Every little girl deserves the opportunity to attend a Daddy-Daughter dance.

Every father deserves the chance to proudly escort his daughter to such a special event.

Thinking of all the experiences and “typical” childhood moments that my own daughter misses out on, one day a notion hit me like a ton of bricks. Disability should NEVER rob ANY child of meaningful, memorable life experiences.

Disability should never be allowed to steal anyone’s joy.

Longing for inclusion for my daughter and my husband, feeling heartache for the things they’ll miss out on, an idea sparked. “What if there was a way to create such an opportunity for children with special needs and their parents?”

Realizing that this would be a huge undertaking, I reached out to a friend with a generous heart, who works within the special needs community.

She jumped right on board and brought a plethora of ideas with her! A mere spark quickly ignited into hundreds of Pinterest boards, text message exchanges and planning meetings.

Others having a heart to serve reached out to us. We beseeched support from our community and secured and organized volunteers.

To our delight, our concept was widely embraced. Quickly, our vision was beautifully unfolding before our eyes.

Every detail of accommodating children with special needs and their parents was taken into consideration. “Sensory-friendly” was not a term to be taken lightly, in any aspect.

Three months after the initial meeting with my thoughtful and creative friend over coffee at Starbucks, our vision was brought to life. Our whimsical “Butterfly Ball” was now a reality for families like mine.

Words can’t express the feeling of watching the hours of tireless work and planning transformed into something so magical.

Seeing parents dancing with their children in wheelchairs, having family photos taken in their fancy attire, and enjoying an evening JUST FOR THEM, was exhilarating.

Knowing that they could relax, have fun, let go and feel comfortable in an environment of acceptance and understanding was heart-warming.

As my own husband and daughter entered the ballroom, both elegantly dressed in purple, my heart overflowed with joy.

Watching him pick her up from her wheelchair and seeing her experiencing with him what I had desperately wished for, took my breath away.

She looked so beautiful, and he was so very handsome. They were attending their first Daddy-Daughter dance. Nothing could take away the sheer wonder of their evening out together.

It was a moment in time that I will never, ever forget. That picture-perfect scene is forever etched in my memory.

As parents of children with special needs, we wish for our children to live their very best lives.

We yearn to give them the moon and the stars, just as all parents do for their children. I

’m forever grateful to a dear friend with a heart of gold…and all the helpers that shared in our aspiration.

You created an invaluable gift for families that are often left out; families that are often spectators watching from the sidelines.…You INCLUDED us, giving us the most precious moment in time.

 

Now I’m not saying that we exist in some sort of alternate reality, but what I am saying is that you can take almost everything you thought you knew about raising a child – and subvert that.

There are so many times everyday where I think to myself “this is not what I expected” or “this is the opposite of what other families do.”

Think of all of the cliches you were told whilst pregnant. “Get used to the idea of lots of nappy changes!!”, “your washing machine will never stop!” down to “it gets easier when they move onto solids and start to be able to feed themselves.

Or “after a while they start to sleep better at night.” Nope, nope and nope, 5 years on and the rules don’t apply here, it’s like we are trapped in time except for the fact my “baby” has become a lot bigger!

Nappies are still a daily thing, in fact they’re everywhere. I could build a nappy castle!! We get delivered a 4 month supply each time and have to feverishly try and squash 28 packs of nappies in every nook and crevice around the house. Free insulation you could call it.

Sleeping through at night? Nope! We have melatonin and valium, enough to make me sleep for a month and yet here we are, awake excited child wanting to play all night.

People use that term “it takes a village to raise a child.” I’ve lost count of how many times I’ve wished I could clone myself in order to meet my daughter’s basic care needs.

It takes multiple hospitals, specialists, carers, nurses, doctors, drivers, assistants and so on – and even then you can feel the purse strings of the “system” wanting to cut services and provisions.

We are lucky to have what we have, yet with all the help in the world, this still is far from plain sailing.

Struggling for money? Then get a job. That’s what the world says.

But here the rules don’t apply. How on earth can I get a job that fits around school hours and doesn’t mind that I may need to constantly say I can’t come in due to x, y and z reason.

If I could secure a job – where does she go in the holidays? Nowhere can medically accommodate her care needs, or provide hoists.

