Sydney is a neuro-typical toddler in every sense of the word. She is everything that I used to read about in those Baby Centre milestone emails that I subscribed to when I had her brother Brody.

Before I started to delete them.

She is every toddler meme that I’ve seen on my Facebook newsfeed. She is every status that I’ve read over the years from fellow mum friends.

She is totally different to what I am used to as a mother.

I stopped measuring and charting her head size in the red book and worrying about the next list of milestones quite a while ago now. Sometimes I still can’t believe that.

When she was born, it consumed my thoughts as I didn’t want to miss anything.

Sydney’s review brought back memories of how much I dreaded any review meeting with the Health Visitor when Brody was her age. And how much I hated the red book with its list of expectations.

It felt as though it was there purely to point out what professionals thought was “wrong” with Brody. It made me feel like a shit mum and as though my child was being judged on his abilities when he was amazing no matter what he could or couldn’t do.

As expected, Sydney’s review was a totally different experience.

Both had questions like

“Can your child run?”

“Can your child recognise themselves in a photo?”

“Can your child put two or more words together?”

But both had completely different answers.

And I admit, although I felt guilty about it, I was relieved.

This time, there would be no follow up until preschool. There would be no referrals made. There would be no appointments to health professionals that I hadn’t heard of.

And there would be no confusing abbreviations thrown my way, which of course later would become part of my everyday vocabulary.

When it came to Brody’s 2 year review, I was filled with dread. We’d never been able to tick all of the boxes in that red book and we ticked less and less as he became older.

With time, he was growing further apart both cognitively and physically from his peers.

I knew that he should have been able to do most of the things listed from watching my friend’s children develop and from sitting at baby and toddler groups watching the other children do things with ease.

But some of the questions I admittedly thought were ridiculous. To me, some of that list was child genius territory. Because it wasn’t my norm. And Brody was my first child.

We sat and went through the list in a room with NHS coloured walls. My ears felt like they were stuffed with cotton wool.

My face felt hot from trying my hardest not to cry. And at some point she decided that there was no need to continue.

Then she threw the sucker punch. She suggested that I should consider applying for DLA.

And the tears came.

Disability Living Allowance.

She was calling my child disabled.

It was like going from knowing something wasn’t quite “right” to being told that my child was disabled in one fell swoop.

Up until that point we knew Brody had delays. We had been told that he had Global Development Delay – but nothing else. There were no diagnoses.

But you see, to a newbie in this world that you and I are in, GDD can appear to be something it’s not.

You focus on the word delayed and you cling on to “might catch up”. And when your child isn’t given a diagnosis of anything, you really believe that it might be true.

You try to push aside the stories you’ve found from Google of children who don’t catch up, and think that you might be in that lucky club of parents whose children do.

All the while with a giant knot in your stomach.

Up until that 2 year review, I thought that maybe there was a possibility that Brody would catch up with his peers. But then the word disability was said out loud – thrown into the mix – and everything changed.

Even though in reality it really hadn’t and Brody was still Brody. He had always been disabled. I just didn’t know it.

It was the first time anyone had mentioned disability. And it felt like someone was taking my child’s future away. Of course that wasn’t the case at all.

Looking back, I don’t know what would have made that 2 year review easier. I doubt anyone finds people assessing their child’s development enjoyable. But when it’s not just one box without a tick but most of them or all, it’s hard to stomach.

Not because you don’t love your child. Not in the slightest. But because it’s a whole new world of worry when you’re told that your baby is disabled.

You’re both suddenly faced with a very different future to the one you imagined and you just want your child to be ok and live a “normal” life.

Nobody wants things to be difficult for their child. Things that so many of us take for granted. And the guilt of having these feelings is huge.

But you get used to your new normal and adjust. In reality, nothing really changed that day, except my vision of Brody’s future. He was still my beautiful boy. And a form or a label wouldn’t change that.

