My Journey as a Mum After My Son’s Epilepsy Diagnosis

The Beginning of a New Chapter

Four years ago, my life took an unexpected turn when my son, then four years old, experienced his first seizure. The memory of that day remains vivid: he was bathing with his sister when he suddenly became unresponsive. His body went rigid, his colour drained, and his breathing turned shallow. I was engulfed by fear and helplessness. This harrowing episode marked the beginning of a new and unpredictable journey for our family. From that moment, I found myself watching his every move like a hawk, forever alert to the next possible seizure.

Navigating the Diagnosis

A few weeks later, after a second seizure, my son underwent a battery of tests, including EEGs and MRIs. The tests confirmed what we feared: epilepsy. This diagnosis thrust me into a steep learning curve. I delved into research, uncovering the many complexities of epilepsy far beyond the stereotypical image of flashing lights and shaking. My son was diagnosed with temporal lobe epilepsy, a condition that affects his cognition, learning, and memory due to continuous altered brain activity.

Epilepsy can often be misunderstood. Here are some important facts about seizures:

Variety of Seizures: There are about 40 different types of seizures, many of which are different from the typical image of shaking (tonic-clonic seizures).
Triggers: Seizures can be triggered by many factors such as stress, illness, smells, and excitement. Only 3% are triggered by flashing lights.
Impact: Seizures can cause cognitive and motor regression and have both emotional and physical impacts.
Severity: Seizures can be fatal; SUDEP (Sudden Unexplained Death in Epilepsy) is a real risk.
Emergency: Always time a seizure. If it lasts over 5 minutes, it can cause significant brain damage and is a medical emergency—call 999.
Seizure First Aid: Stay with the person, move objects away that might cause harm, put them on their side if their awareness is impaired, and time the seizure. Do not put anything in their mouth; the idea of “swallowing your tongue” is a myth.

The Daily Struggles and Triumphs

Being a mum to a child with epilepsy involves constant vigilance and adaptation, which has impacted my mental health. My son’s seizures can be triggered by various factors, including anxiety, excitement, and routine activities like taking a bath. This unpredictability requires me to continually assess and manage his environment to prevent sensory overload and potential seizures.

One of the most challenging aspects is dealing with the unpredictability of his condition. Seizures can strike without warning, bringing a constant undercurrent of anxiety. Despite these challenges, we cherish every victory. For instance, celebrating a seizure-free Christmas last year was a significant milestone for our family. Witnessing my son’s resilience and enthusiasm, especially when he stims with excitement, fills my heart and motivates me to keep advocating for his needs and educating others about living with drug-resistant epilepsy

Nicole who has long brown hair is smiling at the camera. They are wearing a purple shirt with "Epilepsy Awareness" written in white letters. The background is light blue

Advocacy and Building a Supportive Community

Our journey has ignited a passion for advocacy. Through my podcast, “Conversations with a SEND Mum,” I share our story and insights, aiming to connect with other parents of children with Special Educational Needs and Disabilities (SEND) and break the stigma surrounding disabilities. By sharing my journey, I hope to make others feel less alone and more understood.

The podcast features conversations with other SEND parents, neuro-divergent adults, and professionals, offering valuable tips and support. Building a community where parents can share their victories and challenges is crucial. We draw strength from each other’s experiences and find solidarity in our shared journey.

Professional and Personal Growth

This journey has also spurred professional growth. After leaving my teaching career to care for my son, I founded two businesses: A Box Full of Joy and The Super Sensory Squad. These ventures support children with sensory and emotional needs, inspired by my personal experiences and a desire to help other families navigate similar challenges.

The Super Sensory Squad, co-founded with occupational therapist Kate Smith, uses eight engaging penguin characters to help children understand their sensory systems and regulate their emotions. Through creative tools and stories, we teach children to recognise and advocate for their sensory preferences, making daily life more manageable.

Nicole is wearing a suit jacket over a blue dress whilst speaking to an audience about ‘A Box Full of Joy’. She is holding some materials in her hand which she is showing the audience. Behind her, there's a banner that reads, "Offering letterbox gifts, stationery and courses to support your mental health." Multiple plaques decorate the wall.

Looking Ahead

As I continue this journey, I remain committed to supporting and empowering children who are neurodivergent or live with disabilities, as well as their parents. Living with a disability involves hidden costs and unexpected challenges. Finding resources and communities that understand these difficulties is essential. Platforms like Purpl Discounts are invaluable, offering the best discount offers to help offset these costs for the disabled community.This is just a glimpse into our story. If you’re interested in learning more, listen to my podcast, Conversations with a SEND Mum. If you’d like to share your story, contact me on Instagram. Together, we can build a supportive community and ensure that no one feels alone on their journey.