Ssshhhh ......

Ever since my daughter has started speaking and rapidly expanding her word base I've become once again aware of how difficult it is for Bugs to communicate and speak.
At 11 months Ellie started saying mum with ease, followed with dad - today she even said to me 'put it down' 3 amazing words in a row. While I don't use Bugs as a scale to compare Ellie to and vice versa her absolute ease at picking up words and copying words has made me more aware of how hard it is for Bugs and how his difficulty with speech is so much more than just him not wanting to speak.


Occasionally in the past people have said things to me such as 'it's just too easy for him not to speak' - meaning that his communicating through taking my hand and pulling me over to the thing he wanted was communication enough for him. He had no reason to talk. While I don't agree I can see that although this seems to be an effective way of getting your point across to an 'outsider' it's a pretty basic way of working out the needs of a child and a pretty basic way of telling someone what you want. I have come to be so accustomed to the way my son communicates that sometimes he can give me a look and I know exactly what he wants. As a child and even now as an adult I can do a similar thing with my father. When I was 2 he had a stroke and one of the biggest side affects was his speech. Today he can speak much better, although still somewhat fragmented, and I'm an expert and filling in the gaps for him when he can't get the right words. One of my very earliest memories is going to speech therapy with him. Sometimes when Bugs cant tell me what he wants he gives me this really intense look - straight in the eyes. It's amazing for someone who doesn't like eye contact with anyone, it's almost as if he's trying to project his thoughts straight into my mind.


Bugs's communication has improved since he got his communication device last year - his Springboard lite - however we are still struggling for it to be anything other than a tool for him to request things.
As much as it cuts down frustration, him being able to tell me the activity he wants to do, or the kind of icecream he would like, it has still been unable to help us communicate past asking for things or answering simple questions like - what colour is this?


Bug's speech at the moment is a number of nouns, most of which are quite unclear due to dyspraxia . About 95 % of his words don't sound like they should. It's not that he just doesn't want to talk - he finds it very difficult to get a clear word out. Sometimes it appears painfully difficult. For example, even now the word 'drink' one of his 1st words - is 'dib'. Bug's is very self conscious about his speech and often whispers when prompted to say a word - and will only often attempt words with people he knows very well such as us.


Sometimes having a non verbal (or very limited verbal) child can be very scary, frustrating and sad. It terrifies me that he can't describe if something is wrong - whether it be a pain in his stomach, head, or if something bad has happened to him. As much as I've tried we still haven't gotten to the point where I can ask what is wrong, or what is hurting and he can point to it - his understanding of what is said to him isn't good either. I feel so desperately sad for him when I think he can't ask questions about the world. I can't imagine growing up, being a child and trying to understand everything around me, without being able to ask questions - he must have so many!  I don't allow things to be on tv etc that may confuse or scare him - such as death, or even some medical shows such as RPA - as I would hate for him to try and understand such things all on his own and I have no idea how he would interpret such things if he saw them. 


I really hope in the future I can ask my son a question such as 'what did you do today?' or 'how are you feeling?', but more than anything I wish he could ask me questions and I could help him understand this world a little better, even if I don't feel as though I understand it myself sometimes.