Today we stick two fingers up to the red book. We take things at Brody’s pace and we celebrate every mini and milestone.

But although we’ve got a few diagnoses under our belt, we’re still without an overarching diagnosis.

We’re still in Global Development Delay limbo. And I still remember how that 2 year review felt.

I felt completely alone and overwhelmed with sadness.

I hate to think of someone feeling the way I did back then. So if that’s you, I’m sending tons of love your way.

I know some days you might hold your child and wish things were simpler – particularly at all of those hospital appointments.

I know that some days you might look into your child’s eyes and imagine what that other future looked like. Sometimes I still do.

But I also know how much you love them. And that you wouldn’t change a hair on their head.

If you’re without a diagnosis and have been thrown in to the land of limbo that is Global Development Delay, have a little look at SWAN (Syndromes Without A Name) UK.

Because even though you might feel like it now, I promise – you’re not alone.

I’ve had a knot in my stomach for months just thinking about it.

I have lots of worries about Brody starting school. No doubt similar to other parents out there walking a similar path to ours.

When your child has a learning disability, can’t talk, lacks danger awareness and has medical conditions, lots of worst case scenarios play out in your mind when you think about trusting them in the care of other people.

It’s impossible not to worry about what ifs.

But right now, the thing that is at the forefront of my mind – because it’s the first thing we’ll encounter on this new journey – is the school taxi.

And right now, I hate the thought of it.

Trusting someone else to take my son to school.

Instead of me.

Trusting someone else to drive carefully with him in the back.

Instead of me.

Trusting someone else to make sure he is safely in his seat.

Instead of me.

Trusting someone else to know how to administer emergency medication.

Instead of me.

And trusting someone else to be a welcoming face for Brody in the morning and then there waiting for him when school finishes.

Instead of me.

His mum.

It’s all about trust and acceptance really isn’t it? And that’s something you continually have to get your head around when parenting a child with disabilities.

Because our children are vulnerable. They need more help, because they can’t always help themselves. And they struggle to communicate how they feel, as well as what they want and need.

Thinking about school when it isn’t mainstream is not easy to get your head around at first. At least it wasn’t for me. Because this isn’t school as I know it.

It’s not what I envisaged when I dreamt of Brody reaching this milestone. And although that’s OK, it takes a little time to get used to.

There might be no teddy to take home for the weekend and write about various adventures. There might be no learning to write. There might be no reading Biff and Chip books.

There definitely won’t be any walking him to school and picking him back up, reunited with cuddles at the school gate. Eagerly awaiting stories about his day, after chatting to other parents about play dates.

Instead, there will be a curriculum based around life skills.

Learning to eat and drink unassisted. Learning Makaton. Learning to recognise personal items, like a coat or school bag.

Maybe learning to use the toilet. And a communication diary – a to and fro of scribbles from teacher to parent and vice versa to replace those stories I once imagined would take place when I picked him up.

And then of course there’s that school taxi. An escort walking him into school, and there again – instead of me – collecting him after his busy day.

Watching Brody disappear into a stranger’s car is something I dread. It’s going to be hard. Really hard. And I’m not really sure that anyone will understand that, except those who can relate.

Knowing that he won’t understand why or where he is going – at least until it becomes a familiar routine – makes me feel utterly sad and helpless.

And the mere thought that he possibly might find this upsetting is unbearable.

So I’m just hoping that he will take it all in his stride and be okay.

And that maybe, eventually, he might even enjoy the ride to and from school.

Lots of parents have reassured me that their own children do.

I suppose I’m hoping that this is one of those things that is much harder for parents to come to terms with, than their child.

Because they’re so precious to us.

It just doesn’t sit comfortably letting a stranger take them and pick them up from school. But I suppose it will become our norm.

Eventually.

Despite being overwhelmed with feelings of fear, mixed with hideous mum guilt and admittedly some sadness, I know that school will be good for Brody.

