My very first thought when it arrived was “how come this box isn’t very heavy?”

I was shocked that the parcel had hardly any weight to it at all because I knew what was in it and anyone who has ever used disability equipment will know it usually weighs a ton!

Whoever designed the splashy seat deserves some sort of award because not only have they designed something which looks brilliant, they’ve done it without the need for their customers to use any screws, bolts or allen keys to put it together.

I was so shocked at how simple this piece of kit was to put together – (Ikea please take note!)

The seat itself came in 3 parts, the base, the seat and the backrest, which slot together really quickly and easily.

The seat and all the accessories, are made from a lovely soft material which feels a little like the foam they make flip flops or crocs from.

They are completely water resistant and warm to the touch, which I really liked as most bath supports are cold hard monstrosities with scratchy netting and straps which never seem to dry so they are always cold and damp when you do them up.

The Splashy seat has an adjustable backrest so you can sit your child nice and upright or choose to recline it a little if that is easier for them.

We like to use it in its most reclined position so that William can be submerged in the water and relax for a while.

The optional bumpers can be placed wherever you wish so they can be used as head or lateral supports. William doesn’t have very good head control so, for us they were ideal as head supports.

We have a height adjustable Astor Bannerman bath and the Splashy fits with plenty of space to spare.

Although William prefers to be reclined, sitting upright was a real novelty for him as none of his previous supports have offered that position.

So he has been able to have more fun in the bath with some toys and a lot of splashing which he loves.  I also find it is a little easier to wash his hair when he is sitting more upright.

My only real negatives about this seat would be:

a) It doesn’t come in bigger sizes.  William is now 8 and there’s not a whole lot of room for growth left in this which is a real shame, perhaps Firefly might consider making a larger size at some point.

b) It is difficult for us to use this seat if we want to hoist William out of the bath, because we usually hoist up and then fold the changing table down to lay him on.

The height of the chair means we can’t do that and would have to take the chair apart or remove it before we can put the changing table down, so it would mean William is left in the hoist for a few minutes.

Not impossible, but certainly tricky.  If the seat could recline a little more without taking it apart then this issue would be solved easily.

We have also used this seat in other ways, it was a big hit in the school paddling pool and William loved having his feet in a big bucket of water in the summer time, so he could kick about in the garden.

One of the best things about this is the cost, it is not as expensive as a lot of other special needs equipment on the market (we had to pay over £800 for a car seat last year!) and it really is worth every penny.

That’s more than I can say of many of my friends though, some of whom seem to spend more time in hospital than they do at home.

Yet despite the stresses of being on the ward 24/7, they never moan, they are always happy and are still always the first to offer help to others.

So, when I asked them for their top tips for spending time on the children’s ward, I was not surprised by how much information they had to offer.

Most blogs will focus on how to make things easier for the kids but here are some little tips and ideas to try and make your next stay on the children’s ward a little more comfortable for you as the parent!

1. Keep hydrated.

This probably seems obvious but keeping hydrated is difficult on a hot children’s ward.

Take your favourite brand of tea or coffee with you and your own mug (because hospital mugs are a bit grim!) but remember that caffeine will dehydrate you so try to alternate each hot drink with a cold glass of water.

2. Stay Healthy

It is important that you eat nutritious meals so you have the energy to look after your child and yourself so try and stock up on some decent quality ready meals to heat up in the parents room microwave (presuming they have one!).

Make sure the meals include some vegetables & buy some fruit to keep you feeling healthy while you’re there as well.

Shops in the hospital can be pricey so try and get to an off-site shop if you can or rope in some friends to do some shopping for you.

You could even ask them to make you some dinners to reheat in the microwave.

3. Get some sleep

This is really important but it can be tricky if the ward is noisy or the nurses are doing regular checks on your child.

Ear plugs will help to block out the noise of snoring patients (or parents) and the constant beeping of machines.

Don’t panic about not being able to hear when the nurses come around, if they need you they will wake you up so take the opportunity to sleep while you can.

The beds on the children’s ward are often narrow and uncomfortable but you can make them a bit easier to tolerate by bringing your own pillow and blanket to help you sleep especially if you are going to be there more than a couple of nights.

