Ethan and Me

It’s hard not to go down the memory lane of ‘this time last year’… Pre-Covid, pre-lockdowns, pre-home schooling, pre-groundhog days.

As I sit and type this, I am looking at his smiling face.

It beams out at me from a shelf high in my sitting room.

That picture was taken last Summer, it caught him as he was; truly happy, truly innocent, truly handsome, truly Ethan.

My Ethan.

This time last year I was eagerly awaiting the return of my manuscript from a local publisher here in Galway called, Tribes Press.

The only people I had told about my pending manuscript was my husband D, my big brother Liam and of course Ethan.

They were all pretty good at keeping a secret!

As we all know, the pandemic hit in March of 2020.

By then, my darling brother was in his final weeks of life.

I, too consumed with pending grief and still trying to ensure Ethan’s transition to adult services would still go ahead, simply left the manuscript to one side.

My brother passed away on the 22nd of March 2020.

Before he left us, he asked me to ensure I got the manuscript published.

He was an artist, amazingly gifted with what he could turn a lump of clay into and I, according to him, had ‘a gift with words’.

By the Summer, I decided to do my best to bring my words and tales of Ethan to life.

After many corrections my manuscript was ready to be turned into a book.

It was exciting but I was riddled with nerves and self doubt.

The plan was that the book would be on sale in December of 2020.

Plans are funny aren’t they? We all make them, while knowing in a blink of an eye they could change.

September 23rd, six months after my brother Liam passed away, my beautiful first born son, Ethan, left this world suddenly.

My heart was already broken but when Ethan left me, it felt like my broken heart split into a million different pieces all at once.

I found it hard to breathe, let alone think of the book.

Time was a blur for a few months until one day in November something made me contact Tribes Press.

In January 2021 my book ‘Ethan & Me’ was released to an overwhelming response.

People from all over the world contacted me to tell me what the book meant to them and while reading and seeing all the posts about my book, I felt a little bit of my darling boy lived on in those who read it.

‘Ethan & Me’ is one family’s story of courage through adversity as they raise a child with special needs. It’s a story about hope, love and courage. There are many laugh out loud moments in the midst of the daily challenges.

Ethan was supposed to be here with me on this journey of publication but instead he is within the pages, very much alive and very much Ethan.

For those of you interested in purchasing my book you can do so here:

Thank you so much to Firefly who have been very understanding of my circumstances over this past year, I hope to get back to writing regularly again for the site that helped me so much over the years.


We’re starting a new journey. It’s much like the journey we started twelve years ago, only this time we, his parents, are a lot less ”green” around the whole process.

Ethan is to begin his journey into adulthood services.

Adulthood – ”The state or condition of being fully grown or mature”

Adulthood and Ethan were never really discussed with us throughout Ethans life.

The reason being, that most children with Ethans condition (Hunter Syndrome) rarely see adulthood. As Ethan aged and his abilities slowly declined, doctors began to talk about his possible teen years and what they could look like.

They were right about some of his teen years but there was a lot they didn’t know and only learned as we, along with Ethan went through those teen years.

The teen years were not kind to Ethan. They are what I would now call, the years that took the most from Ethan and us as a family.

I remember when Ethan was younger, before he reached the teen years.

He was wild. He was a four-foot whirlwind who never saw danger and only stopped when he fell. He’d ask me to look at his cut and tell him if a ’Freddie’ was needed. A ’Freddie’  was the name the nurses gave the injections Ethan regularly injured.

Ethan always ran like he knew it would be something he’d only be able to do for a limited time.

That has always struck me, when I think back to those early years–he’d run through fields, paths, shopping isles and roads like it was a gift to be able to do it.

He would learn new words as quickly as he mislaid them.

He’d understand very basic communication and I remember so clearly the day I asked him to bring me in his shoes and his bag. He was gone ten minutes but back he came with both items and a huge smile ”I did it mom. Tweat now?”.

I adored the way he mispronounced words and how he never seemed to mispronounce curse words until much later in his life.

Yet, he exhausted me.

There was no off switch.

If I brought him somewhere outside of our comfort zone, I spent a lot of that time apologising or explaining why Ethan did what he did to that kid or that adult.

