Emails from Becky, mother of eleven-year-old Isla, that made my heart truly sing!

Hi Sharon,

I wanted to reach out to you to tell you the life changing discovery we had a few weeks ago with our 11 year old daughter. I recently joined the teach us too course that you led where you shared your modified reading test. I’m not sure if you remember me but I think I was the only parent on the course, most of the attendees were professionals working in education.

Following the course I tried presenting Isla with the reading test, but wrongly I presumed she would only be able to recognise words on the first few pages as I thought a lot of the words she would have never been exposed to. She did pick out a few of the words accurately on the first few pages and that’s when we realised that there was more going on inside her head than the world had given her credit for. After that I went down a few rabbit holes looking for literacy programmes we could use to teach her to spell as a way of communicating.

A few months prior to your course we had also completed another one of teach us too’s courses for children with PMLD, and from that discovered she could pick out every letter of the alphabet which was news to us! We had also discovered Gestalt Language Processing and had found this information to be absolutely life changing as it seemed to explain everything about the way she learns and why she is so motivated by music and tv programmes which she watches on repeat. We had started to piece together the puzzle and realised many of the tv programmes that she loves have a story line about not having a voice, being cursed and unable to sing, tangled, being locked away in a tower searching for who you are, Finding Dory, searching for yourself. The list goes on!

I then stumbled across the film ‘spellers’ and found lots of information about non speaking individuals who can in fact spell on a letter board despite having no speaking skills. One of which I know you shared a video on your course. I found this really inspiring and thought I would just test Isla to see if she could spell simple words. At first I was spelling them out first and she was copying me.

But then over the course of a few weeks we discovered that she has been listening and learning her whole life! She has profound language skills but has been trapped in her body, with all the thoughts and dreams stuck inside her head with no way to communicate them. She has had an AAC device for 7 years and has never been able to use it as a reliable way to communicate. I realise now that the symbols and words were so limiting and it was never what she really wanted to say. I have switched her AAC device to the keyboard setting and she is able to very slowly type out her thoughts and ideas.

This has been truly life altering for us all! To know that she has been in there all this time but that her body doesn’t cooperate with her brain is just incredible and heartbreaking all rolled into one. We have always been told she has a learning ability of approx 2-12months. The world has completely underestimated her ability, like Johnathon. She has a lot to say.

I had to reach out to you to let you know, and also to thank you for the work you are doing advocating for non speaking individuals. If it wasn’t for the courses that we completed through teach us too I’m not sure we would ever have discovered her ability to read and write. The world has a lot to learn and needs people like you to share the knowledge.

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I can’t explain how life changing it has been to discover this. For a few days I honestly felt like it was all a dream and any moment I would wake up to realise it wasn’t true. I always felt she understood more than was able to express but never imagined she was as intelligent as she is.

Her words are so deep and powerful. Some examples of what she has written so far. 

‘I am capable’

‘I know everything’ 

‘I am a beautiful person who has everything that I have dreamed of’ 

‘Seizures take all my happiness’ 

We asked her why she loves being on the swing so much? ‘I feel free’ 

‘I get worried about when people don’t talk to me, they ignored me’ 

‘Can I find myself and I have friends’ 

‘I am having fun Libby, this is brilliant’ 

‘I think we should go out to a different place, we could go on an adventure’ 

What’s your favourite thing to watch? ‘People talking’ ‘helps Isla know how to spell’ 

We may have days when we doubt our path, wonder if the things we are doing are making any real difference to the people we care about.  I've had quite a few of those recently.  So I would like to say 'thank you' to Becky for sharing Isla's success with me on just such a day! Your words, and Isla's words, made my heart truly sing!