She is part of Ethan’s care team.

She always asks me one question “How are you coping?” And for some reason I tell her the truth.

It’s a much harder question to answer lately and I lie a lot.

That’s the truth. I lie every time someone asks me that question but with her I just blurt out how I am ‘coping’ that day, that minute or that hour.

I thought I was accepting of our future but it turns out, no matter how much I thought I was prepared…I am just clinging onto the cliff’s edge with bitten down fingernails; trust me that isn’t easy, but I’ve no choice.

There isn’t a team of support waiting for me or my family.

There isn’t even a bit of home help- zilch, nada, none.

What is home help? Well, I am unsure.

From what I’ve read by other parents, it’s when a professional,( nurse or carer) comes into my home and helps me- helps me care for Ethan, so I can cook a dinner safely, so I can engage with my two younger sons, so I can go to the toilet; yes folks, it is that hard right now, that I have to trust my 11 year old to watch Ethan so I can use the toilet.

As for respite; well whoever makes decisions regarding that little bit of support should really come visit me and my three kids on an average afternoon and sit down and explain to me why a child whose needs increase as his syndrome progresses gets less and less respite – I would really love the opportunity to have a chat about that with the minister for health or whoever the heck it is that makes these ridiculous decisions!

Those who work with Ethan know that I value them and that I have nothing but respect for them but the system is flawed.

The system they are forced to work with and the system I am forced to rely on. It is so horribly flawed that I cannot sit by and say nothing about it.

I am not just talking about respite here, I mean the whole HSE system designed to help families like ours – designed by who?

I don’t know. I have absolutely no clue who designed this system but I am pretty sure not one family raising a child with any form of a disability were asked for their input.

For example; I know of many families who have fantastic supports, whose children get day services, respite , home help and the therapies they need – I know these families need this.

I know first hand how much, but what I don’t understand is why our government don’t give the same if not more supports to families like mine.

Families that have to sit back and watch a condition ravish their child and attack their whole family bit by bit until we become so broken and worn down by the system that depression is the most common outcome, along with divorce, not to mention what it will do to our other children as they watch their sibling wither away.

Where is our support? Where is our help?

Are we, the mere parents, who are simply human, expected to deal with the slow death of a child and all the emotional trauma our other children will no doubt have, then try to look after our broken hearts while ‘coping’ with bills, shopping, schools, housework…life!

Without any support from a government who heavily relies on the strength of a parent’s love to keep us caring and in turn saves the state a small fortune while they pay us pittance and even tax us on it?!

Ethan is changing. Doctors have no idea how to help.

We are in limbo and we are praying for a little light to shine down on him just so we can see him smile and laugh again. It has been the worst few months of our life.

We have to believe that along with his team of doctors and specialist that we can find that goddamn light . We are hopeful that Ethan will stabilise again.

What I have learned over the past few months is that there isn’t help or support ready and available to families like ours. There just isn’t. We’ve to ‘cope’.

There are however, waiting lists.

Waiting lists and some more waiting lists.

There are budget issues too as always and of course staffing issues.

When you’re a parent like me, one that has no choice but to ‘cope’ , we really don’t give a fiddlers about lists and budgets …we know we are worth our weight in gold to our government’s budget , we know how much we save the state…

Bitterness is something that can eat me up; sometimes I let it, other times I do my best to push it aside.

Parents like me are living a life no parent should ever have to ; yet we are forced to fight for what our children and our families need in order to help us ‘cope’ – our lives are harder than the average families that is a fact; shouldn’t getting help be something that just comes when the words ‘terminal ill’ appear on any form? (of the millions we’ve to fill out!)

I haven’t got the time or energy to feel all this bitterness, but here I am writing about how bitter not just Hunter Syndrome has made me (it’s definitely played its part) but how our government has ensured I feel bitter.

We are used and abused by their idea of services and supports – no one has asked families like mine “what is it the government should be doing?”.

They seem to forget that they are our babies, not someone we ‘care’ for, we didn’t chose this, we are not trained in any way shape or form, but we are here doing all this because they are our babies- they are our lives all we need is some accessible services, practical help and support for us, our other children and for our child who is fighting daily to smile.

