But here’s why I’m so glad we did.

Never ever have I seen him so happy.

Never ever have I been able to persuade him to stand in his standing frame (critical for his development) for an hour at a time!

Never ever has he had an activity that he can enjoy truly independently, in his own room.

He has always had to rely on us and we’ve had to enable almost everything.

He is beaming from ear to ear! He is a truly happy little boy.

That’s something that I worry about a lot – his happiness.

Now, don’t get me wrong, we bought a second hand Xbox as we had no idea really if he would be able to use it.

It’s pretty grown up. And his fine motor skills are very much behind his peers.

But to our amazement, in just a couple of days, he was doing things we hadn’t dreamed possible with his thumbs and steering with a wheel arms extended with almost no difficultly.

And he was even beating my husband in races and football matches!

His concentration levels have drastically improved and I’ve barely seen an involuntary muscle spasm during his playing of the games!

It’s almost a Christmas miracle.

It has its downsides. I have missed him a lot this Christmas.

He has not needed me, nor wanted me to play (I’m a girl and I’m rubbish at games, only Daddy is allowed to play with him!)

But I have to admit I am also very grateful of a little respite.

Of being able to get some everyday tasks done without worrying if he needs help or wants to do or play something else.

Some of the guilt of either not getting work or house work done or not spending enough time enabling him when I am doing those things, has been removed.

YAY! That’s a nice feeling.

And I have sat and watched him play and just soaked up his enjoyment.

It is truly wonderful to watch. Hearing him cheer each goal or try he scores, as if it’s the best thing in the world is just brilliant. I wish I could get that excited about things!

We will, of course, have to be sensible in the amount of time he plays on it.

Of course being the Christmas holidays we literally just let him do what he wanted really which was play on it for most of the day.

But now he is back at school, he will be limited to an hour after school (in the standing frame) on a school night. He is a little bit disgruntled about that!

For him to just be able to go into his room and play independently is such a revelation for us.

It’s something that his beautiful twin sister has always loved and been able to do.

She’s a very social little thing, but like all of us, she does like to go and play by herself.

She likes to read books to her baby dolls and do some writing and colouring in her room.

She likes to just pop off for a bit and have a bit of me time. And so she should.

But Hadley has always missed out on that. He has always hated being by himself because it has been so restricting and ultimately boring for him.

So, although I am sure there will be plenty of times in the future when I will wish for my son to re-enter the world of conversation and real people and hang out with me, I can’t begrudge him this new-found pleasure at the moment.

It’s so good for him.

#BestChristmasPresentEver.

——-

Hadley is using a stander in the photo which was supplied by the Newlife Newlifeable Scheme – check out this post for more information.

We went ice skating at the Cathedral and it was truly magical.

Finding an activity that is accessible to all of us as a family is always a joy, as there are way fewer than we would like.

Being able to take both of my children ice skating was incredible and not something I had envisaged would be so easy.

One had ice skates on, the other wheels!

You see, Hadley has Cerebral Palsy and is a full time wheelchair user.

He was overjoyed at being able to wheel himself around on ‘snow!’

And his twin sister, Erica, could hold on to his wheelchair and feel a bit more stable. Their faces were a pure delight!

The four of us (hubby came too) left the ice feeling suitably worn out and hungry for a nice family lunch with Hadley and Erica’s grandparents who came to watch.

In fact the kids were complaining of being ‘starving’ and ‘needed something right away!’. They are six years old.

So we popped around the corner to a nice cafe and ordered something delicious for all of us. Food was fab, it was busy, but everyone was fed and watered and having a good time.

But here’s where things started to go downhill.

Inevitably we all needed to use the loo after lunch.

It had now been a couple of hours since our arrival in Winchester and almost three hours since we left home.

This of course was pretty easy for most of us (despite the queues as it was a Saturday and very busy everywhere as you would expect).

But Hadley needs a bench and a hoist to use the toilet. Something that is not provided in standard accessible toilets.

Now Winchester has a Changing Places facility, located in the Discovery Centre I believe (and I’m told it is great!).

But that was the other side of town from where we were enjoying the Christmas markets and skating and from where my son’s need for the toilet became urgent.

It was way too far for us to walk in the freezing cold with a little boy who was desperate for the loo and his exhausted sister. And it would have taken even longer in the crowds.

So he had to, ‘go’, in his nappy.