Sleep was as foreign to Ethan as this social distancing was to all of us a few months back.

If Ethan don’t want to do something there was nothing I nor God himself could have done to get him to do it – most of these types of things included; haircuts, bathing, brushing teeth, leaving hearing aids in, refraining from biting anyone, not cursing at priests, teachers, specialists, little kids (I had to pick my battles, often!) and so much more that only now, looking back, I wonder how did we get through those early years with all those behaviour issues?

Back then I wished for the quieter years the doctor had assured us would come.

By the teens Ethan was quieter but not like I had expected.

Sure, he slept much better, (most of the time) but he began to try his hardest to speak for only incoherent shouts to erupt from his mouth. This left Ethan with an anger we had never seen before.

He was no longer the affectionate little boy he once was.

He became less and less interested in us and the world around him.

Doctors told us it was a mixture of hormones and the syndrome affecting his brain. They assured us the anger we were seeing would eventually taper off and more than likely take the last of Ethans speech, his ability to walk and even his ability to swallow.

Ethan is 18 and is classed as an adult.

Ethan no longer walks unaided. He no longer feeds himself and has often had to be tube fed due to behavioural issues and ill health. He no longer speaks. He spends most of his bad days shouting, hitting us and himself. He doesn’t sleep for days at a time. He finds joy in very little on these bad days and sadly since this lockdown, these bad days are more common than good days.

After this lockdown, Ethan will be classed as an adult and will have to go into adult services and when in hospital, he will have to be treated as an adult.

Ethan is still four foot nothing, wearing aged 11 clothes and is often mistaken for a child of 10 years of age.

I understand that most adults with disabilities need their independence and need to move onto adult services as they make their own path in this life; I can’t help but wonder about adults like Ethan, the forever child, trapped in a body and mind which constantly reverts backwards rather than forward?

Alas, we have no choice but to face this transition into adulthood with Ethan the only way we know how; with a deep breath, notebooks(of who is who), calmness on the outside while panicking inside, with gratitude that our son is seeing adulthood unlike so many boys before him, with a bucket load of hope and of course our sense of humour especially when we met the doctor that stares at us blankly when we say the words – Hunter Syndrome.

My hope right now for Ethan, is that the transition into his new adult day service and respite centre goes well, as he has not had the transition path, he should have had due to the coronavirus, like hundreds of young people all over our island.

18 on the 18th

He turns 18 on the 18th of May.

It was April 2008 when they told us our little boy would be lucky to see his 12th birthday.

Now, approaching his 18th birthday, I can’t help but think of the things the doctors were afraid to tell us to hope for.

Doctors, you see, can really only deal with facts for fear that if they give you too much hope you could, I suppose, blame them in some way or other for hoping things would be different.

Our diagnosing doctor gave us hope but with a big side of reality. He reminded us to spoil our son while we could and to hope that one day a cure could come his way. He reminded us (regularly) that our son was doing well considering all the other complications other boys had at this stage of the disease.

So, we have lived these past 12 years since diagnosis, always looking for the ray of sunshine in our son’s life and ours.

We read less and less about ‘cures’ and treatments as our son’s condition has now progressed to the stage where the basic treatment no longer works – but that can be  kind of freeing – it means less needles, less hospital visits, less appointments, less assessments, less studies…less everything really. It also means our son no longer screams when the hospital building comes into view. It also means we no longer have to insist a doctor take off their lab coat due to our son’s reaction.

Our world changes in accordance with our son’s condition. What do I mean?

Well, our son was a typical child up until he wasn’t. I can remember the exact moment in time when I knew something was very different about our son, he was just 18 months old. He woke up one morning and seemed to forget how to play with his favourite toy, one he had played with the night before without issue.

I knew then that our world was going to change, I just didn’t think it would be ever changing.

I’ve been the mammy to the wild child, one that knows no safety and likes to touch absolutely everything and everyone in sight.

I’ve been the mammy to the ‘bold’ child, the one with the ‘made-up’ diagnoses of ADHD.

I’ve been the mammy to the child who is Autistic.

I’ve been the mammy to the child who has Sensory Processing Disorder.