I recently saw an article about a place of work providing a creche for both during work hours and also so parents can use the on site gym. The rules don’t apply to parents like us.

I see so many things and think “wow that’s good, but doesn’t apply to us.” The truth is that people who need help the most are the ones left in fighting but left with nothing.

I know there isn’t an easy solution, it’s a complex issue, but it seems our children and also ourselves are left excluded in so many situations.

A local café recently had a renovation and announced a re-opening party. “Oh wow that’s nice, we could all go as a family.”

I message them on social media to check there is wheelchair access. Was there? Nope. Everyone is welcome, except you sorry, the rules don’t apply to you, you are an inconvenience and an afterthought and we don’t care you can’t come.

That’s not how their reply was worded, but it’s how it feels. Sure, we could carry her wheelchair up the steps to get in, but we shouldn’t have to and it isn’t fair.

It makes you not want to try.

The most frustrating rule in our world that doesn’t apply, and I’ll mention it every time… toileting facilities!!

There are places that are legally required to provide toilets. But the law does not dictate to provide toilets for EVERYONE but only for people who are able bodied.

If lucky enough to have a disabled toilet – you are expected to transfer yourself with only the aid of a grab rail. Because the rules don’t apply here.

If you need a hoist and lots of space for your wheelchair and equipment, this is apparently not the place for you.

Thankfully there are lots of people campaigning for better provisions for people who need changing places and I hope that one day it becomes a law that they are provided in certain places.

One rule that does apply but not work in our favour is that specialist equipment seems to have to cost a lot more than what seems reasonable.

What may appear to be a 50p dog toy in a pet shop, is at a disability convention priced at £12 and labelled “cognitive development tactile rubber ball.”

The level of exploitation is staggering.

Why develop things to help people and then force them to pay so much more when so many aren’t in a position to afford such things due to not being able to work?!

I am thankful that there are companies like Firefly that actually sell things affordably. It would be easy for them to see what they provide and charge several times more for it knowing OT’s will somehow find the funds.

Got a headache? Take a paracetamol the world would say. Swollen ankle? Ibuprofen will sort out that swelling my friend.

Got epilepsy? Well, let’s try x amount of medications with varying horrific side effects only to be met with a whole new set of challenges. Dystonia? Let’s try various medications again, with horrendous side effects and we can tweak doses and hope that the benefits outweigh the lousy side effects.

The rules don’t apply with our kids and medicine. Their issues are so unique and complex that there is no obvious or simple fix. Nothing with them seems to be an exact science – this isn’t the fault of anyone, it just is how it is.

These are the rules and we have to accept them.

“This medicine might make her sleepy” I’ve been told.. secretly hoping that we will get a better nights sleep.

Only to then be met with entire nights of insomnia from my child! You can read the common side effects and assume that the opposite will happen, because the rules don’t apply here.

Ah, caught a common cold? Keep hydrated, rest and you’ll be better soon. You guessed it – the rules don’t apply here.

Cue aspiration, nebulisers, suction, ambulances, trips to resus, IVs, antibiotics, chest physio. Things here are not done in half measures.

The advice on the NHS site doesn’t apply, you’ll watch your child like a hawk, noting every seizure, every spike in temps, every cough in the night will send you running like an athlete and grabbing a suction catheter quicker than you can say bradycardickangaroopyjamas.

Family day out? Maybe pack a change of clothes for the child, sun cream and some snacks and drink. Oh no, not here. A trip to a garden centre will look like a weekend away for a family of 5.

People will joke as you become trapped in doorways by your copious amounts of baggage. “Do you really need all of those bags?” Yes, yes we do. We have more in the car too don’t you know.

Doesn’t everyone take a suction machine, nebuliser, feeding pump, changing bag and a meds bag out with them to the shops?

These are just a few examples of rules not applying. The one that makes me feel guilty is that 100% of the time my child gets her iPad when she wants, she gets to leave the room or table if she wants, she gets anything she wants and needs.

She’s so loud and quick to become distressed, it’s hard to read her wants and needs, she can’t express them like other children her age.

So we go with the flow and have our own set of rules. She is a child like any other, and I know children thrive on routine.