And we had to find a public convenience closer to the Cathedral and lay him on the toilet floor to change him.

It was not a pleasant end to our day – especially not for Hadley, as you can imagine.

Who would be happy about lying on a disgusting toilet floor? And it really hurt my back, lifting him from his wheelchair and back up again.

He’s getting exceptionally heavy. As he should. He’s a growing boy.

But without Changing Places and Space to Change facilities EVERYWHERE, this is what happens to people.

Every single day.

People that others love with all their hearts.

People who endure more than you and I could ever imagine.

People who should be as valued as everyone else.

People who are sometimes some of the most vulnerable in our so called caring society.

They are faced with this danger and indignity all the time.

Whilst clearly we applaud the Discovery Centre for it’s wonderful facility, it was still of no help to us on that day, being located on the other side of the city.

The other issue is, that this Changing Places toilet is only open during the day. After 5pm on a Saturday it is closed.

So does that mean that no severely disabled people are welcome in Winchester in the evenings?

What if we had wanted to stay and see the Christmas lights and have an evening meal as a family.

We did want to do that by the way, but after having to go through yet another change on a toilet floor, Hadley became restless and cold and understandably wanted to go home.

So we left your city where we could have been spending some more of our hard earned cash, went home and watched a movie, gave both of our children a big cuddle and consoled them, telling them we’d see some Christmas lights another time, somewhere else.

I urgently beseech you to install other public Changing Places and Space to Change facilities in and around the city. And to become accessible to all at all times. I also urge you to actively encourage businesses, leisure venues and restaurants etc to install suitable toilet facilities for all of their customers.

There are 11.9 million people in the UK who are registered disabled. Many hundreds of thousands of them have additional toileting needs and require the use of an adult sized changing bench and hoist to use the toilet.

Why would you not want them in your city? They have a disposable income valued at £212 billion!

More important facts:

The Equality Act 2010 states that ‘Service providers are required to make reasonable changes – including to the built environment – where a disabled customer or potential customer would otherwise be at a substantial disadvantage.’ Surely having to be changed on a dirty toilet floor is a huge disadvantage?

The Equality Act 2010 also requires: ‘That service providers think ahead and take steps to address barriers that impede disabled people.’ It also says that they ‘should not wait until a disabled person experiences difficulties using a service’. 

Well that’s a bit late now isn’t it? 

I did write to a representative at your council almost a year ago to raise my concerns about the lack of facilities in Winchester and never received a reply. I do hope that is not reflective of your future accessibility plans for the city.

I will very much look forward to your response.

Yours sincerely

Sarah Brisdion

I’ve just come home from a family meal. We chose a lovely refurbished pub and hotel, near to where we live.

The food was really quite impressive, the kids were very well behaved, there was a good choice of food and a great atmosphere. It has clearly been lovingly restored by the owners who, in my opinion, have great taste in decor and wine and it offered quality, local produce.

The children’s menu was also very well thought out (and the kids really did love their dinner).

But for me, it was a real struggle to put on a happy face and enjoy it (but I did, of course, for my family’s sake). Why?

Because it was quite obvious that not a thought had gone in to access.

Starting with the huge steps up to the restaurant from the bar. We would have sat in the bar, but food isn’t served there, so we had to carry my son in his wheelchair up the steps.

He’s six, so between my dad and my husband that is just about doable. He thought it was great to ‘fly’ up and down them, but it made my heart sink.

Because it will not be long at all before that is just plain dangerous.

And imagine having to do that with an adult.

How utterly embarrassing for them, not to mention impossible in most circumstances. Despite the staff being cheery and attentive, nobody acknowledged or apologised for that (or offered an alternative route).

Whilst a member of staff handed us menus and took our drinks orders, I asked quietly where the disabled/accessible toilet was – to which I got a very apologetic reply, that there wasn’t one.

The builders had taken it out in the refurb and not put it back in. The member of staff said that one would be put in, but it had not been as yet.

She did tell me that there was a slightly larger cubicle in another part of the building that we could use – but we didn’t, we just held on till we got home as we knew that would not be any help.

A standard accessible loo is hard enough to use for changing and toileting my son.

A cubicle is impossible.

The lady was very embarrassed and I did feel for her.  So I was understanding and polite and didn’t question it or make a scene. It was clearly not her fault or decision.

