Leia’s literacy journey

Like many children Leia’s literacy journey began with bedtime stories and being read to. However, the journey wasn’t entirely conventional. Leia was hyperactive, books would be destroyed or thrown so she got less access to them. She didn’t have a way of communicating her thoughts so couldn’t ask questions or comment on books. She also didn’t have the motor skills to engage in meaningful mark making or scribbling with pencils. In her favour Leia did always have a good understanding of spoken words and could respond using a consistent yes and no. She also liked sticking things and was able to pick things up and place them where she wanted to. 

Leia had some input from a home teacher pre-school. They mainly worked on teaching concepts such as in, on, under. She had phonics instruction at school, but it was hard to know if she knew the letters when she couldn’t write or say them and a lot of the time she liked to “follow her own agenda” as countless report cards said. She never moved on past learning letters of the alphabet, and each school year seemed to start at the beginning again. She was never consistent enough with her work for the teachers to be confident enough to move on.

When Leia was in primary 4, I attended a conference which led us on a life-changing journey. We learned how to introduce communication in a way that was most likely going to lead to success and comprehensive literacy instruction. If you are looking for further explanations on comprehensive literacy instruction, please look at Jane Farrall’s comprehensive literacy and the Centre for Literacy and Disability Studies  websites. Also the Shared Tar Heel Reader site for reading instructions.

We introduced guided reading, alphabet and phonics instruction, and using an alternative pencil to write letters. At the time Leia had a great team in school, and they implemented the same methods. Here is a link to a video of Leia and her brother doing some extension guided reading work.

Leia made good progress early on, but she became stuck at a transitional level for a long time. It was very hard to say if she knew most of the letters most of the time. After a change in school team, we decided to get a tutor at home. Leia was able to show that she could read sentences by sticking the correct sentences underneath pictures.

This was 4 years after we had begun our journey in earnest. We were still struggling with consistent spelling. Like many people with AS and other disabilities Leia was consistently inconsistent. She wrote QRAYZ to describe her brother and then nothing for a long time.

I went back to university and studied a PGCE in Complex Communication Needs one of the courses was specifically on literacy. We had lost the great tutor but had started an online literacy class. Leia wasn’t getting great input at school, but we were still trying to improve literacy. Then one day I noticed that she had chosen all the letters for the word Scotland, but not in order. After this we began to put the letters, she was choosing round in a circle, and she could very quickly choose them in the order she wanted to. She wrote this to describe Gangsta Granny, who is a jewellery thief if you are not familiar with the story. This was now 7 years into our literacy journey.

This is a video of her spelling the word vaccination with the same method.

For further Gangsta Granny work she had some reading comprehension and in this video she chooses the correct option after reading them.

She remains at her online literacy class and has produced some great work. Until earlier this year she was still using an alphabet flip chart, but she was not enjoying the process. I cannot remember why I tried doing this, most likely sheer desperation as literacy class isn’t always a harmonious time, but Leia makes choices by us assigning the choices to a particular finger and then she chooses the finger she wants. I combined this with her spelling, and she was suddenly much more engaged and faster when she was writing. She would more often spell in the correct order too. We also introduced using the predictions on her talker keyboard as I was now more convinced that she was spelling in the correct order and it wouldn’t get it frustratingly wrong for her.

This video shows Leia writing a message to her friends to thank them for their lovely messages of congratulations for her presentation at Communication Matters earlier in the week. Writing is a slow and frustrating process for Leia (and her communication partners) but one that we all believe is one that is worth preserving with.

In the video you can see us offering 5 fingers each representing one of a,e,i,o, and u and then the corresponding letters such as i,j,k,l,m, and n, and Leia pointing to the finger she wants. Sometimes we need to offer further options for offering letters to help keep her engagement levels up. This is sometimes a treat for the dog that she can give when she chooses the letter or any objects that are lying around.

As can be seen in the video sometimes she makes a mistake, this is sometimes seen by additionally frustrated behaviours or by a lack of interest. However, it can be difficult to tell those apart from general dysregulation that is going on. We usually have something on in the background to help with focus. You can see in the video that she clearly changes her mind about the letter z.

In the video when being offered predictions from her keyboard she gets distracted as one of the words has a picture of a dog. This is not a common distraction with predictions but distractions are common. It is up to you to get focus back as well as checking if the correct word or letter was chosen when they were distracted.  

It is very uncommon for Leia to use handwriting as she does in this video, but it does show that you need to be prepared for anything when writing with someone with Angelman syndrome.

Lastly, whilst Gordon does a tremendous job you can see that he misses the n that Leia wrote. This is a good reminder that writing using alternative pencils is a skill for both the person and their communication partners. Leia can write with many different people that is another skill as we all do it slightly differently. For example, I wouldn’t have offered an ending as Gordon does here. That is not to say that his method is wrong, just pointing out the differences between different communication partners.

There is still work to be done. It would be ideal if Leia could become more independent with her typing and finding suitable keyboards is our next task. Leia has a unique writing style and a very good vocabulary. I hope she maintains that as she continues on her journey. For the moment please enjoy her first ever presentation that she delivered in person at the Communication Matters conference in 2025.

Wherever you are in your communication and literacy journey. Keep writing!