It is estimated that 1 in 400 babies born in the UK have a type of cerebral palsy.

Figures indicate that with the birth rate in excess of 700,000 per year there may be as many as 1,800 new cases of CP in children each year (source)

I am proud to be Mum to a very determined little boy who has cerebral palsy.

William, now 8, suffered from a lack of oxygen prior to his birth which resulted in severe brain damage and a diagnosis of CP.

Cerebral palsy is a condition which affects people in many different ways.

William is at the most severe end of the scale and his CP affects his muscle control in his whole body resulting in him being unable to sit, stand, walk or talk.

He has no control over his body and cannot make many purposeful movements.  But despite this he is one of the happiest children you will ever have the pleasure to meet.

He is a very determined little boy who rarely lets his frustrations get the better of him.

We try and make sure he lives as full a life as possible and whilst he cannot do some of the things other 8-year olds do, he still has great fun and always has a smile on his face.

His disability has opened my eyes to the many barriers faced by people in the UK who have cerebral palsy and there is one major barrier preventing my son, and thousands of other people with CP (and other disabilities) living their lives to the full.

When William was little, and until he was about 4 years old, we were able to go out and about without much thought for where we were going and how long we would stay.

Sure, we had to pack special meals and make sure we had enough nappies and a change of clothes, much like you would with a baby, but it was do-able.

All that changed when he became too big and heavy to put on a baby changing unit.  Suddenly we were forced to face the sad reality that people like our gorgeous son seem to be invisible to much of society.

That can be the only reason their needs haven’t been catered for when it comes to public toilets.

By public, I don’t mean council funded toilets, I mean ALL toilets available to members of the public.

To date there are only 1,033 toilets in the whole country which William can use, to put that in perspective there are 600 public toilets in The Shard alone (and William cannot use any of them).

I, naively, assumed that when William was too big for the baby changing room we would simply use a disabled / accessible toilet.

After all, he is disabled so it would make sense these toilets would meet his needs.

But, as you’ll know if you have ever snuck into a disabled toilet, the only differences between these toilets and a ‘normal’ loo is the addition of handrails, a lower sink and (sometimes) a bit of extra space.

But William cannot stand up.  He can’t sit without support and he can’t use his arms to transfer himself onto a toilet, and he will never be able to.

If you cannot transfer yourself to the toilet then you’re going to need some help, either from carers or (ideally) a hoist but have you ever seen a hoist in a disabled toilet?

Luckily, William is still pretty light (22kg) so I am able to lift him onto the toilet, but once he is a fully-grown man I will have no hope of doing that and will rely on a hoist to help me.

But before I can lift him onto the loo I need to remove his trousers, he can’t stand up so my only option is to lay him down to do this.

Have you ever seen anywhere suitable for me to do this in a disabled toilet?  It pains me to say the floor is our only option.

Toilet floors have an average of 77,000 germs and viruses so that isn’t somewhere I fancy putting my son, not least because he has a low immune system, something which is common amongst people with CP.

These days, if we want to go out as a family, we have to ensure that we are going somewhere which has a ‘Changing Places’ toilet in case William needs the loo while we are out.

He may not have developed many skills over the years but he does understand how to use a toilet.  He is not happy to ‘mess himself’ and I wouldn’t expect him to simply because he is disabled.

Of course, this means our days out are limited.  Either in where we go, or how long we can stay.

I have lost count of the number of days out that have been cut short because there was no toilet available.

Shopping baskets I’ve left in the middle of the supermarket without paying as I’ve had to return home empty handed when William was desperate for the loo.

Invitations I’ve turned down because I know there won’t be anywhere for him to go for a wee.

Many large businesses and services are not willing to provide such facilities regardless of the need (at least 1 in 260 people in the UK need a changing places toilet – according to Clos-o-mat) and until they change their stance Williams (and therefore my) world will remain limited.

He can’t go to the cinema, have a day out or even do the weekly shop with me (he’s probably relieved about that!)

Cerebral Palsy is not a condition you can prevent or cure, it is for life and it affects people in diverse ways.

But one thing that remains the same for everyone with this condition, is the need to empty the bladder and bowels.

Changing places toilets are the only place that offer a safe and dignified solution to do that.

This World Cerebral Palsy Day I want you to know how difficult it is for disabled people to find a usable toilet in the UK, and maybe help to do something about it.

To finally have this issue discussed on daytime TV on one of the biggest ITV shows was very exciting to me (I must get out more)

So, you can imagine my disappointment when the debate they were talking about wasn’t the one I had presumed it would be.