A lot has changed but yet here I am still talking about the shite that doesn’t ever change despite your circumstances.

Our government need to do better.

Our government need to acknowledge the different types of Carers on this small island.

But I am just as determined as I was when I set mine and am not going to be ditching it any time soon.  In fact, I’d like to invite you to join me!

You see my New Year’s Resolution was to make a change to as many people’s lives as I can.

That might sound a bit big and scary, but it’s simple really.

I just want to change attitudes and educate people about something very important so that they will make changes for as many people as possible.

How I intend to do that is by making sure as many people as possible know about the heart-breaking situation that my son and 1 in 260 other people are facing every single time they leave the safety of their own home, and I hope that by people knowing about it they will help me to make a change.

The situation I am talking about is my son being stripped of his dignity, having his health compromised and facing public humiliation every time he needs the toilet when he goes out with us.

You see my son is severely disabled, but that’s not the most important thing you need to know about him.

You should also know his name is William, he is almost 8, he loves reading books, enjoys swimming and finds the noise of someone walking on gravel hilarious!

His favourite joke is “how do you ask a cow to get out of the way? – Mooo-ve over” and he loves eating the froth off his Dads cappuccino!

But when we leave our house, those things are ignored.  He becomes a disabled person.

But more than that, he becomes a disabled person who society hasn’t considered or catered for.

His disability is so severe he cannot stand up.  He can’t sit up unless he has support. He can’t use his arms and he can’t talk.

Add all those things up and you soon realise one thing that is really difficult for him, is to tell us when he needs the toilet, but he is so determined to try and let us know!

Not only that, it’s very difficult for him to use a toilet when he’s not at home because he can’t stand up to pull his trousers down.

He can’t stand up to get onto the toilet.  He can’t use his arms to support himself when he’s sitting on the toilet and he certainly can’t wipe himself when he’s finished.

I’m sorry to break it down to these most basic of terms but unless I do that people just don’t understand the full implications of what happens when William needs a wee.

At home, he has a hoist to help lift him onto a safe and clean changing bench where he can lay while we remove his clothes.  His hoist can lift him from there onto the toilet and back again.  He can lay safely whilst he is wiped and re-dressed and he can then be hoisted back into his chair.

But what about when we leave the house?  Have you seen a hoist in a disabled toilet?  Have you seen a large changing bench in there?

Remember he is 7 so he can’t fit on the baby changing table.

What do you think are his options when we are out?  When he is in our local supermarket café being treated to the froth on his Dads cappuccino?  When we are in a library choosing a book? When he is in the town picking some new swimming trunks?

He has 3 delightful options to choose from:

1.  Lay on the toilet floor (if someone can help me lift him)

2. Lay in the back of the van (if someone can help me lift him)

3. Go home

Which would you pick?

There is a simple solution, and my New Year’s resolution is to tell as many people as possible about it!

Changing Places or Space to Change toilets provide the hoist and large changing table that would mean the difference between going home or staying out for the rest of the day.

Changing Places change lives, and that’s not an exaggeration.

Williams life would change immeasurably, he would be able to visit so many more places and stay there for as long as he wanted.  Family life would change as we would no longer have to cut our days out short, ditch a trolley full of shopping or make excuses to friends for not accepting invitations to events.

The lives of well over ¼ million people would change, they would feel welcome in their communities.

They would be able to go shopping, visit a cinema, go swimming, or visit a holiday park.  They’d be able to visit friends in hospital, or attend a doctor’s appointment, visit the library, or have a day out at a theme park.

All things we do without any thought or care for what might happen if we need a pee!

If these facilities were everywhere we would be able to concentrate on ensuring William has fun, gets to visit places other kids his age go to and we’d be able to do the things other families do.  We’d have a life that isn’t time or location restricted.

So if you have already ditched your New Year’s Resolution, or if you fancy adding another one, resolve to tell as many people as you can about how the addition of two simple bits of equipment can change a life.

Maybe you could ask your MP or local supermarket if they know about this issue and if they’re willing to help make a change for William and other people in his situation.

