He is a non-walker, he uses a wheelchair, pushchair and special (Tomcat) trike when we are out and about.
He is partially potty trained.
By that I mean on good days we get most of ‘it’ in the special potty or loo - on bad days I run out of clothes for him!
Even the best pull-ups don’t contain the accidents.
So we frequently need the use of disabled toilets and changing facilities.
But we’ve actually stopped bothering trying to find a disabled toilet now if he needs changing.
Not because they are not available, but because they are simply far from good enough.
To be honest, I’d say shocking!
So far I’ve only come across one in my five years as a special needs parent, that actually caters for my disabled son’s needs.
But that was at the Fortune Centre, a specialist disabled riding facility with residential students with special needs, so they had to have one and it was brilliant as you’d expect.
With a remote controlled full size changing bed, heating and wonderfully clean.
But that is it.
The grand total is one.
So how is it possible for this to be such a huge problem?
Surely disabled toilets should cater for the entire spectrum of those they are ‘trying’ (and I use that word very loosely) to include?
Surely they must be suitable for people like us?
The reality is disabled toilets/facilities are either for adults who are perhaps slightly less mobile than they used to be, or babies (apologies - I know that is a huge generalisation).
My amazing little man is neither of those! And so the facilities don’t cater for ANY of his needs!
He is too big to lift onto a baby-changing drop down unit, even if it was long enough to hold him (they are at least 30cms too short for him now!).
And how degrading for a little boy who is about to start school.
The last thing he wants to feel like is a baby.
So I’m sure many of you are only too familiar with the outcome of this one.
We have to lay him on the often pee-soaked floor if we change him in a disabled toilet.
I hate myself every time I have to do it.
I pray that I can figure out a way to clean him standing up, but at the moment he’s simply not strong enough for me to do that.
And so the car boot is normally the only other option (if we have it nearby at the time).
Again, who wants to be seen bare-bottomed lying in the car boot.
And who should have to get that cold and upset just because their bladder and bowel can’t physically function as well as the person would like??
I certainly would not wish it on my enemy – well except maybe the lady that keeps parking in the disabled spot with no blue badge that I told you about!
Some of the worst places I have encountered have been shops and shopping centres.
None of our local supermarkets is any where near up to standard.
In fact I would avoid the toilets at all costs in our local ASDA!
Our local pubs and restaurants are terrible (laughs as if she gets to actually frequent them).
It’s the summer holidays and it would be nice to enjoy the occasional pub lunch without worrying about changing facilities though!
Days out are very tricky because all of the lovely places our little people like to frequent just simply do not get it.
The best we can hope for is that the baby changing facility is not one of the drop down units and is a mat on the top with the sinks.
Sometimes they are just long enough if we put something down under his head to elongate the changing area…. but still….
really, in this day and age, that is just a joke and it will not be long before even that is impossible.
My heart goes out to those parents and adults who are already beyond the stage where they can just about make do.
Life shouldn’t be like this.
I feel like this is a basic human right that is being completely denied of our boy.
When really it’s not rocket science.
I mean come on.
It doesn’t take a lot to figure it out.
And I’ve not even touched on the issue with the actual toilets themselves in these facilities.
When Hadley does sit on a toilet he needs a lot of physical support and so cannot use a standard toilet seat.
Even just a drop down smaller seat would make life just a tiny bit easier.
Places that I intend to tackle personally include our local premier league football club…our son is really getting in to football and the club prides itself on being a family club and on having a large disabled fan base.
Yet not even a baby changing unit exists at the stadium. Just a loo.
So we have had to deny Hadley the chance of going to football with his footie-mad Grandads', just like his friends do, unless he wears a nappy.
And in the hope that he doesn’t need changing.
The local supermarkets.
The local pubs and restaurants.
The main tourist attractions in the area.
Although in fairness, there seems to be a little more effort made by those in the tourism sector, with more disabled toilets and lower cisterns for kids in some places, but they are still very uneducated and huge improvements need to be made to cater for those who need changing facilities.
The list is endless.
But the real problem goes higher up.
At our son’s preschool we had to make do with the floor in the disabled loo, that was left in a despicable state by the mums and toddlers group that used it too.
There was a toilet with some drop down rails, a shower and a drop down baby changing unit, but nothing suitable for changing Hadley.
So the floor it was.
This was not the preschool’s fault.
They certainly didn’t have the money to convert the room.
It belonged to the community centre anyway.
So it’s the local authority that sucked and didn’t care.
What’s added to my frustration in this matter this week is that our son starts school this September.
He is going to our local mainstream school and will be the only child there with a physical disability who will need changing facilities.
And do you know what?
Apparently the Council can’t find a supplier to adapt the disabled toilet to suit Hadley in time for him to start school.
They have known about this for ages and they have more paperwork to support the need for this facility that you can shake a bloody stick at.
Including his statement which has been agreed (by them!!!) for months now.
There is supposed to be a hoist and changing bed going in as well as a better loo and rails.
So Hadley will have to go through the stress of making do with a floor somewhere in the school rather than the privacy that he should automatically have, all because their preferred suppliers are too busy!
That just says it all doesn’t it.
If our own local authority doesn’t understand the importance of this sort of facility and the dignity that should be a given for somebody like my little man, then it just goes to show why we are encountering this everywhere.
Why society in general just does not get it!
It makes me feel very downhearted that for such an incredibly forward thinking nation, we can’t even get this right!
I must add here that this is nothing to do with the school and the head teacher, who has been absolutely exceptional in making us and Hadley feel included and looked after.
Their hands our tied and this is the local authority ruining it!
I fear that unless enough of us make a point of highlighting the issue, it will be a very long time before we see a definite change.
Unless of course somebody gets into a position of authority with a disability in the family.
They’ll soon think again……hmm….not sure I can fit in running the country as well as being a special needs parent!
To find out more about the Firefly's Space to Change campaign to improve toilet facilities to meet the needs of special needs families click here.