Wednesday, 8 November 2017
This is such a huge topic- where to start? For those of you not familiar with Rett Syndrome, Jess (like most who have Rett Syndrome) is non-verbal. This means that she has no vocal speech at all. However, don’t interpret this as her being silent! She can laugh, cry, giggle, moan, groan, scream and squawk for attention! However, Jess can’t use her hands due to the involuntary hand wringing that is such a huge part of having Rett Syndrome. This means she can’t sign or use hand gestures to communicate.
There are many things that Jess CAN do however. The most important thing to know is she DOES understand. She understands what we are saying to her, she recognises letters and numbers, she reads and spell words. She constructs sentences. She tells jokes and winds her little sister up!
So how does she do this? A lot of Jess’s communication is non-verbal, just the same as the majority of us. For Jess this involves facial expressions and vocalisations; and for those of us who know Jess well, we can on the whole read her quite well. Jess can also use her eyes amazingly well. We know what her “yes” and “no” are - for “yes”, she will look directly at you and make eye contact, or giggle, vocalise or get excited. For “no”, she will look to her left shoulder. This allows Jess to answer simple questions and make some choices. However, this is NOT full communication. Think about all the things you say in a day, and imagine you can only do this with “yes” and “no” or facial expressions!
For a long time, it was assumed that those with a diagnosis of Rett Syndrome had severe learning disabilities, and were incapable of learning skills. However, with new technology, this is being shown to be completely incorrect. Those with Rett Syndrome appear to have a lot of understanding but until recently had no way to express their understanding and knowledge. This new evidence is now being recognised and supported with some of the main charities (like Rett UK) focusing on communication and supporting those with Rett to meet their full potential.
So the communication that Jess uses is called AAC (Augemtative and Alternative communication), which is an umbrella term that covers any non verbal communication. Jess communicates like this in a variety of forms - sometimes using no technology (for example, making a choice between two DVDs by looking at the one she wants, and then back at me), low tech (she has a communication book - she uses a language system called PODD which stands for Pragmatic Organisation Dynamic Display) and a high tech communication device which is a computer that she controls with her eyes, and also has the same PODD language system on it.
We always knew Jess understood things we were saying, and what was going on around her, even when it was not obvious to others. However, moving from having a toddler that we knew understood the world around her, to having a child with robust communication skills that both she, and others, can use to communicate, is a huge leap.
We have faced a massive learning curve in terms of finding out about the communication strategies, equipment and the technology that is out there, teaching strategies, strategies specific to Rett Syndrome, convincing others to believe in Jess, convincing others that strategies that work for children with other conditions may not work for those with Rett, fighting for funding and equipment. And this is before you even start!
We are very very lucky- we have always had supportive Speech Therapists, Jess goes to a very dynamic and motivated school, and we secured funding for the eye gaze device through our local teams. But this is only part of it! Any communication with Jess is time consuming- for no tech, or low tech communication, Jess is very dependent on another person for what’s called “Partner Assisted Scanning” where we go through the options, until she indicates we have found what she wants. This may not be a clear yes or no, it can be what’s called a “best yes”, so requires the person with her to be watching her closely and concentrating to notice very subtle indicators. The eye gaze computer is amazing as Jess can use this independently- her communication can be faster, more timely, more spontaneous and allows her complete freedom of what she wants to say. However, it takes time to set it up, calibrate it, trouble-shoot it etc etc and isn’t able to be used in all situations. It also needs frequent editing and updating as new people appear in Jess’s life, and new films and songs become favourites for example.
We then all need to learn how to use these communication systems- PODD (and most of the equivalent systems) all use symbols, so it’s like learning a whole new language. We also all have to learn to navigate through the system so we can find the symbol we want. This means that we all need to use the systems, all the time- it should be constantly available to Jess for her to use, and we should be constantly modelling to her - so when we talk to her, we also use one of the systems.
In addition, we are trying to teach Jess to read and write. We know she already has some reading and writing skills, using flip charts of the alphabet and core words and Partner Assisted Scanning (although we have no idea how she learnt to do this!). There are again very specific strategies for teaching a child like Jess to read and write and this has also been a steep learning curve, and skill sets that her school have had to also learn and implement specifically for Jess.
This is all hugely time consuming, and very hard when trying to balance with a normal family life- school runs, play dates, days out etc. Add into the mix frequent periods of Jess being unwell and hospital admissions and it gets even harder.
As with anything to do with being a special needs parent, it doesn’t matter how much you do, you will always feel like you are not doing enough. And given my aversion to anything technological (technology doesn’t come naturally to me!) the eye gaze computer has been a massive source of anxiety and frustration.
So why do we bother? There are many reason why we put this immense amount of pressure on ourselves.
From our perspective, it is amazing to find out what Jess is thinking, feeling and her opinions on things - and this becomes addictive! Once you start this process, you really miss the ability to communicate when in situations that mean you can’t use the method you want to, for example if the eye gaze device stops working. It also further develops the relationships we have with Jess,and the connections we have we have with her.
But the main reason is, I truly believe there is nothing else we can do that will increase Jess’s quality of life to the same degree. The ability for her to communicate, using a robust communication system, with those around her will (and does) give her life so much more depth and satisfaction. Jess is a naturally social child, and she loves being able to interact with those around her. Jess is also learning to communicate things that affect her- recently, she was able to tell us that one of her drugs was giving her side effects that made her feel ill, so we changed the drugs she was on. And when we as her parents are no longer around, or are no longer her main care providers, she will still be able to communicate her wants, needs and wishes.
The ability to communicate whatever she wants to say, whenever she wants to say it, to whom-ever she wants to say it to, is what will make the biggest difference to her quality of life. And so we persevere, as this is the greatest gift we can give her.