Newsletter Article - Cochlear Implanted Children's Support Group (CICS)

Many thanks to Tricia Kemp from CICS for inviting me to contribute to the newsletter October 2021 edition https://www.cicsgroup.org.uk/

Here’s a copy of the article:

Karen Gazeley is an Independent Auditory Verbal Therapist & Teacher of the Deaf based in Sussex, where she also works with the West Sussex Sensory Support Team. Here she reflects on some of the many lessons she’s learned from working with families of children and young people with hearing loss for 33 years.

It seems like just a few years ago that I qualified as a TOD in Manchester and then drove my old Datsun down to Brighton to start my first job at Ovingdean Hall School in Brighton. I can’t believe it’s been that long! 

I’ve been fortunate to work with children and their families across the age range and in a variety of settings including a special school, a hearing support facility, sensory support services, a charity for preschool deaf children and an auditory implant team. Along the way I have learnt a huge amount from the children and young people and their parents, friends and colleagues and other professionals in the field. Below are just a few examples, focusing on my work with pre-school children and their families.  

Supporting parents 

I started working with families of newly diagnosed babies following the advent of newborn screening. As a young teacher I think I tried to give reassurance and practical advice too quickly at times. I hope I became a more effective, empathetic listener over the years as I learned the importance of validating parents feelings and finding out what would be most helpful for them in those early visits. Using open questions, e.g. ’Can you tell me more about what you’re thinking?’ and responding to the emotions that sometimes lie behind questions from parents helps to open a dialogue and build trust. Parents need support to be in to be in the right emotional space to enable them to access learning. 

Families have helped me to understand the importance of acknowledging the benefits and also the challenges of hearing technology. It helps to know that all parents find it hard to support their child to wear their hearing aids or processors at times, and to share information about the benefits of increased wear time alongside practical strategies to help with use and retention. Parents need to know what their child can hear with their technology and how to monitor their auditory access. It’s important that parents trust their judgement; I worked with a little one whose mother had noticed that she was missing /s/ in her speech and when the audiologist checked her hearing levels she found that they had dipped in the high frequencies. 

I appreciate the importance of making sure parents have information on the range of communication options and access to the resources they need to facilitate their preferred approach. Every family is different; no one approach is right for all families and it can be helpful to think of a ‘communication journey’ which may change over time, e.g. following a cochlear implant. At the moment, Auditory Verbal Therapy is not widely available. Auditory Verbal UK are hoping to train many more therapists to enable families who wish to use an auditory verbal approach to access it locally. I have found that auditory verbal techniques are also effective to support early listening and spoken language within the context of different communication approaches. 

Early diagnosis and intervention and advances in hearing technology have meant that the outcomes for deaf children have greatly improved over the years since I qualified as a TOD. We share high expectations of what deaf children can achieve; it is lovely bumping into families I worked with years ago in Brighton & Hove and hearing how well the young people are doing.

I have learned that transitions, like starting nursery or school, can be an emotional trigger for some parents and that talking through their concerns and problem solving together is helpful. Early intervention is most effective when the team around the child work together towards the parents’ chosen goals for their child. Working with the wider team; including audiologists speech and language therapists, occupational therapists, pre-school setting and school is crucial. Part of my role is to help parents to become advocates for their child - actively guiding them and working in partnership with professionals to set goals and put in place support to help their child achieve. I was pleased to able to support a mother of a child who came to the UK when he was three years old to help her to achieve her goal for him to have a cochlear implant and to start at the local HSF as soon as possible. One of the parents I worked with years ago wrote, ‘We have to become warriors, advocates and teachers’. It is such a privilege to be part of each family’s journey. 

I have learned through experience that one of the best things I can do to support a family is to put them in touch with other families. In the various teams I have worked with we have offered a range of activities for children and families, e.g. sing and sign classes, workshops and events for families. Many of the families that attended these groups in Brighton with me years ago are still in touch with one another which is wonderful. NDCS and CICS provide opportunities for parents to meet, share experiences and support one another. These groups also provide opportunities for children to meet other children with hearing loss which is so valuable.

