The future’s special

There are times when I am really proud of my kids.  A lot of the time I am exasperated by them (particularly when they are refusing to eat my lovingly prepared lasagne) , or exhausted by them (early mornings, anyone?), or nothing-much-at-all-they-are-just-there-cluttering-up-the-house-with-their-shoes by them (that’s a good one, that is), but sometimes, every so often, I am proud of them.  It doesn’t tend to happen upon receipt of school report/at parents’ evening (certainly not enough to make me want to publish it on Facebook), neither do I feel it especially much when they take to the stage, although those moments are nice (well, my children on the stage, that is); no, I feel it most when I see them around people with disabilities.  That’s when I feel most proud of them.  That’s when I feel that in some way I might actually be doing a reasonable job at this mothering thing.

We went on a holiday a couple of summers ago with a group of families who also had children with Down’s syndrome.  We went away, a mix of ages and shapes and sizes, the common thread being the extra copy of chromosome 21, and I watched the way they played together, not an eyelash batted, and I was glad.  I was glad of the way they got on with each other, the way they didn’t stare, or run away, or laugh, or diminish anyone else because they couldn’t do the things that they could do.  They accepted the addition of that chromosome in the family as normal.

IMG_1144
photo credit: Jamie Garside

It happened again today.  As it’s the school holidays, the time when we catch up on all the things we’ve been putting off (the house is almost clean), this morning’s job was Haircuts.  I tend to approach the event with a certain sense of trepidation, after years of trials and tribulations and refusals and tears in the lock chopping department, but, now that we have found a barber’s that not only produces a decent cut, but where Sam is prepared to sit, and even attempt a conversation with the lovely ladies, despite my discomfort at entering quite such a male dominated environment (there are fishing rods on the wall and The Sun as reading matter), it wasn’t too bad.

Today it was quiet.  Today, at first, for a little while, we were the only customers.  Today, I was given another reason (despite The Sun) why I hold that place in deep regard.  Today a young man turned up to take his shift, and that young man had Down’s syndrome.

No-one took a double take.  No-one made a comment.  He was bossed and ordered about in exactly the same take-no-nonsense-from-anyone-no –matter-how-big-or-small-they-are way as everyone else.  He handed round the lollipops and they accepted with alacrity .

Except for Sam.  Sam paused.  Sam was unsure.

It’s not like he’s never met anyone else with Down’s syndrome before.  He’s part of a little gaggle of boys who share the same genetic quirk at school.  He went on that holiday; he occasionally goes to support group/sporting events for children with learning difficulties.  It’s not like he takes any more notice of disability than anyone else.

But this time was different.  This time he wasn’t quite so confident.  Maybe it’s because the other person with Down’s syndrome was an adult.  I don’t think any of my children have ever met an adult with Down’s before.  He didn’t do anything that they weren’t expecting, he handed out the lollies and yet Sam hesitated.

The other two, they didn’t.  Their hands were straight in the sweetie jar no second asking.  (Perhaps they have realised they are fast approaching the age when they will be deemed too old of such fancies.)They smiled and politely said their thank yous, scratching the wrappers off as soon as they stepped out of the door.  They recognised the syndrome and they, like everyone else in the shop, made no comment.  By their actions you could hardly have told they noticed.

So perhaps that’s what it was.  Perhaps, for the first time, Sam noticed that someone was different.  Perhaps, for the first time, he saw the syndrome.  You know what they say about children.  They don’t see the differences that we do.  They don’t see the difference in skin tone, of religious dress, or names.  They just play with each other, because she likes skipping or he likes minecraft.

My younger ones noticed some time ago that Sam was different.  They raised the topic the first time they recognised the facial features of a child on ‘Something Special’ (although, amusingly, it took a good while longer before they figured out that the incomparable Justin Fletcher plays all the parts).  ‘Mummy, he looks like Sam,’ was the moment when they understood that Down’s syndrome existed.  That was when I expanded a little bit about their brother.

But what will I tell Sam, when he asks?   How will he feel, in that moment, when he sees that the person who looks different, who behaves subtly differently, shares that difference with himself?  I, who have witnessed so many children realise their place in the pecking order and done my best to limit the damage, what will I say?

 I suppose I’ll have o put all that experience to good use.

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5 thoughts on “The future’s special

  1. Nancy, i feel confident that you will cope with this next step the same way you have with every other along the way – with thoughtful insight and common sense. Wishing you well on this journey with your kids 🙂

    1. Thanks Anna – I hope so! At the moment it’s simple – he (I think) sees himself as no different to anyone else, so his world is just as much of an oyster as anyone’s (if that makes sense). When he realises his difficulty, how will he react? Gosh. Do I hope he never notices? Or do I hope he does, and that we can find a way through?
      RIght. Back to enjoying the present and not worrying about the future!

  2. I love reading about your family Nancy. I thought I’d share a few thoughts with you.

    We have a Down Syndrome man living in our street called Peter. He is well into his 60s and lives with his older sister. We have lived in our house for 15 years so basically my three girls have known Peter all their lives. We would always see Peter and Pamela in the mornings when I was taking the girls to school. We would have a chat, Peter would stroke the dog and we would exchange news.

    Our middle girl was a bit of a monkey when she was little. She was the kid who had no filter system and would literally say what she saw, or even worse, thought! I am very glad to say that she has grown out of this habit.

    One day, having had our chat with Peter and Pamela and (thankfully) walked on, G start to talk about Peter’s shoes. I guess Peter has a problem with his feet as he wears those orthopedic shoes. G had noticed the shoes and was asking why they looked a bit weird. Her older sister took over and explained that Peter was different from other people and that made him special. She further explained to her younger sister that it’s really not kind to point out differences because we are all made a bit different. And that was the end of the conversation. I think children perhaps notice the differences but accept that it’s quite normal.

    I am sure that I have told you before about the college I work in? We offer many classes for adult with physical and learning difficulties, Some of the students are in local authority care. Tony is one of these very special people. Tony was in one of my mainstream classes for a while before he decided that he would rather do some ‘fun’ stuff like cookery (his words!).

    Tony lightens up my week. Every Monday, we comes to see me when he has finished his tv and magazine club. We have a cup of tea and a catch up. It’s thanks to Tony that I know all about EastEnders – he has encyclopedic knowledge of the plot lines. This is great for me as I don’t watch much TV so fast tracking the plots is useful! I have sent you a photo of Tony and Jess (my eldest). Hard to believe he is 45 eh?

    You are doing a great job Nancy. Please keep sharing you experiences!

    T xx

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