And I’m sure that the escort and taxi driver will take good care of him. I’m sure they’ll become part of his new routine.

I’m sure I’ll maybe even one day be glad of the taxi on cold winter mornings (once I get over the fear of someone else driving him in various weather conditions of course).

The school taxi will be good for us.

Not only because I won’t be able to physically manage to take him to school in another village when his sister starts school, but because it’s a step forward in his independence. And that is good for him.

My beautiful boy.

Although, I wish so much Brody that we could have walked that path to your local school together, I know that your new school will take great care of you.

I know that you’ll meet lots of other boys and girls just as special as you are.

And I know that you will continue to develop and amaze us – taking everything at your own pace, surrounded by love from people who care.

And let me tell you, I couldn’t be more proud that you are my son.

Brody’s epilepsy makes me question a lot of things. The smallest of movements, memories pre-diagnosis and even laughter.

It can really play on your mind when you’re not sure if something is a seizure or not – because some seizures are easily missed.

And they can leave a lot of damage in their wake.

We discovered that Brody was having seizures when he was one years old – and this was only because they were clonic tonic ones and very noticeable.

But because there are so many different types of seizures, I will always wonder if Brody had them when he was much younger and we just weren’t aware that he was having them.

Even now he is 5 with an epilepsy diagnosis, I still find myself questioning if a quick eye roll, a strange movement or laughing in his sleep is something suspicious.

And because he is primarily undiagnosed, there is a part of me that sometimes wonders if epilepsy has caused his learning disability. I suspect we’ll never know.

Laughing was never something I ever associated with seizures.

Then late one night when I was heavily pregnant with our daughter, Brody was asleep next to me and began laughing hysterically.

I turned round to face him and he started having a clonic tonic seizure (I managed not to go into labour).

A month or so later, he was on our sofa laughing and the same thing happened.

Hysterical laughter followed by a clonic tonic seizure.

Something clicked and I remembered the first time he was admitted to hospital with seizures as a baby.

He’d had 5 that day and it was about 11 o’clock at night and he was in his cot, half awake. He began laughing and before we had time to question why, we were pulling the emergency cord and doctors and nurses were flying in.

When I thought about it, Brody had laughed before a lot of his seizures.

Naturally I did what all us Mum’s do – Google.

And from there I found out about gelastic seizures, which typically begin with laughter that is empty and hard to describe. Following the laughter, the person might then have another type of seizure.

But the laughter can be a seizure on its own.

I felt sick to my stomach because it all sounded so familiar. As well as before some clonic tonic seizures, Brody has always laughed without explanation.

And although inappropriate laughter is common in children like Brody with autism, he laughs a lot in the middle of the night, and has done since he was a baby.

He is also prone to having seizures at night rather than in the day time.

Sadly I know I’m not alone in having the worry of SUDEP (sudden unexplained death in epilepsy) playing on my mind when he sleeps.

I have plenty of videos of Brody laughing at night on my phone going right back to when he was a baby, because I had thought it was just something he did that was cute.

I took them to his neurologist who agreed that it was unusual and an EEG followed, then a video telemetry EEG and then an MRI to check that he didn’t have hypothalamic harmartomas, which can cause gelastic seizures.

The MRI didn’t show any evidence of them and as usual the EEGs didn’t provide any information – something that we’re used to happening, despite Brody having a diagnosis of epilepsy.

So we’re left in limbo, which is something we’re sadly used to having a child with an undiagnosed genetic condition.

Brody still laughs most nights and we listen and watch his monitor not knowing if he is laughing in his sleep or if it’s part of his epilepsy.

Brody’s neurologist can’t say one way or the other – he just says that it’s suggestive of gelastic epilepsy.

Unfortunately, gelastic epilepsy isn’t easy to diagnose. We were offered the option recently of altering his medication to see if it stops the night time laughter but we have decided not to for now – because what if it’s not?

I hate the way epilepsy makes you question things that could be perfectly normal with your child.

