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Joubert Syndrome UK

 



 

Attention Everyone In The Swimming Pool | Print |

Attention Everyone In The Swimming Pool

Courtesy of Kidzaware/Special Abilities
 

I have an announcement. You're likely to stare at my son Stanley because he has Down's Syndrome. Also, being as he only a pair of trunks on, you will clearly be able to see his scar - this is from two heart operations. Impressive, huh? Anyway, if you could get the staring over as soon as possible I'd very much appreciate it, as my family and I would like to enjoy our swim this morning."

... well, I didn't say the above but I wish I had, because people really do stare. Now that Stan is a year old I can spot an oncoming stare a mile off. I am, in fact, a stare master. Let me introduce you to ...

The 'stare' necessities

Your guide to the staring possibilities available out there.

 

The downright shock

Believe me when I say that out of all the stare-types I am about to list I actually prefer this one. The other examples (below) of our 'staring society' involve some form of social processing or lateral thinking from the starer. So this staree prefers them to come right out with it. Maybe, however, I've got this wrong and they are really staring at my beauty.

Response - (and I've been working at this) Just shake your head enthusiastically at the starer. That's all. This is my humorous way of saying "So whose problem is it?"

The "I'm glad it's not me" stare

Other parents give you this sideways look, often. There's a split-second awareness which I've come to recognise as a moment of panic. "OK, deep breath, that kid has got Down's Syndrome. I had all the tests so it couldn't happen to me, but I 'understand' so I'll give a little sympathetic nod." You would have thought that if they have enough intelligence to think of so many things in such a short space of time then they might also work out that they are doing damage.

Response - Cuddle Stanley aggressively and laugh with him. God, that foxes them. I'm actually ENJOYING my son, not spending every second of my life in cold misery that he's disabled.

The double-take stare

What? One look won't do? How about another sneak peek? This usually happens several seconds after the initial moment of open-mouthed wonder. Then they size up for a second look. But I've already noticed them.

Response - Here's a thing ... we were recently in a queue for cinema tickets and a young woman clocked Stan. "Don't worry love," I thought, "I've noticed you.

You weren't very subtle." She whispered something about Stan in her boyfriend's ear. At least her partner had the grace to wait long enough to make it look like turning round had nothing to do with the whisper. Bad luck mate ... I was waiting. When he turned round, Stan's face was right in his face and I was looking aggressive. Poor boy.

The "Don't go to Cannes " stare

On holiday last summer we visited this exclusive French town for an afternoon. I stared at THEM and sized them up ... with their little dogs and collagen lips. But no, it was clear that unless you have the perfect body, you won't cut the mustard on the French Riviera. Here's an interesting one: famous people also get stared at, so what if a celebrity were to walk around the town with their disabled child?

Response - Go to another country.

The "We know someone with DS" stare

This is the 'friendly fire' of all stares and in some circumstances should be encouraged. My example is again from our holiday in France last summer. I don't speak anything more than school-boy French, so communicating with the locals was tricky. One day Stan and I were in a sandwich shop queue when a French-speaking family caught my eye and kept smiling and staring at us. They obviously knew someone with DS; there could be no other explanation. I felt like I was being really looked after, as if they wanted to tell me that Stan was important and that - if we could speak the same language - we would be friends.

Response - Smile back, they're on your side.

The right way

A friend of a friend met Stan outside the swimming pool recently. She immediately clicked with him and, in a sudden stream of friendly words, said: "Hello, darling. How are you? By the way, did I tell you ...?" In other words, she TREATED HIM LIKE ANY CHILD.

Too much to ask? It's staringly obvious.

 

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