At 12 months of age my youngest child of five, suddenly started to have seizures. He went from sleeping through the night to waking countless times: his whole body shaking.
The sleepless journey that followed lasted nearly two decades.
Many different medications were tried in that time with variable impact on his seizures and zero impact on the sleeplessness that went with them.
As the years went by his issues became more complex. His wakefulness settled until he woke between 3 and 8 times each night.
When he was unwell he barely slept as had been the case in his early years, but for the most part I got out of bed to attend his needs between 3 and 8 times each night.
By the time he was 8 years old I was already experiencing health issues as a result of chronic sleep deprivation. I can only guess how he felt based on my own fatigue.
As he grew into his teen years and towards the end of high school my health had deteriorated both physically and mentally to a point where I was now continuously fearful of what would happen to him when my body and mind stopped coping and just shut down, for good.
There had been a few episodes of that along the way driven by the very difficult issues that arise when new people come into the life of your child at times of transition from one stage of life to another.
Being the child, my son could rest as he needed. Being the mother I could not.
In Australia much work and research has been done on the effects of fatigue in the work place.
Due to the large body of work done on safety in the mining industry most work places today have controls in place to minimise the risk of fatalities and injury, to protect workers their families, the workplace and the community.
Much work has been done on fatigue as it is a critical risk for anyone operating machinery or equipment, to the point that today there are road signs strategically placed on highways to highlight the risk of fatigue and the means by which motorists can address it.
However for mothers of children with disabilities and medical issues there are no controls and for their children dependent upon them there are none either. This negatively impacts on all aspects of their lives.
For the most part, the broader community, are clueless to the fact that there are women driving around amongst their families who are so sleep deprived, their driving capacity is the equivalent of that of a drunk driver every time they get behind a wheel.
That was me when I began this blog.
I blogged until it outlived its usefulness as a place for me to put my thoughts together in a logical constructive way in the hope that someone who could make a difference would do so. That was naive.
My learning from this journey is that only people with disabilities can drive change.
In effect that means that my son has no voice.
He is non-verbal, very intellectually disabled and he cannot vote.
I am certain that he would have a lot to say if he were mentally competent and able to speak particularly to people who have caused him harm and gotten away with it and those who have made decisions not in his best interests.
Especially the ones who have then attacked, threatened and emotionally black mailed his parents through sneaky and devious means for standing up for his most basic of human rights.
Many places are not disability friendly and many more are not Carer friendly.
In Australia “Carer” is the correct term for a person who cares for another in an unpaid capacity.
Mostly “Carers” are family members.
The correct term for a person who receives remuneration for caring for a person with disability is not Carer but “disability support worker” or “support worker”.
I am a full time Carer. Carers of non-verbal people with severe or profound intellectual disability have no rights to protect themselves, yet they carry the full emotional burden of every issue experienced by their child.
As my son has no voice, these are my thoughts on the trauma I have experienced trying to be his voice.