You could also sign this petition: https://petition.parliament.uk/petitions/177423

Kids, eh… they count presents and if the toddler has five, they kind of expect five too.

Kids won’t be kids for long, so yes, I try to ensure my boys have all the same amount of presents to open.

I bought it for my middle guy, J who is eleven.

I bought it because I thought it would be something that could help him build up his concentration level. J has ADHD.

I also bought it because it was ten euro and I figured it was great value.

It started St. Stephen’s night, he came down the stairs and asked me if I’d like to have a turn at his new game.

My answer would determine what I would be doing over the next three weeks of the never ending Christmas holiday.

I became addicted.

Every spare minute I had, I had to figure the game out. I had to.

I have no idea what came over me but I was not alone.

D, my darling husband had to have a turn once he came home from work. An unspoken competition between the pair of us began – Who would crack it first ?

When the game was left unaided (due to the lots of stuff one must do during the long days) the toddler (age three) would take it apart and make a house; which would catapult me into a panic of ‘count the pieces , don’t lose any for the love of the game, don’t lose any’ – I know, I know…I sound like a complete addict …perhaps that’s exactly what I was.

Ethan took a shine to it too, he has shown very little interest in anything lately so when he picked it up and began stacking it …I let him.

My addiction subsided and I watched and ducked as he played, chewed and threw pieces of it all over the room.

I am no saint; I had J picking up the pieces and counting them each time Ethan threw some.

For something that was bought on a whim and as a stocking filler, it was really giving us some good quality family time as we’d sit around the table taking turns, trying to solve it. And I have to say, it was nice to see J with it instead of a being hooked up to a computer screen playing a game .

It did remind me of my own childhood and the fun / competition board games brought to our family of nine.

So the game- well it is so simple, you are bound to laugh at me and that’s OK – I needed a distraction and here it was in all its plastic glory.

It’s called Cube and all you have to do is use the 13 pieces to make a cube, simple? No, no it isn’t.

According to the box there are 19,186 solutions and it’s for ages 8 and up, I know I should be embarrassed but I’m not, I can’t even find one solution!

J hasn’t solved it; but it has kept him interested, competitive and even helped create a little J and mammy time, which is something we both benefit from.

D hasn’t solved it.

My parents haven’t solved it.

My brothers and sisters haven’t solved it.

Our friends haven’t solved it …my point is, it isn’t just me who can’t solve it!

So if you’re looking for something for all the family and I mean all the family, a ten euro toy called Cube comes highly recommended from me and my family – it’s still unsolved and we are still trying hard to solve it.

19,186 solutions…

I just need to find one.

We are happy and comfortable to read about the lives of people we went to school with while in reality we would hardly speak to them if we met them in a supermarket.

We seem desperate to know that other’s lives are either similar to ours or worse in order to make us feel better.

People are even more curious about families with special needs children.

Some see parents of such children as somehow deserving of some sort of sainthood (many of them are!) and they seem to assume we never get frustrated at our children and our homes are organised and beautiful..after all we are home all day!

I am about to shatter all that by giving you a tour of my home!

I have two children with additional support needs. I am a full time unpaid carer surviving on as much sleep in one week as you get in one night!  This is my home, my workplace, my holiday location, my therapy clinic and my meeting room.

Welcome.

The first thing you may notice is my garden is very mundane. I can’t afford a gardener and just getting time to cut the grass alone is impossible.

Like so many things it just isn’t priority any more.

Before you reach my front door you will see extra railing and supports. I can not tell you how long I had to fight for those. It does make it ‘obvious’ my children have extra needs but I assure you I don’t ask for that extra attention.

My family attracts enough attention already!

The pile of shoes in the porch may be more than you think is needed for just four residents. Sensory issues mean my daughter goes through footwear like others eat hot meals!

Even if one pair fitted great yesterday today they are now too tight, too cold, too hard, or too small! If we want to leave the house she needs something she will wear and this can take a while to find!

There are many odd shoes there too. Her brother has thrown many out of the car in protest and one day when I have nothing else to do (that might be a while away yet!) I will sort through them.