But routine is something very hard to adhere to in our world. We always expect the unexpected and we deal with the cards we are dealt and they are dealt.

In some ways it makes us a better person. We are more patient, more prepared, more understanding. But it comes at a cost. It’s exhausting, frustrating, and unrelenting.

There are rules I wish didn’t apply. So many in fact.

It makes you see that whilst the world is starting to become more aware, we still have so much work to do to gain the understanding of others, and to get the adaptations and services we need.

When you become the parent of a child with complex medical diagnoses, the chances are you also gain a free pass to your nearest hospital several times a year.

At least, that’s what appears to have happened in our case.

Jaxon is 263 days old. He’s spent a total of 115 days of his short life in hospital.

We’re currently in the middle of our third admission with no sign of going home. Over 40% of his life has been spent in hospital.

I brought Jaxon into hospital just over seven weeks ago due to an increase in suspicious movements and concerns that he was experiencing Infantile Spasms.

We were awaiting results of an EEG from two weeks previous and I was worried that the spasms were increasing in both frequency and duration.

Upon showing the doctors the videos I’d gathered of his movements, my concerns were validated and we were subsequently admitted. We were ushered into a cubicle and the camp bed that would be where I would sleep for the coming days was propped against the wall.

Now over seven weeks on we are still here, despite his seizures being better controlled than they were and the spasms stopping.

We’re now here for feeding issues as Jaxon has never been able to really tolerate his feeds, only I’m not sure his medical team every truly realised how bad it was.

Jaxon is NG fed and currently on a four hour on, two hour off feeding regime four times a day which means he has to be fed through the night.

Something that isn’t safe for us to do at home until he has a gastrostomy which is scheduled for this week.

I feel like I’ve almost forgotten what it’s like to live at home. What I do know though is that I miss it terribly.

I miss the home comforts I take for granted on a regular day spent at home. I miss my bed and my quilt.

The hospital blanket is rough and uncomfortable. There’s a draft that comes through the window so I get cold quickly at night time.

I miss having a cup of coffee in front of the TV. If I want a hot drink here I have to go to the parents room as they’re not allowed to be brought onto the ward.

I miss cooked food. I’ve lived on sandwiches and salads since being here. The TV goes off at 7pm until the following morning so when our visitors have left for the evening I sit in silence.

Only it’s not silent, far from it in fact.

It’s a hospital so silence doesn’t exist. Despite being in a cubicle there’s still plenty going on outside which means it’s never really quiet.

There’s always nurses chatting or machines beeping, doors opening and closing or trolleys being pushed down the corridor.

I miss lying in bed and hearing nothing but the rain fall or sitting on the sofa, still, enveloped in complete quietness.

Well meaning friends and family want to visit but I feel as if I’m constantly surrounded by people. I don’t want to upset them by saying no but sometimes I’m just too tired of talking.

I don’t have the energy to hold one more conversation. I’m always talking to people it seems and there’s new faces on the ward and in our room each and every day.

The nurses and doctors see so many patients and their families each day that it would be impossible for them to remember the names of everybody. So to every nurse and doctor I’m “Mum”. It’s like a complete loss of identity.

No longer Em, Emz or Emsky. Just Mum.

I could go home. It’s not compulsory for me to stay. But I can’t face leaving Jaxon here at night.

My anxiety is too high for that. He’s only ever cried a handful of times and at almost nine months old he still doesn’t show emotion like a typical baby.

He can’t express his happiness or distress as a neurotypical child would. But I know him better than anybody else.

I understand of course many parents circumstances simply mean they are unable to stay with their children overnight but Jaxon is my only child. I have to be with him.

I still carry a lot of guilt from his birth, I feel I owe it to him to be here if he needs me, night and day.

When somebody walks in the room I switch, I pop on the mask and appear to whoever is stood there talking to me that I’ve got it all together and I’m coping with no issues at all.

Only they didn’t walk in the room ten minutes previous when I had my head in my hands, tears streaming down my face, feeling like I’m losing my grip on reality, not knowing how I’ll get through the next hour, never mind the next day or week.

I miss normal life. I don’t even know what normal is or if I’ve ever truly experienced it. In all honesty I can’t be sure normal even exists.

