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:
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.