Meet Tom

Meet Tom

Tom is a very cheeky, happy, chilled out 8-year-old boy who lives at home with his Mum, Dad and golden retriever. He has a very rare condition that affects his ability to communicate verbally.

Tom and his carer Megan would like to share his journey with eye gaze. Keep reading to hear how they got on when Tom was introduced to Augmentative and Alternative Communication (AAC).

Starting out

Tom can communicate to those close to him through facial expressions and sounds. We have been looking into ways for Tom to communicate to the entire world around him as we believe he has so much to say.

Back in December 2016 Tom started to use switches to activate toys with buttons. After one month he was so confident using them we were worried he would start to get bored, so we searched for something to further develop Tom’s communication.

We tried an eye gaze system and Tom flew with it. We started with the games, which was great at first as it taught Tom how he could use his eyes to control the screen. We still wanted more for Tom and knew he had more in him.

Finding the right software and device

Every year we go to the Kidz South exhibition to keep an eye on what’s out there. As Tom learns and develops there is always something new for us to try. In 2017 we came across Smartbox – an encounter that changed all our lives in a way we could never have expected.

Jay from the Smartbox team came to see us and showed us everything there was to know about Grid 3 software for communication and more.

We also fell in love with the Grid Pad 12. We could see this would give Tom so many more opportunities to communicate with the world outside his home. Grid 3 would give Tom the ability to share his thoughts and feelings in a way that all could understand.

Once Tom’s new Grid Pad 12 arrived he went from strength to strength. We work hard every day to ensure that Tom has enough time to practice his eye gaze skills. This is by no means a fast process. It has taken a lot of time to get to where we are now and the main thing to remember is to have patience. Everyone is learning and it will take time.

Getting started with AAC

We started with the Super Core Learning grids, making sure they were on the screen whilst we were doing an activity. At first Tom explored all the language in the grid. Although the words didn’t always make logical sense, the important thing for us was to always respond to what Tom was saying.

For example, if we had just begun a messy play activity with Tom’s feet and Tom says “wash” and “feet”, then I would explain to Tom that we will wash his feet after we finish the messy activity. We always make sure to give the language Tom uses some context I always wanted to make sure we gave the language Tom uses context.

It’s also important to demonstrate the language to Tom. As I was playing with Tom, I would model the language to him and show him how I use it in a sentence. Over time this has given Tom the confidence to use vocabulary in context. We don’t always get it right, but then we laugh and have fun with it.

From here we just kept on going, introducing Tom to new language and letting him explore. I think it’s important to say that we were all learning this at the same Tom and it was very overwhelming for us all. We went by Tom’s lead. When something was just a little too hard, he would let us know and we would take a step back and try again at another time.

There isn’t a right or wrong way to teach someone how to use AAC, so long as you are aware of when someone is struggling or finding something too easy. I found it was important to make sure that we push Tom. If he found something too easy, he would quickly lose interest.

Where we are today

Tom is now at the point in his communication journey where he can link 3 or 4 words together in a sentence, which is so incredible. We can do so much more with Grid 3, and it has given Tom a voice that can be heard by the world.

We have come so far, and we are all extremely excited to see where things take us in the coming years. The important thing to us is that Tom has no limitations. We will support him with everything he wants to do.

The amazing thing about Grid 3 is that the possibilities are endless. Even if there isn’t a readymade resource for something we want to do with Tom, it’s easy to design and make one ourselves. At Christmas we were going to the pantomime so we made a grid where Tom could join in with a “boo”, “cheer” and “he’s behind you!”.

Tom is continuing to learn and develop, and he amazes us every day with how quickly he can learn new things.

It’s an honour and a privilege for us to be supporting Tom on this journey. For us to be able to support Tom we rely on the support of Smartbox and if we ever get stuck or have a question, we know they will get back to us. We are incredibly excited about his next steps and we will be sure to keep you updated on his progress.

Keep up with Tom’s journey

Megan and Tom have a fantastic blog, where they share everything they get up to – from wheelchair friendly outings to sensory and messy play. Have a read if you want to hear the latest from Tom, or are looking for ideas and ways to have fun whilst learning.

 Megan and Tom’s blog