But I miss my normal. Our normal. I feel completely cut off from reality.

This must be how it feels in the Big Brother house, only I have visitors and my phone.

I also don’t have hundreds of cameras watching my every movement although it sometimes feels like I am under constant surveillance.

There are days where I take everything that is said to heart, feeling like everybody is getting at me. Other days I snap at whoever crosses my path because they’ve done something slightly different to how I would or because I disagree with them.

I miss the routine. I miss driving to therapy. It’s funny, before this admission I hated all the driving I did but I saw how much benefit it was having on Jaxon’s development so I knew it was worth it.

I’m so anxious in here. I’m anxious when I go outside. Having overcome agoraphobia and dealing with other mental health difficulties years ago, I now find it a struggle when I leave the security of these four walls.

I’m losing my confidence with the big wide world and the panic surges through me on the rare occasions that I do step outside. This is because I’m not facing the phobia I overcame years ago on a daily basis anymore.

I’m just stuck in here and even though I hate it, I feel safe.

What a contradiction.

The world still spins, people continue to live their lives and then I’m stuck. I feel like I’m in a different universe, completely detached from reality. I don’t know how long for or sometimes even why.

It’s one of those things that affects you physically, mentally and emotionally.

I’ve resorted to counting the ceiling tiles because I’m so bored of playing the same games on my phone, bored of doing the same wordsearch puzzles, bored of looking at the same four walls and the same view out of the window.

I’ve counted how many full tiles there are and how many incomplete tiles. There’s dots on the tiles, I could count those too but my eyes aren’t what they used to be and I’d likely lose my place quite quickly.

There’s 19 full tiles and 24 incomplete tiles.

Possibly the worst part about being here is that I’m in the same place that Jaxon was born.

I look out of the window and I’m greeted by a reflection of the very building where life as I knew it changed forever.

The building that I can’t even face looking at, never mind setting foot into. The trauma that surrounds Jaxon’s birth is still so great that seeing the maternity building is enough to set off my heart palpitations and transport me back almost nine months in time to that night when everything changed.

I know it could be worse. It could almost always be worse.

But for the time being this is my reality. My mind-numbing, soul-destroying, exhausting, frustrating reality.

 

We found a disabled parking space, close to the promenade. We sat for a moment watching families walk up and down the promenade stopping only to check that the sand had finally dried off their feet.

We climbed out of the car while listening to the plans our younger two sons had- “First I’m building a sand castle then I’m going down to the sea to get water for it and…” “Well you can do what ya like I’m going in for a dip and then…” our older son spoke over his younger brother.

Guys, you know we can’t stay here too long so don’t be making huge plans, just use your time here as best you can” I smiled at them both “As I pulled the wheelchair from the back of the people carrier.

We do beaches differently, heck, families like ours do almost everything differently.

Sometimes I find myself watching other families and imagining what it must be like just to bring the kids out, to just go – to me that sounds absolutely amazing and impossible.
Our days out are almost like investigations before we commit to anything.

A lot of the time I find myself asking the lovely lady on the phone, who doesn’t know if the venue is wheelchair friendly or not, “Can a buggy go in an around easily enough?”

Often they answer yes, but that comes with the idea of being able to lift the buggy over small walls or steps or taking the child out of the buggy, things wheelchair users can’t do.

Often we’ve been out and excited about finding a wheelchair friendly place to visit only to discover that there are no toilets or a million steps to the toilet – it is laughable sometimes other times I want to scream about how unfair everything feels when you can’t enjoy something because you can’t walk.

Then there are family days advertised, especially over the Summer, and when I make that phone call to inquire about the accessibility, the answers are often that they don’t know for sure or that it is, as far as they know.

It gets tiring trying to find places where we can visit as a family of five. The extra work we have to do before we go anywhere can leave us feeling deflated and a little pissed off

We all stood on the promenade, it was time to split up and try to ensure everyone had a good time for the short time we could be there.

My husband ran off down the sandy path out into Galway Bay as my two younger sons followed trying hard to reach the sea before their daddy did. I smiled at the passers by as I turned my sons wheelchair and began our stroll along the busy promenade.

