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. 

Autism, brain injury, SEN parenting

Redressing the balance – when special needs parenting becomes overwhelming.

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Parenting is a 24/7 role. For some, there is literally never a break or a chance to rest and restore. Single parents and special needs parents know this only too well.  And as for single special needs parents, I’d just like to say – you are doing a phenomenal job! I’m saying this because you probably don’t hear it anywhere near enough. And it’s the truth.

And if you’re anything like me, you’re probably also exhausted, overwhelmed and have trouble stopping to redress the balance.

In the early years, after my son was born with brain damage due to lack of oxygen, we had appointments and assessments most days. Certainly several every week. We saw paediatricians, neonatologists, a physiotherapist, occupational therapist, ophthalmologists, health visitors and doctors and later a speech therapist, portage worker and sensory loss social worker.

We also went to weekly multi- sensory sessions to stimulate his vision, cranial osteopathy sessions to heal his brain and breast feeding counsellors (who knew that having a child in NICU for weeks would stop the milk flow?)

In those early months, many parents are coping with this whirlwind of follow up appointments while still in a state of shock and unresolved grief after the events of their child’s traumatic arrival. They may have seen their baby fighting for life, attached to tubes and wires, a machine breathing for them. And been unimaginably helpless as they were unable to hold, comfort or feed their newborn. Upon leaving the neonatal unit and taking their baby home, they probably haven’t slept for days or even weeks.

Unable to stop and begin to process any of the trauma, worries and dashed hopes and expectations for their child’s future, or the fact that their world is now very different and very stressful. They just get on with it, just function, go through the motions, cope. Often developing symptoms of PTSD but not having the time or energy to do anything about it.

Then come the pre-school SENCO meetings, visits from the vision support team, mobility officers, trips back to the NICU hospital for clinical trial assessments. Later come the educational psychologists, autism and communication specialists, continence nurse. And not to mention the endless paperwork and battles for funding, disability benefits and the elusive Education and Health Care plan. Parents have to fight so hard for these essential services and provisions for their vulnerable children.

And the appointments need preparation – most special needs parents are VERY well armed when seeing a specialist. With intelligent questions after hours of research and with a list of essential bullet points. In my experience this is the only way to get results. The specialists need the bullet points about your child and will use them in their report and recommendations.

And after the appointments comes the homework. Occupational therapists think we have time to design, print and laminate visual resources for every activity our children ever do or may want to do! And physiotherapists assume we have an hour a day to spend on their recommended therapy regimes. Psychologists want us to fill in detailed behaviour charts and the continence nurse wants a food diary AND a poo chart!

(Note I’m not belittling any of these vital services or the difference they can make. Just having a little rant!)

Many of us are also caring for other children, trying to hold down part time (or even full time) jobs while beating ourselves up that we are NOT DOING ENOUGH! We really convince ourselves that we are somehow letting our vulnerable child down and we should we doing more and it’s all our fault etc etc.

Well if any of this sounds like you, I am here to tell you something –

You are flipping amazing! Resilient, unstoppable, a true warrior.

Being an advocate for your child IS unrelenting. It is a full time job (you ARE doing enough!) And it’s ok to come to a standstill from time to time. In fact it’s essential.

When I feel overwhelmed, I like to write it all down in a list. I call it a ‘duck it’ list (or something quite similar). All of the appointments, responsibilities, phone calls and emails, forms and paperwork, places my child and I need to be and tasks that others are expecting from me. And then just scribble out the stuff that can blimming well wait!

It’s ok to cancel your day / whole week once in a while. If you’re feeling overwhelmed, you need to redress the balance. In order to take care of your special child, you need to take care of YOU.

I don’t mean to tell you to cancel medical appointments – I know only too well how hard these can be to re-schedule and how impatient these services can be to discharge your child if you’re not committed.

But perhaps there will be things in your list of stressors that you can just let go of? By working out what can wait, what’s not so important today and what can be crossed out all together (my favourite part), you might just buy yourself some rest.

My new favourite sentence?

“Sorry I can’t.”