I have met some ignorant people while out and about with Ethan (for those of you who’ve not read my stuff before- Ethan my teenage son who has a rare condition known as Hunter Syndrome. You can read more about him here ). I’ve met these people absolutely everywhere and while it’s very easy tell you a story about these people (which I’ve done plenty of times!) today I am going to tell you about the “other people”.
The “other people” are wonderful. They aren’t special or even have experience with children like Ethan – and before someone comments on ‘pc’ terms here; let me tell you, Ethan is not like most children , I don’t care how ‘pc’ that sounds, it is a fact.
The “other people” are often children, curious wonderful wide-eyed children.
“Hey missus, why can’t he talk?”
“Why is he roaring at me?”
“Why is he laughing?”
“Why does he need a buggy, isn’t he too big?”
“Why won’t he answer me?”
They ask the questions most adults (understandably) would never ask. I am no expert, but I am an expert on Ethan, so I can answer all those questions without hesitation.
“He has hunter syndrome, which means the things you can do, he used to do, but as he gets older he forgets how to do them”
“Wow. That’s sad. Is he a baby then?”
“In his mind he sort of is, yes, but you can see he is much bigger , isn’t he?”
“Yeah. Can I ask him his name?”
“Of course you can, if you need help understanding him, you can ask me”
At this point the parent is scarlet while the child is slowly walking towards Ethan.
“What’s your name? I’m X”
“Shrek” Ethan tends to call everyone Shrek.
“Really?” The child, X will laugh. “You’re messing aren’t you?”
I wait for the child to direct his question at me again, depending on Ethan’s mood we will either wrap up the conversation or continue it.
I make a point at smiling at the parent. I know it’s awkward and you don’t want to offend me, trust me, letting your child acknowledge my child is the highlight of my week. I embrace it and will never take offence to anything a child says.
“What’s his name really?”
“Ethan. Isn’t it Ethan you messer eh?”
“Hiya Ethan, I’m X”
“Hi X, sometimes Ethan can’t hear that well so he is unable to understand you but look you’ve made him smile. Thank you X. I’m Ger , Ethans mammy”
And so I continue like this if the child wants to continue or if Ethan allows us to. I often have to explain that we must leave but I thank them for making friends today with Ethan, while secretly thanking God himself that Ethan didn’t tell him to eff off!
Some other people are adults and they too have a wonderful way about them.
“Well hello handsome” a stranger may say as Ethan is sitting in his chair looking all cool with his hat and shades on eating a pop watching his daddy and brothers play rugby.
“Hi” I will always acknowledge any attempt by anybody wanting to talk to Ethan.
“Oh you are handsome ! What’s your name?” I will wait to see what Ethan will say which is normally ‘Mickey Mouse or Shrek’, he used to say ‘ It’s me Ethan’ but I can’t live in ‘used to land’…so I wait.
“Ethan” I will smile as the adult is smiling and by now often sitting next to us or bending directly in front of Ethans chair; which makes me nervous as we all know by now Ethan isn’t racist or biased, he will indeed hit anyone.
The said adult will normally talk a bit more to Ethan then realise Ethan doesn’t comprehend what they are asking, I am pretty sure Ethan appreciates their efforts as he almost always ends up laughing and pointing at them.
A conversation will then just naturally happen between us, one where the adult is genuinely interested in Ethan and they will ask questions such as – how old is Ethan, has he any siblings, where does he attend school, am I getting support, how amazing I am (which always makes me uncomfortable but I understand why people assume this), would I mind telling them a little bit about Ethans condition and what it means in simple terms…we could talk for minutes or for an hour but the conversation flows and it is nice.
We all have ‘off days’ don’t beat yourself up if you blurt out a question and the parent doesn’t respond well to it – we are all human – we are all just trying to do our best daily and make connections with people as we all pass through this journey of life.
This was originally published over on FamilyFriendlyHQ