To me, the great nappy debate would be about why disabled children have to lay on toilet floors to have their nappies changed, and why disabled adults don’t even have that ‘luxury’.

It turned out what they considered to be “the great nappy debate” was simply one mother choosing to change their baby in a public area.

Her choice to change her baby in front of people was met with outrage and people were up in arms.

The poll went crazy, over 1000 people commented on the Facebook post and everyone on my newsfeed was talking about how outraged they were.

Really?  Outraged to hear that one mother didn’t have access to a baby changing facility one time, in one place?

People were shocked that a mother would not be able to change her baby because she had twins and couldn’t fit the double buggy into the room where the baby change facility was.

There were numerous comments from people saying that the mother did the right thing as she couldn’t be expected to lay her other baby on a toilet floor or leave it outside.

What would their reaction be if they knew that parents across the UK have no choice BUT to lay their disabled children the toilet floor and face this exact issue every single time they leave the house?

Not just in one place, on one day, one time.

Would they be as outraged to hear that families of disabled children face this inequality every day when away from home?

Or that they face the same issue if they have more than one child because it is impossible to fit a wheelchair and several children into a disabled toilet and still have space on the floor for the disabled one to lay down?

I would hope they would be as outraged about those ¼ million people as they are about this one baby.  But experience tells me otherwise.

This is the REAL great nappy debate.  The one that should be being discussed on mainstream, daytime TV.

This is the debate that people should be outraged by and want to do something about.

But in reality, it isn’t glamorous or interesting enough to be on daytime TV because disabled people don’t bring in the viewers.

Unless of course you call them “inspirational” and talk about how they have overcome adversity.

The real life, nitty gritty, and harsh reality of having a disabled child, or being disabled is not deemed as newsworthy, or interesting to mainstream audiences.

As long as we don’t discuss it, it won’t affect us.

And on the odd occasions it has made mainstream news, such as when it was discussed on Channel 4 news last year, or BBC News earlier this year, the reaction isn’t outrage.

It is quite the opposite.

The people who were outraged that this mother had to change her baby in a public place, would probably be outraged that disabled people would expect to have facilities to allow them to have their continence needs met.

We know people expect baby changing facilities to be provided.

We know people would think it essential and entirely appropriate for all shops, restaurants and public buildings which provide a toilet to also provide a baby changing facility.

But for some reason, most people who would consider those facilities essential, would say we can’t expect the same places to provide something similar for a disabled child or adult.

Because we can all empathise with someone needing to change their baby.  It’s a normal thing, people have babies and they need to be changed.

We understand it.  We know how to fix it and we expect businesses to understand it too.

But disability is not the same.  Unless you are disabled or have a loved one who is, then this issue is probably something you’ve never even imagined happens.

You have probably never even wondered how a disabled person goes to the loo, I mean, they just use a disabled toilet right?

But this is an issue that happens every single day.

And it needs discussing.

People need to know about it. And they need to do something to change it.

It’s time to be outraged for the ¼ million people who find themselves in a similar position every single day.

The ¼ million people who are too disabled to use a disabled toilet.

A standard disabled toilet is only usable by someone who can transfer themselves to a toilet.  If you cannot do that, then you cannot use a disabled toilet.

If you cannot stand to remove your clothes and/or pad or nappy, then you cannot use a disabled toilet.

If you need to lay down to be cleaned and dressed after using a toilet, then you cannot use a disabled toilet.

If you require a hoist to lift you from your wheelchair onto the toilet, then you cannot use a disabled toilet.

You would need a facility known as a changing places toilet.  A facility which includes an adult sized changing table and a hoist as well as a toilet and basin.

If my disabled child had needed the toilet in the same café as the lady discussed on Loose Women this week then I would have had to choose between laying him on the toilet floor or leaving completely.   because I would not have had the option of changing him where she changed her baby.

Because he is 8 years old and it would be completely inappropriate to undress an 8 year old in a public area where you might consider changing a baby.

So, this is the REAL nappy debate:

Should all large buildings which provide toilets to the public also provide a changing places style toilet to ensure that everyone’s continence needs can be managed in a safe and dignified manner?

I’m not great with the change of seasons.

I love the sunshine.

It lifts my spirits and makes everything much brighter, including my mood.

But no matter what we do, autumn will be here officially before we know it and then the winter and those dark cold nights will set in again.

We all moan about the weather in those long seasons but as the seasons change it is important to remember all the wonderful things that these winter months will bring us.

Bonfires and fireworks, festive fun, woolly jumpers and delicious winter comfort food.

