Rett Education

The legend of Susan Norwell: what she taught us…….

 

I am so proud to be a part of this event. The first Rett education conference will take place in Birmingham at La tour hotel Friday 11th July (professional day) & sat 12th July (parents day).

 

Can you even imagine not being able to communicate your needs, being trapped in a body that continues to fail you & not do what you want it to do. This is the reality for my  little Olive & all those suffering  from the cruel symptoms of Rett Syndrome. This is why we have worked hard to bring this conference together.

We were very fortunate to travel to a world conference in March 2012 organised by IRSF. We heard the good news that research is very much progressing & many scientists/researchers, charities & organisation’s are working tirelessly to fund vital research that will hopefully one day bring treatment to the doorsteps of those families & children that so desperately need it.

This is also where we learnt that girls with rett syndrome are smart, they have good brains & they want to engage, be included & learn. It was at this conference that we had the  privilege of listening to Susan Norwells workshops.

This was a pivotal moment in our journey with rett syndrome.  We were both enthused with hope & aspiration for our daughters future, we were given a torch to guide us.

We ventured back to the uk, feeling so energized.

It has been a tough few years, dealing with Rett syndrome was never gonna be easy, watching your daughter become more & more trapped in her body is heartbreaking. Trying to convince the professionals that  more that can be done to intervene & support Olive has been exhausting. However we are somewhere closer, closer to giving Olive more opportunities, closer to building therapeutic intervention into our lives, closer to sharing the good news. Today Olive is more engaging; she is very much alert & included.

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Today we feel very much supported by her therapists & we know Olive feels much more understood.

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Susan Norwell was able to give us communication strategies that really do work. Rett Syndrome is so devastatingly debilitating  & affects every child differently. However with the right support at the right pace, these girls can be more understood, they can be more included & they can learn to show us who they are. Susan really helped us to understand APRAXIA & how it has manifested itself in Olive.

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This is what Rett Education is all about, sharing  the good news, sharing  the wonderful knowledge of Susan Norwell about how to support a family & child with living rett syndrome.

 

 

 

 

Please click on this link for more information & how to register,  share with your family & therapists…………….We hope to see you there………..

I am actually Here

We have been on a steep learning curve in the last 2 1/2 years. Learning about Rett Syndrome & watching our daughter regress. Rett Syndrome is a severe movement disorder. Girls & women who suffer from Rett Syndrome are living trapped in their own bodies.

Too many times people talk about Olive like she can not understand or isn’t there.  I just wanted to point out that Olive is listening, she is very much present, but her body does not allow her to express herself very well at all, this is not because she doesn’t want to or because she in not trying. Olive requires tons of attention & support to see her through each day & help her play,  communicate & engage with the world around her.

The other day at school a fellow mum said she had read this post about Olives talker & asked me how it works. Thankyou so much Helen for taking the time to ask me.  I am so happy answering any questions about how Olive communicates, just e-mail me: janie@olivebeaumontfoundation.co.uk.  I really appreciate it when people want to learn more about Olive & how she is learning to communicate.

So for the record:

  • Olive has good hearing
  • Olive is understanding you
  • Olive suffers from severe Apraxia
  • Olive is a typical nearly 4 year old with a severe motor disorder
  • Olive has feelings

Please do not feel awkward with Olive & please respect her.  She wants to be included & loved just like any other little girl.

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Tobii talker & update….

A family member asked me if Olives talker/Tobii was a tape recorder. So I though It would be useful for me to post a video here of Olive using it. ‘family member’ if you are reading please please do not feel bad for asking this, I appreciate your honest question & I am sure a lot of people will feel better informed after watching the videos below. The first video is of me asking Olive if she would like to talk, I am kinda using a method called intensive interaction. The second video is combining a few communication methods. We  use symbols, partner assisted scanning, auditory scanning & of course, her talker which is a tobii I series device. All of these modes of communication that cross over & can be used in the same conversation as you can see some being used in the video.

I will not be posting this year very frequently, Linking back to my previous post about making space to our life to allow us to use Olives talker, we really need to slow down to allow for that to happen. Then also linking back to my new year post, to allow for more peace in our life.

I warn you the videos are not embellished, they are RAW, authentic & real, Olive was off sick from pre-school with a cold, so she is a bit snotty & we are both undressed & unwashed……hence why I am trying to stay out of the frame……I mean in our PJ,s…….  thats just the way we roll these days sometimes….

The second video is a bit long, but if you really want to learn its worth watching & appreciating how beautiful it is to be able to connect with Olive like this, she does such a wonderful job & I am sure you will agree she is adorble.

Sorry I am not writing more about the communication methods we are using, but hopefully if any parents or profesionals  need to find out more the links will help. Susan Norwel has recently launched the rett university which will make her great teaching skills accessible to everyone worldwide via webinars. Also hopefully this July Susan Norwell will be here in person to present at a communication conference.

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The reality of using a technical device/Tobii for communication

Olive is pretty early in her journey of using a technical device to communicate, I am writing this post to help me conclude where we are at & set goals for our approach & strategies to use it effectively this year.  It may also explain very briefly some of the issues involved in setting up this type of communication device for a child with Rett Syndrome.

