JOE’S STORY – KABUKI SYNDROME

Social context

NB Names altered for anonymity

Kabuki syndrome is a rare paediatric congenital condition which consists of multiple physical and developmental problems.

People with Kabuki Syndrome often have congenital heart defects, feeding difficulties, cleft palate, speech and language delay, hearing problems, kidney abnormalities and learning difficulties such as global development delay which when a child takes longer to reach certain development milestones than other children their age.

This might include learning to walk or talk, movement skills, learning new things and interacting with others socially and emotionally.

Outcomes And Impact

Able to build and maintain relationships and the importance of this

Able to communicate positively with horse and transferred this learning to how he can communicate positively with others

Improved verbal and nonverbal communication skills

Improved ability to self-regulate his emotions and build trust with others.

Quote

“I am glad Joe has settled in well and seem to be enjoying the sessions. This is really positive, and I will be sharing with carers to share with Joe. This will increase his sense of self-esteem and pride. We were pleased that Joe is engaging well and is very positive about this experience. His engagement at Seeds of Change gave us some insight into the feasibility of exploring more time.”
Murisi Zhou, Social Worker

Background to case

Joe is a Year 3 child who is looked after by the local authority. Currently placed with a Foster Carer, there is hope that this will become a long-term placement.

Joe has an EHCP for global development delay, significant expressive language disorder, chromosome deletion Kabuki syndrome and a hearing impairment.

When upset or frustrated Joe harms himself by head banging or biting and has hit out or kicked others. He is on the waiting list to access theraplay and sleep solutions.

Joe accessed 1-1 sessions for help in regulating emotions and improving confidence and self-esteem. The school also wanted him to understand the difference between humans and animals by learning to look after an animal.

Process at The Seeds Of Change

At the start, Joe found it difficult to communicate with his coach. His self-confidence was low due to the belief that he could not communicate with others.

Over 6 sessions, Joe started to communicate positively with his horse and coach. His speech became clearer, and he seemed more confident to take his time when talking to coach. He was able to communicate positively with his horse with his use of body language and some speech. Recognising the positive impacts of his use of verbal and nonverbal communication had on his horse enabled him to consider using different forms of communication with others.

Spending time grooming his horse, was a successful activity as this enabled him to build trust and bond with the horse.

Completing ‘leading activities’ helped him to understand nonverbal communication and he was able to confidently communicate with his horse and linked this to improved communication with others.

Joe has engaged positively in all his sessions. His approach has been calm and gentle and he was able to reflect on the importance of his calmness and recognise the positive impact it had on his horse and others.