Pages

Friday, 15 November 2013

Smiler speaks


From very early on with Smiler we tried to encourage his communication above else.  Although we'd been told his brain was incapable of retaining information, we decided (not for the last time!) that we were going to ignore the professionals - theory being that although they would never had admitted it, they truly didn't know what he was going to be like, so it couldn't hurt to give him all the opportunities that we could.  So, the logically chosen first priority was communication.  Not purposeful physical movements, not posting objects into holes, not mark making (usually referred to as drawing or writing!), but communicating.  Getting thoughts from inside of his head to outside of his head.  The idea was that if he wanted something on the other side of the room but was physically unable to get over there to get it, so long as he could let us know somehow, we could get it for him.  To enable him to express choices - so that he would have some measure of influence of where he was, and what was going on.  Eye pointing, PECS, Makaton, BSL, speech - no matter how he communicated, just that he did.

* * * * *

Smiler's first Makaton sign, for biscuit, emerged when he was almost four, and his second, more, just two days later - telling you exactly where his priorities lay!  Over the next couple of years he gained confidence, and as well as learning more signs he started making sounds, which began to be recognisable as words, with maybe eight or nine spoken words by the time he was six.  But the point, I guess, is that the communication needs to flow both ways.  Even now, with so much more speech than we'd dared to expect, we get stumped.  Regularly.  He might repeat a word or phrase over and over, while we guess and ask questions.  Is it something you want?  Can you point to it?  Is it something that happened?  Something someone said?  When he was younger he would give up quickly, deciding it was just too hard, which was heartbreaking to watch.  Seeing his face, resigned to the fact that we don't understand what it is that he wants to tell us, that he remains alone with his thoughts, separate still from the rest of us.  Fortunately over the years we've found ways to work together -  he's fantastic, and will try so hard to help us work it out, even laughing at our wrong guesses.

One of my clearest memories of Smiler being unexpectedly imaginative was when he was choosing clothes - he must have been about eight, and I asked him which jumper he wanted to wear.  In he said, and I guessed several jumpers, none of which was the one he was thinking of.  He went through his drawer, couldn't find it.  In in he told me, obviously frustrated at my inability to understand him.  I asked if he could think of another way to tell me, and he paused, trying to think of a way to get through to me.  He smiled, and said ed, running his finger along his lower lip - the sign for red.  Okay Smiler, red... do you want your red jumper?  He shook his head emphatically, and signed again as he told me ed.  Then, making eye contact with me to make sure I was paying attention, he said in as he ran his right hand from his left wrist to his elbow.  Suddenly, it clicked in my mind.  He had signed red to get me thinking colours, so that I would then follow his (very own unique and ever-so-slightly inaccurate way) signing green.  He wanted his green jumper.  Thank you Smiler, for being patient with me.

* * * * *



* * * * *


Those of us closest to him can understand around a hundred and fifty of his words, but someone unfamiliar with Smiler would probably only recognise a handful, and only in context.  It's not enough for him to say it, the people hearing it need to learn it too.  At home and around and about we've become so used to translating Smiler's speech that we don't even realise we're doing it, and model his words back to him, in a sentence, all the time.

Smiler : Club
Me : Yes, Smiler, it is club tonight, you're right.  I wonder what you'll be doing?
Smiler : Chocolate
Me : Well, I'm not sure if there will be any chocolate, you'll have to wait and see.  You had hot chocolate last week, didn't you?  Did you have marshmallows on top?
Smiler : es [yes]
Me : You're so lucky - I wish I had hot chocolate with marshmallows - if I came with you do you think they'd give me some?
Smiler : No no
Me :  No?  Why not?  Poor mummy!  Will you bring me back a marshmallow then?

(And yes, many of our conversations do end up being about food)

Smiler communicates - that's the important bit as far as we're concerned.  And if that is through words, or signing, or gestures such as pointing and waving, or, as with Smiler, a mixture of all these, that's fine with us.  

6 comments:

  1. that is so sweet how he managed to get you to understand about the green jumper. and what cute photos xxx

    ReplyDelete
    Replies
    1. Thank you! It's so difficult to know how much someone understands of what is going on around then when they struggle to communicate, but Smiler is fantastic. I think more that he knows we will try our best he is prepared to put the effort in too, like with the jumper. Sometimes it is all still too hard for him, but we tend to assume he understand rather than assume he doesn't - much safer that way! I think people glance at him sometimes and wonder why we make sure he is included in conversations etc, but we know he follows a lot more than he was expected to. (But then since we were told he would have the understanding of a vegetable!)
      Thank you for taking the time to comment!
      Take care
      Lucas

      Delete
  2. Clever reasoning Smiler. Natty's first sign was 'cake' shortly followed by 'chocolate' and 'more'. You'd have much in common... ;)
    Thank you for linking to #ThisIsMyChild

    ReplyDelete
  3. Love these pics, what a sweetie! Communication is key to everything isn't it, and it's interesting to think about how we don't all speak the same language. We went through a lot of frustration at first too, but it's great when you start to 'get it' and things do become easier. Thanks for linking up, love this cheery post :)

    ReplyDelete
  4. Thank you for reading Steph, always great to link up and see how everybody's doing! I try (but don't always succeed) to think of the frustration as a positive thing - it means they want you to understand, you know?
    And yes, he is a sweetie, but I may be biased. My worry is that in a couple of years he'll probably be taller than me - he still sits on my lap for a cuddle or a story, and it's starting to fell like that scene at the end of Elf!
    Take care Steph!
    L x

    ReplyDelete

If reading this has made you smile, or left you feeling sad; if you're fuming in anger, or shaking your head in disgust; if you'd like to share something, or just want to say hi, please do so here. Thank you.