Sharing information and advice 

I have learnt that it is helpful to have a conversation early on about our respective roles so parents know what to expect. Asking questions about routines, their child’s interests, parents’ goals and values helps me to tailor advice and support to individual families. Whilst working at AVUK and Royal National ENT Hospital I worked with families from diverse cultural backgrounds and have seen a positive move to promoting a bilingual approach to language for deaf children.

Parents of children recently identified with a hearing loss inevitably have lots of questions about the implications of hearing loss and need practical information about how to help their child and manage hearing technology. Checking in with families about how much information they want and when is important; I remember one mum telling me that she kept the Monitoring Protocol behind the sofa for some time before she felt ready to look at it! Sharing information in different formats and on multiple occasions is very helpful.

Over the years I have extended my knowledge of the developmental stages in listening, language, play, social and emotional skills and pragmatics and honed my diagnostic skills. Working in partnership with individual parents, we agree goals and plan activities to help them take the next steps in their development. Encouraging parents to identify key strategies they would like to use at home in everyday activities helps to consolidate learning. I have learnt to check in with the parents about their learning style and how best to share information; some parents like to write down things to try at home, others jot down one thing they will take away on their phone.

Coaching

Since I first trained as a TOD, I have seen an increasing emphasis on working in partnership with parents. My training with AVUK helped me to build my skills to guide and coach parents. I am grateful to the families in Brighton & Hove who learnt alongside me as I incorporated new techniques. A few families will remember speech babble practice using the infamous penguin race toy! 

A priority for me when working with little ones is to highlight the natural ‘serve and return’ communication between parent and child. Supporting parents to recognise, interpret and respond to their baby’s early communicative signals helps foster joint attention and early communication. Asking, ‘What do you think he is thinking?’ helps adults to make contingent responses, giving the baby the words they need, e.g. ‘I want that!’ Early indications that the baby is responding with their hearing technology are very encouraging for parents. I remember the moment a father and I both noticed his daughter copying the intonation and pattern for ‘up, up, up’, showing that she was accessing low frequency speech sounds with her new hearing aids. Over the last year I have been working with a little boy and his family remotely which has been great as it puts the parents in the driving seat with me supporting on the sidelines. 

Coaching parents to use simple, effective strategies gives them confidence to help develop their child’s early listening and language. Helping them to notice the impact of these techniques during sessions by asking open questions is very encouraging, ’Did you notice what happened when you whispered that?’ ‘What do you think may happen if you move closer?’ I have learnt the value of demonstrating techniques to support listening, language, thinking and social skills through play and then handing over to parents to build their confidence in the sessions. The children themselves have taught me the importance of choosing toys and activities at the appropriate play level. I once ended up under the table with a little girl who was finding the activity challenging. I enjoy using fun everyday activities e.g. making a sandwich and thinking together with parents about the goals we can incorporate, such as auditory memory, following instructions, and quantity. I have been inspired to try fun ideas including making dens, smoothies and planting seeds. I thank the parents I have worked with for joining in enthusiastically as we role play doctors, shops and cafes, and apologise for the splashes from bathing baby and washing cars! 

Another area that I have learnt more about in recent years which has influenced my practice is supporting social and emotional learning. Encouraging parents to acknowledge how they think their child is feeling even from a young age, and making a plan to help them regulate their feelings works so well, ‘I know you are cross’ ‘First eat your banana and then you can play’. Highlighting how characters feel in stories and why helps children learn words for emotions and develop empathy skills. A favourite activity is to play with playmobil people and a playground to help young children learn to negotiate and problem solve in play. As children start school, helping them to ask for clarification and to begin to be more independent with their technology helps build self advocacy skills from an early age. Seeing the children grow and succeed is the best part of my job! 

You can find ideas for activities on my website karengazeley.co.uk