“The dream of a ‘simple’ family couldn’t be further from our reality”

This personal essay was written by a mother called Rebecca who’s a member of Australia’s Envisage community, an organisation supporting caregivers to embrace contemporary, strengths-based ideas about health, wellbeing, and development.

The beginning

For as long as I can remember I felt my purpose in this world was to have a family. Growing up, when I would see families, everyone always looked so happy. Life looked easy. Life looked ‘normal’. Fast forward 20 years and here I am, a happily married mum of two beautiful children. My dreams became my reality.

Our journey to parenthood wasn’t the smoothest of sailing and our first two pregnancies ended in heartbreak, however after a bumpy but healthy third pregnancy, we welcomed our daughter, Ashlyn-Rose, in 2014.

Life with Ash was always full of ‘wow’ moments. She was always ahead of her milestones, she showed a natural interest in learning new skills and had an incredible ability to memorise and recall information. Both myself and my husband were absolutely blown away by just how clever Ash really was.

Don’t get me wrong, there were definitely challenging times in the mix. Ash was a baby who didn’t love sleeping alone but did love her breastfeeding time with mummy. I was the only one who could settle her to sleep and she woke regularly in the night until she was two and a half.

As a toddler, Ash found a love of pushing over her friends and watching the reactions that would follow. As her parents, we really struggled with this behaviour at the time. However, Ash’s sweet nature and bubbly personality usually won people over and the pushing would quickly be forgotten – until the next time it happened.

Life at that stage was pretty simple. Due to Ash’s strong love for her mummy, returning to work was not an idea I was willing to entertain. As a qualified childcare educator, I managed to work from home caring for other children. This was perfect as it meant that Ash was able to keep her secure attachment to me, but also gain incredibly important social skills – and I could help financially contribute to the family.

In 2017 I was ready to enter the workplace again and when the time to go to daycare arrived, Ash separated well and enjoyed the interactions with others. The desire to push her peers reared its head again, however, this was short lived among all of the new fun things she had to do.

When the world was about to change

I ended up working at the centre Ash was attending and three months into my new role, in October 2017, I found out I was pregnant with our next child, Logan. Logan’s pregnancy was a little more complicated than Ash’s. Towards the end we had a few stays in hospital and finally, at 37 weeks, our official induction day arrived.

Logan’s labour was relatively fast and uneventful, however, four hours after he was born our world shattered when Logan was whisked away to the special care nursery in respiratory distress.

After an incredibly scary 10 days with many ups and downs, Logan overcame his early challenges and we were able to take him home and be together in our little bubble. In his first 12 months, Logan met all of his early milestones. He lit up the lives of everyone who crossed his path and he slept through the night from three months of age.

Life was pretty amazing– but little did we know how much our world was about to change.

Over the months that followed it was very clear that Ash and Logan were complete opposites in the milestone department.

Once Logan turned one I was watching his development like a hawk, always trying to reassure myself that the areas that were slowing were just a case of girl versus boy development. Along with delays in Logan’s gross motor development, soon enough, his speech, social and play skills were not falling within ‘normal’ toddler development.

With that, my mind went into a spin.

Meanwhile, Ash was being an incredible big sister who loved her little brother, daycare, singing and dancing. Until she turned five – things started to change.

Kinder started to pose some unexpected challenges for Ash, who began showing signs of resistance to changes in routine and transitions. Socially, she was starting to become more controlling and rigid in her ideas. She would become overwhelmed when too many children were in her space and her inability to regulate her emotions was starting to show.

The journey to a diagnosis

By the time he was 18 months old, Logan’s development was behind what would be considered to be ‘normal’. He had an incredibly strong attachment to anything that would spin, bright lights kept his gaze for long periods of time and, after showing signs of early speech development, everything came to a screaming halt and only babble remained.

I raised my concerns with our Maternal and Child Health nurse at Logan’s 18 month check and, after completing the relevant assessments, our concerns were validated.

Drawing on my professional knowledge coupled with hours of research, I was absolutely certain that Logan would be diagnosed with Autism. However, at this stage, he was given a diagnosis of a global developmental delay (GDD) alongside delayed speech and communication skills.

