Our Story : A Journey of Love, Challenges, and Teamwork

As a neurodivergent woman diagnosed with ADHD six years ago, my life has been a vibrant tapestry woven with diverse experiences. I am also a proud mother to a son with ASD/ADHD and a daughter with dyslexia. Within this family dynamic, we navigate a variety of conditions, including social anxiety, insomnia, and sensory processing disorders amd more. It often feels like we are a box of assorted chocolates—each with its own unique flavour, challenges, and strengths.

Initially, when we started our journey with our son, I had no idea that I was neurodivergent myself. It was through this journey with him that I began to discover so much about myself and find answers to a lifelong feeling of being "different."

Being a neurodivergent parent and raising neurodivergent children has brought us many ups and downs. There are days when my condition allows me to hyper-focus on my children's needs and move mountains for them, but in the aftermath, I often find myself emotionally exhausted and too depleted to be the parent they need.

Our greatest learning has come through shared experiences. Around the time my son was transitioning from kindergarten to school, everything began to unravel. From day one, school was challenging for my son. He was overloaded and anxious, but he didn’t present that way; instead, he presented as a child struggling to connect socially with his peers and resorted to inappropriate behaviours to find that connection.

This led to social ostracisation, which further intensified his anxiety. Classrooms were overstimulating for him, filled with excessive visual distractions. The open-plan nature of the primary school meant that he was constantly overwhelmed. 

By the time Year 1 rolled around, we were in the eye of the storm, battling testing, sleep issues, and even surgery to assist his sleep conditions. We were exploring various factors contributing to his challenges. Without a doubt, we were in complete denial.

Then came 2020, and with it, COVID-19 disrupted everything familiar and routine, taking away the structure we didn’t even realize we had built. For my son, the world he was learning to navigate was changing before his eyes. You might think that being at home with family would be the best thing for him, but in reality, it stripped away the structure he relied on to get through each day.

We received a diagnosis of ADHD for my son during the start of the pandemic. Online learning was impossible for him and brought out immense anxiety. Attempts to learn onsite often left him isolated from his support structures. Surprisingly, this diagnosis was a shock; we had anticipated an autism diagnosis, but instead, we learned that he was struggling with attention deficit hyperactivity within the classroom.

By this point, my mental health had severely declined. Homeschooling two children while trying to work and manage my son’s mental health was overwhelming. Panic attacks and sensory meltdowns became daily occurrences; it was the hardest time I’ve ever experienced.

From my experience, I can confidently say that the mental health of parents caring for struggling children is crucial. Reflecting on my conversations with schools, doctors, and therapists, I often wish that one of those discussions had begun with, "Before we talk about my son, we just want to check in and make sure you are okay." 

We agreed with our paediatrician that stimulant medication was the best option for managing my son’s condition. We also supported him with occupational therapy, which helped him understand how his body moved and how it impacted those around him. When he started the medication, it was like night and day; he became focused and regulated. However, when the medication wore off, the side effects were severe and cruel. The weight loss was alarming, and despite knowing I was helping my child, the guilt weighed heavily on me.

Managing stimulant medication felt like playing a game of Russian roulette. My son experienced rebound effects, where the symptoms we aimed to control became exacerbated as the medication wore off. Every time his mental health declined, my anxiety and adrenaline surged as I faced the uncomfortable looks from other parents or awkward apologies for his behavior.

As Grade 3 began, we emerged from lockdown, but the scars of our experiences were deeply etched in all of us. We had tried four different types of stimulant medication, none of which were successful. My son reacted negatively to every one of them, experiencing sadness, anger, and significant physical side effects.

In Grade 3, he was finally diagnosed with autism spectrum disorder, with a sub-diagnosis of Asperger's. His diagnosis was recognized by the NDIS as a “level two disability,” meaning he requires significant support services and care. Following this, we placed him on a non-stimulant medication to help with anxiety, depression, and to calm his brain receptors, which ultimately improved his attention and impulse control. For kids like him, finding the right medication can feel like giving a child who can’t see a pair of glasses for the first time.

After receiving my son’s diagnosis, we began to realise that the environment he was in might not be suitable for him. He was attending school part-time but wasn’t learning anything and felt socially ostracised. Watching him struggle was heartbreaking. Despite our continuous advocacy for his needs, the limitations of the public school system became evident.

Parenting a child on the spectrum has been one of the most rewarding yet challenging experiences of my life. 

I don’t view the relationship between families and schools as a "them versus us" situation. I see it as a collaborative team effort. We are all here to work together, and simple, effective communication can help manage their conditions in the learning environment.

Despite the enormous doubts and worries about transitioning my son into a new school for Grade 4, it has proven to be the best decision we could have made. While it hasn’t been without its challenges, he has thrived. 

His first year at the new school was filled with success. He was elected STEM captain by his peers, delivered a one-minute speech on why he would make a great captain, and sang solo at a school event, moving family members to tears. He thrived on camp and even participated in the school play, proving that with the right support, he can overcome challenges, manage change, and build relationships by simply being himself.

You might be wondering why the change was so significant. The answer is simple: understanding, effective communication, and scaffolding for the child. Every day, I walk my son through what is expected, outlining his schedule and potential challenges. 

If there’s one thing I can impart, it’s this: by the time a neurodivergent child sits in your classroom at 8:30 AM, they may already feel exhausted. Life is full of obstacles for these kids, and sometimes all they need is reassurance that they are doing a good job.