I’ve been the mammy to the child who is ‘too big to be a buggy’.

I’ve been the mammy to the child struggling in mainstream school trying hard to fit into the round peg, when he is more of a rectangle, square, triangle peg!

I’ve been the mammy who’s had dirty looks, tuts and been given advice on how I should parent better.

I’ve been the mammy of the child no one wants to play with.

I’ve been the mammy to a child who wore pull-ups for far longer than expected.

I’ve been the mammy of the child who uses bad language and then runs off.

I’ve been the mammy to the child who is kicking and screaming in the isle of Tesco because he can’t understand that he’s to wait in a line.

I’ve been the mammy denied help and support because my child didn’t fit into certain boxes.

I’ve been the mammy who’s child ‘looks’ fine.

I’ve been the mammy who has had to apologise when my child hits your child.

I’ve been the mammy who gets no sleep.

I am the mammy who learns to adapt as a condition takes hold of the same child who once told a priest to ‘hurry up with mass’ who now, can no longer speak.

My world is forever changing.

I am now the mammy to a nonverbal child.

I am now the mammy to a child who uses a wheelchair.

I am now the mammy to a child who can no longer be left alone for any amount of time.

I am now the mammy who gets some sleep but does weeks without it.

I am now the mammy to a child who needs two people to help dress, wash and change him.

I am now the mammy to a child who uses a peg to eat when he’s unwell.

I am now the mammy to a child with complex care needs and physically disabilities.

Yes, my world and my views on situations have changed through the progression of my sons’ condition.

But, what has never changed is that little smile, the twinkle, the little leg thrown out to trip his brothers up; that mischief, that beautiful laugh of his and the way he hugs me when he’s in the mood to.

My son is very much still here.

My son has adapted so much in his 18 years that I don’t think parents like me could ever do without them leading us.

So on this 18th birthday of his, I wanted to share how strong my son is and how strong he makes me, his daddy, his brothers and his extended family.

We are all so proud of him and with this pandemic going on, he has prepared us well for adapting to another new ‘normal’.

We won’t be having a big birthday bash (like we had hoped and planned for) but we are hoping to have a few balloons and maybe even a cake – We hope parents on the start of their journeys know that while doctors must tell you the harsh reality of your child’s condition, they can’t stop you from hoping and finding the ray of sunshine because it is there, it is always there. Try and stay in the here and now, as best you can.

*This May 15th is International MPS Awareness Day. What is MPS? Please click on the link to find out more.

Ethan has MPS type 2 – Hunter Syndrome.

Death came during the Coronavirus

The room had become a familiar place to be. It no longer frightened me. It became like his own little flat, he had everything he needed and loved within those four walls.

I’d knock before entering, always bracing myself in case I could spot changes in him that my parents or siblings hadn’t spotted on their earlier visits.

It was the 12th of March when the news came out about all schools closing the very next day due to the Coronavirus. “Must be serious enough so” he stated as I finished reading the emails from my children’s schools. “Aw sh1t “ I sighed, knowing this meant that my eldest son would more than likely not be able to attend his respite center. “Wonder will it last long” he spoke in a soft whisper, a voice which I was now becoming accustomed to. “I hope not”

We played on his computer, took a spin around the grounds and stopped off at the chapel before I left for home.

“See you soon” I gently kissed his forehead. He winced but smiled. Something else I was becoming accustomed too; his everlasting pain.

“Love you” he smiled

“Love you too” I blew a kiss from the door.

She stopped me as I was sterilising my hands.

“You know now with the virus, we are going to have to be stricter on visitors. There are so many of you” she smiled. I nodded, knowing she meant his whole family visiting all the time would probably have to reduce. There were nine of us altogether, so she did have a valid point.

“Will it last long, do you think?” I asked.

“No one knows” she rubbed my arm, “I hope not” she added.

I felt my eyes water. I swallowed hard. I opened my mouth when she smiled sadly at me and knew what I was about to ask.

“He has proved us wrong for the past 4 weeks, let’s just focus on how well he is doing now” she winked.

Ireland went pretty much into Lockdown over the following days.

I visited once more but with restrictions getting stricter and stricter, I decided it was best to ring, FaceTime and text him.