I wanted to stress that we are so aware of the importance of Low tech communication strategies & these should never be overlooked.  Olives strategies.:’eye gaze’, ‘low tech symbols’, partner assisted scanning & auditory scanning are an integral part of Olives communication repertoire.

We have been so impressed at how well these modes of communication work for Olive when she has a communication partner that ‘gets her responses’ & knows how to interpret them. Also these modes of communication can go anywhere & are the most reliable form of assessment.

 

However we identified that these modes of communication will never allow her to have total autonomous communication.  To expand the possibility of Olive learning a language that will possibly give her a chance to have autonomous communication in the future we have been working on using a Tobii I-Series device for approximately 5 months now.

 

With the expert help of Susan Norwell, Olive has a vocabulary set on her talker (this is the name we have given her Tobii device, as it makes sense that these images on there are her words) that is motivating to her & relative.  Olive has several people that are learning to use her device with her. We have learnt about the concept communication partners for any child or adult that is non-verbal, it is vital that they have numerous communication partners that understand the persons modes of communication & be that bridge to help people understand her & model the language on her Tobii for her. Just like we would need an interpreter if were surrounded by people that were speaking a different language.  It is invaluable for Olive to feel included, this can only happen if she has a communication partner present for her when she wants to communicate. But what has become apparent is that Olive needs people that will commit to her long term.  Something we are continually working towards for her.

 

Olive’s communication strategies require ongoing evaluation & assessment & sharing of information between all communication partners.  Susan set up a great WIKI for Olive that allows for this to happen.  However this is only effective if everybody uses it frequently.

 

Olive’s talker also needs to be ever changing & evolving to match her needs as she grows, learns & meets new people. It is vital that Olive has up to date news about what she has been doing so she can chit chat to her family & friends.  This is a challenge in itself; learning to build this extra work into our life & set ourselves realistic goals on how we can achieve this will be an essential aspect to the success of the communication plan & imperative to creating a learning enriched environment across all settings for her.

 

We also need to assess times when it is suitable to allow Olive to have access to her talker in both school & home. Allowing Olive access to her talker at all times when it is feasible.

 

One of the reasons I am writing this post is because as we come to the end of the Christmas holidays, I have felt an overwhelming sense of guilt that I had not allowed Olive to have enough access to her talker.

 

Moving into the new year I am hoping we can create an environment & circumstances that allow the capacity for that to happen.

 

In times of social gatherings, it’s so easy for Olives extra support to subside as my attention is taken away to plan & prepare for guests coming & its hard to be in two places at once.

 

This got me thinking about how we can be realistic at times like this & how much time do we need to allow Olive access to her talker to give her the maximum opportunity to learn to use her device autonomously in the future.  So as part of my new years resolution. Applying this prayer to all aspects in  our life as written in the previous post:

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I am setting realistic goals based on advice from the teachers & experts.

Defining what goals are appropriate for Olive to use her talker/Tobii & how can we realistically make that happen?

 

Here they are:

 

  • Ensure Olive has daily access to her talker/Tobii, at least 3-5 times daily

 

  • Use WIKI weekly to share information

 

  • Ensure Olives talker is updated weekly to reflect needs- expand her news weekly

 

  • Ensure at social gatherings a communication partner is allocated to Olive for part of the gathering to allow her access to her talker & share news with others.

 

  • Put Olives vocabulary page sets on her I-pad to allow more immersion into her language in situations where her Talker can not be accessed.

After having a little meltdown & feeling very overwhelmed with work for Olives talker, Sean Carroll from Sensation CTS Ltd kindly gave up his time today to help me get Olives talker personalised & up to date with all her favourite people, food & activities. So I am feeling thrilled that we can move forward into the new year with hope that we can help Olive to learn to use her talker more effectively & in the process learn more about our beautiful daughter.

 

If anyone reading knows of other strategies that have worked or are working for a child, we would love to hear about them.

Happy New year 2014

With the help of some very dedicated friends, we have already started planning three fundraising events to raise money for Rett Syndrome Research this year.

James Brown has kindly  taken charge of the Olive Beaumont Foundation web-site, he has been a great support for us last year & kindly does all the updates on the web-site for us.  We will be getting all the up to date information on there so please keep posted for the dates. If you need any further information or would like to get involved please contact James Brown: james@olivebeaumontfoundation.co.uk.

I never usually make resolutions at new year, somehow they feel a little unnatural, adding extra pressure to your life can not be a good healthy thing, however in a fashion I am going to this year.  Something hard I was trying to practice last year was having peace in my heart, my friend shared this prayer with me & it stuck right me literally.

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I always try to practice this now, there are parts of our life I can not change, there are parts I wish I could.

To find peace in my heart is my ultimate goal, towards the latter part of last year I can say that this started to come easier, to find peace in my heart I have had to learn to accept the things I can not change.

In 2014 my resolution  is to practice this in every area of our life, to spend energy on the areas of our life that fill the clement of our hearts with love.  To live every day like it counts….

Will you join us?………