But it made me feel so disheartened, sad and cross.

I sat through the meal next to my little boy, in his bright orange wheelchair, as he hungrily devoured his battered fish and chips and played with his toy cars. I watched him really enjoy his meal and being out in a nice place to eat.

Despite finding many public places a huge challenge with his anxiety, he loves pubs and restaurants, particularly if they have nice fish and chips!

So we do eat out often as a family. It’s one of our favourite things to do together. And in my mind, it’s one of the things we should be able to do together as equals.

Shouldn’t we? It broke my heart that he is so blissfully unaware that this place had not considered him at all. Not to mention the rest of the disabled population!

I have not named the restaurant because I would like to build a relationship with them and see if I can help them become more accessible (and of course I will be strongly recommending that they include a changing bench and hoist in this disabled toilet that is yet to be put in. (If Wetherspoons can include a Changing Places, then this high-end beauty of an establishment can!) I’d really like to help them.

I just don’t think that the needs of those with disabilities has crossed their minds. Or at least I hope it’s just ignorance and not that they have chosen to be this inaccessible.

It does make me wonder just how many other places that are refurbishing will end up in this same inaccessible situation? Why is nobody making sure that places are actually catering for all customers? Or are we just expecting too much? Should we just accept that we are not really that important?

Of course not!

I consider all children (but, of course, especially my own) to be some of the most important people on the planet. We should be teaching them that the world should be accessible to all, not accepting that this is the way things are! They are the next generation.

The future depends on them.

I feel it’s my duty now to make this place aware of how awful they look to a family with additional needs. We visit a lot of pubs and restaurants, many of which are so old it’s a wonder they are even still standing.

Then, of course, I’m not as expectant.

But when something is new and lots of money has obviously been invested in making it impressive (it’s hard as a designer to not notice the extravagant things like designer light fittings and gold foil printed menus) to discover how far down the list of importance the disabled customer comes, is a real slap in the face.

I’m going to try to change that. Here and wherever we go. If I can.

It was 6.30 am when he broke down and cried, lying next to me in his bed.

“I don’t want to have Cerebral Palsy any more mum. I hate it.”

He sobbed.

“Why do I still have to have it as a grown up too?”

“I won’t be able to walk even when I’m a grown up”.

His twin sister then added, “Why does Hadley have Terrible Palsy?” (That’s what she calls it, bless her heart.)

It was really, really tough (world’s biggest understatement).

I struggled to keep my voice calm and not break down myself.

I couldn’t let them see my hurt too.

But inside I was screaming, ‘I hate Cerebral Palsy too!!’

This happens from time to time.

But this morning, on the eve of their birthday, and because Hadley is finding moving up to year 1 really difficult, it was possibly the hardest of all the times he has asked these questions.

And I was not prepared and still a bit sleepy, which really didn’t help matters.

This is what I said. And I just hope it was good enough.

I hope his day has not been too rough on him and that he has not felt so heartbroken and different and like life is so unfair.

And I hope Erica is not worried about him or about what Cerebral Palsy is.

I want them to be excited about their birthday tomorrow and not sad.

But life is so unfair on both of them sometimes.

Living with disability and understanding so much about it at such a young age must be horrible, for both of them.

I said, “I know you hate it darling. And we all hate things sometimes. It’s okay.”

I explained that I would like to answer Erica’s question about why he had Cerebral Palsy and perhaps that would help.

I said. “When you were in my tummy, your brain grew a little bit differently to Erica’s.

Erica’s grew so that she would be really good at being kind and generous and funny and yours grew that you would be kind and generous, sporty and have the best memory EVER!

Yours also grew to have Cerebral Palsy.

Everyone’s brain grows differently.”

(Forgive me, medical professionals).

Then I said, “There are lots of people in the world with Cerebral Palsy, including lots of your friends and lots of famous people.

Like the lady that mummy and daddy went to see who you thought was really funny (comedian, Francesca Martinez).

“And lots of the amazing athletes you’ve been watching in the Paralympics. Lots of people have it.”

I said, “And do you know what, you will be able to walk when you are a grown up.

You are so clever and it might take a bit longer than you want, like it took Erica longer to ride a bike than you, but you will be able to when you are a bit stronger.

And you are getting really strong.”

I also told him about his Teaching Assistant’s son, who also has Cerebral Palsy, who was unable to walk when he was little, but who can walk and run now.