Saturday the 21st of March they rang and asked if all of us could come in as his time was near.

I stood outside fighting for breath before ever pushing the double doors through.

My parents and siblings along with his close friend were sitting around his bedside.

He was asleep.

He wasn’t in any pain.

We played music and told stories.

We cried.

We laughed.

We prayed.

And we cried some more.

We held him and each other as my brother took his final breath in the early hours of March 22nd, Mother’s Day.

There was no traditional funeral, no wake, no stories told for the first time and no faces to put to the names we had heard so much about.

I’ve been to my brother’s grave twice.

I’ve not sat with my family.

I’ve not grieved with my family, we are all apart and will be until this virus leaves our island.

The virus has snatched away the comfort of family and friends during such a devastating time yet; the virus has shown us that people are kind, considerate and that we are indeed a race that thrives on the human touch.

I implore you all to stay at home to protect us all and to let families like ours get together once more so we can say a proper goodbye to our wonderful, beautiful brother.

Politicians just don’t get it

There’s an election coming soon for our island of Ireland. There will be politicians knocking on doors hoping what the say to us will ensure our vote.

I don’t know much about the politics of politics.

I am aware of the importance of politics and what the right party in power can actually achieve.

I am the kind of person that can’t believe every politician is out for themselves despite our current government ensuring that they have extremely high wages and pensions; I refuse to believe that those up and coming politicians think that’s ok.

This isn’t a political post as I have already stated I don’t know enough about politics to debate it.

All I can write about regarding elections is what I have experienced in the past.

Confusion – when a politician is standing at my door and I tell them about the lack of services for children like Ethan.

Or the lack of suitable disabled toilets or the fact that my son hasn’t showered in his own home in over three years and that I have to carry him up and down the stairs to bring him to and from bed- they all respond the same way.

They tell me how horrible that is.

They tell me how they plan to change things.

They tell me how wonderful I am – which by the way, politicians, is a platitude which I don’t care for.

They tell me that they will get onto the city council and help get funding for an extension as clearly it is a health and safety issue for Ethan and I, if we carry on this way (no shit Sherlock)

They tell me it is a basic human right to have access to a safe space to sleep and wash (once again, no shit Sherlock)

They tell me that a ‘changing places’ idea is fantastic and maybe I could get back to them about that (I give them firefly website address and tell them all the information they need is on there knowing full well they won’t even google it.)

They remind me that I too can campaign for wheelchair accessible beaches.

They agree that I probably don’t have much time since I am an overworked, underpaid, under appreciated Carer but maybe I could start something and they will of course help, when they can.

They agree with me that the homeless crisis is terrible (while empty vacant houses are never too far away)

They take my contact details and say words like – “I’ll get onto this as soon as I can. It’s shocking” (I know they will get on to it, but once that vote has been casted they tend to come back with the same line as I got from the powers that be)

They agree with everything I say. They assure me that with their help we can at least get someone to help with our housing or change the system for kiddies like Ethan to make it more accessible and basically better.

The confusion for me comes after we have had this conversation.


Radio silence.

When some of them do come back to me, and some do, they inform me about the ‘red tape’, the ‘waiting lists’, the ‘embargos’ and of course the ‘budget’.

They tell me the sh1t I already know.

So what is a politician?

A politician is defined as – a person who is professionally involved in politics, especially as a holder of an elected office.

Who elects the office?

You and I.

While I admit I don’t know a lot about politics, I do know that without us, the voters, they can’t get a seat at the table.

So this election season I am going to have my questions ready,my knowledge about local politicians up to date and I am going to take my time casting my vote.

I’m tired of raising the same issues over and over again.

I’m tired of living in an Ireland where the elderly are left on trolleys in overcrowded understaffed hospitals, where homelessness is the ‘norm’, where disabilities are seen as something to overcome, where wheelchair users still can’t get a fecking train without notifiying the train station in advance. where children like Ethan are being left on endless lists while no one replaces the therapist that had decided to change career, where carers and those living with disabilities are treated as second class citizens and a burden on society…the list is endless really.

I just want a change.

I want staff shortages to be addressed and staff replaced.