You can’t help it because a seizure can be something so subtle and you don’t want to miss it. You want to know because you are all too aware of the harm they can cause.

The loss of skills.

The regression.

But sometimes it’s just so hard to know if it’s a seizure or not.

“Drink” she proclaims. “Sore”, she says, when she hurts herself.

And then I hear her trying to sing along to things in the back of the car. It’s magical.

And it’s of course bittersweet – like so many things – because I think of how easy she has it compared to Brody who struggles to tell us what he wants constantly.

Communication is so important.

I don’t think you really get that until you have a child who struggles to communicate.

When they want something, you guess what it is.

When they’re unwell, you guess what’s wrong.

When they come home from nursery or school, you guess how their day went and rely on others to tell you.

It’s a constant guessing game. And this guessing game is not fun to play.

Because you’re playing with life. With feelings. With wants and needs.

It’s so hard to imagine what it must be like to be Brody.

When I get frustrated at him lashing out because he himself is frustrated, I try to take a breath and imagine how it feels to be a child who isn’t able to tell their Mum what they want or what is wrong.

Sure it’s not easy for me, but it’s a lot harder for him!

I look at how demanding my daughter is at the age of two.

How many times a day she tells me she wants a biscuit?

How many times a day she wants, “Baby Joy Joy”, on the television?

How she tells me when she wants to play with play-doh or stickers or go to soft play.

How she takes such pleasure in pointing things out to me and repeating their name.

Brody points (he didn’t use to and I’m oh-so-grateful he now does). But he can’t tell me what it is he is pointing at.

And sometimes it kills me that I’m just not sure.

I know how excited he used to be to sign “bird” when he saw one. And how excited we were to share it with him.

Communication is a wonderful thing.

I’m hopeful that we’ll find better ways to communicate. That he’ll learn more Makaton. That one day maybe we’ll be able to use PECS.

That one day maybe speech and understanding will come more easily.

Until then, we’ll just have to continue with this guessing game.

As long as he never has to guess how much we love him.

Because we do – with all our hearts, all of our words and all of our actions.

Last year Brody outgrew his buggy and we found ourselves at wheelchair services being measured for our first wheelchair.

I’ll admit I had mixed feelings about it at the time.

Not because I was ashamed or embarrassed but because I was sad that we needed one.

It wasn’t something that I had envisaged as part of Brody’s future.

It was one of those little reminders that Brody isn’t following a typical path and one of those appointments that left me having a cry in the car afterwards.

But the wheelchair has been great. Pushing him in it is much easier than the buggy he was too big for.

And sometimes it helps by providing a quick explanation to strangers when he has challenging behaviour.

I suppose because with a wheelchair disability is quickly visible.

But it took a while to get used to having it because I wasn’t prepared for was the reaction of others.

Sometimes I have found people see the wheelchair before they see Brody.

And sometimes I’ve felt like I have to justify him having one.

The first time we took Brody out in it I couldn’t have guessed a piece of equipment could attract so many glances.

And whilst in reality sometimes it has been my imagination, you fast get used to people looking and learn to ignore it.

Sometimes it’s the same look that gets thrown your way when you park in a disabled spot by an ignorant passer-by who thinks you don’t have the right to.

The one before they see the wheelchair in your car boot or hear your child makes a noise that suggests that they aren’t a typical 5 year old.

There is a real lack of awareness of invisible disabilities and I think if you don’t have a wheelchair and your disability isn’t immediately visible, you come across a lot of rude people when parking your car in a disabled bay.

Sometimes it’s a child asking their parents about Brody, who mostly in hushed tones tell them to be quiet. I get this.

They are just trying to avoid awkwardness and are worried about being offensive.

Talk to us though.

Honestly no one ever minds polite questions and Brody loves other kids when we’re out and about.

Sometimes it’s a person who just stares…and stares. And I wonder if they realise they’ve been staring for so long or if they’re just incredibly bad-mannered.

