There is a piece of advice I give to a lot of people in our situation that I could really do with taking myself.

I am often good at giving advice, whilst hypocritically resisting to take the advice and apply it to my own life.

The advice is: Take life one day at a time.

If that gets too overwhelming… then a few hours at a time.

Then if even that gets too overwhelming… just breathe, stay calm, and just cope minute to minute… until you feel the pressure drop and things start to slow down.

My most recent anxiety trait is to fall asleep twice on the sofa… admit defeat and go to bed… but then get in bed and be wide awake bursting with uncontrollable thoughts.

It’s infuriating!

Why if I am as exhausted as I claim to be, am I now staring angrily at the ceiling trying to silence my mind.

I get frustrated with my child sometimes for taking a long time to self-settle – again, I’m a hypocrite! Usually I read now until my eyelids get heavy.

But recently I was too tired to read and instead lay awake filled with grief at the fact that my child is most likely going to be doubly incontinent – forever.

There are many things parents of neuro typical children have to go through such as being toilet trained.

For the parent I can imagine it is a very intense time involving an overwhelming amount of patience… and mess!

However, each of these challenges pass for those children.

After what may seem like forever, those children will learn how to go to the toilet independently, maybe with a few accidents here and there… until eventually any problems just cease to exist.

(Then probably a new developmental challenge emerges? I don’t know)

We’ve been eligible for prescription nappies (diapers to non-UK folks) for almost a year now.

I remember being given the details for our local incontinence service but then not being able to bring myself to contact them.

It wasn’t that I felt there was a glimmer of hope in my mind telling me that this all might be possible.

It was just that for now, thanks to manufacturers supplying demand and making bigger nappies, that I could continue without the assistance of our health service.

Taking the prescription would mean accepting that this is another thing that isn’t likely to happen.

I also feel like by assuming it will never happen it’s like I have “given up on” or don’t believe in my child.

But unfortunately, I do need to be realistic and to set my expectations to high would be to set myself up for a fall.

My daughter is 24-hour tube fed… I am pretty certain the most continent of people would have accidents if they were fed this way.

I am not sure the cognition is there yet to understand toileting either… and the muscle control.

So please don’t misconstrue my certainty of it not happening, though at the very back of my mind I am also saying never say never.

I try not to be grief ridden about these things.

When you actually become a parent to a complex child you don’t as much panic about the child not learning to walk, or talk or eat.

You’re more worried about supplying what WILL help them get them where they need to go, or ensure they get apt nutrition, or indeed help them get their needs across to you non-verbally.

You sort of adapt your game plan and accept that you’ll do all those things, just a bit differently to how you expected to.

So not being able to eat? No problem – feeding tube. More efficient anyway.

Not being able to walk? No problem – lots of physio, wheelchair for accessibility, and whatever else postural equipment.

(Kudos by the way to Blackpool Zoo who I recently noticed has recognised the need for these facilities. Let’s hope more places take note.)

But doubly incontinent? Well aside from the social implications ie inopportune gas moments, smells, attitudes of certain individuals/ignorance etc.

It’s the changing places issue again. It always comes back to that.

No other impairment or challenge that my child has really impedes what we want to do as much as the issue of changing places does.

The bigger she becomes, the bigger our need for decent facilities becomes. The same is true for in our home.

Already I am looking at her existing hoist tracking and wishing it was “H” tracking instead of a single line.

I am worrying about wheeling her in her shower chair to her bedroom and me slipping and injuring myself to the point of unconsciousness, and her being left helpless in her chair until her dad comes home.

There are also many people with disabilities who actually are continent, but they require hoisting and/or additional equipment to assist them.

But without the facilities these people are often left with no choice but to stay home or to plan trips out very carefully.

So, I lie in bed. With an image in my mind of me unconscious on the floor and my child crying confused and most likely pulling out her GJ button and indulging in all kinds of stress induced self injurious behaviours.

I am filled with panic and feel sick to my stomach. It’s too late at night to talk to anyone about it. It’s too late to call one of our team to discuss options. It’s not counselling for another week.

I try to shut down this unhelpful thought. “A minute at a time Ceri-Ann”, I remind myself. Not 10 years at a time.

The mere mentioning of “10 years’ time” now propels me into a similar arena of panic.

What about puberty? Hormones? Menstrual cycles? Hygiene? Dignity? Accessibility?

I try once again to shut down this even more unhelpful line of thought.

More at risk of UTIs, skin infections, all sorts. I feel the need to work even harder to prevent those things.

It’s a lot of pressure to put on yourself, but you know you can do it.

I now remind myself that as long as she is happy and safe, then whatever is thrown at us, we will cope.

However inaccessible the world is, we all still have each other and our little community.

I hope that 10 years from now we can all look back on this blog and say “wow, do you remember when every town didn’t have 3 changing places?”. That would be amazing.

We now have 4 different nappy brands to trial. Already I dislike how medical some of them look. I know that sounds silly… they aren’t meant to be all the rage up to date trendy nappies.

That would be ridiculous.

I prefer the ones with little pictures on but I know these don’t go to a very big size, and also may not seem age appropriate when she is older.

I hate also the implications on the environment these nappies have. They are very bulky and obviously never going to be recyclable.

I have considered the reusable ones but without going into too much detail – I feel it would be wildly inappropriate for us.

I know it can be quite a taboo subject and that some may find it distasteful, but to me the fact of the matter is we all go to the toilet, just as much as we all breathe, or need sustenance for energy.

It may not be a very glamorous thing to discuss, but it is an absolute imperative that these things are mentioned so that we can instigate change.

The other thing that concerned me about these nappies was being informed that you are sent a 3 month supply each time.

When I worked it out it was over 350 a month. Where on earth will they go?! Does the delivery come with a large shed for it all to go in?!

We already struggle with all the tube feeding boxes we get sent, amongst many other things that you wouldn’t normally need.

Our house is already filled to capacity so I am somewhat unnerved trying to work out where these nappies will all be stored.

So we bought a storage unit for in the front room which will have big drawers to store some in. I am naively hoping it will also fit suction tubing, catheters, and giving sets!

I recently ordered a special needs swim nappy.

Another thing I didn’t really want to face having to buy.

But she has now outgrown all of the disposable ones and this way seems better. It will get used every week at school for hydro and will be handy for any holidays we go on.

One of my favourite special needs authors mentions in her book how thinking too far ahead will panic you. It is thanks to her I developed the ethos of “one minute at a time.”

Sometimes I chant it in my head over and over until it sounds like a steam train of wonder chugging out an important message.

I also realise that eventually even my terminology will probably change. It won’t be a nappy. it will be a “pad”. A few people I know already call them that.

The first time I heard it I misunderstood and thought they meant some kind of sanitary towel, but like with most things, I’ve adapted to the term… just not ready to use it yet.

So it isn’t so much the inability to toilet independently – it’s more the implications around this that trouble me.

I already accept that my child will need 24/7 care for life and I am committed to that. But the world around us needs to change accordingly.

I know that this is a contentious subject and there are many things I was going to say but felt like maybe it wasn’t appropriate.

We all know I often like to use my sarcastic and silly sense of humour to help cope with situations, but here I felt it was too serious an issue.

Obviously all that I have said is just my personal opinion and there will be people out there with a very different take on it all, but without talking about these things in a public forum, there will continue to be people out there in positions of power who are oblivious to the needs and challenges experienced by others.

There is nothing wrong with being incontinent at all, and I am thrilled that products and equipment exists to promote the dignity and hygiene of individuals, but I still feel we have a long way to go before society is more accommodating and accepting to those needs.