4. Get a break

Try and get out of the hospital at least once a day, even just for 10 minutes.

Ask the nurses if anyone can sit with your child for a little while if they can’t be left alone (if the ward is busy this might not be an option), or if a friend is coming to visit maybe they could sit for a while so you can go for a quick breath of fresh air.

If your child is under the care of a children’s hospice, sometimes the nurses will be able to come and sit for a few hours so you can get a break and maybe even go home for a shower.

5. Pick clothes wisely

Sitting next to a hospital bed all day requires comfortable clothes!  So, don’t be afraid to ‘slum it’ in comfy joggers and t shirts.

It is always hot on the children’s ward, so you will want short sleeves and thin trousers but do make sure you have layers, and a coat, as it will feel extra cold when you go outside for a walk.

Of course, being on the ward for a long time means it is a bit hard to do any washing but if your friends and family ask if there’s anything you need then ask them to do some washing for you!

It’s also wise to take some comfy shoes, flip flops or even slippers so you can slip them on and off easily.

His diagnosis of quadriplegic cerebral palsy GMFCS V, didn’t really mean much to us in the early days.

We’d never heard of cerebral palsy, had no idea what the GMFCS ranking meant and were really feeling our way in the dark.

Medical professionals were so busy trying to manage our expectations of what William wouldn’t be able to do, they forgot to focus on helping him to learn the skills he might have been able to do.

We were always given doom and gloom predictions about his future “he’ll never walk” “he won’t be able to sit on his own”, “he won’t be able to tell the difference between you and a neighbour”.

Instead of focusing on the things he might be able to do and helping him to make sense of those.

It was as if these, so called, professionals had some sort of crystal ball which wasn’t functioning quite right.

Had they bothered to try the old trick of turning it on and off again perhaps it might have been able to provide us with some small glimmers of hope in those darkest days.

Maybe that crystal ball would have told us “He will be the happiest child you’ll ever meet and will have the most infectious laugh you ever heard” and “He will enjoy sitting in his wheelchair people watching and snooping on stranger’s conversations.”

If it had, perhaps those first few years might have been a little different.

Of course, it is important to be realistic and not provide false hope but is false hope worse than no hope?

Realistic hope back then would have managed our expectations whilst giving us a sense of hope for the future.

Some of those predictions were of course right.  William can’t walk, and he needs support to sit up, but are those two skills really all that important?

They were way off with the prediction about his vision though!

He wears glasses, but his vision is low on the list of problems he has to deal with and his face will light up as soon as someone he knows walks into the room.

He has no trouble recognising people!

William may not be like other little boys his age but that doesn’t mean life is all doom and gloom.

Far from it in fact! We laugh and enjoy ourselves just like other families.

William was a sheep in the school nativity this year and he got so excited about Christmas and all the presents Santa brought.

Life is different, we have to plan things a little more and our house is full of equipment instead of toys but is that really so bad?

We are now supported by an incredible team of experts who focus on the, ‘cans’, instead of the, ‘can nots’, and will do whatever they can to make sure William lives his life to the full.

I hope the crystal balls that the medical professionals rely on so heavily have been upgraded by now, almost 9 years later, so that families like mine aren’t stripped of all hope for the future simply because they are afraid of giving false hopes.

For me, the worst response is along the lines of, “We understand how important changing places toilets are and we will try to include one next time we have a reason to refurbish”.

I think that is far worse than a simple, ‘No’.

Essentially this response is saying that the business knows exactly what conditions people are facing without a changing places loo, but they don’t care enough to push it to the top of their agenda.

Instead they expect their customers to simply continue using their toilet floors, or staying away completely while they wait until other things need doing too.

It is saying that disabled people’s needs are not a reason to make refurbishments.

That’s why I was so please to recently hear about a solution which might ease the wait and provide a solution before other refurbishments need doing.

There is a small business in the UK called MigLoo, you may have heard of them already as they have a portable changing places toilet which can be set up in a tent at outdoor events.

They seem as frustrated as we are that, despite it being over 12 years since changing places campaign begun, businesses are still not putting them at the top of their agenda.

They wondered how they could help to get more facilities across the UK and realised that their product might be the solution.