My eldest son, Ethan loves the promenade, he loves people watching.

He used to love the beach and dipping his toes into the fresh sea water when he was able to outrun me but because there isn’t an accessible beach and he now uses a wheelchair, he can no longer do that.

The funny thing is that there are ramps down to a lot of our beaches but there just isn’t a path from the beach to the sea, it really wouldn’t take much to make a beach or two along our promenade wheelchair accessible.

We take turns, my husband and I.

He finds me along the promenade and swaps so I can go down and build sandcastles or jump in the water at other times we get a bit braver and carry the chair part of the way to the beach and then carry Ethan; I say braver because carrying a child while walking in the sand and trying to avoid seashells or seaweed isn’t easy nor is pushing a wheelchair through sand, but we have done it and will do it again.

We are not feeling brave on this trip to the beach as the sun is out and with it being a typical Irish Summer no one knows how long that yellow ball in the sky will last.

Salthill is absolutely swarming with everyone and their sister. It is far too busy to try to carry a wheelchair through a beach and then a child.

We stay for one hour in total. Ethan enjoys the cool sea breeze which we are thankful for as he was never a fan of heat, even if he doesn’t say as much as he once did, we remember the things he used to be vocal about.

I remember he once pulled down the blinds in our house because he was sick of the ‘sunny sun shine ruining his tv’ – he would often refuse to come out and play until the sun ‘went away’.

Our others boys try to convince us to stay a little longer, by then they have found a few kids to play with and are having a blast.

We feel guilty. We explain that it is too hot for Ethan and he is now bored of the promenade as he has been walking it with daddy or I for the past hour.

They complain because they are just boys who want to play like every other child there. They wipe the sand off their feet while muttering under their breaths.

We pretend we don’t notice, everyone has to let a little steam off when they feel they are being treated unfairly. We all get back into the car and pull out of our space as the sea becomes a snapshot in the rearview mirror.

“So, will we stop off and get some Ice cream?” I ask.

“Oh yes” the two boys are our friends again and all is forgiven.

I ponder for a moment wondering how much ice cream I can give Ethan without him coughing.

My husband reaches across and places his hand on my lap for a minute, almost like he is reading my mind he states “I will share a small cone with Ethan, I reckon he will get away with that” he winks.

And so our day at the beach is really one hour but when our sons talk of their time at the beach they talk about the fun they had, how they pushed daddy into the water and threw sand down mammys top (by an accident, I’m not convinced)the ice cream they ate and the friends they made – I guess it is true, it’s not about the quantity but about the quality of time we spend with those we love and that is something families like mine know more than most.

Before our youngest son was born eight years ago, cold and flu season didn’t seem like too big of a deal.

Each of our three kids usually came down with at least one cold during that time, and when April rolled around and the season was over, we breathed a little sigh of relief.

And then Chance arrived and suddenly cold and flu season became year-round for us.

After going into acute respiratory failure at two days old, Chance was placed on an Extracorporeal membrane oxygenation (ECMO) machine.

This treatment uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill person.

It provides heart-lung bypass support outside of the body. It looks as scary as it sounds and is very much a last resort type treatment.

He survived this, only to contract a staph infection in his lung, which required weeks of IV antibiotics and left him with compromised lungs from all the trauma he’d gone through.

Over the next few years, he was admitted to the hospital at least twice a year for respiratory issues. He would stay anywhere from a few days to two weeks.

Many of those stays required him to be on a ventilator, and all of them started with a simple cold.

As he grew older, the hospital stays became less frequent, but we also learned the hard way that respiratory issues were not always confined to the winter months.

He was in the Pediatric Intensive Care Unit for a week in June of 2013 and just last August the smoke from the wildfires here in Northern CA led to pneumonia despite an air purifier in the house and wearing a filtered mask outside.

Chronic Lung Disease is deceptive and sneaky.

My kid can look fine in the morning, and by night time, his breathing is so labored we need to rush him to the ER. This has happened more times than I care to count.

It happened just a few months ago. He was acting like his usual chipper self at breakfast, but by 3pm was feverish and lethargic, and his oxygen saturation was lower than it should have been.