Here are a few ways to try and ease the change of seasons and make it a little easier to bear:

1. Make the Most of the Good Days

If an unexpectedly sunny day arrives, don’t waste it. Go for a walk or have lunch or dinner outside. Soak up the vitamin D we lack so much in the UK while you can.  Make some memories in the sunshine so you have something good to look back on when it’s dark and rainy.

2. Write a Bucket List of everything you want to do during the Autumn and Winter months

Then spend the coming months ticking them off the list.  Whether it is places you want to visit, people you want to spend time with or things you want to do, this is a great way to plan some things to look forward to.

3. Use the Winter Months Wisely

Whether it is to get fit for the summer or to learn a new skill, those dark evenings can be spent in better ways than simply watching TV under a blanket. When the spring arrives, you’ll be glad you did it.

Many people associate smells with seasons so think about what makes you feel good in the winter and light a scented candle to make you feel good.  I like cinnamon scents which are very autumnal and festive so I have my house filled with those kinds of scents in the winter.

4. Bake or Cook some of your Favourite Recipes

Foods that remind you of happy winter memories are a great way to lift your spirits when you are feeling seasonally sad. I’d bake gingerbread or cook a delicious roast to share with my family.

5. Book a Holiday

The winter is the best time to book a holiday as it gives you plenty of time to plan and gives you something to look forward to.

Some families LOVE them and get very upset when they are over and everyone goes back to school, while others, like me, breathe a huge sigh of relief as soon as they see the school bus coming down the road!

For me, day one of the autumn term is possibly the best day of the year!

It’s the day I keep for myself, the day I allow myself to ignore the cleaning, washing, cooking and just relax.

For me, the first day back at school is my version of Mother’s Day!

Because although Mother’s Day is advertised in the greetings cards as the day we get to relax and put our feet up while everyone waits on us, in reality we know that isn’t the case… that kind of treatment is reserved for Father’s Day!

But whichever side of the fence you fall, whether the first day of term is a huge relief or a day you’ve been dreading, here are 5 things you should do…

1. Take the obligatory ‘back to school’ photo… otherwise you might as well not send them in at all.

If you don’t post that photo on Facebook are they really at school?

2. Have a cup of tea.  Drink every last sip, whilst it is still piping hot and while sitting comfortably in one spot.

Actually, have several and enjoy every single one!

3. While you’re sitting there listen… can you hear that?  Nope me neither!  They say silence is golden… it’s also covered in lots of amazing rainbow unicorn glitter… it’s THAT good!

Don’t worry though, if you’re missing the kids, it won’t last long!  Only a few (amazing) hours!

4. Take note of how comfy you are without a child on you / next to you / demanding you get up every few minutes, and enjoy it!

5. Treat yourself to one, or all, of the following:

–  A pee… in peace…. Without an audience!

–  Some food which you don’t have to (delete as appropriate): share/eat with one hand/wait until 3pm to find time to eat/stop halfway through to change a nappy, clean up sick etc etc/eat cold.

Chill out and relax.

Whether you have been counting the hours for this day, or willing it to never arrive, make today about you!

But when you have a child with special needs, it can be difficult (but not impossible) to go abroad so here are 4 ideas for a summer, “stay-cation”, to allow you to get away without having to renew your passport or worry about going on a plane.

All have been recommended by other families but I have not tried any of them personally…YET!!

Ellwood Cottages

Located in the heart of beautiful rural Dorset in the peaceful hamlet of Woolland, Ellwood Cottages are outstanding conversions of three traditionally built barns, in a courtyard setting.

Everywhere is fully wheelchair accessible, there are no steps and all doors have a 760mm clear opening.

All showers are wet-room style, kitchens have accessible hob and sink with front controls worktops are all wheelchair accessible.

Adjacent to the cottages, is a heated indoor splash-pool and next door is a therapy room, where visiting therapists offer ‘pure-pampering’.

Mobile hoists are available for guests, along with wheeled shower chairs, shower-chair commodes, high back chairs with arms, bed height raisers, toilet seat raisers etc.

It sounds like they’ve thought of everything but other more specialist equipment can be hired from a local supplier, contact Ellwood Cottages to find out more.

The Harriet Davis Trust

The Harriet Davis seaside holiday trust for disabled children provides 3 economically priced, self-catering holiday houses in Pembrokeshire, for families with disabled children.

A 4th house is adapted for children with autism and other learning difficulties.

One of the houses is just minutes from the local beach while another offers an indoor heated swimming pool with a hoist and all the houses have the equipment you’d expect including hoists.

These houses are primarily available for families with disabled children but, depending on availability, can be booked by disabled adults as well.

Click here to find out more.

Tudor Lodges

If you fancy a visit to Cornwall, the Tudor Lodges look lovely.

