brain injury, incontinence, SEN parenting, Stoicism

Another load of laundry?! – making peace with your incontinence.

close-up-equipment-hand-1321725“What’s the matter Mummy” you ask, you’ve come out of your room to see. I’m on my knees in the bathroom scrubbing poo from the bath mat. I’m trying to stifle my sobs but one has escaped and reached your little ears. 

“Nothing’s the matter love, Mummy’s ok, I’m just a bit tired” I reassure you and you scamper back to your room unravelling the loo roll as you go and leaving another trail of chaos for me to sort out. When I’ve finished scrubbing.

I’m crying because of the poo that I’m scrubbing. Because it’s on my feet and it smells. Ten minutes ago it was on your legs, feet, clothes and you’ve trodden it everywhere. It is the fifth time today that you’ve soiled and needed cleaning. I’m sobbing because your skin is sore, you’ve run out of clean trousers, I’ve already started the 4th wash of the day and now there’s more soiled clothes and a mat to add. I’m crying because I can’t keep up. 

And because you’re 9 and you should be continent by now. And because I want to scream this ‘should’ at you and I feel guilty, so guilty for wanting to scream at you about your incontinence. Because you can’t help it. 

I’m crying because you don’t care when you’re covered in poo. You say you don’t feel it coming. You discard your Incontinence pads, forget to put on your underwear, know that Mum will clean you anyway. 

I’m crying because it’s so damn hard and unfair. We didn’t choose this. I’ve been thinking that a lot recently. Some people believe that we get what we focus on, what we believe in, what we aim for. For a while I chose to believe that your brain would heal, that I would find a therapy that would ‘just rewire’ the damaged parts  and that you would ultimately be just fine. I’ve been holding onto that – there are always more strategies, therapies, special diets and supplements etc to try. But what if this is it?

You don’t know when you’re having a bowel movement. What if that’s ok? You will always need personal care and support with your toileting. Maybe that’s ok too? I still have a long way to go towards acceptance. I find it so hard to see your skin soiled and sore and I worry that you will be rejected and laughed at by the world. Your soiling is hardly your most unusual behaviour after all. 

And that’s why I’m on the floor, scrubbing and sobbing. Because I’m worried about you and I’m exhausted. 

What would the Stoics say? Perhaps that an exhausted parent in such a position should be focusing on cultivating resilience and inner strength? That the one thing of importance should be my inner state – it’s the only place I will find a haven. 

‘And where can man find a calmer, more restful haven than in his own soul? Most of all, he whose inner state is so ordered, that he has only to penetrate thither to find himself in the midst of a great peace- a peace that, to my mind, is synonymous with ordeliness’. – Marcus Aurelius. 

An ordered mind- that’s what is needed! Can I order one on Amazon?! In my exhausted state, I lack the clarity of thought to make sense of it all. 

SEN parenting, Stoicism

Stoicism for special needs parents – could the philosophy of the ancient Stoics be helpful when bringing up a child with disabilities?

four_caryatids_erechtheum_acropolis1Many modern philosophers and health practitioners believe that the ancient philosophy of Stoicism is still highly relevant today.

According to the Stoics, the route to a peaceful mind lies in being clear about what we can and can’t control in our lives.  Some things are simply out of our control and we should not waste energy on trying to change them. We should expect to come across hard times and embrace them.

According to Stoicism, misfortune is all part of life and is just accepted – carry on regardless.  It’s all ok!

That’s all very well, you may be thinking, but what about those people out there who are really suffering – day in day out? People living with chronic illness, disabilities, depression, bereavement and grief?

And when it’s our children who are suffering, it’s harder still to make sense of. As parents, it’s our job to protect our children and it’s very hard to see them facing the constant challenges that their disabilities bring. The pain we feel for them is very real, as is the grief for the life that they ‘should have had’. Isn’t it human and perfectly natural to grieve and to feel pain and loss when something really bad has happened to our loved ones?

In my experience, yes absolutely. And it is also very easy to get trapped into this mindset. ‘It’s not fair, it should never have happened, he didn’t deserve this.’ And to feel resentment at the rest of the world for the prejudice and lack of acceptance that people so often demonstrate. It’s not surprising that many special needs parents feel so isolated and that they and their child are ‘hard done by’ that they have to face all these challenges.

It’s enough to keep us angry for a lifetime, living in a perpetual state of resentment and regret and forever dwelling on the injustice that life has served.

Could a stoic approach be helpful to parents of children with disabilities? Many of us are just too exhausted to find solutions, coping mechanisms, we just function. Just getting through another day can feel like a miracle. When we are praised for our strength and resilience, or even for how stoic we are, we can’t help but wonder ‘what choice do I have?’

After many months working with a very good counsellor, talking about my own son’s brain injury and associated challenges, I’m realising that acceptance is key. Yes this is hard, it’s very hard. And that’s ok. I can’t fix it. That’s ok too.

(I’m still working on this mindset..)

The Stoics taught that we should see things as they are, without prejudice or expectation. This approach helps us to accept what can’t be changed, take action where we can and to move forward with courage and persistence to overcome our obstacles. This is much easier when we are not overwhelmed with negative emotions and judgements about how things ‘should be’.

It is clearly not an easy philosophy to apply to parenting a child with disabilities. The fact remains that there are numerous obstacles to overcome. All too often, it feels like an uphill struggle and a constant battle. It is very difficult not to make judgements about how things ‘should have been’.

But we all need a code to live by, tools to help us make sense of it all and to help us navigate the minefield while trying to make sure that our own needs and the needs of our children are met.

From what I understand, Stoicism does not mean shrugging off our challenges; and it doesn’t mean that we should not feel our pain. More that we learn to let go of the negative stuff we cling to – the anger and frustrations. To keep our thoughts ordered and controlled so we can face those challenges with strength and inner-stability, which is surely something worth aiming for.

There seems to be a common misconception that the Stoics were cold and unemotional. To feel and overcome emotions is not the same as not to feel them at all. There is an excellent explanation on this topic here, by author and psychotherapist Donald Robertson.

So, for those out there facing a life less ordinary, yes it is true that we have a lifetime’s work ahead of us. Perhaps, if we can try to face the day to day challenges using the cardinal virtues that the Stoics referred to (wisdom, courage, morality and self-discipline), we may begin to feel some inner-peace.

I have been reading a great book on this topic, one I would highly recommend. It’s called ‘Stoicism and the Art of Happiness’ – Donald Robertson.

“It does not matter what you bear, but how you bear it” – Seneca