Olivia and her twin sister were born at 28 weeks gestation after a traumatic pregnancy and birth, due to twin-to-twin transfusion syndrome. A short time into our three-month NICU stay, we were told Olivia had extensive bilateral damage to her brain’s white matter, and she may never walk or talk. Cue the onset of early intervention therapies, physio, hydro, and OT, from four months of age, and a diagnosis of hemiplegia at 6 months old. We completed daily therapy at home and participated in clinical trials, all geared towards improving Olivia’ motor development. We started to see rewards from the mammoth effort. Olivia was starting to open and then use her right hand and arm, and she eventually learned to crawl and then walk.
I first identified Olivia’ speech delay at 9 months old (the ‘advantage’ of having a carbon copy to compare her to, in her twin). While it is probably advisable not to compare any siblings, including twins, Evie provide me, a first-time mum, with an example of a ‘typically developing’ child. And I could see Olivia was not progressing with her speech anywhere near the rate of her twin. Our paediatrician confirmed my suspicions and advised that Olivia’ communication skills were indeed delayed. I found the emergence of her communication difficulties, and what seemed like a further diagnosis, very hard to come to terms with, more so than any of her physical challenges. It felt like such a huge blow.
At around 18 months old, Olivia began to see a speech pathologist from the hospital paediatric rehabilitation service. After almost a year of speech therapy, and little perceivable progress, it was suggested Olivia should perhaps trial a speech generating device. She was not quite 2.5 years old at the time. To say that I did not accept the idea of a device would be an understatement. It seemed ludicrous. I had so many questions, too! What did this mean for my child? Would she ever talk? How could she learn to use a speech device as a two-year-old? How would a device impact on our relationship? And how could I possibly take on anything more? I also didn’t know anyone who used a speech generating device, and I hadn’t met other parents who had children with severe speech delays. I felt completely alone. Cue lots of tears from me.
And so, we started with a community speech pathologist, who was also learning the ropes of high-tech AAC alongside us. At first, we trialed several different AAC apps on a loaned iPad. I was completely overwhelmed and unsure about how to use them myself, let alone implement them with Olivia. We then purchased an iPad and settled on one of the apps we had trialed. If I’m honest, I chose the app based on my need to not trial any more AAC apps – it was all too much! We muddled through trying to learn the system and teach it to Olivia, with a pretty haphazard approach, for over a year. There were days I didn’t even pick-up the iPad – it just made me feel hopeless and frustrated. Olivia also wasn’t responding well to our attempts at getting her to use the device (I wonder why?). I was sure I was doing it wrong but didn’t know what I needed to do differently. Cue lots more tears shed by me. It all felt like it was going nowhere.
It wasn’t until May this year that I learnt about the Kids+ AAConnect program. Olivia was just about to turn four. I enrolled in the Term 3 course, desperately hopeful to learn how to better support Olivia with her device use. The workshops did not disappoint! It was an incredible program for many reasons. Firstly, I was able to interact with the peers I had been wanting so badly – fellow parents seeking to support their child with complex communication needs. I learnt practical strategies and sequential steps for supporting and encouraging Olivia’ device use. I learnt that there were things I was doing well, that just needed some tweaking (phew!). And most importantly, I experienced a big shift in perspective that I didn’t even know I needed.
I realised I had set unrealistic expectations of Olivia and myself, I had lost the sense of fun my young child needed, particularly when learning such a complex skill, and I was trying to do it all on my own (a tip for readers: don’t do that). And can you guess what happened when I took steps to address these issues? The most incredible transformation of Olivia’ use of the device followed. She began self-initiating use of the device and composing messages independently, she started keenly navigating different pages and enjoying playing with language, she needed less and less reminders to find her device when she had something more complex to say, and she also experienced a big burst in her use of verbal sounds and was suddenly combining two- and three-word phrases on both the device and with word approximations. Cue the tears from me again – this time tears of joy and relief. I no longer feared the iPad and what it represented and could see its potential for unlocking all the important, funny, interesting, silly, insightful, cheeky, and delightful things Olivia has to say. We still have a way to go but are thrilled with the big shifts in behaviour and attitude towards the device that resulted from the shift in my approach and perspective.
To other parents and carers on an AAC journey with their child, I know it can be a tricky and lonely path to navigate. I cannot recommend enough finding other parents and carers who are also navigating AAC as well as developing your skills and knowledge of how to use AAC to get you moving in a positive direction. The AAConnect program is a brilliant way to do both those things. Also, be kind to yourself, and take it one step at a time. Learning to use an AAC system will probably feel awkward, clunky, and difficult in the beginning. It really is like learning another language – it takes time, perseverance, and practice. Finally, take the pressure of your AAC user and yourself. When my expectations and approach shifted away from results and the level of output from my child, towards a collaborative and fun approach to using the device with my child, everything changed. I hope this is the case for you and your family too. Good luck!