It’s been a summer - an Irish summer.
It rained, all the different types: the ‘kind you get wet in’, the ‘soft light mist’, the ‘where the heck did that come from?’ and of course the ‘winter is ah-coming’ rain.
Yes, Ireland is beautiful…but a sun island, it is not!
Bringing Ethan anywhere is hard.
Ethan has many issues, the main issues that prevent us from going to busy public places are his sensory issues, his mobility issues, his behaviours and of course his ability to yell ‘fug off’ at any given moment.
But, that doesn’t stop us from going out; we just choose off-peak times and places we think may be quiet (ish).
We don’t always get this right.
But, when we do get it right—it always brings my emotions bubbling to the surface, whether or not I want them to.
To watch your child be included is amazing.
To watch your child be himself in a public setting is heart warming.
Ethan doesn’t understand this; but we do.
Every year for Ethan's birthday, (which is in the summer) we like to splash out a little bit.
We insist on making a big deal of his birthdays, even though they are very much bittersweet (Ethan has a terminal condition called Hunter Syndrome)
For his 12th birthday, we rang around a few local indoor activity play centres.
You know the ones, the soft blocks, the big slides, the ball pool… Ethan loves them…but he is so over stimulated by all the colours, noises, other children that he rarely enjoys them anymore.
He spends his time running from one side of the giant hall to another, screaming and punching anything and anyone in his path.
He used to play in them.
He used to climb… jump… slide …just like all the other children, he used to hide in the ball pit calling for me to come find ‘It’s me Ethan’
We were hoping if Ethan had his own group of pals and all the necessary aids that are needed when bringing five special needs children anywhere, that we may just engage him in the ball pit or even the slide.
I guess we do these things for us, we wanted to see a snap shot of our younger Ethan, the one that was hyper but still engaged with us.
I rang a few local centres and was informed that they would not be able to cater to a group of children with such unique special needs, despite each child having their own carer plus a teacher, plus D and I.
Disheartened doesn’t even begin to describe how I felt.
I had one more business to try.
I spoke with the manager, I explained a little about sensory overload, which happens to Ethan quite a lot in a busy setting.
I explained that each child would have their own personal carer and that we would of course ensure their safety at all time.
I continued talking while she added a few ‘Oh, Okay’-s.
The truth was, I didn’t want to stop talking .
Understand how important Ethan’s birthdays are, how much they mean, how much he means.
She interrupted me to tell me she would have to check her bookings (as I wanted his party to be held there too)...then she said what they all said: “I will get back to you”.
Like the rest of them, she did indeed get back to me.
“On behalf of M Business we would be honoured to have Ethan’s birthday party here.
As a gift to Ethan we will open our doors an hour early for Ethan and his pals.
I do hope this helps with his sensory issues and enables him to play with his pals”.
I handed the phone to D, sobs escaped my mouth without warning tears stung my eyes.
Sometimes children like Ethan can’t be included, sometimes it is in his best interest not to include him…
But then, there are ways around things which can make it easier to include Ethan.
Ethan and his classmates had the run of the place until they opened their doors to the public an hour later…and Ethan engaged with us all…he played in the ball pit, he went down the slide, he laughed and ran around like an excited child… he was happy.
That is all any parent wants: to see their child happy.
Thank you to that local business for giving us an hour of normality.
Do you find grocery shopping easy to do with your disabled child?