Being a Parent to a Child Like Ethan

There are so many great things about being a parent to a child like Ethan.

People tend to not know that.

They tend to think or imagine our lives as sad ones or a life full of struggles and battles; while on one hand that is absolutely spot on, there are also some pretty cool things about being Ethan's mammy.

I’ve compiled a list about the ‘perks’ of being a parent to a child with special or extra needs - and yes, I purposely choose the word ‘perks’ because there are perks, well, I see them as perks!

One: The Wheelchair

You want to see some kindness in the world?

Watch how helpful people are when they see you struggle with a wheelchair - my gosh people can’t do enough for Ethan or I as we try to navigate a world designed for working legs!

Two: The Peeps

Ah man, the peeps, my peeps!

We met them absolutely everywhere - without Ethan I don’t think I would have ever met some of the kindest, most genuine, most caring people ever to grace this earth- people who care for Ethan because they choose to - they are the best kind of people.

Three: The ‘Inside’ Track

Ah yes, my fellow SN parents are smiling at this one. We all know how the ‘inside track’ works - we know who is who and how to get to the who of the who-ness, oh yes there is a whole other language when talking about the ‘inside track’.

We can also tell you tales that would leave your mouth open about what goes on within the ‘inside track’ - yes, indeed, we each have a story or twelve to share regarding the ‘inside track’ on services, hospital, appointments and even consultants - but never worry, we don’t gossip… we simply ‘share’.

Four: Assumptions

Sometimes it can be annoying when people assuming anything about you, other times it can work to your benefit. And yes this is a perk!

When queuing with my son, simply because he is loud or in a wheelchair, people let us skip! Ah, it’s great, I like this perk a lot.

Five: Free

Look it, I am not going to lie here and it may seem crass but it is what it is. People, I mean absolute strangers, give Ethan things for nothing. I don’t know why.

If Ethan likes something in a shop, I do tend to buy it but Ethan can often like more than one thing or something way out of my price range and that’s when it has happened - some random kind person insists on buying what he wants or the shop owner tells him to take it!

Now, it hasn’t happened in a while but back when Ethan was partial to a whopper of a meltdown, he was getting freebies left, right and center.

Six: Learning

I am always learning. Every single day I learn something new.

I don’t even know I know half the stuff I know until a friend rings or my sister rings wondering what to do with their neurotypical child who is unwell - I normally know what to do! Isn’t that amazing?!

There are things I know now that I would never have had any interest in learning when at school/college - but now, now I can talk you through a peg clean, a site clean, what to use on an infected site and I can show you some physiotherapy to help with carpal tunnel pain or joint pain or mobility issues, not to mention how to spot a chest infection before it even becomes one!

Oh, I also have a vast knowledge about drugs - the legal kind (FYI)

Seven: Experiences

We as a family have had some amazing experiences because of Ethan. We have been witness to some truly touching human kindness.

We have done things we would never have done had it not been for Ethan - for example, we got married on Don’t Tell The Bride - yes the TV show, because Ethan has a terminal condition we wanted to be married and to have Ethan be a part of our day.

I personally, would never have started my dream of writing had it not been for Ethan.

Ethan drives me to be better, to do better, and to always try, without him, I truly believe I would still be dreaming about writing and working in a job which just pays the bills. He make me live.

Eight: Gross

There’s nothing that can gross me out. NOTHING.

I have cleaned it all, moved it all, picked it all up and off floors and walls - I am actually able to clean the dirtiest of nappies while not smelling it at all!

No, I don’t use a face mask, I simply breathe through my mouth and there it is - the big secret on how to clean up a mess without getting sick yourself!

Nine: Laugh

I laugh. I laugh an awful lot. Sometimes I laugh at things that parents like me would kill you for saying aloud.

See, there’s a rule within my community, we can joke and laugh about the sh** which happens in our lives, but you can’t - it’s a little like that rule where you can call your own mammy names but no one else can.

I always had a good sense of humour but since becoming Ethan's mammy I really laugh at a lot more stuff that would have the average parent crumbling with embarrassment.

Ten: Perspective

I find I write a lot about perspective but it is true - my perspective is what keeps me going, without Ethan, I don’t think I would be capable of having such a healthy perspective to most things in life.

It is a shame for all of us that we cannot gain such a perspective without having a child like my son but I suppose that’s why I find myself writing about perspective quite often.

It is like a superpower given to parents like me and one we must share with parents not like us - There is far more to life than grades, milestones, awards, achievements...all any of us have is the here and now - be present in the present, as best you can.

So there you have it, just the tip of the list of the perks of being Ethan's mom