Sometimes it’s because we are walking with Brody alongside his wheelchair. You suddenly feel like an Andy and Lou sketch from Little Britain. It’s amazing how many people think that all wheelchair users can’t walk at all.

Brody can walk but he can’t walk distances. His legs tire easily and they give way.

Some days they’ll just give way regardless of whether he has been active or not because he has low muscle tone and hypermobility.

He also has the tendency to refuse to walk and no danger awareness.

So we need the wheelchair for when he can’t or won’t walk because he is too heavy for us to carry him.

This means we need to take it with us everywhere.

At the end of the day a wheelchair just takes a little getting used to. But it’s a must have for us and really helpful.

And of course, the reactions aren’t all bad.

Sometimes, a friendly stranger just wants to say hello to a beautiful face and add a, “Nice wheels”.

I suppose when you first get a wheelchair, or at least when we did, you can feel at times like all eyes are on you and your child. And it can feel uncomfortable.

But the reality is we all look at one another and there are always going to be people who are ignorant to disability or just like to stare – whether you have a wheelchair or not.

So – we’ll just keep on rolling…

Those of us that are, will probably know that pregnancy and infant loss awareness week is coming up and is held annually from 9th – 15th October.

I remember discovering this as I miscarried on 27 September 2013 and the following week I thought it was apt that I should see so many reminders of miscarriage on Facebook.

Whilst some people might find these memes too sob story or self-indulgent, they remind women who have experienced miscarriage that they are not alone, when the experience can make you feel like you have never been more alone.

I miscarried at 8+5. I don’t know why, but I always say 9 weeks as though the added day or 2 will somehow make it sound as significant as it felt at the time.

But I’ve never really discussed it with anyone other than those who knew I was pregnant, which wasn’t many.

I suppose in many ways because I know a lot of people have multiple miscarriages or lose a baby later on in pregnancy. And I can only imagine how hard this is in comparison to my experience. It’s just awful.

I hate the thought of anyone thinking I am somehow comparing my loss to theirs.

I also wonder whether the loss at 8+5 just sounds trivial when said out loud. Even though it wasn’t to me or my other half. I would hate for anyone to think I was talking about it to seek attention.

Even as I type this I am unsure whether I should share my thoughts because it just feels like something I shouldn’t talk about.

The experience will always stay with me and I know lots of other women feel the same. And the sad thing is, there is a woman going through this right now that will really need to talk about it, but won’t.

We all need to vent and talk about the shit things that happen in life. It’s the best kind of therapy. It’s normal to grieve and feel sad, even if you do feel like you just have to get on with it.

And to some extent, it’s comforting to know 1 in 4 women can relate to how you feel.

I fell pregnant quickly – it was the second time round and I somewhat naively didn’t have the same worries that I did when I was pregnant with my first, Brody. I felt like it was meant to be. Both of my sister-in-laws were pregnant. We had just bought a bigger house.

The timing felt right and I felt like things were going our way.

Miscarriage took me by surprise.

Like others, I had the stomach sinking experience of going to the toilet and noticing blood when wiping.

When I later fell pregnant with our daughter, toilet trips were a source of anxiety.

In that moment, up until the very end, I felt sick, full of anxiety and desperate for it not to be happening to me.

We were moving house the next day (brilliant timing, not that there is ever a good time) and when I called the hospital they just told me to phone in the morning if there was any more blood.

I didn’t feel reassured.

I just felt completely helpless and alone.

The next day was a bank holiday (perfect) and we needed to get all of our stuff out of storage before it closed at midday and collect the keys to our house.

My wonderfully sympathetic GP managed to get me an appointment at the hospital and my best friend came along with me to hold my hand (quite literally – forever grateful).

On the way there, I just knew the pregnancy had ended, despite reassurances about bleeding being common.

I felt like I couldn’t stand up – without going into any more detail.

It was horrible.