Most people learn to just walk on by. Actually many walk on by US in life too.

Welcome to my lounge. Lines of toys on the floor is normal here; as are boxes of toys.

My children need supervised at ALL times so playing in their room is not an option when they have seizures, eat everything and throw things constantly.

I honestly have no idea when we last decorated. We don’t do change and pictures cover any marks.

That fresh smell of air-freshener disguises the latest round of smearing or the last meal I burnt when the children needed me. The blinds are permanently closed as otherwise we have continuous non stop screaming due to open doors.

Welcome to the noise of you tube, flapping, and screaming, all drowned out with the sound of the same button on an electric toy pressed continually for the last hour.

It gives you a headache? This is my permanent state of affairs most days!

My kitchen is some sort of cross between a laundrette and an eat as much as you like buffet. When your child is so distressed by the noise of the washing machine he turns it off every time you turn it on..the laundry soon mounts up!

When your other child is so restricted with what they will eat you have to sometimes prepare three meals before they will even take a bite..the plates of food soon mount up.

The stair case has two hand rails.When one of your children has no sight in one eye you have to ensure they can see the bannister when they go up AND down.

The bathroom…oh dear, the bathroom! Water attracts my children like some powerful magnetic force.

Yet it must NEVER EVER touch their hair!

For children who are yet to master potty training they seem to have a strange fascination with the toilet. I could write a book about all the things I have fished out of the bowl so far!

Talc is another sensory experience they seem to love…yet never on their skin! The smallest room can be the most difficult to keep tidy!

The bedrooms are locked. They have to be.

My son has ‘fed’ his sister’s fish too many times now…nappy cream, plastic trains, entire tubs of fish food, and a hairbrush being his last attempt!

My non verbal son climbs on windowsills but has no concept of safety.

He smears. He strips off…and he throws everything everywhere.

You may be coming to meet with me, but bear in mind this isn’t a clinic or a private meeting room.

This is real life!

This is my home. This is where we hug, we cry and we learn together.

Life is messy, loud and complicated. My home reflects that.

I hope you enjoyed your tour. You are no doubt ready to rest and return to your normal.

This is my normal. This is home.

This is life with special needs children.

Firstly, I am not a wheelchair user so I don’t have too much of a right to discuss this issue with any degree of authority.

Secondly, every person (yes including those who require a wheelchair) are all different.

However, to completely contradict myself, I do have a few little bugbears I wanted to share with you all. I am sure you will relate to some if not all of them.

My days heavily feature a wheelchair, in fact it is probably one of my most repeated words these days, a long with stoma site, feeding pump, syringe, and all sorts of unexpected classics.

Recently Amy and I enjoyed a day out at a local soft play centre. It was SO busy. School holidays, nearing end of term… it was inevitable.

What WERE we thinking? In addition to this the two friends we had with us who also have a disability.

We arrived equipment galore, ready to take over a large area of space within the already cramped to capacity building.

Within seconds of arriving I got that sensation of grief and anger in my heart when I noticed that three of the four blue badge disabled bays were occupied by people who did NOT have a badge displayed nor did they have someone with them who has a disability.

This is the perfect way to absolutely enrage me and on some days can take over my mood for the day.

Who ARE these people? How can they be so utterly selfish?

I appreciate that yes the car park was very full. But a disabled bay is not a “there is nowhere else to park” bay, nor is it a “I want to park near the door because it’s raining and I’m lazy” bay.

If it was it would say so. I was getting Amy’s wheelchair assembled and as I did so an elderly lady drove in disappointed she could not park in the bay that she needed.

She did after all have a valid blue badge and also a mobility aid. I raged into the soft play centre and reported all three cars.

The tannoy came on and I felt that justice had sort of been served. I saw one lady get into her range rover with her three able bodied children who all leapt with ease into the car with no assistance needed whatsoever.

Imagine my consternation when I was queuing later on (still reeling from the parking episode) for a drink… when a lady decided it was perfectly okay to MOVE my child who was strapped into her wheelchair as if she were a piece of furniture.