Chronic Lung Disease is like the dementors in the Harry Potter books; not only does it take my child’s breath away; it casts a gloom on everyone it touches when Chance is ill.

Every time he gets a cough, my mind goes straight back to seeing him hooked up to the ECMO machine; watching a machine doing his body’s work for him.

Sitting in the ER a few months ago, I was mentally preparing for admission and a possible med flight to a bigger hospital.

My mind always goes to the worst-case scenario now; I’m pretty sure it’s a defence mechanism.

That, or just straight up PTSD. This time we got lucky. He was diagnosed with pneumonia and sent home with antibiotics; we had caught it early.

Chronic Lung Disease will always be a part of our lives, and we will always be on edge every time a cold goes through the house or his classroom.

If there is a silver lining to Chronic Lung Disease, it is that it makes you slow down and learn not to sweat the small stuff.

It makes you aware of who you want to be surrounded by and who you would rather distance yourself from. It gives your perspective and shows you how resilient and strong kids can be.

It has also shown me how strong I can be as a mother, as it has forced me to make decisions I never dreamed I’d have to make.

It has also taught me how to advocate for my son and myself. Most of all, it has taught me that there are always life lessons to be learned.

His school have been using it for a little while now.

There’s talk of us getting our own one soon, but for now we have the use of the schools one over the Summer break.

It’s an odd shape.

It can’t be folded nor hidden out of the way.

It is the latest in a long line of equipment to make its way into our home.

It isn’t the first piece of equipment and it won’t be the last,there’s talk and plans of a hoist track being fitted for when we eventually secure funding for an extension for our son.

It is an odd feeling using equipment to help my son do the things he used to do so easily.

It’s also amazing that there is such equipment to help my son do the things he can no longer do. It’s bittersweet, while I’m so thankful that there is such equipment it still sucks that my son needs it.

They taught me how to use it. I even took pictures, so I’d be able to check I had it done right, when it came to me doing it alone.

Yes, I’m that kind of mammy – if I’m going to have to use such equipment I want to make sure I use it correctly.

And so, yesterday for the first time ever I placed my son into a stander.

Something dawned on me as we went through this process of using his stander.

My son trusts me. He trusts me more than I trust myself.

He is familiar with it, which tells me the school team has done a lot of work with him.

He watched as I wheeled it towards him.

He sat straighter in his chair.

He popped out one foot then the other.

I was nervous because I’d never used this before and I worried I would forget a key part in the set up.

He’s wasn’t bothered.

He trusts me 100 percent. Sometimes, I marvel at the level of trust he has in my abilities like when I carry him down the stairs – I am so careful,so focused,so afraid I’ll miss a step, but him?

He’s smiling up at me, whistling away nestling into my chest.

He trusts me.

He trusts me despite my shaky hand when I’ve to clean,turn and push his peg in and out of the hole in his belly. Sometimes he watches as I do it other times he watches the TV knowing he doesn’t have to keep an eye on me.

He trusts that I won’t hurt him.

He trusts me despite my disastrous control over his electric wheelchair; he sings and whistles oblivious to the toes I’ve just wheeled over.

I don’t have that kind of trust in anyone,yet he places that trust in a lot of people in his life,not just me.

I strapped his feet in.

It took  two of us to get him in a standing position.

I placed his feet into the footrest of the stander. He laughed.

He stretched his arms out for myself and his brother to help him stand.

He trusted that neither of us would let anything happen to him; while I on the other hand had the instructions on my phone which my youngest son was holding up for me to follow.

Teamwork, eh?!

We stood Ethan up and quickly I strapped him in.

It took less than two minutes. He stood tall, arms outstretched while we played ‘Mickey Mouse Clubhouse’ theme tune as loud as the television would allow.

He used to love standing in front of the TV dancing and singing to his favourite shows, especially Mickey Mouse Clubhouse.

The three of us stood back and watched Ethan waving his arms around like a conductor of a band that only he could see.

It was magical.

And suddenly it didn’t matter that my son needed equipment to help him stand; my son was standing by himself for the first time in a year.

 

 

I wasn’t too sure what the title of this blog should be.

Initially when writing it, I intended for it to be about how fathers are so often disregarded and considered the lesser parent than mothers.

