up audiology appointment confirmed Ivy had Auditory Neuropathy Spectrum Disorder. Glen and I look back on, and cherish, that first month when we were ‘just’ typical first-time parents. The hearing diagnosis was shattering but ironically Ivy’s hearing has proven to be her best sense. The first seizure came soon after – and our small world collapsed. The initial guess was Leigh’s Disease, a severe infant onset form of mitochondrial disease. This was an intense, confusing and emotional time. We had many more questions than answers and at the same time were trying to carry on as parents of a newborn. In a modern world overflowing with advances in technology driven by the brightest of minds it was hard to comprehend that there were no treatments, let alone a cure. We turned to one another for hope and discovered a great deal of strength and resilience.
Two years later we found a precise answer, a mutation in the SCN8a gene, as part of a ‘trio genomic sequencing’. Ivy is one of about 150 children in the world, who all have varying degrees of ability. The diagnosis has changed things dramatically. For Ivy it means more targeted seizure medication and care.
IS YOUR CHILD IN SCHOOL? HOW IS SHE DOING?
Ivy attends Malvern Special Needs Playgroup, an incredible organisation – fortuitously just around the corner from home – that gives her (and us) a genuine sense of inclusion and place in the community. Ivy gets to spend her time with the loving and caring staff and volunteers, and I can plan some respite time with certainty. Walking in each week and seeing her smiling at the music and participating in the activities is pure joy.
In another couple of years Ivy will attend school. This will be a significant milestone, as when you are faced with such a diagnosis these sorts of hopes and dreams can fade. We are very excited about Ivy having the chance to spend time in a different environment with the sensory play that she enjoys.
WHAT THERAPIES DOES YOUR CHILD DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE?
We’ve only ever known doing everything and anything to realise our child’s potential. That said the appointment and commitment schedule can be relentless so we make sure we group things together where possible and section off a day or two a week to spend time together as a family, even if it’s cuddles on the couch and singing along to Play School’s Greatest Hits. We are motivated by therapies that make Ivy comfortable, draw out her happiness and connect her socially.
In between the drama of the day-to-day, I try to multitask and incorporate care as part of the other activities. This is a must when caring for a child with no voluntary movement. When Ivy is in her standing frame, for example, she must be constantly supervised. I use that time to do things such as brushing her teeth and hair and preparing medications while we sing songs and play with her toys.
WHAT CURRENT GOALS DOES YOUR CHILD OR YOUR FAMILY HAVE?
Ivy has been on continuous feeds and unable to eat for about a year due to her gut issues. In recent months things have improved and we are hoping to reintroduce tastes and textures of different foods. Ivy has taken to chewing dried mango – it is full of flavour and gives her a chance to use all those new (and sharp) teeth.
WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY?
That ‘the darkest hour is just before the dawn’. Things do get easier with time. Looking back, we were surprised at what was almost an instinctive response to adapt and respond to one challenge after another. You must grieve in your own way – for the life you thought you would have with your child. While it can be all consuming, it is important to remember that the experience is but one chapter in life – and there is much love and joy to come.
AND WHAT’S THE MOST ANNOYING/UNHELPFUL/STRANGE ADVICE YOU’VE EVER BEEN GIVEN?
You sometimes need that person to stop and listen. Not to respond with ‘don’t worry, it will be OK’, or ‘you should get a second opinion’. Just listen! What’s that famous quote… We have two ears and one mouth so that we can listen twice as much as we speak.
WHAT DO YOU DO FOR YOU TIME?
First of all I never feel guilty for prioritising time for myself, or for Glen and I. As a full-time carer I have a great responsibility to Ivy to be the best that I can be, and routinely taking some time to recharge and refresh is a crucial part of this. For me it’s going for a long walk, stopping for a coffee and diving into a good book. As a couple, going to a restaurant ‘pram-free’ or just to the movies is wonderful.
WHAT ARE YOUR HOPES FOR THE FUTURE?
For all people with a disability it’s vital that ‘access and inclusion’ are more than just aspirations. Universal access must be central to urban design, not just a ramp as an afterthought. Genuine inclusion must be more than just a soft path around the perimeter of a tanbark-filled playground, it requires a design-led attitude that fosters real social connectedness. Glen is a local government councillor and is a strong advocate for people with disabilities – channelling his experience with Ivy to bring about community change.
WE WOULD NEVER MANAGE WITHOUT THE FOLLOWING…
Products we love:
• Cozy headrest
• Swimming neck collar
• Carrot seat for the car
• Homemade sensory board
PEOPLE (OR BUSINESSES) WE LOVE:
Malvern Special Needs Playgroup
Very Special Kids (special mention to Edwina Hargreaves)
Ivy’s complex care team at the Royal Children’s Hospital – nurse Sian
Paediatrician Margie Danchin and the Sugar Glider ward at the Royal Children’s Hospital
Starlight Foundation for granting Ivy’s wish to “have fun in Tasmania”
Grandparents Robyn and Michael, Pam and Chris