I didn’t waste time. We quickly worked with our local early intervention team and were able to access NDIS due to Logan’s age and needs meeting the criteria without an official diagnosis. At just 20 months, Logan started working with a beautiful occupational therapist and speech pathologist and, in time. I realised the true extent of the extra support that Logan would need.

Not long after his therapies started, Covid hit. It was such a scary time as all of our supports were moved to telehealth and the whole world changed. Thankfully Logan was happy to engage with his therapists through the laptop screen.

As time passed and more appointments were had, my thoughts were validated. Alongside Logan's GDD, he was also diagnosed with Autism.

My heart and mind went round in circles. The easy family life I had previously dreamed of was now being mourned as I looked ahead towards a future of uncertainty. Lives as we knew it had been flipped upside down and everything had changed.

For Ash, the journey was significantly different. Although we had seen some early signs of what could be classed as autistic traits, nothing was significant enough to warrant looking into things further.

During Covid both my husband and I were classed as essential workers, so Ash, who was in her first year of school, attended under the on-site supervision requirements. She absolutely thrived in the classroom and her passion for learning was evident, as was her incredible ability to zoom past her peers, working well ahead of the majority of the other children in her year level.

As time went by, it was clear that Ash struggled with her emotional regulation. We encountered endless big feelings, usually in reaction to what seemed to us to be incredibly small things. Friendships began to become trickier and changes to routine would send her into a spin. The post-school emotional tornado was a common occurrence.

Red flags were flashing before my eyes. This was a really tough time for our family. After Ash’s flying start to life, hubby struggled to see her changes as anything outside of ‘naughty’ behaviour and at times, this caused quite a bit of conflict within the home.

Every birthday Ash had, we were hopeful that things would get easier. Sadly, however, every year that passed became harder and harder. Call it mother’s intuition but I knew, deep down, there was more to it.

When Ash turned six and with things escalating rapidly, we started the diagnostic journey for our daughter who was once full of sparkle and light – and was now filled with big overwhelming emotions, sadness and frustration.

Ash is the master of masking so the journey to receiving her diagnosis was long and arduous. She knew exactly how to act around others and would answer things with responses that she thought others wanted to hear. I was constantly met with pushback and it broke my heart as I watched my beautiful daughter fade into the background. But I wasn’t going to give up. I just fought harder. And finally, in 2023, as Ash’s world became harder and our hope was fading, the advocating and hard work paid off.

By 2024, Logan has been diagnosed with Autism (Level 3), a mild intellectual disability and ADHD. Ash has been diagnosed with Autism (Level 2) and ADHD.

The dream of a ‘simple’ family couldn’t be any further from our reality. Our lives are filled with the highest of highs and the lowest of lows. Nothing we could have ever dreamt of could prepare us for the parenting journey we are now on.

The journey to finding Envisage

Through my teaching job I was always advocating for children and their families, highlighting the importance of early intervention and parental self-care. However, like many people, I never really practised what I preached.

I put everything I had into my family and my work and after that, I had nothing left in the tank. At night I was a screaming, overwhelmed and impatient parent – which was not who I ever wanted to be. I felt guilty for being so reactive, but nothing I did would help.

In 2022 I made the incredibly hard decision to give up the job managing a centre I loved in order to be fully accessible to my family and to try and provide some respite for myself in the process.

I did everything I could to educate myself by signing up to various training sessions and support groups. I wanted to ensure that our children had what they needed to make their worlds easier while also trying to lighten the load on us as parents.

Throughout this process, Logan’s OT pointed me toward the Envisage Families Workshop and I signed up without hesitation. As a parent of children with additional needs there is nothing more comforting than being surrounded by people who understand your circumstances, that you can truly open up too without judgement. I found the opportunity to share and support others to be just as rewarding as the information I gained for myself.

Through the Envisage families workshop, not only did I have access to passionate professionals full of advice and support, I was able to gain new information relevant to my own family’s needs. I also felt empowered to be able to share my own family’s journey with other families who had registered – many of whom had only just started on this long and winding rollercoaster.

If you have the opportunity to participate in an Envisage workshop and connect with other families in your situation, I highly recommend it, you won’t regret it.

Find more caregiver stories, resources and support by visiting the Envisage website and following Envisage on Facebook and Instagram .