The eye gaze device has given girls with Rett syndrome a voice that they can control.
They get to intentionally choose what they want to say; it’s not interpreted by a parent or a carer.
Some girls with Rett syndrome have always been able to communicate, but it’s rare. Rett syndrome blocks so many communication avenues that it makes it practically impossible.
For the first time in Rett syndrome the playing field is being levelled. The eye gaze device is allowing more girls to access a voice, something that has long been denied to the vast majority of girls.
Getting your mind around the eye gaze device is hard.
The hard part is understanding what needs to be done to help your child communicate, and building the screens to do it. There are also time commitments and the stubborn need to stick to routine.
Yeah, you know this…so what’s the point?
I think the most important thing when I talk to families about Rett syndrome is honesty.
Honesty is very often lacking in our discourse in this community, not intentionally, often because the truth hurts and nobody likes to pile hurt on.
Although sometimes we might be too honest, but that’s another story.
So let’s talk about this.
My advice (which will be controversial)
- Raise for an eye gaze device before anything else
- Raise more than the cost of the device.
- You are the gate keeper.
- Don’t stop at low tech
Eye gaze device first
The first thing you should raise money for when you get a diagnosis of Rett syndrome is an eye gaze device.
It is one of the most expensive things you will be raising for.
For many people the first time you raise money will be the most you ever raise, by a considerable amount, if you give that money away to another cause (however worthy) you’re going to struggle for a long time to raise that amount again.
Don’t get suckered into distant promises, attend her needs now.
It’s more than just hardware.
When you get it, you will need to learn how to use it.
Make sure you add money to your raise amount which will cover local conferences and/or access SLT’s or organisations that can support you. There are also online courses that are designed to help you. Don’t be shy to do this. Otherwise your brand new eye gaze device is just an expensive paper weight that will generate a ton of guilt.
When someone tells you she is too young, she has to prove competence, blah blah blah, tell them get stuffed.
That’s like saying don’t buy your child books until they can prove they can read.
Quite frankly it’s bullshit. Don’t let people stand in your way to giving your child a better quality of life.
There is no such thing as too young.
Yes girls regress in Rett syndrome, but childhood is also the most vital stage of learning for children. Whilst she might be going through regression, or just have gone through regression, her brain is in a chemical state of hyper learning.
Don’t lose this vital opportunity to take advantage of those chemicals. You need to burn pathways in her brain and this is the best time to do it.
Treat the eye gaze device like you would learning a new language, the earlier you start the better.
That said, it’s proven that girls with Rett syndrome never stop learning. She is never too old to access these devices. The older girls already understand, so they’re going to pick it up faster than learning a new language.
You are the gate keeper.
The eye gaze device is not easy, it’s as big a learning curve for you as it is for her. You are going to have to invest time and make a commitment to training yourself.
Not just in how an eye gaze device works, but what are the best methods to use it. Then once you are trained, you are going to have to FORCE it into your routine.
You are the gate keeper to her potential.
I realise that a lot of parents have to live with the guilt of feeling like they have to be a super person, and I’m truly sorry that you are in this position. I get it, it’s hard. It’s turned your life upside down.
Some people are going to have a go at me about how difficult this is and how I don’t know what it’s like to live with the torments of Rett syndrome on a daily basis.
You’re right, I don’t, I have no idea what it’s like.
It’s easy for me to say that the changes you make now will make a fundamental difference to your life in future and more importantly hers.
Ultimately the responsibility for this decision lies with you, because you are the gate keeper. You choose whether to open the gates or not.
Don’t stop at low tech.
Low tech is incredibly useful to establish things like a clear “yes” response; it doesn’t run out batteries; it doesn’t explode when it gets wet. But low tech is also an interpreted voice.
It relies on someone interpreting intention.
Which is very different to her controlling what it is she wants to say (even if the boards on eye gaze device are augmented). *I’ll let Jo explain later 😉
If you truly want to give her a voice, then invest yourself in the needs of the eye gaze.
Alternatively you will find yourself settling for something that will ultimately be a source of frustration. Until the eye gaze, low tech was the only recourse, but now you have the ability to take this a step further.
Once again, don’t let people stand in your way to giving your child a better quality of life.
About eye gaze devices
There are a bunch of eye gaze devices available and people often ask which is the best device to get.
In my opinion the best device is the iSeries+ from Tobii Dynavox, there are various other devices. but you will always find yourself yearning for the iSeries.
The other models like the PCEye Explore will only ever prove competence (a pet hate of mine) and PCEye Go is a great supportive or mobile device. If I was a parent though, my end goal would be an iSeries.
It’s an expensive beast and it’s up to you whether you want to compromise on cost; the EyeGo is substantially cheaper.
Why do I hate the “prove competence” statement?
Because it’s essentially bullshit and an argument people use to block girls from accessing something that should be provided without question. Competency testing is a crutch for asshats to deny voices to people, under the guise of it looking like it’s a “considered process”.
When you watch girls expressing themselves on eye gaze devices on the internet, they are not lucky, they are not lead or pushed in that direction. These girls are responsible for their decisions on the eye gaze, they are in control of what they say.
The faster you learn to accept that statement the easier this process will be.
Simone (Jo’s Mom) says [highlight]“If I don’t believe in her, who will?”[/highlight]
Believe in her. Believe in her ability.
The importance of literacy.
David Koppenhaver spoke about the importance of literacy in a Webinar about AAC (Augmentative and Alternative communication) last year. How (AAC) users can never truly express themselves unless they have not only the ability to read but to write as well.
You can have 100 pages of symbols that you understand but if the words you want to express aren’t there you’re in trouble.
This is only the first step in enabling our ambitions for people who suffer with Rett syndrome, we have an end goal…literacy.
“Kind of a big deal”
I’m incredibly lucky to be friends with a very special young lady on Facebook, who uses this technology to voice her fabulous sense of humour and her incredibly astute observations from her perspective.
In a very short time Jo has forced me to question how I perceive Rett syndrome and how I treat people with Rett syndrome.
This is what Jo (who incidentally has Rett syndrome) has to say about AAC.
A lot of people have been asking me what my opinion is on having a device be phrased-based instead of selecting or typing out individual pictures or words. I believe there is a time and place for both.
My software allows me to save and memorize sentences and words as I type.
I decide what “phrases” are readily available for me to re-select.
This is no different than the auto predict on your phone, used to quickly type something.
A communication device is not intended for you to hear me say what you want to hear. It is meant for me to be able to able to express myself freely. Unless you are a mind reader, how do you know what I want to say? How can anyone predict every single thing someone wants to say?
If I only have the option of selecting pre-made phrases someone else has written then I am only independently choosing what you think should be said and not what I want to say. BIG difference!!
Having certain sentences close by to quickly say in a hurry – great. Being subjected to your opinions and not being able to express myself authentically – not cool.
Just my opinion….
Thank you Jo, your opinion is gold 😉
I’m sorry it’s taken so long for me to blog, as some of you know I’ve recently started a new job. I was meaning to write this blog a long time ago, but sometimes life happens 😉