Believe in me, like I believe in you.

Rett syndrome education and how it’s helping us all.

We all believe in the potential of our children; we all hope that our child will achieve something meaningful in their lifetime. We also have different ways to measure success, and sometimes it’s incredibly hard not to pressure your drive for your child’s success onto their shoulders.

Children with Rett syndrome are no different. For a long time parents have been saying “You’re under-estimating her, your understanding of her intelligence is wrong.” And at last we are slowly getting the proof that we need.

Products like the eye gaze from Tobii are not only bridging the gap in communication between Rett syndrome and the world, they are also allowing us to more accurately prove intelligence. These devices are not the only thing making the difference; it is the belief of Educationalists and Speech and Language Therapists like Susan Norwell and Sally-Ann Garrett that are pushing the boundaries of our perception. As our learning and teaching techniques get better, it drives change in the base. The acceptance of that change is sometimes slower than anticipated or hoped, and we are left dealing with the legacy of old experience and beliefs.

Steve Kaminsky believes that we can’t measure the intelligence of people with Rett syndrome right now, because we haven’t developed a method to do it properly. So right now, anything anyone is telling you is based on limited knowledge and even more limited techniques.

This created a problem for any of the older parents and girls, who’ve not only had to fight the symptoms of Rett syndrome, but have also had to deal with the lack of faith in her intelligence.

The fact is, the more we get to crack the prison of Rett syndrome, the more ability we discover. We’ve also learned recently that Rett syndrome doesn’t stop people progressing, and that they keep learning after regression has passed. Focus on what we are learning, not on what we used to know.

This is something the internet can change, and not just the internet, organisations too. Which is why I want to talk about Rett Education UK and why it’s so important to our future as a community.

Education drives change; it drives change in belief and understanding. It creates new understanding, changes perception and sets new expectations. As a community, we fight to change the perception of Rett syndrome on a daily basis, but great education enables group change, and massive shifts in thinking.

Part of the problem we have in Rett syndrome right now is awareness based.

This is not just the awareness in general of Rett syndrome, but more importantly the conservative and stagnant knowledge built on old information from before a time when we could access just a little bit of what people with Rett syndrome are capable of.

Not only are we educating the world about Rett syndrome, but we are re-educating the people who should know.

I don’t blame these people for not having the latest information, because really the onus should actually be on us to change this. Rett Education UK is doing that; they are focussing on change at a professional and family level.

Let’s face it, very few people can access all the latest and greatest stuff out there. Staying on top of Rett syndrome is a full time job, so when an organisation like this comes forward and shares knowledge for “everyone”, then this is a good thing. Personally, I can’t thank them enough for it.

At a time when our professional pool is shrinking, we need to be taking the best possible care of the people who can help us.We need to be getting them the most current and the best information we can, to make sure our girls are getting the best possible treatment all the time.

The feedback I’ve had from the Birmingham Rett Education Event last year was incredibly positive and I’m thankful that an organisation, made up of people who are clearly passionate about this, have taken it on.

Rett Education Conference 2015

This years Rett Education conference shares the weekend with RettUK’s family weekend, the whole event is covered here, and I thoroughly recommend it.

The Rett Education conference is at the Hilton Hotel in Northampton during Friday 9th October, 9am to 5pm, with its focus on communication and education.

Tickets for the Rett Education UK day are available from their web site at a cost of £79.

Speakers include:

  • Susan Norwell – inspirational and informative presentations on education and communication topics.
  • Dave Hewitt – importance of intensive interaction as a communication strategy
  • Hector Minto and Kim Elliot – will be explaining many aspects of eye gaze technology and describing its benefits
  • Sally Chan – funding for eye gaze equipment.
  • Shonette Bason-Wood – is an early years (EYFS) motivator and international educational trainer and motivator.



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