Being Bettina’s Mum: Care to Communicate?

The need to communicate with one another has been around since man first appeared.  It started with the simplest of sounds (no, I am not that old that I have personal experience of this!) and basic cave drawings and is now done through many mediums.

Over the years, communication has become sophisticated and technological and it advances at a breathtaking speed.  The minute you buy a mobile phone or computer the “next big thing” is on the market making yours almost obsolete!  But for many people, communication is one of the hardest tasks they undertake during their day; it remains a mystery and very often leaves some people feeling isolated or invisible.  How do you communicate with someone who appears not to understand what you are trying to say, or for whom verbal communication is like a foreign language? How do you communicate with someone who has an impairment which puts obstacles in the way of being understood?

Whilst I do not profess to have all the answers, I do have some.  Being Bettina’s Mum has presented many challenges over the years, but especially so when Bettina was a young child.  At its height, Bettina’s autism was laced with difficulty down to her having a severe, and quite complex, communication disorder.  Every part of her day was a battle because oral communication meant very little to Bettina and this was made harder by a complete lack of eye contact.  Very often, when we try to communicate with people who speak a different language to ours, we can find some common ground through eye contact and gesture.  Without the use of these two tools we remain mute and disabled.

So, in order to communicate with Bettina and make her part of our world, it became necessary to find a “way in” to help her connect the dots and enable her to start communicating with the world around her.  What we discovered about Bettina, and what we discovered about ourselves, changed all our lives for the better and the following are some examples of how we did it:

• We took the pressure off Bettina and stopped trying to make her understand verbal communication or use it to communicate with us
• We armed ourselves with as much information and literature as possible on complex communication disorders and their origins
• We spoke with (or rather pestered!) speech and language therapists and other professionals for advice and ideas on “tools” they might have used in these circumstances
• We started by making the smallest of changes to the way we did things with Bettina so that we could assess her responses; this included using pictures cut out of magazines or photos of shops etc to build up her visual timetable and acceptance of change. Visual systems, such as PECS (Picture Exchange Communication System), are widely used now by both playgroups and schools, but very thin on the ground when Bettina was young.
• We discovered that Bettina made different noises to express her pleasure/displeasure and used these noises in return to let her know that we understood. This moved quickly through to fastening the appropriate word(s) to her noises.
• We discovered that it was easier than we thought it would be and this gave us confidence to continue and improve the successes we had already achieved.
• We found that Bettina found this way of working less and less threatening and she started to experiment with words. Naturally, Bettina finds it difficult to retrieve the words she needs as quickly as we do, so we allowed more time for Bettina’s responses.
• We worked with Bettina’s Special Needs School teachers on all aspects of her work and life. Fortunately, Bettina attended an excellent school, which became a “Centre of Excellence” itself due to its success with other children like Bettina – and also due to the determination and hard work of an amazing teaching staff.
• We have continued with and maintained this level of commitment and co-operation throughout Bettina’s life so far.
• We have used our experience and knowledge to formulate an in-depth support plan which is used to identify Bettina’s areas of strengths and weaknesses; her likes and dislikes; a communication passport; the world as she sees it; the way she expresses herself both verbally and non-verbally, and this is used to support her Individual Budget. We have even been able to use our knowledge and experience to formulate an Epilepsy Protocol for Bettina for use by her P.A./Carer or other family members which gives advice on how Bettina likes to be communicated with during seizures and how she alerts us to what is happening on these occasions.

Bettina’s complex communication disorder means that she will probably always need a high level of support to communicate with others and lead the life she wishes, and we will most certainly not stop from trying to improve her life in this way, but if we can do it, anyone can.  Besides which, drawing pictures on walls is largely frowned upon now!

Can you help someone to communicate with the world?

Follow Joyce on Twitter: @JoyceRaw1