Need to know: A personal account on the challenges of neurodiverse parenting.
Three years ago my days were filled with power struggles, yelling, sadness and uncertainty about the future of my kid – if this is what they are like at 5 then what will happen when they are 12? Exhaustion and burnout kept clinging to my heels, a fog holding me back from clear thoughts about how to make things better. I couldn’t see a way out and the whole family was suffering.
Rock bottom is a lonely and overwhelming place. I love my child, but during that time I did not like them. I’m sad to say, but I felt like I was in an abusive relationship, always afraid of what was going to happen that day, would it be verbal or physical attacks. I was always on edge and extremely reactive to triggering situations. I no longer had patience or even empathy, I went straight to anger.
This was not the parent I wanted to be. This was not the kind of gentle parenting I imagined I’d be practising. I read something about “mum rage” and it made me realise that things had to change. I listened to podcasts, read articles and books in the hope I would find the answer. Clarity arrived slowly and it accompanied four life changing discoveries.
First, my child wasn’t “behaving badly” to annoy me or because they hate me. In truth, their behaviour was the only language they had to communicate that something was not quite right. They couldn’t do what I was expecting of them, not because they didn’t want to, but because they didn’t have the skills.
Second, how I responded in challenging situations made things better or exponentially worse. I had to accept that I was escalating things every time I joined in my kid’s chaos, and that wasn’t easy. They needed a calm adult to help them regulate and I was not calm.
Third, interrupted sleep made everyone’s day 100 times worse every time. My child would wake up every night and jump in my bed, and even though we were all tired, I didn’t understand that the interrupted sleep was making my child more angry, hyperactive and inflexible. When my child was up, so was I, and their lack of sleep was also my lack of sleep. Now you have two people who are on edge and without any energy to deal with bumps.
Fourth, neurodivergence is hereditary. Plot twist! I got the same diagnosis as my child a year after they got theirs. Now I could see myself. Sensory triggers, yes! Emotion regulation issues, yes! Impulsivity, yes!
I finally saw the fog lift. I began to see my child and not just their challenging behaviour. I saw an intelligent, determined, funny, sensitive kid who was struggling to meet expectations because they didn’t have the skills. I felt so much guilt for not having figured this out earlier. I felt like I was to blame, and to some extent, I was.
After a lot of self-reflection, I found the biggest triggers for me: lack of sleep and auditory sensory overwhelm from multiple sounds like the dog barking, TV, and multiple kids talking at me. They say that you can’t pour out of an empty cup, and they are not wrong! I made a real effort to focus on my well-being, and within a couple of days, I could feel myself able to cope better.
I knew there were going to be times where I wouldn’t be able to avoid stress or my triggers, so I picked a mantra to ground me. Every time my child displayed “challenging behaviours”, I would stop, count to 10 and say “they are not giving you a hard time, they are having a hard time” “You’re the adult and they look to you. What do you want them to see?”. The pause gave me a chance to respond and not react. My responses were deliberate, I met anger with calm, I met yelling with whispering, and I met mean words with loving ones.
I became more curious about what was underlying their defiance, meltdowns, aggression, etc. What skills were they missing? Were they also being overwhelmed by sensory stimuli and not know it? This curiosity about why and why now, helped me make the time to connect with my child by asking them what was going on for them in these moments. I chose bedtime cuddles as the perfect opportunity to dig deeper. These quiet minutes made my child feel heard and became the daily glue that would mend our relationship.
The more I learned the calmer I became. I picked my battles because no child wants to be constantly reprimanded and no parent has the energy to do so. Things that I previously got caught up about like insisting that my child should be sitting down at the table for a meal or that my child should be able to get ready by themselves, no longer mattered. Recalibrating my expectations put less demands on everyone and it made our days run more smoothly.
Within a few months we both started medication, and although the path was not straightforward, when we found the right fit things continued to improve at home and at school. Medication was only part of the solution for us. I strongly believe that the biggest change in my child happened when I began to change how I parented. Curiosity, empathy and connection saved our family.