You see although MigLoo was originally intended to be used within their marquee set up, the internal equipment is perfect to use indoors to transform any room into a changing places toilet without any building works at all!

So now, any business can provide a temporary changing places toilet simply by placing the equipment in a lockable room and adding a changing places sign to the door!

Sounds too good to be true, I know, but it really isn’t!

The MigLoo solution needs a space of 9m2 or larger, to allow for a turning circle.

It includes the two essential pieces of equipment you’d expect in a changing places toilet, a (gantry) hoist and large changing bed as well as a washbasin, toilet and privacy screen.

In its simplest form the MigLoo facility doesn’t even need plumbing or power as it is completely self-sufficient.

Businesses will be able to lease this temporarily so that it can be placed into their existing spaces within 4-6 weeks.

The facility will then be available to customers for a specified period of time while the venue carries out works to provide a permanent changing places style facility.

In case you are worried that this may be used as a cheap alternative to a permanent facility, MigLoo have that covered too!

They will be ensuring that all contracts have an end date to ensure businesses can’t use this equipment permanently.

MigLoo is designed to be a stop gap between no facility and an all singing, all dancing changing places toilet.

I am imagining shopping malls popping one into an empty retail unit while they wait for a new tenant or supermarkets adding one to an unused office maybe.

There are so many ways in which this could be used to provide something temporary for customers.

My local supermarket has had empty units since it opened years ago so I will certainly be asking them to put one in there!

I have been contacting local businesses who have given me the fob off and told me they’ll consider it in the future and asked them to put this in right now.

Let’s hope they listen!

More info about this can be found by contacting MigLoo.co.uk

1. Blankets are great to keep legs warm but they can be annoying when they fall off.

So, invest in a good quality wheelchair or buggy cover which will be designed to stay in place.

Opt for one which is fleece lined and waterproof to ensure legs stay dry if you are caught in the rain. Like this one from Willowbug!

2. Stock up on foot or hand warmers

They are great and would be ideal for wheelchair users who suffer from cold feet.

They stay warm for up to 6 hours so perfect if you’re heading out somewhere cold for the day.

3. Wear a hat

Although it is a myth that we lose most of our body heat through our heads, wearing a hat is still a great way to keep warm!

But if your child is anything like mine, you might find hats are hard to keep in place.

Opt for a hood instead – either on a hooded jumper or on a coat, it’ll do just as good a job and can’t fall off!

4. Layer up

I’m sure it wasn’t just my mum who used to tell me to put another jumper on when I was cold?

Wearing a few layers will always keep you warmer but taking them on and off of a disabled child is not always easy.

Arm warmers, leg warmers and even a Harmaki tummy wrap might be a good alternative solution.

5. Wear gloves or mittens.

Keeping hands warm is always going to help with keeping your body warm.

It can be difficult to get gloves onto William’s hands so I opt for mittens or sometimes use long socks as gloves as they come all the way up to his elbows keeping him extra warm!

Epilepsy is a neurological disorder in the brain involving a disruption of communication between Neurons, causing seizures to occur.

Epilepsy is only diagnosed when at least two unprovoked seizures have occurred more than 24 hours apart from each other.

My son, William, was diagnosed with epilepsy when he was just a few days old as he had seizures shortly after birth.

Although his epilepsy is now considered to be pretty controlled by the medications he takes, he still has 5-10 seizures a day.

1. Epilepsy is not as rare as you might think.

Globally, 65 million people have Epilepsy.

Epilepsy affects 1 in every 100 children

5 in 100 people in the UK will have an epileptic seizure at some point in their lives and four of those will be diagnosed with Epilepsy.

Every day in the UK, 87 people are diagnosed with epilepsy.

2. Seizures don’t always look the way you are used to seeing them on TV.

The type of seizures we are used to seeing in TV dramas are called tonic clonic seizures.  But there are about 40 different types of seizures.

William’s seizures are hardly noticeable to a stranger as they present very differently to a tonic clonic seizure.

His arm goes out to the side, his head locks in place in the opposite direction and he looks like he isn’t quite ‘with us’ for a few seconds.

3. Epilepsy and seizures can develop in any person at any age regardless of whether they have a disability or pre-existing medical condition.

