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手语符号——小胖威利沟通的桥梁

洛杰(这是我们的小胖威利综合征儿子)的5岁的表姐对小胖威利患者有着惊人的理解和宽容。她在他的生活中长大，并没感觉到他们之间有什么不同。她也是洛杰最好的朋友，也算是管理监督儿子饮食的一员。

她跑进房间，“阿姨，我们遇到了问题！”“弟弟说他饿了，他刚吃完点心，我们该怎么办?”

我走到了洛杰的身边，和我的侄女在一起。我发现他躺在地板上的沙发垫子上，假装睡着了，他睁开眼睛，一边微笑一边比划着“吃”。我向他那非常体贴的表妹解释说，他并不真的饿，他只是用他的手告诉她：“在刚才的比赛中很饿”。她笑了，游戏又恢复了。

自从他14个月大的时候，洛杰就一直在使用手语符号来辅助正常的交流。它的简单标志可以帮助洛杰传达自己的需求。大多数的含义都是很明显的，所以很容易学习和理解。手语标志已经缓解了儿子在无法诉说时沮丧的情绪。洛杰能用简单的手语标志告诉我们他口渴，疲倦，或者想看书。平时，我们只是简单地用“吃”、“喝”和“床”来快速地理解了他所想表达的意愿（意思是说：“我饿了”，“我渴了”，“我困了”）。

在洛杰使用手语符号比较频繁的时候，(在他学会这些词语以前)，我们可能有50到60个符号经常被使用，从“开车，散步，游泳”，到“猫，狗，兔子，马”之类的动物，到诸如“快乐，悲伤”这样的感觉，诸如“更多，完成，帮助”之类的词汇。

我们为了孩子设计了50或60个不同的手语标志，这些动作在他正常的成长过程中不断的被使用，当不明其意的人们看见我们的手语交流时开始怀疑脑子是否有问题。

三岁的时候，儿子开始把两三个词放在一起，但仍然喜欢用手语符号来表明他的观点。去年9月，洛杰开始被送去学前班，尽管他说的话不是很多，但他还是能与其他孩子以及他的学前班老师使用可以理解的手势交流。“手语符号确实帮助他获得了独立！”而在他掌握了这个对应的单词以后就放弃了指指点点的手语符号，看到他兴高采烈的样子，这真是太棒了！

当我们刚刚开始讨论使用手语符号的时候，感觉那是不可实现的。我们不确定我们能多久将它实施或者它是否有效，也不介意试着教一个孩子不通过一言一语。我可以诚实地说，这是我们日常生活的一部分——尽管现在我的儿子可以说很多话，我经常会看到我丈夫示意儿子“渴了没”，而洛杰则用实际的言语来回应。我想我已经习惯于对儿子或者他人使用手语及口语结合的方式来交流。

当我们为儿子引入新手语符号的时候，他们成了我们日常对话的一部分！竖起两个拇指表示“我很快乐”，我在回答别人“你情况怎样”的问题时，仍然喜欢竖起两个拇指。

手语符号并不仅仅针对有额外需求的孩子。我鼓励有代表性的孩子们也使用简单的手语，这很容易学，并且它是一个可以帮助你的孩子和你交流的很好的工具。当你在与孩子交流出现障碍时，这是一个神奇的桥梁来沟通彼此。简单的手势确实有助于与孩子沟通。现在唯一的问题是，当他拒绝用手语符号来表达他的意图的时候，我们需要时间来理解他的话。我想我们现在学的手语和儿子一样多了。这是个很棒的事情！

原文

ntroducing The Lodger(with thanks to our contributor, Emma Walsh)

The Lodger’s (that’s our son with PWS) cousin aged 5 has an amazing understanding and tolerance of PWS. She’s grown up with PWS in her life and knows no difference. She's The Lodger’s best friend and already a member of the secret food police. 

She comes running into the room,“Auntie, we have a problem! The Lodger is saying he’s hungry and he’s just finished his snack, what are we going to do?”

I went in to talk to The Lodger, with my concerned niece by my side. I found him lying on the couch cushions on the floor, pretending to be asleep. He woke up, smiled and signed ‘eat’. He was playing. It was breakfast time. I explained to his very caring cousin, that he wasn’t really hungry, he was just using his hands to tell her he was hungry in the game. She smiled and the game resumed…

The Lodger has been using sign language since he was about 14 months old. As we live in Ireland, we use Lamh but it's not very different from Makaton (or other simple sign programs).  Its simple signs help him communicate his needs. THe majority of the signs are very obvious and so it's very easy to learn and understand.  Signing has eased The Lodger's frustrations.  He's been able to tell us he's thirsty, tired, or wants to read books, all by using his hands.  We started simply with 'eat' 'drink' and 'bed' which moved quickly to 'NO BED' when he learned to shake his head!

In the peak of The Lodgers sign usage, (before words) we probably had 50 to 60 signs that we used regularly - from activities like ‘drive car, walk, swim’, to animals like ‘cat, dog, rabbit, horse’, to feelings such as ‘happy, sad’ and words such as ‘more, finished and help’.

The problem being an adult brainwashed into doing 50 or 60 different signs is that in normal grown up interactions the signs slip in and people start to wonder if you are going mad.

 At three years old now, The Lodger is starting to put two to three words together but still uses signs to get his point across, usually to emphasise the same point as above: ‘No bed!"

The lodger started Playschool last September and although he did have a few words, he was able to match them with a sign which was understood by his preschool assistant and teachers. Signing has really helped him with his independence. It’s been wonderful to see him dropping signs as he’s mastered the word and he loves the celebrations of learning new words!

When we were first told about signing, it was daunting. We weren't sure how quickly we’d pick it up or if it would be effective, never mind trying to teach a child without words. I can honestly say, it’s part of our day to day lives now- even though The Lodger can speak many words now, I’ll often see my husband sign ‘drink?’ while the Lodger responds with actual words. I’m guilty of not dropping the signs myself and often use signs and word combinations with The Lodger - and others!

As we introduced new signs for the Lodger to learn, they became part of our daily conversations with everyone! The sign for happy is two thumbs up and I still sign 'happy' in response to questions of how I am!  Between that and carrying invisible pigs (you can read about that story on our blog) people must really wonder what goes on in our house.

Signing is not just for children with additional needs. I’ve encouraged friends with typical babies to use signing too, it’s easy to learn and a great tool to help your child be able to communicate with you!  It's a fantastic bridge for the often frustrating communication gap before speaking comes naturally. Simple signing has really helped communication with The Lodger. The only problem nowadays is understanding his words when he refuses to sign to really make us work! I think we're learning as much as The Lodger these days. Two thumbs up to that!

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