We went to a room where I was scanned and finally the sonographer uttered those words, “No heartbeat”.

Literally minutes later I had what they refer to as a, ‘complete miscarriage’.

We were taken in to a small room with white walls and leaflets where we sat for hours until a kind woman came in and asked me if I wanted to take my loss home in a pot or if I’d prefer for it to be taken to a place at the crematorium, where there is apparently a plaque for women like me.

I didn’t expect this. At all.

Neither did my best friend.

We cried, I signed a piece of paper and an uncomfortable trip to gynaecology followed.

And then we left. That was it. Emptiness.

I was no longer pregnant. There was no May baby.

My only reminder was a trip back to the hospital at 6.00am a few days later when, to add insult to injury, I developed endometritis in my womb.

I sometimes regret not asking for the scan picture, even though I don’t know what I would have done with it in reality.

Maybe that’s morbid, but I do.

I didn’t want to hear anyone say, “Everything happens for a reason”, “It’ll happen again,” or, “it wasn’t your time”. Sometimes, you just need someone to say, “This is really hard,” and give you a hug.

Because, sometimes, life is hard.

There are photos this week that are popping up on my Facebook, “On this day”, that just bring that week back to me.

One of them is a photo of my son Brody looking up at me from underneath my parent’s kitchen chair.

I remember feeling overwhelmed with sadness that day but looking at him I knew how lucky I was to have him.

And I am.

He was just what I needed.

But you know I won’t ever forget that day. And I know I’m not alone.

*1 in 4 pregnancies ends in miscarriage (Tommy’s)

My son Brody can’t use a toilet and is still in nappies. At 4 years old he is far too big for a baby changing table.

But what’s the alternative?

The toilet floor.

Our car boot.

Going home.

And sadly, we share this dilemma with thousands of other families.

I started campaigning for Changing Places and Space To Change toilets earlier this year, after starting a bigger nappy campaign. I wrote a blog about the issue, which was front page of Mumsnet Bloggers Network and blog of the day on Tots 100.

It appeared on several sites and had thousands of shares. But I’m not telling you this to blow my own trumpet. Not in the slightest. Because trust me, the notes on that trumpet would be completely flat. It really made no difference. What so ever.

For a brief moment I naively thought that perhaps it would help sway some minds. Don’t get me wrong, I didn’t think a simple blog would change the world, but I had thought when starting out campaigning that surely it would be simple to change opinion and perhaps get this issue in the media.

I mean this issue is huge and its 2016!

Surely equality and accessibility is championed these days.

But I was so wrong. And boy do I feel foolish.

I really don’t understand why this issue isn’t newsworthy.

It’s actually quite depressing how little the world cares about accessibility and accessible toilets. There are so many campaigners doing all that they can to encourage and promote Changing Places and Space To Change facilities. They write amazing blogs and articles, they contact businesses near and afar and they shout – constantly – from the rooftops of Facebook and Twitter.

They are a collective force but sadly for some reason it isn’t enough to put an end to this problem. Get the movers and shakers to actually take notice.

Campaigners do all of the things that you could imagine and more. From tweeting celebs who might be able to raise the profile on this issue, like Katie Price (sadly, she’s not listening), to starting petitions that attract thousands of signatures. You name it; they’ve no doubt tried it – at least once.

Every time there is a toilet based issue in the news, campaigners jump on it.

Last week, This Morning did a piece on whether or not it was acceptable for parents to allow their child to use a potty in a restaurant. Regardless of whether this is right or wrong, we took the opportunity to bombard the comments section with why it is unacceptable for disabled children and adults to have no adequate toilet facilities.

We do this kind of thing all.the.time. And we rarely get noticed. If we do, it’s no doubt by our Facebook friends who are unaffected by the issue and who quite possibly roll their eyes us whilst muttering “give it up!”

But we can’t give up. This is very much our reality. And we need the world to change.