EXCUSE ME lady, I do not pick up your child and place them elsewhere when they are in my way.

In fact, I was most likely protecting my child’s life as yours ran round the sensory room they were too old for not looking where they were going whilst you were not supervising them in a different area of the building.

I know there may be some people who do not agree with this, but I firmly believe that wherever Amy and her chair are situated… unless she wants to move, or we actually NEED to move, then leave us be!

If the lady had squeezed past doing an awkward smile and saying “sorry” like I probably would have.. then fine. Or if she had “sorry would you mind if I just squeezed past” we would have politely adhered.

It was the fact she pretty much lifted the chair up and shoved it with force elsewhere.

To some it may have looked like a simple manoeuvre.. but to me, through my militant special needs mum eyes… I saw it as a dinosaur viciously attacking an unhatched dinosaur egg.

Without this post turning into some kind of rant (which I think may already have happened!) I also dislike when people talk to Amy but look at me.My personal view is that a wheelchair is an extension of Amy. It is her equipment that enables her to access (or not access, grr) the world around her.

To lean on it, or to move it out of the way is deeply disrespectful to me. Her wheelchair is not a post or fence to lean on whilst chatting to a friend, it is not a prop that can just be moved out of my way.

My daughter is not in your way… you need to alter your route and adapt a new way of thinking.

I am just her humble carer… this girl thrives on interaction.

Speak to her, do silly voices, sing, ask for high fives. Don’t feel silly when she doesn’t respond “typically”.

She may look away, or appear like she is ignoring you, she may leave you hanging… she most certainly won’t respond with words. But it doesn’t matter.

I know it must be daunting for some people whose lives don’t really feature much disability. But trust me, even if you seem awkward or feel silly… whatever you do is better than staring or being rude.

We know how hard you are trying and we know you are scared of doing the wrong thing.

If you don’t park in disabled bays wrongly, don’t move my child like furniture, and make an effort to treat us like real people – we will love it. We will probably even go home and tell our close ones about it and how included it made us all feel.

My favourite anecdotes are usually people who enraged me, or people who I feel really tried to make us just feel normal and included.

The people who tut at us in small shops because the wheelchair blocks the aisle – you are not our favourite. You are one unfortunate event away from a wheelchair being a huge part of your life too.

Everyone is.

This isn’t a threat, it is a reality.

The people who fall over themselves fumbling about to move chairs in a cafe so we can fit in with Amy’s tractor (sorry wheelchair.

A bus driver genuinely referred to her chair being like a tractor once) are people we admire and remember.

We often perform extensive feng shui when arriving in such places and we thank you for joining us with that.

The people who insist Amy’s wheelchair is a pram and won’t accept it at all… you are the same people who ask me “how do they KNOW she can’t see properly though when she’s this small?!”… Follow us round for a week, you’ll soon see the world through our eyes!

Wheelchairs are getting smaller and smaller these days to accommodate children with significant postural support needs – it’s a great thing.

There will be parents who walked this path decades before me who will be in awe of the work of Firefly with their Goto Seats and simple yet life changing bits of equipment you’d never even think necessary until in our position. (Don’t worry, I’m not about to start my why special needs parents are ingenuity are at one ramble… I will save that for another day)

The people who say, “WOW COOL WHEELS!”You are one of my favourites.

You understand the merits and freedom this piece of kit brings to our lives.

You aren’t one of those antiquated people who would say “suffers” from cerebral palsy, or “confined to” a wheelchair. You are new age and nice, and yes, she does have cool wheels.

I can’t wait until she has the more “typical” looking wheelchair so we can buy those big round circle things customised for her (I don’t know the real word for it. Wheel covers?).

You’re probably also the same people who talk directly to Amy and say “Hey, I love your wheels! What’s your name?”… you probably know she can’t reply but this doesn’t stop you, so I will respond “her name is Amy-Rose. Are you going to wave and say hi Amy?”… and it’s all very nice and inclusive how I want it to be.

I will leave this here. Please get in touch with your likes and dislikes and any experiences you’ve had when out and about. I do love a good story.