I want access to my city while I am bringing my son around the city.

I want to be able to bring my son to the beach!

I want the elderly to be treated with respect – we will all be elderly at one point.

I want our disabled community to be able to get out and about without having to let the likes of a train station know their plans!

I want our government to stop – stop increasing their own wages and pensions. One pension is enough for anyone, yet most of them have two.

And, I want our politicians to remember that they work for us, the public.

Change takes time but it is time for that change now.

Please cast your vote well this February.

Life is indeed, too short

Ethan turns 18 on the 18th of May this year.

In any young person’s life this is a major milestone; in Ethans life this is just as major but it will be celebrated very differently than the majority of 18 year olds.

I have a few ideas on how we will celebrate this with Ethan but for now, I am counting my blessings.

I wanted to pause before I begin booking, researching, inviting and planning.


I could say something funny like I’m too young to have an 18 year old but I don’t feel that way. I can remember the reality of having a baby at the tender age of 20 and thinking how cool it would be when he was this very age, 18. I remember also noting how ‘young’ I would be! Not even 40.

I imagined a whole life, I imagined a whole different life. I also imagined a whole different son and a whole different mother; honestly, I don’t believe I am the only parent to admit that.

The son that was placed in my arms almost 18 years ago is not the same son that sits on my lap almost 18 years later. In fact,my son has never stayed the same – he was always changing, always bringing us into a new ‘normal’, not by choice but through genetics.

He wasn’t growing up or learning new things; he was fighting hard to retain what he already knew and his syndrome only allowed him to learn new skills from birth up until roughly 4 years old.

We were to be considered lucky if he made it to his teenage years.


Despite Hunter Syndrome stealing my son throughout his life, my son is the best teacher I have ever had- and I have had some great teachers.

Despite the syndrome affecting everything from his mobility to his brain, my son continues to teach.

Now, I know you may read this and think, ‘aww bless her, isn’t she great for seeing such positivity in such a shitty situation’ or something along those lines but I assure you, my son has taught me well.

18 Reality Checks, I know to be true thanks to my son and all he goes through.

Life can change in an instant without warning and without your consent- in fact your consent is never required. Accept that.

Lean on those that are in your life, don’t waste time chasing those that left when the shit hit the fan; they are obviously only paper thin anyway.

Accepting things as they are and facing your reality is not defeat. Hiding from reality is far more painful than sitting with it and acknowledging your situation.

Be blunt when you have to be. People tend to do what you ask when you are blunt with them. (Ethan used to say ‘not you’ when he saw a particular nurse come at him, or if a person he didn’t particularly liked called in…and it worked, the person stopped calling and that nurse handed him over to a different nurse!)

Let yourself feel it all; the happy, the sad, the lost, the lonely, the fear, the despair, the love, the laughter…..choosing which feelings to feel will make you ill.

There is always, always someone who surprises you by just showing up and being there.

People don’t always say the right things or do the right thing according to your own actions and reactions – remember that’s on you, not them.

Poop is just poop, we all have it, we all make it and yes it is sometimes smelly. It’s not shameful! Poop is important, it can tell us a lot.

Specialists and Doctors are human, they are not machines or superhuman – speak to them the same way you would a friend; if you disagree with them, you tell ‘em!

Life isn’t fair. It just isn’t.

Accepting some harsh truths can save you a world of pain in the long run but crumbling to your knees when you are first met with those truths is perfectly normal – just get back up, always get back up and if you can’t; ask for a handrail, a push or even a kick up the bottom – there are plenty of people that can provide that for you.

Laughter is absolutely priceless. There isn’t a nicer sound.

It is lovely to have the recordings and the pictures – but don’t forget to be present too – if it’s a big event, pay for a photographer.

Say yes to things you’re not sure about. If I thought long and hard before decisions I made since Ethans diagnosis I would never have been on Don’t Tell The Bride, nor would I have taken part in a documentary all about Ethan(and kiddies like Ethan) called ‘Ireland’s Miracle Children’ and I most definitely would not be writing publicly – and that’s just a few obvious ones!

