Of all the milestones or developmental stages whatever you want to call them - the toileting aspect of this journey never really bothered me.
What bothers me however, is lack of accessible changing facilities, and also the low amount of prescribed nappies/pads people are given.
I accepted a long time ago that toileting in the “typical” sense was not going to be on the cards for us.
It really is no big deal.
My child is fed 24/7 by a feeding pump so expecting her to be able to control bowel and bladder movements never really came into it.
I would never entirely rule it out, never say never all of that.
I know it isn’t the most glamorous of topics for a blog, but it’s an important one.
The result of this is that I am now “that” mum.
The one who will mention and write to companies/places querying their lack of facilities.
There is no popularity to be gained from making such demands… These facilities require space and money, two things that aren’t easily come by.
I don’t like how entitled and self righteous I can act, but if I don’t, how can we ever inspire change?
Change doesn’t happen from idley wishing things could be easier.
Change happens through spreading awareness, writing to those in power, signing and sharing those petitions.
I have been impressed and humbled on social media by how many people recognise the importance of these facilities that aren’t in our situation - because they have listened and been made aware.
That’s all it takes and we can’t give up.
Big companies and councils - whoever is in charge…. They often cater to the majority.
Forgetting of course that they themselves, at any time in life, could also need those facilities.
It isn’t until you are in our situation (or know someone who is), that you realise the importance of hoists, level access, changing tables etc.
Just because we aren’t easy to cater for doesn’t mean we should be overlooked.
I was horrified when our town underwent a large regeneration and a Changing Places wasn’t included in the plans.
I have since met with MPs and found out that thankfully one has been planned for when the local bus station is rebuilt.
Why this couldn’t have been done long ago I’ll never understand.
I even visited the new cinema and witnessed a group of people that appeared to be carers with a group of wheelchair users.
I overheard them discussing the toilet situation and deciding not to get drinks so that they would not need the toilet.
A person shouldn’t have to suffer dehydration so that they can spend time with friends!
It shouldn’t feel like a special treat being able to maintain hygiene, cleanliness and dignity, however this is still very much the case.
I’d like to think that as time goes on, attitudes and awareness is changing.
More money is being put into funding changing places, and the map of available facilities seems to be growing.
You can’t underestimate just how important this is for so many people, it enables people to access the community, enjoy holidays, stay out for longer without anxiety about getting home and so on.
Where we are, you get given 4 pads a day.
There is no fighting this number and there is no point trying.
I know in some ways we should be grateful as other areas have less or none at all.
We are told that DLA money is to be used for additional pads - but you’d be surprised just how far this DLA money is expected to stretch for all of the extras needed (tube pads, bibs, hospital car parks to name a few examples… it all mounts up).
4 pads a day for a child that is doubly incontinent and prone to cdiff flare ups which can at times mean 10 changes a day!
(My back hurts thinking about it!). The environmental implications of pads is something that troubles me, and I have toyed with the idea of researching reusable pads; but I weigh this up with the fact we do 2-3 washes a day of bedding and clothing and I just put it off for another day.
We recently purchased a second hand massage table.
A wise friend had mentioned this could be a good way to change/dress Amy when out and about or on holiday.
The table was collected and we decided to visit the seaside as this was close to where we collected the table from.
We arrived at the beach with no expectations and no prior research.
Imagine my surprise when I open the door to the disabled toilets and there in all its glory stood a large changing table and hoist!!
It was amazing.
I then opened the Changing Places app to discover this was the only one in the area for some distance. How lucky was that!?
This now firmly puts this place (New Brighton) on the map for us for places to visit.
Imagine if everywhere had this?! How much easier life would be.
I could probably write a book of changing nappy themed stories (I’m not sure how popular it would be!!), the times we’ve changed Amy on the ramp of the van, the time we nearly broke a baby changing table from the wall because of the weight limit not being clear, the times I’ve binned whole outfits due to the severity of the situation.
The laughter and tears I have shared on days out with other friends whose children require pad changes at an older age.
I definitely took for granted how small she used to be, as she has grown it is getting harder and harder to stay out for full days.
I often joke “what did I even talk about before we had Amy?!”, the same can be said for how much I can talk about wee and BMs.
Prior to having Amy, any nappy talk would have me retching and leaving the room, and now I feel I could deliver a lengthy Ted Talk on the topic!
I’m not sure whether I should be recoiling in horror at myself or giving myself a round of applause for overcoming squeamishness.
Amy is only 7. She is a very tall 7 and I can just about lift her still.
If we are lucky enough to have her as an adult, I wonder how on earth we are going to do it.
Even with hoisting, her movements are severe and dressing her is often a two people (or more!) job.
I do worry about the future. Quite a lot actually.
How we will keep her safe. How we will keep her clean and comfortable. How we will cope when we go somewhere with inadequate facilities - do we just not go? Do we stay home? How will our backs be 5 years from now?
The changing table is also important for a stretch.
We have done some lengthy car journeys where we have deliberately stopped at a service station that has a changing places.
The main goal is to make sure Amy's legs don't lock up and ensure she isn't in too much discomfort.
Sometimes we get her out of her chair and she comes out stuck in a sat position and winces in pain when straightened out.
The long term effect of stiff muscles and bad positioning doesn't bear thinking about.
So I am always thankful of the opportunity to let her have a good stretch.
I know myself how much it can ache when you stay in the same position for too long and for Amy it is so much worse.
She wants to explore places and see everything, but she also needs the right equipment.
I am often tempted to buy a mobile hoist too and then between that and the massage table, more options are available to us.
But where does it end?!
You could just keep buying more and more equipment to try and make life easier and it costs a lot and takes up space that we don't have... so really the problem lies in the community not having enough facilities.
Have you had any similar experiences? How is it in your area? Do you get nappies on prescription without a fight? I'd love to hear other people's stories.