Our family is Cameron, Vanessa, Olive (9), Archer (7), Gus (4) and Daisy (kitten, 4 months), and we live at Elanora Heights on Sydney’s Northern Beaches.
WHAT IS YOUR CHILDREN’S DIAGNOSIS?
Both Olive and Gus have been diagnosed with Fragile X syndrome, something we’d never heard of before. In fact Cameron thought the paediatrician said Gus has ‘Fragile eggs’ – he was very confused. Cameron went in to it’ll be alright, we’ll make it work mode and I just cried and cried – I was grieving.
I felt cheated, scared and worried for the future. Then there was all the guilt. The guilt that I had passed on my faulty X chromosome and the guilt that our son Archer would have two siblings with additional needs. It took time to come to terms with the diagnosis, but I now feel hopeful of the future and more confident that we will be able to navigate our way through the challenges.
Olive has learning and social difficulties and can also find social situations challenging and difficult to navigate. She also has anxiety and finds the intricacies of language, especially inferences very tricky. Being a nine year old girl – the school playground can be very overwhelming for her.
Gus has an intellectual disability and has been delayed in achieving his developmental milestones such as walking and talking. Gus also has anxiety and struggles in social settings.
They both have low tone, find emotional regulation near impossible and are extreme sensory seekers. Gus also has hypermobility. Fragile X syndrome is linked to autism, however both kids missed the memo for this one and have ADHD instead.
They both have an infectious smile, a great sense of humour and give the best cuddles….you just have to catch them first!
WHAT LED TO THEIR DIAGNOSIS?
We always knew there wasn’t something quite right with Olive; she was a quirky kid, however, every professional we saw couldn’t pinpoint what the issue was. We tried various therapies and diets that had some initial impact but never fully resolved things. Her behaviour intensified when her brother Archer was born. She would constantly touch him, pick him up, cuddle or hit him. It was a very stressful time. We sought professional advice however was told that her behaviour was just sibling jealousy.
After Gus was born, he started to miss developmental milestones. He was a bottom shuffler and while we thought this was really cute, he was so flexible in his hips we thought he needed some strengthening exercises of some sort. Our diagnosis journey started with a very clued in paediatric physiotherapist. Gus was making progress and getting stronger after his paediatric physio sessions, however we decided to see a paediatrician. The paediatrician spent over two hours examining Gus and couldn’t put his finger on what was exactly wrong, and he suggested genetic testing. The results came back confirming Gus had Fragile X syndrome and when the paediatrician was explaining the symptoms it was like he was describing Olive, with blood tests later confirming that she also had Fragile X syndrome. Our world certainly looked different from that day.
HOW ARE YOUR CHILDREN DOING IN SCHOOL?
Olive is in year 4 at the local public primary school. She loves going to school and has a great network of friends who are all very supportive of her quirks. She is so proud of how well she reads and her spelling is really coming along. Olive is easily distracted in the classroom and can find it challenging to maintain concentration. When things are tough for her, she is disruptive. Her teacher is amazingly supportive and very open to trying new methods of emotional regulation for Olive so she can be a better learner. She can also find the social interactions in the playground challenging.
Olive attends additional smaller sized classes to assist with her reading and comprehension. She has modified mathematics work and a couple of hours a week allocated for one-on-one support in the classroom. She is working on functional maths: basic numbers, telling the time and understanding money – a concept that is very tricky for her but a very important life skill.
Gus attends a local community preschool three days a week and they are really supportive. He has a dedicated member of the teaching staff allocated to support him; she is amazing. He is thriving in this environment and interacts well with the other kids. He is working on giving ‘gentle’ cuddles as he often loves his friends a little bit too much. We are very proud of his communication and language skills – he is now consistently putting two and three words together. Gus is currently interested in drawing and learning how to write his name, he continues to amaze us and his educators with how well he is going.
WHAT THERAPIES DO YOUR CHILDREN DO?
Olive attends speech therapy weekly, OT fortnightly and sees a chiropractor every 4 weeks. Psychology sessions have been helpful too so we are in the process of getting back into that every 3 weeks.
Gus attends weekly speech therapy, OT, music therapy, swimming lessons and sees a chiropractor every 4 weeks.
It’s challenging finding time to juggle the kids therapy plus sport – training and games for Olive and Archer. Cameron is able to work from home one day a week so we align this day with Olive’s OT. Gus’s appointments are on the days he doesn’t attend preschool and as his full-time carer I am able to take him to these appointments.
We try to schedule any appointments so that only the child attending the appointment is there and is not distracted by their sibling.
WHAT CURRENT GOALS DO YOU HAVE?
To continue to support Olive through the remainder of primary school and find a suitable high school that will be able to cater to her challenges to allow her to thrive and gain the maximum out of the remainder of the schooling period of her life.
The short-term goal for Gus is similar to Olive’s and find a suitable primary school that will allow him to continue to flourish, learn and enjoy the experience.
As a family it’s about finding a balance between meeting the needs of the kids and just doing everyday typical family things.
WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY?
While being mindful that everyone’s story is different, as much as it is a cliché you have to be mentally strong and confident in yourselves as parents. If you are still grieving what was, it’s too hard to move forward.
They say it takes a village to raise a child, at this time this saying could not be more pertinent. Be open to help and support from family/friends/ community. Most won’t understand what you’re experiencing but by accepting their offer of support it allows them to feel they are contributing.
Don’t be afraid to change service providers if it’s not helping to achieve the desired outcome. We have also changed providers if it didn’t feel like the kids had a good connection and/or relationship. At the end of the day it’s about ensuring the kids get the maximum benefit out of these early intervention activities.
I remember one of the first things our paediatrician said to us was “don’t look at Gus any differently. He is the same boy today that he was yesterday”. At the time this infuriated me and I couldn’t believe that he’d said that. Now I totally understand what he meant, and I agree with him. It just took some time to come to this realisation.
WHAT ARE YOUR HOPES FOR THE FUTURE?
Inclusion, inclusion, inclusion in all aspects of community.
We’d love for people not to stare or be afraid of people with additional needs. We understand that it’s human nature to feel uncomfortable around the unknown, but a friendly smile or a simple hello goes a long way.
PRODUCTS WE LOVE:
Sensory items such as Chewies, Noomi bean bags, bubbles. Our trampoline is the best form of exercise and regulation ever.
PEOPLE (OR BUSINESSES) WE LOVE:
Our wonderful team of therapists. They put their heart, soul and hours of work and love in to understanding our kids and our family. Without their help, I’m not sure where we’d be.
Our absolutely amazing family and friends. Their support, understanding, concern and unconditional love is mind blowing. We are the luckiest little family on the planet to have them.
Eva Tatrai at KIDZ COMMUNICATE
Kerry Gibbett, Occupational Therapist
Anita Connell at Tuned In Music Therapy
Lisa Hughes, Occupational Therapy Helping Children
Amy Mulkearns, Speech Pathologist at Northern Beaches Speech, Language and Reading
Dr. Andrew Ullo (Chiropractor),
Absolute Health Solutions