Imagine not having speech to communicate. My daughter often amazes me with her determination and the way she overcomes the challenges of her disabilities.
She was diagnosed with a metabolic disorder called Galactosaemia when she was 7 days old. We were told that there would be a chance she would have speech issues so when she wasn’t making any babbling noises or speech by the time she was 10 months and in fact she wasn’t meeting any of her milestones at this stage we were concerned and got help from a local centre and a combination of therapists became involved in our lives to assist us. This included a speech therapist and shortly after she was diagnosed with severe verbal dyspraxia. Her receptive skills are relatively normal in comparison to her expressive skills and we have always talked to her appropriately for her age.
If we want to say something we just SAY IT. We don’t think about it, the words just come out without much thought. Image if you didn’t have the vocabulary to tell people your thoughts, needs or wants. What would you do? How would you behave?
Our daughter started displaying worrying behaviours when she was about 18 months, before this she just cried a lot but now she started hitting herself and others, pulling clumps of her own hair out, head banging and yelling.
After having a meeting with our Speech Therapist it was decided to start teaching her sign language to try and alleviate her frustration. We started Makaton Signing (now Key Word Sign) where she learnt just basic signs to start with being help, more, ok, yes and no which we increased over time. We saw an improvement in her behaviours nearly immediately and she became a much happier girl. This was the start of her communication journey.
Over the years we have tried other methods of alternative communication including PODD books, Dynavox M3 (voice output device) and picture cards.
She is now 11 years old and is still predominately non-verbal. She has about 15 words which we call survival words. These include, Mum, Dad, yes, no, car, an important one for kids Santa, ok and a few others. We call these survival words as they can get her a long way in a conversation. Her receptive language is quite normal and we talk to her like we would talk to any 11 year old. She still yells when she is not getting her way or when she is frustrated but her other behaviours have nearly disappeared. Occasionally, through frustration she will still act out. But I empathise with her as it must be hard to have your thoughts and feelings trapped in your mind and not being about to get them out. Or you can only get your thoughts out in summary as you haven’t got access to all the words you want to say.
Imagine having an expressive language base of 15 words yet the receptive language base of around 11 years. That is quite a big difference between what you want to say and what you are actually able to say with speech. How does she overcome this? She is actually a fantastic communicator and people who meet her are amazed at how well she can get her message across without speech.
She does it by being multimodal. She combines all of the skills she has learnt together to say what she wants. She uses her survival words with a lot of emotion, body language and gestures. She also combines these words with her signing. She would now have over 100 signs in her vocabulary. If you still don’t understand her she will either take you or show you want she is talking about or she will just make you feel stupid and incompetent as she puts her hand up and raises her eye brows always with a smile though. Basically saying “don’t worry about it”.
It’s not often she doesn’t get her message across. She is amazing.
We have now also introduced an iPad to her for communicating. We are using an app called Touchchat after consultation and assessments by her speech therapist and we are setting this up for her to be able to communicate in the wider community and to be used in situations where signing isn’t an option for her as not everyone knows it. She is loving her new device and is starting to incorporate it with her multitude of other communication options. She may not be able to speak like us but I think she has a better understanding of the fact that communicating means more than just speech it is the incorporation of a number of different methods all used together to get a message across. She is a master at this.
We are so proud of her.