James was born by emergency ceasarean section in September 2015 during which he suffered severe Hypoxic Ischemic Encephalopathy (HIE) also known as lack of oxygen. His first 24 hours were a bleak & clinical choice of life or death. The true fighter that he is, James pushed through but the fight was not over. The consultant informed James’ parents that he may have issues with his muscles and that the brain damage identified on initial scans was irreparable.
The first year of James’ life was very much a watch and wait, to observe developmental milestones and to accept help in the form of physiotherapy, speech & language therapy, occupational therapy and regular appointments with his consultant.
As James headed towards his first birthday he still wasn’t rolling, sitting independently, standing or pulling himself up and this trajectory of physical difficulties continued. He couldn’t bring his hands to his mouth and he had to be spoon fed, he couldn’t chew and he certainly couldn’t walk.
By the age of 1 he was diagnosed with dystonic Cerebral Palsy due to muscle stiffness in his arms and legs. However James’ family thrived on the fact he was alert; he loved watching his older sister play, he smiled and laughed, particularly at his favourite songs – the one’s that ended in a tickle after much anticipation like Round and Round the Garden!
Just as James approached one he began his journey at nursery. The settling in sessions were difficult, however, with much perseverance the amazing staff got to know James and he warmed to them. He then, over time, started to thrive; enjoying playing with the other children, listening to stories, joining in with music time, painting and looking at flash cards of his favourite people and objects with his key worker.
When thinking about why James’ experience of nursery and education has been (and continues to be) so positive James’ family reflect that not one member of staff or educational professional has ever questioned James’ understanding – it has always been taken for granted that he understands as much as the other children he plays with.
Despite only making vocal sounds rather than forming proper words, his key workers at nursery know when he is enjoying an activity and when he really isn’t interested. His portage worker could also see all the cognitive developmental leaps his family were delighted to be witnessing. Towards the end of his time in the baby room he was visited by an educational psychologist as part of an assessment to award him an EHCP Educational Health Care Plan (EHCP) – a legal document that would ultimately support nursery with funding to ensure James could receive the 1-1 support he required. True to form when it comes to toddlers, James would not do anything for this strange man despite his key worker desperately trying to prove he understood different concepts and objects – she believed in him and wanted to the world to know what he was capable of!
James had a real cognitive leap around the age of 2. He developed a passion for emergency vehicles (which has now expanded into nearly all forms of transport, in particular fire engines and steam trains), Music (particularly his daddy playing the guitar and a recognition of particular songs that are always on repeat in the car due to his sister’s requests, namely soundtracks from musicals the recent favourite being songs from The Greatest Showman!) and books (he loves the Alien in Underpants series as well as books about transport and music!). However, he was only able to demonstrate an interest in these things through laughing or smiling. James’ parents were hoping that the lack of speech was just a ‘delay’ (why not? He was only 2!) and worried that using any other method of communication would delay the ‘non existent’ speech even more. James had been using pictures of key objects at home and at nursery to make choices for a while but it was time to accept that using his eyes might be his way of telling us what he wanted on a more frequent basis.
James’ transition to the toddler room at nursery saw his eye gaze communication come on leaps and bounds. It didn’t take James’ new key worker long to see what his parents could see – a very cheeky and clever young man restricted by those pesky muscles! James’ key worker continues to work incredibly hard to get the best out of James and his parents are incredibly grateful for her being prepared to learn a wealth of new skills in her role as SENCO to facilitate such a positive educational experience for James.
James now uses his eye gaze frame and images to choose activities including free play and to communicate yes, no, more and stop. The day James’ diary from nursery said ‘choosing songs with his friend taking turns using his frame’ was overwhelmingly wonderful for his family and sums up inclusion, without a doubt!
He has since been using his communication frame to choose musical instruments and identify farm animals, shapes, colours and vehicles! James is also now trialling an AAC device on loan to use in addition to his low tech eye gaze.
James is due to start school in September 2020, his family have been exploring their options to find the right place to meet James’ physical and cognitive needs. They have learnt that their local special school might not have as much academic and social stimulation as his mainstream nursery provides him with now but the response from local mainstream schools has been varied when it comes to how they could and might meet James’ needs. Currently James’ family hope he will attend a mainstream DSP for physical and communication needs, however this means that they will have to travel outside their local authority as this provision doesn’t exist close to their home for primary education.
In the short term future James’ family would like him to have the same educational opportunities as any other child of his age (why not?!) so that ultimately he can be academically and socially fulfilled later in life, whether that is studying or getting a job etc. They also know that it will be imperative for James to be able to communicate what he knows (and doesn’t know) to progress at school , so the hard work he has been doing with developing his eye gaze for communication and choices will need to keep developing.
The owner of James’ nursery summed it up when in conversation with James’ mum about how much James was learning from the other children, she responded by… reminding her… he wasn’t just learning from the other children the other children were learning so much from him. For his parents and everyone involved in James’ education this defines inclusion.