I know many of my articles are about the importance of communication, so I am continuing with this theme but from a different angle.
I wonder if the beautiful words I am going to share will influence the way you express yourself and you may consider a little more, the effect of your communication and the way your communication is interpreted. Ask yourself, how does someone who has difficulty with their communication express how they feel and tell you what they want you to hear.
What a lovely surprise I came across today, as I sorted through some old papers, I am so pleased I am one of those people who do like to ‘hang on’ to things!
I came across this beautiful poem.
Written by Vera in the 1980’s, from the perspective of her granddaughter Laine. Laine at the time was a pupil in my class.
I recall Laine as a beautiful soul, whose eyes were one of the most important ways that she communicated with us. A young lady with Rett Syndrome and additional and complex needs. Rett Syndrome (RTT) is a genetic brain disorder which typically becomes apparent after 6 to 18 months of age in females, it is a rare genetic disorder. Classic Rett Syndrome, as well as several variants with milder or more-severe symptoms, can occur based on the specific genetic mutation. Visit the website to read more www.rettuk.org
I feel so privileged throughout my teaching and reflexology career to learn so much from the many young people I have worked with and from the families I have supported and now continue to support with the FRT rainbow workshops. How I would have loved an understanding of reflexology, the many benefits of positive touch and Functional Reflex Therapy in the 1980’s! But it was the experiences I gained then, and my learning since, that helped me to develop the framework of FRT in this decade and to be able to share and make a difference now.
The crinkled, slightly discoloured piece of paper I unfolded today had words typed on an old-style typewriter even has a little Tipp Ex to correct a mistake.
How the memories came flooding back, I remember all my colleagues shedding a few tears when we read it together all those years ago, at Valley School in Bramhall, Stockport and I must admit to welling up a little today. It brought back some smiles as I thought about all my colleagues and one in particular, who I taught with, that I’m going to see in a few weeks! That is exciting. I think I will take the poem along for her.
It made me think about the many children I had supported in the best way I knew how to but also the gratefulness and importance that families put on the work and input from the team around their children.
Perhaps as you take time to read through these wonderful words, think about the importance of being able to communicate and the value of being able to express your thoughts, your desires, your ideas, your grumbles, your satisfaction, your pain, your happiness, your anger, your worry along with and many other emotions! And consider strategies and methods of communication you may be able to put in place to create a meaningful exchange
Through the Eyes of Laine
I wish I could tell you what I want to say
I long to say “thank you” for making my day
With all the kind things that you think of to please
Your thoughtfulness. Knowing the things that I need
I find it so hard to be able to do
All those things that I used to do
My heart is so willing, but my legs seem to take me
Round the wrong way, Oh! It does aggravate me
Sometimes I feel worried and sad for a while
Then I search for your face and you give me a smile
A smile I can read that says “don’t be afraid”
You gently assure me and then my tears fade
There are days when I giggle and beam with delight
Everything seems happy, carefree and bright
Days filled with music and the songs I adore
Relaxing with stories and cuddles galore
Although I’m called Laine, I often hear
Mum call me her “angel”, “my precious”, “my dear”
Her “darling” her “beauty” and her “treasure” too
What I think she is saying is “I love you”
When we’re all alone I often hear
Her talking to someone who seems very near
She calls Him her “Father” or “God” or her “Friend”
She sings of his faithfulness and love without end
He sends along people to help her to care
Folk with compassion, understanding, love to share
I speak with my eyes about all that I see
I want to say “THANK YOU” for caring for me.
Thank you, Laine and thank you, Vera x
Blog Post Update
After I published the blog above it opened a conversation with the Rett Syndrome organisation, which has helped bring ‘me’ up to date and I thought it would be useful to share this information you.
I originally wrote – The disorder causes severe cognitive, motor and language problems and autistic behaviours. Which I have now removed.
When I think back to my early years of teaching pupils in the 80’s and 90’s with Rett Syndrome, it was thought at that time that the disorder caused severe cognitive, motor and language problems, but as we have moved on with research and technology the truth is that ‘we do not know’ and the Rett Syndrome organisation no longer say that someone with Rett Syndrome has severe cognitive issues until they are provided with a language system and taught how to use it so they know.
With the new technology that is available, and some may have the opportunity to access and use in their daily lives, communication becomes a lot more accessible, meaningful and effective.
The Rett Syndrome organisation have provided me with suggestions of recent papers Clarkson et al 2017, that show a range from near normal development to learning difficulties. As well as the 2017 paper that adapted the Peabody vocab test for use with eye gaze. The lovely comment from the organisation is that as people are becoming more aware of AAC (Augmentative and Alternative Communication) and the amazing abilities of people with Rett Syndrome, the future is looking much brighter. So, I look forward to reading these articles.
Of course, with amazing technology comes funding issues and getting access for those that need it. The Rett Syndrome organisation do run training for families and professionals with opportunities for families to borrow equipment (all free of charge), so they can build up evidence to help with funding requests. Do contact them if you would like more information at http://www.rettuk.org/
For more details about the next Rett UK event please visit: https://www.facebook.com/events/2005592816161424/?ti=ia This will be repeated this year in… South (around Chichester) – May, Wales (around Cardiff) – July Scotland- September, Herts, beds, Bucks- November
The beautiful words of the poem I have shared, remind me how far we have come and why it is so important that everyone who needs to should have access to communication aids, so they don’t feel like the poem reads. Here is a link to show why it is so important to get access to communication aids.