I told him that his mum could barely keep him still and that I was sure she would love to talk to him about how he got strong and started to walk.

(I briefed her on the whole morning’s conversation in private at drop off so I’m sure she has worked her magic today, helping to reassure him).

I said, “Perhaps we should not call it Terrible Palsy (Francesca Martinez, this is where you come in).

The funny lady that we saw the other day calls it being wobbly.”

They both laughed.

I started to feel like I might be helping a bit.

“Why?” they said, “Because her body is a bit wobbly and the word Cerebral Palsy is really hard to say.

I think that’s a good word, wobbly.”

They laughed again.

“Perhaps though, you might like to choose your own word,” I suggested.

“Silly billly” said Hadley. “I think I might say I’m a silly billy”. Admittedly this is not quite what I was thinking of, but I was just so grateful he was starting to buy into the idea and was not so distraught that I said that sounded good.

“Perhaps it could be something to do with your amazing memory?” I then suggested further.

(He has and incredible memory, almost photographic….it’s astounding!)

So, in the teary eyed, early morning, half asleep kind of way we were discussing this, we came up with the idea that Hadley’s brain grew some super-powers when he was in my tummy – and he is Super Memory Boy.

It’s not perfect. It probably won’t stick.

But it helped this morning.

There is never a right way to tackle these things, that I know, but all day I have been wondering how other people have explained and helped their children cope with disability and the rollercoaster of emotions that comes with it.

How they have managed to put on a brave face when their little baby is sobbing and you can’t take away the thing that is making them so sad.

If anyone has any insight and suggestions, please let me know.

I’m sure this won’t be the last time, but will I ever really be prepared?

Well that will teach me to worry. Because he is the complete opposite. He is sport obsessed!

He’ll watch pretty much anything, but I guess his top three would be football, cricket and formula one! 

But he’s not content with just watching sport. He plays LOTS of sport and absolutely throws himself into everything. And he is VERY competitive! 

He rides (horses and donkeys) with the RDA (Riding for the Disabled Association).

He plays cricket (he is a mean bowler and his hand-eye coordination is way better than mine!), tennis, wheelchair rugby and table tennis, as well as football (with a bit of help from his dad or grandad).

He also loves bowling, swimming and cycling (he has a special trike). He’s even tried his hand at fencing!

I’m sure there are other things I’ve missed off the list too.

Occasionally, the frustration and upset I worried about will rear its head, but it’s very rare.

In fact, 99% of the time he is in his element when he is throwing, kicking or hitting some sort of ball or involved in some sort of race!

What’s so wonderful is that playing sport for Hadley is the most amazing therapy. (As it is and would be for many children with or without special needs).

Tennis in particular has been incredible for him and we’ve seen dramatic improvements in his core tone since he has been having wheelchair tennis lessons.

The reaching and stretching he manages and the coordination required when holding a racket is amazing and we would never be able to convince him to do these during normal physiotherapy.

He would find it very hard and would complain and most likely refuse.

But his love for sport means he fights the pain barrier and tries so hard. He’s doing himself so many favours without even realising it, making himself stronger and more independent by the day.

Horse riding also helps his core tone and balance no end. But more than anything, provides a stretch of his legs that we could not achieve any other way, not without serious protest and/or discomfort.

And of course emotionally, the contact with animals (particularly horses and donkeys) is very theraputic and calming. Win-Win!

And this summer, of course, we have added the Paralympics to his list of sport viewing choices.

He is really enjoying watching anyone competing in a wheelchair.

I’m convinced that after the games we’ll see him self-propelling more, just to be like the guys and gals in Rio.

He’s also very likely to choose a new sport after watching the games – I’m just hoping it’s not stunts like Aaron Fotheringham – did you see that jump during the opening ceremony?

All I could think was, “His poor parents..” – they must have been having kittens!

I was never very sporty as a kid. I liked watching sports, but was not exactly the most skilled at taking part and so preferred to watch others and cheer them on. But I really would have loved to have been good at sport.

So it is wonderful to see how much Hadley enjoys it and how good he is! Competition fuels him and he is so passionate. He cannot hide his excitement for sport and I love that he has that.

I am so determined to keep fueling that passion and keep removing any obstacles that might come his way. I’m sure that some sports will be more of a challenge than others, but where there is a will there is a way.

