Blog

Supporting children and young people with CHARGE Syndrome
At Seashell Trust we support children and young people with some of the most complex needs in the country. Our multidisciplinary staff teams are specialised in a range of rare or low incidence conditions, including CHARGE syndrome.  Here we talk about what it means for a child to have CHARGE syndrome and we highlight the work of our dedicated therapy teams who build independence in young people with the condition and support them to lead more fulfilling lives.

What is CHARGE Syndrome?

CHARGE syndrome is a genetic disorder where a number of symptoms are seen together and affects around one in every 10,000 births. The name CHARGE is made from the initials of the main symptoms of the condition, which include heart defects, eye problems and hearing impairment and children may not grow and develop at the same rate as other children their age.

The condition affects all of the senses and general body awareness which can cause significant difficulties for children in making sense of the environment they are in. Without input from all their senses individuals tend to be more withdrawn from activities and do not actively seek items to explore, which can restrict their learning and engagement potential. Developing communication skills can also be an issue and they may struggle to move around confidently and have difficulties with fine and gross motor skills.  Everyday tasks which we take for granted such as making a cup of tea, or walking up stairs can be hugely challenging. 

How our therapists help

Every child at Seashell receives an in depth assessment by our therapy team so they can plan a strategy to support the young person going forward. For those young people with CHARGE, the team focuses on establishing how their hearing and vision are affected, their current communication skills, symbolic understanding and can also assess how they engage with technology which could support them.

Emily is one of our specialist occupational therapists and works with children with CHARGE to help them to maximise use of their senses and integrate these to undertake everyday tasks.  Supporting young people to gain this feedback and have their sensory needs met in a controlled and highly personalised way means they feel more in control of their own body, and more able to use it for functional tasks. It improves emotional and mental wellbeing as young people feel better regulated with less periods of distress, enabling them to try a wider range of activities.

Our therapy team have introduced hi-tech Augmentative and Alternative Communication (AAC) to some of our learners with CHARGE, resulting in improved expressive communication skills. Our therapy team have observed an increase in the vocabulary and the functions of language used by these learners.

Our award winning specialist speech and language therapist Beccy Timbers is currently researching the use of different AAC systems and their impact on the expressive communication in those with CHARGE Syndrome, previously an area of limited understanding.  This project will contribute to the evidence base by investigating the potential of different AAC systems for learners with CHARGE and their effects on spontaneous expressive communication.

CHARGE syndrome is a complex condition which requires a multidisciplinary approach for each child. It is so important that all of the areas affected are identified in order to support young people to become effective learners and communicators and reach their full potential.

Our Therapy Team can help your organisation to be more supportive and inclusive of children and young people with complex needs. To find out more please visit our Outreach pages, call us on 0161 610 0741 or email: outreach@seashelltrust.org.uk

The team are holding a number of training events over the next few months covering topics including visual support for people with autism and/ or learning disabilities, yoga and mindfulness for autism, supporting expressive communication, sensory diets and understanding the impact of the environment for children with autism. View all upcoming events: http://www.seashelltrust.org.uk/events