Kinton is a 10 year old boy, he is lively, bubbly, and affectionate and he loves swimming and chicken. He now has a diagnosis of ADHD, Autism, Epilepsy and Severe Learning Difficulties. He uses some verbal communication, particularly for the things he loves. For example, he can say ‘chicken’ more clearly than other words. His behaviour can sometimes challenge, in the early days he would kick, hit and throw things.
We received very little support, despite going back and forth to our clinicians and Social Services. Kinton was eventually assessed by an Educational Psychologist. From the age of 6 years old he attended a local SEND school. Although this school specialised in Learning Disabilities and Autism, it was not equipped to manage Kinton's behaviour, resulting in the school excluding him from going swimming - one of the very few activities he enjoys because they could not manage his behaviour at the end of the session as he would refuse to get out of the pool. There were occasions when he would be allowed to go out on trips without his coat in very cold winter in January, because he refuses to wear his coat. He was excluded from various local play centres because of his behaviour.
We reported all these difficulties that Kinton was facing in school as a result of his behaviour and requested that he be moved to a school that has a better understanding of behaviour that challenges.
We had to work very hard over about 18 months to get Kinton moved to a more appropriate school, through documenting evidence and an independent Education Psychology assessment, and immeasurable support from charities.
Since Kinton started at his new residential school, about 30 minutes away from home, he is a lot calmer and he comes home on most weekends. His behaviour has improved and he is a pleasure to be with. His relationship with his sister is better, they now play together nicely and his sister looks forward to him coming home. She is now able to invite her friends to our home and she is a happier girl. We have been on two foreign holidays since he started the new school last year, these holidays were the best ones ever. We were able to do more fun things together as a family.
We feel that we are lucky to be in a position to understand the system and we believe that some of the following could have made our journey so far easier and might also help other families on similar journeys:
Early Diagnosis - would have prepared us emotionally and physically for the challenges ahead, if our early concerns were better investigated.
Information about Behaviour - if we were educated as about some of the causes of behaviours that can be challenging, this would have made a world of difference to us and our approach to caring for our son.
Multidisciplinary Input/ Joined-up Services - had there been a sort of 'one stop shop' team with relevant professionals, i.e. Psychiatrist, Physiotherapist, Occupational Therapist, Psychologist, SALT etc. supporting Kinton with intensive therapies this could have helped with his communication and sensory needs. Having an integrated service between the hospital and Social Services would ensure that families get the right support early.
Reducing Barriers for families - families that might not know the system or are unable to access the available services for whatever reasons should have the same opportunities as those without these barriers.
Better Informed Professionals - the involvement of so many professionals talking medical gibberish or sometimes can often be overwhelming, clear and simple explanations by Health and Social Care professionals can make a big difference.
Lanre, family carer.
This article appeared in an edited form in the Summer 2014 newsletter.
Graphic of Lanre's presentation to the CB-NSG illustrated by Pen Mendonça.