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Jenny’s story

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Jenny shares her family’s story of Thomas’s first eight years. She talks honestly about learning to live with his diagnosis of tuberous sclerosis.

It is an understatement to say that having a child with additional needs requires adaptation, adjustment and ultimately acceptance. I cannot speak for other families, but we find that every day we are still making changes to our expectations and how we do things, and we are still journeying towards true acceptance.

From the first day our son Thomas began to have seizures when he was four months, we had to make adaptations and adjustments constantly as we struggled to cope with them and deal with an ever-growing round of appointments, tests and specialists.

The image of our family we had envisioned for the future was shattered

These tests culminated in an MRI scan which confirmed Thomas’s diagnosis of tuberous sclerosis when he was eleven months old. This genetic condition meant that a quarter of Thomas’s brain was a tumour, and he would have severe learning disabilities, epilepsy, and numerous other complications for the rest of his life. The image of our family we had envisioned for the future was shattered. With hindsight, for me, it was a blessing that Thomas’s condition and subsequent diagnosis crept up on us gradually as it made it easier to cope with. The signs had blatantly been there beforehand, so we’d had a chance to begin to adjust by asking ourselves “What if…?”

Adaptation to his diagnosis came in many ways in the early days. We had to change the way we saw ourselves as parents, and how we saw our peers with their ‘normal’ children. I can remember holding Thomas close to me during many of his seizures so that other people couldn’t see him shaking. I didn’t want to have to answer their questions or see the expressions on their faces. However, in the busyness of life, dealing with a child with additional needs and all that this entails, the day-to-day coping came and went in a blur (and still does!). Without being too glib, we just learn to cope as best we can with what each day brings.

The busy routine of daily life goes some way to hide the real fears I hide deep in my heart. In the quiet moments, when I allow myself time to think, the altered future of Thomas became an all too stark reality. Everything as a parent you hope and dream of for your child and, dare I say, take for granted, has been taken away from Thomas. You assume that your child will have the choice of any path they want to take in their life – education, career, a family of their own. But this is not to be, and the reality of it takes real adjustment.

Fortunately it is only occasionally that I realize the enormity of the effect that disability has on Thomas’s future life. It is often the little things that trigger it, such as when other children start to go to the park with their friends, go to the shops, or can be left to play on their own for a while. Or it’s the fact that he still wears nappies, or when his younger siblings and their friends ask curious questions. For the rest of his life Thomas will have to rely so much on others for his everyday care, needs and happiness.

But I have to remain positive. That is a big adjustment of attitude. The fact is that circumstances can make me feel very negative if I let them, but remaining positive and optimistic is a choice I have to actively make day by day. Learning to adapt my attitude, no matter what today throws at me, brings real acceptance.

That is the story of Thomas’s first eight years. Through all the sadness and frustration we have experienced, we also know that he brings so much joy into so many people’s lives, and touches them in different ways. He does not know or care what ‘normal’ is! Children with additional needs teach us so much about ourselves – our attitudes, our emotions and our ability to cope with things! We experience this with Thomas every day. We have learnt to be strong, to think beyond ourselves and what we want and expect. Learning how to adjust, adapt and accept is how I think I cope being a parent of a child with additional needs, and long may it continue!

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