Take actions to ease your worries – get a camera in your child’s room if you’ll sleep better, pop in unexpectedly into the center or school your child attends, chop the food extra small or don’t – do whatever eases your worries – no one judges you harder than you, sadly.

Every day make note of a happy moment -write it down. You’ll find that there are quite a few – the simplest of things can become treasured moments.

Hospital stays are fecking lonely. Hospitals stays outside of your own county are beyond lonely – make the visit. Don’t ring and ask, don’t presume they are sick of visitors – just show up. It’s those kinds of action acts that can give a heartbroken parent that little lift in the bleakest of times – and don’t worry, the won’t remember what you said, they’ll remember that you came.

A messy house is a sign of a happy home – there is a difference between messy and dirty though. Let the mess build and hire a cleaner two mornings a week for the rest!

Life is indeed too short.

Twinkling Lights

Twinkling lights, stars so bright,
Clear dark skies on a Christmas night.
Gifts wrapped, piled under a tree,
Eyes wide, hearts full of glee.

Twinkling lights, stars so bright,
Some children scared of the sight.
Routine is gone, crying for their norm,
Despite Santa comin’ early in the morn.

Twinkling lights, stars so bright,
Beeping of machines, wires pulled tight.
Watching them closely, begging them to fight,
Maybe a Christmas miracle will happen tonight?

Twinkling lights, stars so bright,
No where to call home, not just tonight.
Santa will find you no matter where you lay,
A parent promises through hope and fear.

Twinkling lights, stars so bright,
A shakey hand turns off the lights,
Memories flow through streams of tears,
It’s easy wish for this time last year.

Twinkling lights, stars so bright,
An early dinner before the flight.
A plane taking off, watching it fly away,
Fighting the tears, hoping next time they’ll stay.

Twinkling lights, stars so bright,
A diagnosis which demands an unfair fight.
Family gatherings, more important this year,
Time spent well sheds many a tear.

Twinkling lights, stars so bright,
Clear dark skies on a Christmas night.
Wherever you are this special night,
I hope some peace & love holds you tight.

Christmas Gifts

I walk through the doors and head straight to the baby aisle.

It has been my first go to aisle now for the past number of years. I like to go there first because sometimes I find it the most difficult place to be.

I scan the shelves and pick a few soft toys up, mostly bath toys and give them a squeeze.

I check the tags to ensure that when these are placed in the mouth that they will do no harm. I scrutinise the toy ensuring there is no damage done to it before adding it to my trolley.

I don’t stay long in this aisle. I get very few of these toys then I move on to the musical books.

I stand here for awhile remembering what he once loved and wondering if he would recognise it now; this part of my shopping hurts me so I often leave that aisle and decide I will shop online instead.

Tears often fill my eyes when I am making my list for my boys and checking it twice.

Two of my three boys are easy to buy for – they tell me what they would like or they express an interest in a certain TV programme/game/character etc which helps me hugely with my list.

But when it comes to my eldest I am often left wondering what he would like.

I decided to change this thought to want he needs and perhaps might recognise. I find that way I don’t get caught up on ‘what used to be’, as much.

But, I am human and can wallow just like everyone else.

This wasn’t always the way for me and for him.

Christmas used to be a time when he would make his own list and hand it to me almost daily.

He’d express over and over again what he would like from Santa and I would get him every single thing on that ridiculous list.

I spoiled him.

I remember when they told me how Hunter Syndrome would change him over time, how it would take everything from him bit by bit. “He may make it to his teen years but by then his abilities will be no more than a six month old baby abilities”

I didn’t want to believe them, but in case they were right , I decided I would spoil my boy and give him everything he could need or want (within financial reason, of course).

For many years I lived in denial but was always noting the abilities he was losing, I finally stopped comparing last Christmas to this Christmas and stopped watching the previous years videos.

It was easier for me.

I get messages from family and friends more often now asking what Ethan would like for Christmas or birthdays and often I don’t have an answer.

I simply don’t know.

But what I do know is what Ethan needs for Christmas or birthdays, so I tell them.

I have to say I have a great family and kind friends who do ask what Ethan needs or if there is something they can give a few bob to that we are saving for. I appreciate that a lot.

It is expensive having a child with additional needs.