But as I began writing, it did not feel right. Instead, I felt the need to write about how amazing it is to see your partner become a father.

The day we found out I was having twins was not an easy day. It was a shock to say the least. It was not something I was prepared for, yet instantly, Zak was my rock.

He accepted and embraced the fact we were having twins far quicker than I did. He became excited and changed straight away.

Looking back, the change is easy to see. It was not physical, but mental and emotional.

At the time, I barely noticed. I was so caught up in the changes I was going through physically and mentally that I struggled to see the change he went through.

I felt alone at the time, after all, how could he understand when he was not the one carrying the babies? When it wasn’t his body that was working overtime and growing at a rapid rate in order to support two tiny humans.

But he was doing so much more than I ever realised. He was making sure I was well.

His main priority was me, because without my health, there was no hope for me or our children.

At the time, I struggled to see that. All I saw was him mithering and bothering me.

The constant questions about how I was feeling and if I needed anything, how he always made sure I didn’t tire myself out or put my body through too much physical strain.

At the time, I took for granted how he attended every appointment with me, and there were a lot of appointments.

Not only did I have ultrasound scans every two weeks, but I had blood tests, blood pressure checks and urine samples, I had check ups on my anti-sickness medication and my own mental health.

And Zak was there through it all. He wasn’t going through the physical change, but throughout all of it he was changing mentally and emotionally.

He was preparing for the change that was coming to our lives and was a father before our children were even born.

He was a father through caring for me. He knew that through caring for me he was caring for our children. He knew that by ensuring my health was as good as it could be, he was giving our children the best chance they could have.

In the haze of pregnancy confusion that I often experienced, he would remind me to eat proper meals, encourage me to drink plenty of fluids, remind me to take all the medications I needed and encourage me to do gentle exercises and keep active.

At a time where I was at my most vulnerable, he made sure I was cared for and safe. He was a father months before our boys were born and is the best father I could hope for my children to have.

I took my son to a busy park yesterday and while he climbed on equipment for toddlers I watched as one parent encouraged and guided her young toddler away from my noisy flappy ten year old.

Her son was naturally wary of the bigger, noisier and more energetic child and the parent seemed even more scared.

There were no stares or direct hurtful comments just a noticeable avoidance and a moving away.

Others seem to follow their lead and within minutes of my son climbing the few steps of the slide the small area of the park became so quiet it was just my son and myself.

He was oblivious. I wasn’t.

Now I know there could be multiple reasons why the first child was guided away.

I know my son is noisy, flappy and to some he should never even be on the younger equipment but that smaller, simpler slide and climbing frame is all he can do at ten.

He has every bit as much right to use the park as any other child and he wasn’t harming anyone.

I was watching him closer than any other parent. He was incredibly happy laughing loudly and excitedly as he climbed the few steps to the slide.

As we arrived the park was busy but after that first toddler was led away everyone else followed.

It was a powerful moment that left me feeling hurt, ashamed and embarrassed.

Autism isn’t contagious.

Your child won’t catch it by being around my son.

Yes, young children do copy others or feel worried at the sight of an older child around but my son isn’t dangerous or horrible. He’s autistic.

Don’t be afraid of the unknown. While you may wonder why a child almost as tall as his mum is still on smaller equipment or making different noises to expected, please feel free to talk to me.

I’ll happily tell you about my son and his love of life. I’ll happily tell you how excited he is to go down the same slide hundreds of times.

I’ll explain that his wonderful laughing isn’t aimed at your child and is just the sheer joy of being able to see cars pass as he ascends the ladder.

Never be afraid of what you don’t know. Use it instead as an opportunity to learn. Difference isn’t to be feared in any way.

Disability isn’t contagious.

Autism isn’t something to fear or walk away from. Even if there were legitimate reasons please explain to your child that my child exists and that he shouldn’t be avoided.

He is different, yes, but not less in any way.

Please let your children see children like mine. Please don’t ignore us.

Would it really have been so awful if your young child started laughing like mine?

I’m just so grateful my child doesn’t understand the hurt that I felt the day the park emptied when we arrived.

I’m glad he enjoyed his time in the park regardless. His laughter is helping heal my broken heart.