Friday, 11 June 2010

Communication Matters

As you read the title of this blog "Communication Matters" you are either wondering what an earth I'm talking about, or, you're saying "Yes of course it does".

For those of you who don't know, one side of Emily's development which has been severely affected is her ability to speak.  The speech seems to be a huge part of this syndrome.  The other families I am now in contact with around the globe confirm this with their own personal experiences.  I know of one adult who is still completely non-verbal, some of the older children can speak fairly well and others who may have the ability to hold conversations with short sentences now struggle with stuttering etc.

Emily is now age 4 years 7 months - her spoken language consists of 7 words:~

Mama      Papa      More      Yes      No      Bye      Hi-ya

We have been doing Makaton sign language with Emily since she was 2 years old and she has quite a large range of signs she uses now, however, her fine motor skills are so poor that her signs are approximations.  We can understand her but unless you knew Emily and had had time to get to know her signs or was totally involved in the context of the signs, you would struggle to understand her.  We do have our moments when even we can't understand her ~ it's these times that break my heart.

Emily understands EVERYTHING that is said to her, granted it sometimes takes her a little time to process the information but she gets there in her own time. 

The only way I see things when it comes to Emily and her communication is - she is a bright little girl trapped in her own mind, can you imagine knowing exactly what you wanted to say but not being able to say it, and no matter how hard you tried no-one could understand you??  "Can you imagine that really ??"  Not only is it extremely frustrating (on both sides, for Emily and whoever she is trying to communicate with) but how frightening that must be for her too.  As her Mummy, it terrifies me, it terrifies me that Emily's emotional state is definately being affected by her fear when I'm not around and more importantly how vulnerble it makes her.

I remember one family telling me when her daughter did start being able to hold basic conversations, she actually brought up something that had happened many years earlier - it had been trapped up there until she was able to verbilize it........

After receiving the diagnosis last year and realising that Emilys lack of progress in her speech was something to take seriously and not just presume that it would come eventually, I spoke to her (then) Speech & Language Therapist about considering other avenues.  She took this seriously and referred Emily for an assessment with a SLT who deals with AAC (Augmentative and Alternative Communication), this happened last November.  It was a very positive assessment - Emily was moved on to using symbols, of which she now has her own symbol book, as a stepping stone to move on to a device at a later stage if still required.  Without going in to details - the stepping stone process seems to have come to a stand still, a change in educational setting, a change in SLT, lack of communication, incomplete notes etc etc seem to have caused the problem ~ which you will appreciate frustrates the hell out of me.  So......

We decided as parents we would see for ourselves what is available.  This week we attended a Communication Matters Seminar at the Leeds Metropolitan University, to look at various communication aids available through various companys and even got a hands-on play with many of them too.  WOW and what an impressive day it was.  I must admit some of the equipment available Emily could have made very good use of a few years ago - it does make you question the "system" a little, the only excuse for this equipment not being accessible for children like Emily boils down to one thing "MONEY".  It breaks my heart.

We aren't going to stop here - I am still awaiting confirmation that a further assessment date has been arranged, if this doesn't happen then we will go ahead without their support.

Emily is our Daughter and we need to fight for anything that could make her life easier.  Being able to communicate better could make a huge difference for her - socially, educationally and emotionally.


"Children who are unable to communicate effectively through language or to use language as a basis for further learning are handicapped socially, educationally and, as a consequence, emotionally."
(Byers-Brown & Edwards, 1989)


  1. You are an exceptional mum and doing everything you can. I understand your worries. I think our kiddos can overcome and be healthy, happy, adults. Haley and William were great inspirations, and Marisa amazes me with her untiring will to communicate! Emily has loving parents and family, a great plus for emotional development. I see an opportunity to educate and reform in your system, and you are doing it right here and wherever you go. Awesome! (Hugs)