We do this for our loved ones because it’s an appalling position for them to be in. And they don’t have the voice to shout about the injustice of it all. As their parents and carers you better believe we will fight for them – and for others too.

This isn’t right. It’s not fair.

How is it okay for society to think that it’s acceptable for me to change Brody on a toilet floor covered in over 77,000 germs?

Maybe some people agree that it isn’t, but it doesn’t affect them so they carry on with an out of sight, out of mind attitude. Maybe it’s because there is a (relatively small in the grand scheme of things) financial cost to my sons needs and he isn’t worth that much to them.

Campaigning is an uphill battle and I am so grateful to everyone who takes the time to do it.

To my campaigning friends – thank you.

To everyone who campaigns – thank you.

It’s so sad that this – a basic human right and something people should be able to do with dignity – is something we actually have to fight for.

If you are reading this please help us campaign. There are so many ways that you can. You can sign this petition. You can share this blog or any other blogs that you read about accessible disabled toilets. You can tell businesses about this problem and ask them to consider installing these facilities – there is never any harm in asking! Maybe you will make all the difference.

Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have (Margaret Mead). 

For more information about Space to Change toilets click here.

For more information about Changing Place toilets click here.

But in the same speed in which they can bring happiness, they can also cause hurt and damage – even when mindlessly spoken.

I was scrolling through my Facebook newsfeed recently when I came across an old school friend who had posted a derogatory meme of someone with Down’s Syndrome, which had a comment supposedly meant to be funny.

A few “likes”.

Some laughter emoticons in the comments box.

Me sat wondering how I should respond, whilst fighting the urge to throw some choice swear words around (I resisted).

It was Martin Luther King who said,

‘There is nothing in the world more dangerous than sincere ignorance and conscientious stupidity.’

He hit the nail on the head with that one.

A glutton for punishment, I clicked through to the page from which it was shared and it was full of memes mocking disabled adults and children.

I reported it to Facebook to then later receive a report back telling me that it “doesn’t violate their community standards”.

Head. Wall. Bang. Really?

I am the first to admit when I was growing up I heard derogatory terms at school and I never gave them much thought. I later heard them in the work place too. And I didn’t really care.

I was obliviously oblivious. Naïve. Foolish.

I didn’t think about the impact these words have.

I didn’t think about their meaning.

I’m ashamed to say that I only really gave it thought when the offensive words affected me and someone I love more than life itself.

My child.

Sadly, too many people don’t think about the words that they are using. Sometimes they simply don’t care.

Disability doesn’t affect them and they are just plain ignorant. Sometimes the words roll off of their tongue with no real thought as to who they are actually ridiculing.

These people forget that disability can affect any body at any time in their life. That tomorrow their mother, father, siblings or children could become disabled.

That these words could turn around and hurt them.

We live in a world where in 2015 an egotistical celebrity named Kanye West – sadly also somewhat influential, particularly to young minds – can release a single where he can be heard rapping “Then I heard you was talkin’ trash, hold me back I’m ‘bout to spaz” (Four Five Seconds with Paul McCartney and Rihanna).

Do radio stations or television channels ban Kanye’s song? Nope. Does society by large really even care? They probably didn’t even notice.

We live in a world where in 2016 Emmerdale writers thought it wouldn’t cause any offence if one drunken character said to another “You can’t go around like that, all cocked. You look like you’ve got that, what is it? Himi, Hemi, Hemiplegia“.

A brief moment of media attention ensued – unbelievably, one newspaper even had a poll to check that this really was offensive – before an apology from the programmes producers was issued.

I am always unsure how to handle myself in situations where I’m faced with language intended to ridicule disability. Assuming I resist the urge to swear…

Do I try and educate them?

Do I just delete them from my life or Facebook?

Would they really care if I told them that these words offend me and make fun of people like my innocent, beautiful child?

It especially stings when it is someone who knows our situation and, therefore, should at the very least have the common sense to think before using the words in front of me.

