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Finding Strength in Sharing: Our Family’s Journey

Posted
30 July 2024

Growing up when I would see families; everyone always looked so happy, life looked easy, life looked ‘normal’

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, our first two pregnancies ended in heartbreak, however after a slightly bumpy but healthy 3rd pregnancy, we welcomed our daughter Ashlyn-Rose in 2014. 

Life with Ash was always full of those ‘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, she loved her breastfeeding time with mummy, I was the only one who could settle her to sleep, not to mention the regular night waking until she was 2 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, so 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 also help to financially contribute to the family.

In 2017 I was finally ready to enter the workplace again. During her first 3 years of life Ash’s secure attachments had led her to being an incredibly confident and self-assured child.  When the time to go to Daycare arrived Ash separated well and enjoyed the interactions with others, the desire to push others reared its head again, however this was something that was short lived with all of the new fun things she had to do.

When the 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. 

I ended up working at the centre Ash was attending and 3 months into my new role, the universe had other plans.  I found out I was pregnant with our next child Logan in October 2017.  From around 30 weeks, Logan’s pregnancy was a little more complicated than Ash’s.  Towards the end we had a few stays in hospital and various potential induction dates, thanks to my blood pressure being uncontrollable. Finally at 37 weeks our official induction day arrived.  The induction medication didn’t end up being needed and Logan’s labour was relatively fast and uneventful however 4 hours after he was born, our world shattered when Logan was whisked away to the special care nursery – he was in respiratory distress. After what was an incredibly scary 10 days with many ups and downs, Logan was able to overcome his early challenges and we were all blissfully back home 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, not to mention he slept through the night from 3 months of age and life was pretty amazing.

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 1, I was watching Logan’s development like a hawk, I always tried to reassure myself that the areas that were slowing were just a case of girl vs boy development.  Apart from Logan’s gross motor development soon enough it was pretty clear his speech, social skills and the way he would play and fixate on specific objects were not falling within what would be classed as normal toddler development, and with that my mind went into a spin.

Ash was an incredible big sister, she loved her little brother and daycare, she would sing and dance until she turned 5 and things started to change.  Little did we expect that after an incredible start to childcare for Ash, Kinder started to pose some unexpected challenges for our once sweet and bubby 5-year-old.  Ash started 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 it was obvious that her inability to regulate her emotions was starting to really show.  Although we had a few discussions with her teachers, nothing was screaming too strongly outside of what could be classed as within the normal range of 4-5 year-old development.

The journey to a diagnosis

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.

From around 14 months of age I really started to wonder about Logan, then by 18 months it was obvious that his development was behind what would be considered to be normal. Logan 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 the babble remained.  I raised my concerns with our MCH nurse at Logan’s 18 month check, and after completing the relevant assessments, our concerns were validated. 

Drawing on my professional knowledge coupled with my hours of research, I was absolutely certain that Logan would be diagnosed with Autism Spectrum Disorder, however at this stage Logan was given a diagnosis of a global developmental delay 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 ASD. 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.  Our lives as we knew them 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 ASD 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.  Ash absolutely thrived in the classroom and her passion for learning was evident, as was her incredible ability to zoom past her peers once again 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, and 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 year that passed things became harder and harder.  Call it mother’s intuition but I knew deep down there was more to it.

Every birthday Ash had, we were hopeful that things would get easier, sadly however every year that passed things became harder and harder.  Call it mother’s intuition but I knew deep down there was more to it. So, when Ash turned 6 and with things escalating quite 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, 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 were those that others wanted to hear.  I was constantly met with push back, it broke my heart as I watched my beautiful daughter fade into the background, but I wasn’t listening, I wasn’t going to give up, in fact it only made me fight even harder.  Finally in 2023 as Ash’s world became harder and our hope was fading, the advocating and hard work paid off.

Fast forward to 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 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

Like many people, I never really practiced what I preached. I put everything I had into my family and my work and after that I had nothing left in the tank.

Through my job, I was always advocating for children and their families, highlighting the importance of early intervention and parental self care.  Supporting families to feel seen and understood whilst ensuring they had access to the necessary services to support their own families.

Like many people, I never really practiced 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 the screaming, overwhelmed, impatient parent, which was not who I ever wanted to be.  I felt guilty for being so reactive, however nothing I did would help.

Finally in 2022 things came to a screaming halt, I made the incredibly hard decision to give up the job managing the centre that 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.  Signing up to various training sessions and support groups, I wanted to do absolutely everything I could to ensure that our children had what they needed to make their worlds easier whilst trying to lighten the load on us as parents.  Throughout this process Logan’s OT highlighted the Envisage Families Workshop they were hosting at their clinic.  I had a look and thought it looked amazing, however the session times really didn’t work for our family.  I looked online and I was excited when I discovered Envisage had an option to complete the workshop online at a time that suited perfectly.  I signed up without hesitation and eagerly waited for the workshop to begin.

When the time came, it was lovely to meet the facilitators and the other families who had also registered.  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 judgment.  As the workshop began it was clear that my previous workshops/training sessions had covered parts of the content previously.  Although this was the case, it didn’t curb my enthusiasm.  The way I look at any workshops or training opportunities is that, if I can learn one new strategy or gain one more piece of knowledge that I didn’t have when I started, then that is enough for me. 

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 families needs. On top of this 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. 

I found the opportunity to share and support others to be just as rewarding as the information I gained for myself. I’ve always been passionate about supporting families through my previous roles and If my learnings and experiences can help another family to have hope for the future, that itself is amazing.

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

Written by Rebecca