It is the most common serious neurological condition in the world and can affect anyone at any time in their life, however, it is more common in young children and older people.

4. One in twenty people will have a single seizure sometime in their life.

5. There are many treatments for epilepsy including a wide range of medications, each of which carries it’s own side effects, and specialist diets which should only be attempted with input from a specialist dietician.

Some cases may also be treated with surgery.

You should call an ambulance if :

– You know it is a person’s first seizure, or

– The seizure lasts for more than five minutes, or

– One seizure appears to follow another without the person gaining consciousness in between, or

– The person is injured, or

– You believe the person needs urgent medical attention 

1. Disabled toilets are really rubbish!

I’m not going to lie, before my son was born I was rather naive about disability.

I must have walked around with my eyes closed because if you’d asked me to describe a disabled person I’d have imagined an old person with a walking stick.

Maybe that is simply because severely disabled people weren’t seen in the community as much when I was growing up as they are now?

But because I had that image in my mind, I presumed that disabled toilets were suitable for all disabled people.

How wrong was I!

Now I have a severely disabled child in my life, I realise just how impractical most disabled toilets are.

Whoever designed them was probably catering for the same person I saw with a walking stick because if they’d met anyone like my son they’d have realised that a little extra space and some grab rails doesn’t mean it’s usable!

These days I know how important changing places style toilets are for disabled people and am saddened that there aren’t more of them in places that offer toilets to everyone else.

Supermarkets, cinemas, shopping centres, department stores, train stations etc all offer toilets to everyone apart from severely disabled people.

2. Carers allowance sucks

I mean I know I should probably be grateful that we get carers allowance at all but the current rate of £62.10 is pretty insulting really.

For that £62.10 carers of disabled people are expected to look after them for at least 35 hours a week – which works out to a pitiful £1.77 an hour!

Now, I obviously I don’t expect to be paid to look after my own child but what if you are caring for your mother in law or someone else you wouldn’t usually be expected to care for?

Is it really acceptable that carers are only given £1.77 an hour for 35 hours of care? And don’t forget that most carers do far more than 35 hours a week, but get paid no more.

Of course, you can go and get a job as well as caring, if the person you are looking after has someone else who can look after them while you’re off earning.

BUT… you are only allowed to earn £116 a week or you won’t be entitled to carers allowance at all!

I’m not sure that many people would choose to be a full time carer and have a second job but still only take home £178.10 a week would they?  Especially when I point out that is way below minimum wage!

This was one of the biggest shocks to me when I first learnt about carers allowance.  I honestly, naively, thought that carers would be given an allowance which reflected the level of care they provide to people.

Especially considering how much it would cost if they were no longer able to provide care and the person had to go into residential care.

Why aren’t the government doing more to look after unpaid carers?

3. There isn’t enough disabled parking

Before I had William, I will fully admit, I was one of those people that used to get really annoyed at the number of disabled bays there are in car parks and on the street.

It seemed like they were everywhere.  And it also looked like there were far more disabled bays than disabled drivers.  Again, wrong!

These days I have no choice but to park in a disabled bay in a car park because I cannot get William out of the van otherwise and if I am parking on the street I tend to park on double yellow lines because all those spaces I used to see seem to have vanished!

They are still there of course, it’s just that there really weren’t that many at all and there is a huge demand for them, a demand I was blind to.

4. Language Matters

I’ve never really put all that much thought into language if I’m honest, never really been that bothered about the origins of words, especially insults. Until William was born.

Now I understand how damaging language can be when used in the wrong way and terminology which was once used to define medical conditions is hurtful to many when used as an insult.

I cringe when I hear someone use the R word and have fallen out with friends who have refused to stop using certain words, that led me to writing this article recently.

Nowadays I am far more aware of how much language matters and how important it is that people consider how they use it.

5. Having a disabled child isn’t the worst thing in the world

Honestly if you’d have told me I would have a disabled child I would have been terrified and probably wouldn’t have had a child at all. That would have been such a mistake.

Having William has changed my world.  He is the happiest child you’ll ever meet, his smile is amazing. His determination and positivity is inspirational and he changes the lives of everyone he meets.