They have 6 award-winning fully accessible lodges set in two acres of countryside.

Each lodge was designed to be fully accessible and sleeps up to six people.

They offer large level entry wheelchair accessible shower, electric profiling beds, electric hoists, riser chair, and shower chair, and other mobility aids are also available.

The Eden Project is only 30 minutes away.

Hayling Island

Hayling Island is lovely and there is lots to see and do locally too.

This static holiday home is ideal for guests with limited mobility, there is a wheelchair ramp available, all internal doorways are wider than standard doors and there is ample room inside for manoeuvring a wheelchair.

There is a wheel in wet room with grab rails and a wall mounted shower chair, however a wheeled shower chair is also available.

One of the bedrooms features an electric bed with an electric hoist.

The kitchen has been purpose designed with access for a wheelchair user with space underneath the sink and lowered units.

We begin planning our next trip almost as soon as we arrive home.

It helps overcome the deep depression I’m at risk of sinking in to on our arrival back to the UK.

You see, I love America.

In another life, I would live there.

But I don’t and probably never will because of William’s disability and his needs.

That makes me sad but I try to focus on the positives of living in the UK with a child with special needs.

America may be the land of freedom and opportunity. A country the rest of the world looks up to for its advances in technology, medicine and science.

However, on reflection as a special needs family we have lot to be thankful for here in the UK.

For a start getting out and about is made so much easier by simple things like doors, curbs and pavements.

Yes, you read it right – Doors, Pavements & Curbs!

Simple things I’d taken for granted until we began visiting the States on a regular basis.

The majority of stores here in the UK have automatic doors making manoeuvring a wheelchair so much easier. In Florida, most stores have air conditioning but it’s rare to find one with an automatic door.

Added to this the fact that very few people would think to hold open the door for anyone following behind, a lot of the time I find myself struggling to hold open a door and push a bulky, heavy wheelchair in to the stores.

Pavements (sidewalks in the US) are commonplace in the UK.

We’d be surprised if there wasn’t one but in the US they are very uncommon.

Almost everyone drives everywhere. Which is fine but sometimes with a wheelchair in tow it’s easier to walk to the next set of shops or mall rather than load up the car again.

Don’t get me started on crossing the road, you literally take your life in your hands trying to negotiate the drain gully, the raised curbs, the cars allowed to turn on red and still make it across a 6 lane highway in what feels like 10 seconds.

I’ve never been so thankful for our long leisurely pedestrian crossings and dropped curbs here in the UK.

I’ve read blogs written by American parents for a number of years about their disabled child being stared at when out and about in their local communities.

I must admit I never fully understood what these parents were writing about until we experienced it ourselves.

Of course, children in the UK stare some adults do too but only for a short period of time. In America, the staring was on another level.

Children and adults alike would stop right in front of William’s chair and stare, properly stare, open mouthed like they’d never seen ‘anything’ like it before.

I found it very uncomfortable and it makes me thankful for our more accepting local communities here in the UK, where a little boy in a wheelchair out with his family doesn’t cause quite such a commotion.

It feels strange for me to be thankful for the toilet provision in my home country.

I’m usually better known for complaining about the lack of accessible toilets that include bench and hoist equipment but in comparison to the US we are leaps and bounds ahead.

A common reason not to install Changing Places or Space to Change toilets in the UK is the lack of space in existing buildings. This is not an excuse in the US when everywhere is massive!

Come on the United States – it’s time to catch up.

An obvious benefit to living in the UK is of course the NHS – free at point of use for those who need it.

Yes, we complain about waiting lists, appointment times, equipment choice, therapy access but in comparison to the American system we are extremely fortunate.

And finally, many of our most popular family and visitor attractions have adopted carer or disability discounts.

They acknowledge the fact that a person with a disability can’t always access all that the venue has to offer or that the person may need one or two carers to accompany them on a visit.

Discounted entry prices or one carer goes free offers reflect this.

In our experience, this is not the case in the US, we recently paid £200 for William’s child pass to Universal Studios despite the fact he wasn’t able to access a single ride in his wheelchair.

So as I sit here pining for long sunny days, lounging by the pool and the Cheesecake Factory I do realise that there are benefits to being British.

The staff whisking me into theatre for an emergency c section, my baby being taken to special care, the doctors telling us he had brain damage, being moved to other hospitals, different wards and eventually being discharged.

Thinking the worst was over only for it to all start again when we met different doctors, were given different diagnosis, different opinions from multiple therapists who gave us different predictions for the future.

William is now 8 and life has settled down a lot, or maybe it’s just become our normal?  I’m not really sure?