But they don’t.

I’m then met with, “But I don’t think about Brody when I say it,” or, “But Brody isn’t like that.” Because they don’t see the disability, they see Brody. Just as they should.

And therein lies the truth. People are people. This is just how every disabled person should be viewed – as themselves.

People are not defined by their disabilities.

And they shouldn’t be ridiculed for them.

We are helicopter parents (of the worn out, frazzled variety).

As he gets older, this danger awareness thing – well, to be honest it just gets more frightening.

He is taller and stronger and physically trying to prevent him from hurting himself – intentionally or unintentionally – can be really hard.

Cognitively, Brody just doesn’t understand.

He has no fear.  He has a high pain threshold and is clumsy due to his mobility problems.

Danger is everywhere.

The front door is always locked.

Cups of tea are put up high (very high – he can now reach the mantelpiece).

Stair gates are permanently shut – not only on the stairs, but the kitchen and utility room doorways too.

Cupboards that have dangerous products in them are locked, as are bathroom doors.

The TV and bedroom drawers are strapped to the walls.

We have foam padding on his bed, as he often knocks his head off of it.

He has a specialist five point harness car seat to keep him safe on car journeys as he pulls his arms under a regular seatbelt.

The list – it’s endless.

But for other people that don’t live in our world, it’s hard to understand.

My 17 month old daughter Sydney has a better awareness of danger than her four and a half year old brother.

It can be draining. It’s a never ending worry. A permanent weight on our minds.

When people come over, we have to work doubly hard to make sure that things aren’t left open or unlocked.

If we’re at someone else’s house – well, we just try to avoid going if I’m completely honest!

It prevents us from going out and makes me feel like a stuck at home parent a lot of the time.

I feel like we can only relax at home. Or when Brody is at his fantastic nursery, where the staff thankfully just ‘get it’.

This problem is at the forefront of my mind at the moment as it has been highlighted tenfold recently whilst on holiday away from our home.

At the beach, Brody will constantly try and crawl or walk into the sea. He won’t stand and paddle. And he’s determined to get in, even when you’re holding his hand.

At the parks we visited, he can’t climb ladders on slides so my partner carries him up.

I hate it though because he scares the life out of me!

One day when they were nearly at the top of the ladder, he was bending and arching backwards (one of his favourite past times).

And when he comes down the slide, we’re hovering half way down and at the bottom to make sure he doesn’t fall somehow. I almost hate going to the park with Brody and that makes me so sad.

He is just physically unable to do a lot of things and on the things we can put him on, he just frightens me so much.

Who knew slides and roundabouts could be so terrifying? And why do the activity frames with slides always have lots of open ends with huge drops?

When he is in hospital, doctors and nurses don’t always get it either.

He is too big for cots and those high up beds on hard floors? Nope. Nope. NOPE!

So what we do, depending on which hospital we are in, is put him on the parent camp bed or ask if we can just have the bed mattress on the floor.  We always pray that we can somehow have a room so that we can shut the door, otherwise we just don’t sleep.

We couldn’t trust him to be safe in a large ward room with open doors and other beds and equipment.

When I took him to nursery this morning, I thought I would see if he would maybe now stand by the car on our driveway whilst I put his younger sister in her car seat. Bad idea.

He ran (in his own unique way) off into the road before I could get her strapped in.

What I normally do is form a barrier between me him and the car, so I can get her in to her seat and keep him next to me.

She’s getting to an age where I hope she’ll be able to stand and wait soon thankfully.

When we arrive somewhere, I have to get him out first though, because I can’t carry her and help him out of the car at the same time.

It’s a simple thing that’s difficult.

It’s just all day, every day and it’s something we have to live with. But it’s hard.

I think strangers and even some of our friends and family might think we’re nuts!

I suppose it’s difficult for them to comprehend how vulnerable he is. He just doesn’t get it. They just don’t get it. And it terrifies me.