My son Jesse is a delightful little 6 year old boy. He makes up our happy family of four, including his doting big sister who is 8 and not including our old cat who is a ratbag with a mind of his own!
Jesse has cerebral palsy which effects every aspect of his life. He is non verbal and has limited motor skills, he is peg fed and he has epilepsy. He requires a great amount of support to help him participate in all activities across all areas of his life.
Jesse’s more formal communication journey started with him using a PODD book with partner assisted scanning. This was a great place to start, Jesse became familiar with the symbols in his book and started understanding that those little pictures have meanings and that things happened when he selected one. We modelled this system with Jesse for a long time, however it was often difficult to interpret Jesse’s signals (making a sound or nodding and shaking his head), we were never certain that we were understanding him correctly (and it would have been impossible for people who didn’t know him very well, to communicate with him). It also meant he relied on someone to bring him his book before he could tell us anything!
Jesse has now moved on to using eye gaze technology. This has been a real game changer for Jesse and for us as a family. He has picked it up very quickly and is using it to play games, read books, complete school learning tasks and he is exploring using it for communication. This has allowed Jesse an independence that he has never experienced before. He can select activities, look at books, play simple games. We hope that in time he may be able to communicate more concisely with us without having to rely on someone interpreting his sounds or head movements. He would be able to be clearer in what he wants with many different communication partners, not just the ones that know him well and he can entertain himself without one on one support.
The amount of time he can spend practicing, exploring, consolidating skills and understanding concepts has exploded, compared to when he was waiting for a partner to assist him.
As a Mum, it makes me so happy to know that during times when he can’t have someone sitting with him and helping him to play or engage, he could potentially still communicate with us or just actively engage in age appropriate, fun activities. I love that if he feels like it, he can read his favourite books over and over again, rather than waiting for someone to support him, or waiting until bed time for a story! The learning that comes from the ability to repeat the same games/books/ words over and over is much more than what could occur otherwise. I also love hearing him laugh while he repeats his favourite page in the ‘very cranky bear’ book which says ‘no no no no no, no’! Now I hope he doesn’t make a habit of using the word ‘no’ too often as a result of this, I must investigate some ‘yes’ books!
It’s also been great for Jesse to have a form of independent play and communication during those times when families are just busy. This is during the evening for us, around dinner time, (a very common ‘witching hour’ for many families with young children I’m sure). Jesse used to become very distressed when we all sat down to eat dinner. It was very difficult and stressful, we tried lots of different things to help, but I guess it was just boring for him that we were all suddenly too busy to be with him (and kids shows on ABC had finished for the night!). Now he uses this time on his computer and since learning eye gaze I don’t think Jesse has had one night of crying during dinner at all, it’s been amazing!
Jesse has also been practicing his switching and joystick control skills, which he is having success with. He is currently using these for cause and effect games and ‘move and choose’ activities. Practice in this area could also potentially lead to Jesse controlling a power wheelchair in the future, further supporting his ability for independence and active, purposeful participation in life.
We are so grateful that Jesse now has access to eye gaze technology. The fact that he doesn’t have to always rely on others to be his hands, or to be his voice, or to guess what he needs or wants or is thinking, or to be his support. He can do things. All by himself. The way children love to and the way they should all be able to.