Families like mine don’t like to say it, but it is expensive.

There is always a piece of equipment that Ethan would benefit from that we can’t afford or that we’ve to wait months, sometimes years to get through the HSE.

Time and Hunter Syndrome don’t mix well.

Then there’s little things like neck pillows or wheelchair supports , blankets etc.

My point is, if there is someone in your life who has a child like Ethan, simply ask them what their child may need.

It doesn’t have to be a big expensive thing but it’s better to get something that is needed and will be used rather than something that sits gathering dust and reminds parents like me of the child that used to be.

To all my family and friends thank you all for always asking.

Cousins make the best friends

She stands at one foot nothing. Her hair high up on her head, well, I say hair but it’s more like wisps of wild light strands tamed by a tiny hair band that her mother has colour coordinated with her outfit.

It’s heart warming watching how she interacts with her eldest cousin, Ethan.

I have lost count of the amount of children who have been so frightened by Ethans screeches and laughter that they’ve ran off into their mothers open arms.

I know children find Ethan hard to understand and I know he can be loud which can make a little one jump and a parent glance over at us.

I often smile at the parent and help Ethan wave at them, sometimes a parent takes their child over to meet the loud boy but most times they pretend they don’t see us and hush their children away.

I can tell you that, that hurts and only teaches your children that different equals scary.

She is used to her cousin. She is at the age where she watches us all and sees how her aunts, uncles, grandparents and her parents interact with Ethan. She copies the behaviour she sees, like all toddlers, she is always learning.

Her mammy, my sister, brings her to see her three cousins as often as she can. She is the bossiest little person I have ever met.

She demands my youngest son plays with her, but with him being 5, he has little interest in her. She moves on to my middle guy who absolutely adores her.

She can get him to play anything with her for as long as she allows him to.

She is a strong willed little lady who knows her own mind, yet she is so gentle and affectionate.

She toddles into see Ethan. “Hello Ethan, awww hello” Ethan can hear her but cannot see her as her head doesn’t pass the top of his table. He laughs as all he can see is her wisps of hair floating along his table top.

“Ethan laughing” she points and laughs while climbing the chair beside Ethans.

Her mammy always brings treats for the boys, she reaches for Ethans snack which is normally the melt in your mouth ‘Skips’ and places a few on Ethans desk just as her mammy has done each time she visits.

She gently climbs onto his table and takes a ‘Skip’ in her hand, Ethan watches her and laughs when she tells him, “Let me do it, open mouth Ethie, good boy” Ethan opens his mouth as she places half a ‘Skip’ on his tongue, she then reaches for Ethans drink.

She is a pro. Her mammy hands her the drink and guides her little hand as she checks to see that the skip has left Ethans mouth. “Small dink”she offers the straw to Ethan.

He drinks from it. “Aww good boy Ethie” she repeats what she knows we say.

She leans in for a kiss and laughs when Ethan licks her as he gets confused when she tries to kiss him. “Silly billy Ethie” she claps as we all tell her she’s such a good girl.

She gets down and toddles off towards our dog Lola who hopes she has something nice that she’s likely to drop any second now. “No Lola, all mine” she tells Lola as she walks passed her.

It is an amazing thing to witness the kindness, the indifference, the affection and love my little niece shows when spending time with Ethan.

It also drills home to me the fact that children watch the adults around them and really learn from them and their interactions with others.

So, when your child is frightened of children and adults like Ethan and you comfort them and remove them, what is it you are teaching your child? Think about it. Please think about it.

Comforting them is understandable, removing them is a little harder for me personally to understand.

You’ve a chance once your child is calmer, to explain how we are all different and how some of us screech when excited or whatever the case may be.

It would be nice and a bit braver on your behalf, to bring your child over to meet the person they were frightened of, simply to show them that they are human too and just a little different.

Parents like me, should never hush you away for trying to make human connections.

We do understand that a child who has no experience with people who are different from them might stare, it is the parents reaction we watch for, not the child‘s.

We all should embrace differences and let little children know that fear of the unknown is understandable but by just spending a few minutes talking with Ethan and those who appear so different from them, can indeed make us all realise how alike we truly are.