We have exciting news to share!!
Charlie has never spoken to us – at least, not in words.
We’ve always said that she tells us so much with her eyes, and we don’t just mean it in a poetic way (although there’s that as well).
She has always been good at meaningfully looking at things she wants and holding her gaze there until we deliver the goods.
We’ve been working on the next step of this scenario, ie. looking at the object, then Mummy/Daddy/sibling/therapist, then back to the object to convey her communication in a more interactive way.
We have been talking about Charlie’s best chance for effective communication a lot since her Rett diagnosis.
You see, Rett puts a lot of options out of the running.
Verbal communication is almost impossible – in fact, Rett sufferers are often known as ‘Silent Angels’.
Sign language is difficult because of a lack of fine motor control.
Mobility issues mean that leading people towards objectives is not feasible, and switches and buttons are troublesome because of that fine motor problem again.
One thing that Rett seems to allow control of is eye gaze.
To this end, we have been exploring the possibility of eye gaze communication technology – basically a computer with specialised software and a sensitive camera that tracks the position of Charlie’s pupils as she looks around the screen.
It was amazing!!
Charlie picked it up instantly.
She was wheeled up to the screen in her chair and immediately began to ‘smash’ green bottles on a virtual wall, using her eyes to aim a red ball at each bottle and giggling at the satisfying sound of glass breaking.
We went on to play another five games in the half hour allotted to her.
We even got to play ‘Simon Says’ – and Charlie was ‘Simon’!!
Even the reps from the company said that she had been their ‘star of the day’.
We went home feeling elated – at last, absolute proof of her cognitive ability!
Having it there in front of us in such an irrefutable way was more than we had expected and exactly what we had secretly hoped for.
The supervised trial had gone so well that the company offered to bump us up to the two week in-home trial as soon as possible, which turned out to be the following week!!
Over the last fortnight, we’ve used the equipment at least twice each day – having had a few turns ourselves now, we can vouch for the fact that it’s not as easy as it looks and is very fatiguing – and Charlie has shown us some incredible things.
She has discovered a world that she can control without too much assistance; unheard of in her experience.
She loves the games and has even started to use some of the more advanced communication features of the software, utilising simple picture boards that speak your word choices out loud for you (think of Stephen Hawking and you’d be close, although of course on a much-simplified four-year-old level).
We’ve noticed a marked increase in vocalisations (including Ma-Ma-Ma at last!), and even some signing (the Australian sign for ‘more’ doesn’t require much fine motor control and usually results in food, so this has been particularly motivating).
Sadly, tomorrow is the day we have to hand the equipment back.
We hope to apply for some funding to assist us in purchasing our own (very expensive) machine, which is likely to take months at least :(
Still, it’ll be absolutely worth it in the end.
I can’t wait to have my first real conversation with my daughter, for her to be able to share her thoughts, feelings, and opinions with me.
I feel so hopeful for the first time in a long time.
The eyes really do have it!
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