11 Oct 2016
I wasn’t given any training to be a mum – I wish I had. Eleven years on, I can be both super human and super-useless in the same day. In truth, the super-human bit normally filters away by the time I get out of bed but in my dreams I nurture my children with ease and finesse.
My nine-year-old helpfully told me last week that he was thinking of writing a book titled, ‘My Mum’s epic fails’. He says he has a wealth of material and I believe him.
As a mum to a child with complex needs, I have learnt a new lingo, new skills and experiences. I do my son’s stretches like a physiotherapist, I adapt equipment like an OT, I measure calories and nutrients like a dietician. I even adjust equipment like a technician and programme software like a gaming geek.
When I have training in the theory of my son’s therapy, I become enthused to make it happen.
When I don’t see the point, it quickly drops off my very long to-do list. In many ways, postural care is one aspect of my son’s life that feels relentless.
He can’t escape the constant pressure from gravity and his tightening muscles, so neither can I. Every day and night there is a battle raging within his body, as it has the tendency to contort and curl. Some days the task feels fruitless and overwhelming.
On the morning of the training, I woke early in my hotel room. A whole night away made me feel like I was on holiday. My alarm was set for a lazy seven but, unsurprisingly, I couldn’t sleep past six. I showered without thinking about lunch boxes and had breakfast without doing three other things at the same time.
Then I nervously waited for the training to begin.
Would I leave with a truck load of guilt about what I haven’t been doing? What would I learn? Would I leave feeling super-human or super-inept?
Well, I needn’t have worried. On the course I met Tess and Sarah and the teaching was informative, practical and relatable. I did see the stuff that I hadn’t done so well but it was swamped by all that I could still do. I was given a tool kit of knowledge that made me feel equipped to make a difference to improve my son’s posture and future comfort.
The training brought me into a new light.
I was clearly shown the challenges we faced but then given the techniques to change the future – one pelvic tilt at a time. Such a vast range of people came on the course. It was great to sit alongside the professionals, as another type of professional – a mum.
I have come to realise that Simple Stuff Works are passionate about postural care but they are also passionate about families. They work towards limiting long-term skeletal problems in children with complex needs using simple and effective 24-hour postural support. Then they share their knowledge and expertise, not just with professionals but families too.
And it doesn’t stop there.
All the Train the trainer courses have the family’s perspective firmly at the foundation of its teaching.
Because Simple Stuff works understand that for my son, it is me and my husband who can change his future. We are the cornerstone of good postural care. It is us that need to understand the difference it makes and it is our sleep that gets disrupted when our son is uncomfortable.
After just the first of three days training I came away re-impassioned to change my son’s future and keep postural care in focus. Tess described it brilliantly;
I went in a parent and came out a warrior.
For more information about the Train the Trainer course you can contact Simple Stuff Works via www.simplestuffworks.co.uk or email using the contact form below.
Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir The Skies I’m Under. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.