By Margie Charlesworth

I was born with Cerebral Palsy and grew up using my natural speech with what I like to call a ‘Cerebral Palsy accent’ (some of you may call this a communication disability). It was an era when talking freely about emotions just didn’t occur. Limited options for speech generating devices made it difficult for me to communicate effectively, and when I did try to express my feelings, the outcomes were often disastrous for me and those around me.

My parents did the best they could!

My parents did their best to create a happy and nurturing home environment. Dinner time was a fabulous time of sharing laughter and conversations, but it would have been immensely valuable if my parents had access to a program like Talking About The Important Stuff to support my emotional development, just as they could with my brother. This would have provided strategies not only to talk about emotions, but to provide children with complex communication needs (CCN) with avenues to express thoughts and feelings, just like any other child. We now recognise the significance of supporting parents and caregivers in this journey as well.

The dangers of over-protection

As a child with communication difficulties, my Dad tended to over-protect me, wrapping me in cotton wool as the saying goes! However, I have come to appreciate the wisdom in quotes from people with lived experience of CCN in Talking About The Important Stuff. Quotes like “throw them out of their wheelchair (gently) and let them eat dirt” and “the kid with disability should not be the centre of love all the time”. These quotes serve as powerful reminders that children with CCN deserve to experience everyday life and be exposed to the realities of the world, just like any other child. Over-protection hinders our growth and independence, whereas providing us with opportunities to learn, explore, and be understood promotes our emotional development and self-empowerment.

Empowering All Ages

While it is crucial to start conversations about “the important stuff” during childhood, I am a strong advocate for providing tools and strategies that continue to support individuals with CCN throughout adulthood. Conversations around independence, personal safety, and self-empowerment are long overdue for anyone with a disability, and they hold even greater significance for people with CCN.

How Speech Pathology can help

Speech Pathologists can work with children and adults with CCN to support them to build on their natural speech. They can also support by introducing Augmentative and Alternative Communication (AAC) as a way to supplement this speech or to give them another way of communicating. AAC systems can take many forms e.g., sign, aided language displays (ALDs), comprehensive communication books (PODD), speech generating devices and many more.

Thinking back to when I was young and having speech therapy, I remember having to listen to the words on a flash card, repeat the words and then sound out each word as I said them. I’m pleased to say, especially during Speech Pathology Week 2023, that nowadays speech therapy looks different. Speechies are much more involved in advocating what works best for their clients and ensuring that all ways that a person communicates are valued. This is important, especially when considering the future “voice” for their individual client. #SPWeek

Meaningful connections

Through my journey with communication disabilities, I have come to realise the immense power of words in shaping our understanding of one another. By embracing the voices of children with CCN and providing them with the means to express themselves, alongside continued support throughout adulthood, we create opportunities for meaningful connections and a life that flourishes with possibilities.

When you’re little, emotions are big! Think back to when you were young. Did you throw an occasional tantrum? Did you have a bad day and go over it again and again in your head? Until you eventually talked about it with someone you trust and finally felt that huge sense of relief from a problem shared… Probably. 

We’ve all had a tough few years and kids have watched their world evolve in ways we could never imagine a short time ago. One of the main messages conveyed when the world was in the turmoil of a pandemic was to ‘stay connected’. We stay connected with one another through sharing stories, ideas, thoughts and even our sense of humour. And we use language to manage our emotions – to tell people how we’re feeling, to validate ourselves, to get help and to regulate ourselves. 

What happens when you have a communication disability?

So just imagine, you have a million thoughts in your head – some are worries about the future, some are funny stories about your day, some are wondering about what’s happening with your body… but, you need an augmentative communication system like a PODD or communication device, and maybe also a communication partner to share your thoughts clearly. You may not get the same opportunities to talk things through like your siblings or peers.

Emotional development is extremely intertwined with language development. During early years of communication, parents describe their own emotions and the emotions of their child. This ‘emotion talk’ is how we navigate our feelings and start to create our belief systems that stay with us through life. So it’s time to start talking about the important stuff with children with a communication disability, as early as possible, so they too can build a strong foundation for emotional well-being.

Here’s our top strategies on how you can start ‘talking about stuff’ to help manage those emotions

Set the scene

Just being aware that emotional development and language development go hand-in-hand is important. Think about all the things that happen in a day that can affect a child emotionally. Create a supportive environment, where you notice when your child may have had strong feelings about something. Celebrate and acknowledge those feelings when you notice them, and do that often! There may not be a response from the child yet, but it’s a great way to ensure they feel heard and can navigate those feelings. And keep talking about stuff in age appropriate ways! 

Provide learning opportunities

Make vocabulary available. Further to that, model emotional conversations. These conversations may be about something that happened that day or what’s happening in a story you’re reading. You can also scaffold and co-construct messages, to figure out what is happening for your child and help them learn what it means to feel a certain way, how to share their feelings with others and how to indicate why they’re feeling that way. 

Promote independence

It is crucial to encourage independent exploration and problem solving from an early age, no matter how a child communicates. Ask children to direct you when appropriate, respect preferences and begin to negotiate. Perhaps you could include your child in interviews with support workers. Any time you find yourself advocating for your child, add those messages to their communication system and show them how to advocate for themselves. Let them hear from people with lived experiences of communication difficulties. Always respect and enable privacy and authorship for anyone using AAC. Do they have the opportunity to talk privately? Can they tell you ‘don’t say that’ or ‘don’t tell anyone’?  Can they clarify a message, or say ‘that’s not what I meant’? 

By adopting these simple strategies, you can help your little one manage big emotions and navigate their world with confidence and resilience. 

Learn more

To learn more about positive emotional development in children with communication difficulties, take the FREE Two Way Street online course ‘Talking About The Important Stuff’. The course gives parents and key communication partners the skills and knowledge they need to enable meaningful conversations with their kids.