A hand to hold …

Over the years, I have come to understand that when a person is born with autism, they view the world as God intended. Colours, sound, movement and the interaction with life. It is classed it as neurodiversity, which is a convenient label for those who do not see the world as those who are neurotypical.

Put aside those labels though, a person with autism experiences life to the full, or they can, as long as we understand the world in the way that they see it, and facilitate changes to allow them to flourish.

Epilepsy however, is savage. It is a condition whereby the brain triggers electrical impulses which impact adversely on the mind and body. The condition can, in many cases, be treated with medication which calms those electrical signals and allowing a person to go about their life almost as normal. Around 30% – 40% of people suffering epilepsy are however drug-resistant, known as having medically refractory epilepsy. For these people they continually suffer torment and pain from seizures with little prospect of a cure.

Our son is drug-resistant. His torment is daily and though he sees the colours of the world and the sounds as they are intended due to his severe autism, these images are destroyed by the endless pain he suffers.

We reach out to assigned neurologist’s to guide us and advise us and we talk openly about our sons declining health and his pain. The response that “there is nothing more we can do” is not what any parent wants, or needs to hear. Worse is when we are told that we are being discharged from their care because there is nothing more they can do!

The isolation we as parents have felt throughout our son’s life is today, felt suddenly so much more acute, and the lonely road we have been walking has become endless and frightening. Who do we turn to now to hold our hand when we become fearful? General practitioners, with the greatest respect, do not understand the granular detail of epilepsy and without access to a specialist epilepsy clinic and neurologists, we have nobody to discuss our concerns or thoughts with.

This may be a consequence of the demands on our health system following the height of the COVID pandemic, these specialist are needed to care for those for whom they can still make a difference. When there is no more that can be done, they argue there is no point in tying up specialist time. This does not help our son. This does not help ourselves.

I have long been an advocate of sharing our story and encouraging others to do likewise, if awareness is not increased, this is a condition that will not receive the focus or the funding to make progress in finding a cure for all those who suffer. We may face a future where our son continues to suffer daily and we fear the day when he may lose his life through sudden and unexplained death in epilepsy (SUDEP) but if we continue to share our experiences, the journey we have been on and will go on, something in what we say, may help another on that lonely road, if nothing else, to feel less alone.

This is a savage condition, not only through seizures causing intense pain, unconsciousness, incontinence and many other effects, recovery can take hours if not days to recover from a bad attack. We do what we can, we have found ways of bringing comfort to our son, though we remain unable to stop his seizures. We are not medic’s, we are not specialists in epilepsy, we do however study all aspects and research on the condition, looking for that glimmer of knowledge that may help us, help him, and indeed share more widely.

Life is for living and with additional considerations we can ensure and encourage our son to engage meaningfully in a world that seems to continually turn it’s back on him. As long as I draw breath, my back will never turn.

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