But I often think back to day one and all the days after that which led me to where I am now and wonder if there is anything I would tell myself as reassurance or advice if I could go back in time.

Is there anything I wish I had known back then that would have made the first months or years easier?

And yes there are a few things I would tell myself and maybe they will help you or someone you know who is at the beginning of the roller coaster ride that you find yourself on when your baby is born with a disability:

1) The doctors and professionals aren’t always right.  They have no crystal ball and they can’t tell the future.

We were told so many different things by different professionals and while some of them have been correct, many weren’t.

We were told that our baby’s vision was so impaired he “wouldn’t be able to tell the difference between us and a stranger”, those were the heart breaking words we were given by a doctor who specialises in sight at Great Ormond Street Hospital.

We were devastated as you can imagine.

But William was under 1 then, he’d suffered a traumatic birth injury and his brain hadn’t fully developed so we were hopeful that the doctor was wrong.  And he was.

William does have visual impairment and wears glasses to help, but he can see a lot, he recognises people and loves to look at books and watch the TV.

We were told he wouldn’t be able to understand us, but he understands more than anyone gives him credit for and we often catch him laughing at a joke on The Simpsons or listening to the latest gossip and laughing at something funny.

We were advised not to bother with certain therapies as they wouldn’t help, luckily we ignored them and they certainly did help!

So, I would certainly tell myself, and anyone else at the beginning of their ‘journey’ that you should listen to the professionals, but take their predictions and advice with a pinch of salt.

You know your child better than any of them do, you know what they are capable of and what they can or cannot do, you know when to push therapies or try new things and when to stop if it’s not working.

You are the decision maker as far as your child goes, so stand up to them if you disagree.

2) Surround yourself with people who ‘get it’.

I was lucky, I met a couple of other Mums with disabled children when William was quite little but it wasn’t soon enough really.

It’s only when you find families going through similar experiences as you are that you realise how much you need them.

I had plenty of friends when William was born and they were amazing and really supportive but try as they might, they didn’t really ‘get it’ and it’s very difficult to know how much information they really want to hear, you find yourself telling friends “he’s fine” when they ask because you don’t want the conversation to simply be about your life and your problems.

Trouble is they then think he is fine, as I found out when one friend told me they were so glad to hear William was better now!

Over the years, I have ‘gathered’ a nice circle of friends who have children with a variety of disabilities or medical conditions, we support each other and talk about our kids, therapies, medications etc, we offer advice when it’s asked for and shut up when it’s not, we get it.

I call them the SuperMums!

But we don’t just talk about our kids!

These friends are friends for life because although our kids were the reason we met, we are now real friends, friends who go to concerts together, go on holidays together, meet for coffee, get drunk occasionally and know we can rant to each other when we need to.

Our husbands know each other, we go to the same groups, our kids go to school together, we support each other when one of us ends up in hospital with our child.

We have shared and supported each through births, deaths, engagements, weddings, divorce, heartbreak and romance.

We’ve been there for each other no matter what time of day or night when we were dealing with seizures or sickness, we’ve supported each other through hospital stays and diagnosis and we’ve shared our delights and excitement when our children have done something new, no matter how small.

If I could go back to the start, I’d tell myself to find these people sooner.

I’d ask my paediatrician, therapists or health visitor to introduce me to other families in my area.

I’d also find some Facebook groups to get support from on a national scale, I know I’d also find local people from them too and as much as I know I would hate it I would make myself get out and go to a support group.

I know now that I would have been welcomed with open arms by families who get it if I had done.

3) Accept that life isn’t what you were expecting but that it doesn’t really matter. 

I spent far too long wishing things were different.

Comparing my life to my friends, comparing William to their babies and wondering why this happened to us.

Then I realised that it didn’t happen to ‘us’, it happened to him and I needed to be the best Mum I could be to help him to get through his life and enjoy it as much as possible.

Being envious of other people’s situations is depressing and draining and having a disabled child is tiring enough without adding that!

I’d tell myself that life may not be what I expected but it will still be brilliant, as hard as that may seem at the beginning.

I’d love to tell myself that it doesn’t really matter that William isn’t like other children because he wouldn’t have been like everyone else anyway, he would have been William regardless.

I’d love to tell myself that I’ll be grateful when he’s bigger and I see friends posting photos of themselves in the rain watching a football match when I’m snuggled up in the warm on the sofa having cuddles.

I’d tell myself to be grateful that I won’t have to deal with tantrums & I won’t be subjected to kid’s TV programmes.

I’d tell myself that if I look really hard there really will be some silver linings however dark the cloud may seem right now.