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Special Needs Parents: Regrets

Special Needs Parents: Regrets

I have regrets.

I have personal regrets, which I am not going to bore you with, instead I am going to talk about a regret which sometimes catches me off guard.

In 2008, Ethan was diagnosed with, "Hunter Syndrome".

In 2009, Ethan was granted a wish by the wonderful Make-A-Wish. (MAW)

He was nominated by our local Tesco.

We struggled.

We struggled with, firstly, the thought that our little boy met the criteria for MAW.

That’s a huge reality to try to accept; despite doctors and specialists telling us what Hunter Syndrome had planned, we, at the time, couldn’t see it becoming our reality.

We had a little boy who played, joked around, spoke, ran and was very much a typical seven year old with a few behavioral issues  and a hearing impairment .

Back then, it was very hard to acknowledge what Hunter Syndrome would do to our whirlwind son.

We struggled, secondly, with what to do with a once-in-a-lifetime wish.

Ethan told us he wanted to see Mickey Mouse and all his friends from Disney.

We showed him pictures of Disneyland.

‘There. Disneyland, Woo- hoo!!’ he ran around the house as the, ‘fairy’, from MAW laughed and handed us forms.

‘Disneyland it is. Florida, yes?’ She presumed.

This is where the regret comes in.

Ethan's behaviour was always difficult. His sensory issues were always hard to manage and his excitement over things often lead to extreme behaviour; he was reckless, a ball of energy, no regard for his safety and he never sat still.

He was hard work.

Hard to manage.

Hard to keep calm.

Hard to anticipate his reactions.

Hard to keep focused.

We exchanged looks.

Could we manage Ethan on a plane from Ireland to America?

Could Ethan handle it?

We decided there and then France was more suitable.

And that’s what we, his parents, both regret.

We focused on the wrong things.

We focused on how hard it would have been to fly with Ethan for that length of time. We focused on the busyness of the airport. We focused on possible flight delays. We focused on Ethan’s behaviour.

What we didn’t focus on was; that this could have been one of the last times Ethan could fly anywhere without medications, wheelchair, extra supports and papers from doctors telling the airline what to do in an emergency.

We didn’t realise; despite being told, that Ethan’s syndrome could only ever deteriorate.

We went to Euro Disneyland and had an amazing trip.

It was indeed a dream come true, not only for Ethan, but for us too.

Hindsight is always a great thing.

If we knew, that as the years went by, Ethan would slowly forget his love for Disney, we would have gone to America despite the potential stress that getting there and back may have caused Ethan (and us!)

Back then, it was hard to comprehend that our child, who could name every single Disney character would eventually forget them; he would, in time forget the love he had for them too.

And yes, we regret that we didn’t bite the bullet and go the whole way to America.

What I’ve learned since?

Ethan's behaviour no longer dictates where we go or where we don’t go.

What dictates it for us now, is accessibility.

We go on day trips, often.

We laugh.

We encourage ‘wildness’ and ‘mischief ‘in Ethan when he gets overly excited these days.

We are going to a Halloween parade for the first time ever, in our local city of Galway.

We no longer worry about the behaviours of Ethan in public.

We only worry about his sensory needs, accessibility and accessible toilets (Space to change to see what I mean by accessible)

And you know what? That’s enough to worry about.

I’m tired of worrying about Ethan's behaviour and how others react to him.

I regret that we didn’t think like this back in 2009.

To those of you who are anxious about traveling via a plane with your kiddies with extra needs; take it from me, it can be done, just research and contact the airline to get the assistance you require.

Don’t let behaviours or more importantly, other people's perception of you and your kids, stop you from getting on a plane.

Regrets, we all have a few

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ger Renton

Meet Our Blogger

Mummy to three boys and now a mother to a fur baby, Lola. Wife to D and lover of music, books, writing and reading. I'm a believer in the power of mindfulness, it's definitely the best gift I ever gave myself!

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