Living with Rett Syndrome is tough.
It is tough for Rosalie to show what she wants, what she needs, how she feels, whether she is too full after eating, whether she is in pain, whether she just wants to chill out on the couch or whether she wants a toy. All of the toys that she has been given, she can't generally use in the way they were intended. Her favourite spinning toy that says the alphabet is just spun over and over again and we have no idea how much she understands the words and songs.
It is tough as parents. Trying to decipher what a 1 year old wants is tough enough - going through the list of potential needs. We're almost at 3 years old and still in the phase of educated guess work when Rosalie is unhappy - new nappy? need a snack? need a nap? need a cuddle? need Peppa Pig?
The last couple of months were getting particularly tough, I don't think I quite realised how tough they'd been on both of us. Going through the motions without much of a hint of your child developing drains you. Every parent lives for the firsts, the first crawl, the first word, the first step, the first sentence... we've missed all of them so we've given up on tracking the ones kids Rosalie's age 'should' have and beginning to realise Rosalie has her own milestones. We hit one a couple of weeks ago.
Having been a computing teacher for 8 years, I was aware of the advancement of tech to support people with disabilities. I had heard of eye-gaze technology and soon after Rosalie was diagnosed we'd recognised that those with Rett syndrome often use the technology to help communication. We booked in an eye-gaze demo with Tobii Dynavox to see how Rosalie would respond to it.
It was amazing.
Seeing Rosalie intentionally engage with the various objects and games that appeared on the screen has opened up a world of possibility. We even got a glimpse of what she understands as she was able to pick a cat or a hat depending on what we asked from the two symbols on the screen.
It is a long road ahead as we learn to communicate with the software ourselves and aim to model it to Rosalie. It will be filled with frustration, incorrect words and potentially some tantrums...but I imagine I feel like a parent who has heard their child's first word - the overwhelming idea of teaching her to talk is not a problem at all.
It might seem a little thing, seeing a mouse pointer move across a screen, but it has meant the world for us. I think it has meant the world to Rosalie as well - listen out for the cute little noises she makes as she splats fruit on the screen.
Today, Tuesday the 27th, is The Big Give. Anything you donate today will be doubled. Rett UK will be supporting us as we and other parents and children with Rett Syndrome learn to communicate (give here). Reverse Rett are pushing research for a cure where gene therapy will potentially unlock Rosalie's body and reverse the devastating symptoms of the syndrome (give here). You can see more in the video below.