Being his mum has changed my life so much and I have amazing people in my life now who I never would have crossed paths with had he not been disabled.

I think other people still think that having a disabled child must be the worst thing in the world as they still insist on telling me I am an inspiration, they couldn’t do it, and they don’t know how I do it.

But I’m sure they only say those things because they don’t know.

They don’t know that having a disabled child is just like having a non-disabled child, you love then the same as you would have if they weren’t disabled. You’re just their mum!

I’ve had some small successes but the majority of my requests to businesses to install these facilities are met with a firm no.

Recently I have been considering legal action and have been discussing what this would entail with a solicitor who specialises in equality.

But, in all honesty, lately I am starting to wonder if it is all worth the hassle and stress that campaigning is putting on me and my family.

Is the stress of campaigning harder than the stress of leaving a venue and returning home to allow my son to use the toilet?

In the summer holidays I had a, “well-documented”, incident in my local Tesco store.

My son needed the toilet and was screaming the place down, I’d resigned myself to the fact that to allow him to go I would have to lay him on the toilet floor.

Something I have refused to do for many years, instead choosing to leave the venue and return home.  But this time I felt it was my only option as I needed to finish my shopping, the cupboards were bare.

But the toilet floor wasn’t an option that day as it was soaking wet, whether that was water or urine I do not know, and I was not risking putting my boy on it.

So, I left.  But on the way, I stopped at customer services to tell them, yet again, how important it was to put a changing places toilet in the store.

My conversation didn’t go to plan and instead of explaining the issue, I broke down and cried (a lot) on the manager, while William continued to scream and cry too.

This incident led to various emails to and from Tescos both at HQ and local level.

Eventually, I was told that as there were 3 changing places toilets within a 5-mile radius (the closest being 2.3 miles away) they had been advised by the changing places consortium that they should select stores which did not have changing places toilets locally available and that this particular store therefore did not necessarily need one.

Imagine that, the campaign leaders telling a £multi-million business that they didn’t need to provide a changing places toilet because someone else had provided one over 2 miles away and that would be sufficient.

I did not believe it and immediately presumed Tesco were making excuses.

After all, the ideal solution would be for there to be a changing places toilet in EVERY large building which provides toilets to other people so that the most vulnerable NEVER have to leave a venue simply to use a toilet.

However, I’d heard a similar excuse from a large cinema chain.

They told me that they did not feel it necessary to provide a changing places toilet as there was one approx. 1.7miles away and that they had been advised by the changing places consortium that this was sufficient.

I felt this was ridiculous and appeared on Channel 4 News saying proving how impractical it would be to use their suggested toilet if we were watching a movie.

I could have been led to believe it was just coincidence that 2 businesses were using this excuse until today when it came to light that another campaigner had been told the same thing by a different national chain, again stating this was advice they were given by the changing places consortium.

So, this makes me question why?

Why are they telling businesses that changing places toilets are not their responsibility?

Why aren’t they insisting to these businesses that it is not acceptable to expect a disabled person to leave their building, let alone travel a mile, to use a toilet?

Why aren’t they educating businesses about their responsibilities under the Equality Act 2010?  The duty to make reasonable adjustments.

And why are they making campaigners, like me, look stupid?

Mums and dads, brothers, sisters, carers who all work hard, in an unpaid role, during the little spare time we have because we need these facilities so desperately.

Why are we are being made to look stupid by requesting changes that we know are so essential, only for the supposed leaders of this campaign to tell the very businesses we are speaking with that in fact we don’t need these facilities as we can use one somewhere else?

Why am I wasting my time?  Why am I fighting so hard to raise awareness and make changes when others are essentially ruining any chances of that happening?

I have spent a long time wondering why there aren’t more families campaigning for changing places.

Why, even after 10 years, there are so few facilities and why the families before me weren’t still campaigning.  I now see why.

And that is why I have lost the will to campaign for changing places toilets.  Not because they aren’t needed, desperately by so many people.  Not because I cannot be bothered or don’t have time anymore.

No, I have lost the will to fight because a consortium of so called ‘experts’ are giving £multi-million businesses another excuse to not provide changing places toilets for my disabled son.