I believe it’s just about finding the right way, and sometimes the right person to help.

When we approached our local tennis club about giving Hadley some lessons, we happened to be contacting the right place for him, without even knowing it.

The coaches there have been coaching a wonderful guy who is now playing for Britain in the Quads wheelchair tennis competitions. He happens to have the same type of Cerebral Palsy as Hadley and he also happens to be a really nice guy.

He has watched Hadley play and given him some tips.

His dad also has been fantastic, adapting one of his son’s old tennis wheelchairs for Hadley to use during his lessons – he looks like a real pro.

All of this has inspired Hadley to try really hard and he absolutely loves his lessons. I’d really recommend them to any child who needs to develop their fine and gross motor skills as well as core tone.

It’s possibly the best thing we’ve ever done for Hadley therapy-wise. But he does not look at it as therapy at all!

Of course it’s not just physical therapy – exercise and concentrating on something so intensely is also great for stress relief as well as aiding sleep (I say that quite loosely as Hadley’s sleep patterns are far from ideal, but on a big sporting day, he really does sleep more soundly.)

I could talk about the benefits of sport for hours, but I won’t. Not tonight.

Because having taken Hadley horse riding (I was his side walker for an hour!) and playing cricket and football in the garden with him before bed tonight, I’m pretty tired too!

Physically, having a child with a disability, who needs a lot of extra support to do the everyday tasks we take for granted, is sometimes too much for one person’s body to handle.

Today, my body has decided that it can’t cope.

Today, my back is screaming at me to stop and lie down.

I know why.

We had a little fun on the trampoline yesterday. It was great!

Just because my son cannot stand or sit by himself, I didn’t see why he should have to miss out on bouncing with his sister and friend.

So I carried him on held him up and jumped and bounced around with him, seeing who could go the highest.

The smile on his face and on his sister’s too, was just wonderful. 

But painfully, for five minutes of not wanting him to ‘miss out’, I’ve caused a lot of ‘missing out’ for the rest of this week.

I have had to call in the Cavalry (AKA Nanny and Grandad) to take over.

Because I can’t do any lifting or transferring today. Not without a lot of pain and that’s something that I don’t want my kids to see. Or feel guilty about.

I have chronic back pain.

Not primarily from the inevitable lifting that comes with our lives, but from an old horse riding injury.

That injury has just never been given a chance to heal with the amount of lifting and twisting that I do. 

It’s one of the most frustrating things to either watch your child miss out or doing something that you know is going to make you pay later. 

How I wish I had never gone on that ride the day I hurt my back. If I could only have known how important the health of my spine would be.

Oh, hind-sight. I really hate you. 

It was the first time I had got back in the saddle after having my twins.

I remember being so excited just to be out of the house without an entire armoury of equipment and stuff that goes with twin parenting. 

They were just six months old at the time. I was looking forward to an hour child-free, to re-energise and get some fresh air.

The twins were very premature and this was the middle of a freezing winter, so we had been trapped indoors in the warm for months on end to avoid unnecessary illness (as their lungs were very underdeveloped).

Then my back popped whilst cantering and the agony struck.

I had no idea what a twin pregnancy and an emergency C-section had done to my core strength.

It couldn’t handle riding.

My body was no longer capable of what I used to put it through. It was no longer strong in that way. 

That day, I was trying to look after myself and it sadly back-fired. But you do have to look after number one.

As the primary care-giver, you need to understand how vital your role is.

And how irreplaceable you are to your tiny troop. 

It’s OK to call your parents and say, ‘It’s your turn today. Today I need to rest.’

And sometimes, as I have had to learn, it’s ok to say no to your child, even if it means they don’t get to do something they so desperately want to do. That’s very hard to do.

But if you don’t look out for yourself, that need for a rest will get bigger.

It won’t just be one day of recuperation. And then you will feel worse. More guilty. More worried about the ‘missing out’.

Then you may be at the point where you literally cannot do anything that your child needs you to do for them. The essentials like getting in and out of mobility equipment and wheelchairs, or bed, or the car. Taking them to the toilet. Changing a nappy or pad. 

So today. In between getting a few essentials done (there is quite a lot I can achieve on a laptop whilst reclining with a hot water bottle behind my back) I will rest my back.

And I will do my best to not feel guilty about it.

The kids are almost certainly having more fun with the Cavalry anyway!