Way back in December 2017, I wrote about our, then, almost 9 year old Grandson Li Li’s struggles, to understand and integrate with the world around him. We were gradually realising that, these struggles, would not only define him but sadly affect him throughout his entire life.

The intervening years have been a roller coaster journey, not only for Li Li, but for the entire household.  There have obviously been plenty of joyous moments, but there have also been some very low points.

His primary school, were initially very supportive and helped us achieve an Educational Health Care (EHC) plan, which brings extra funding for assistance in school. His additional needs achieved the highest available funding for him and he was appointed an individual needs assistant (INA) on a full time basis in the classroom to help him understand the lessons and keep him calm if his anxieties grew.

With a growing number of special educational needs (SEN) children attending the school and EHC plans being harder to achieve, it seemed that the school were spreading the funding across all the children and his INA help reduced to half days 🥲 This resulted in his behaviour in the classroom becoming increasingly disruptive, with Mum being called in to calm him on numerous occasions 🙄

Although we understood the reasoning, we argued against the decision to share his funding, and pushed to transfer him to a local SEN school. Places are limited and schools oversubscribed, and our requests were constantly declined.

Our breakthrough came with a new competent SEN coordinator joining the school, who recognised his complex needs and fought hard with us to secure a space at a SEN school. The education authority appeared to lose his paperwork and after a heated face to face meeting with one of their representatives, who brought no paperwork with her, nor had she researched anything whatsoever about Li Li, our application was finally approved.

By this time he was heading for secondary school, but WOW, what a difference it made. He gained confidence and a little independence when he climbed aboard the school bus that collected him every morning. He was much happier within himself, made new friends, and seemed to once again be enjoying school. He engaged in lessons and enjoyed PE for the first time in his school career. The school uses an app to communicate with parents and they were very proactive in highlighting students good days and achievements.

At long last we had our cheeky, funny, happy, smiley Li Li back in our lives 💙

3 1/2 years ago, after a diagnosis of epilepsy and an incident at home where he severely burned himself during a seizure, the school alongside our GP referred Li Li to Children and Adult Mental Health services (CAMHs) to try to address his growing mental health and anxiety issues.

We are still waiting for an appointment!!!!

Alongside these issues, combined with raging teenage hormones, which he really doesn’t understand, he has become increasingly anxious and unwilling to leave the house. 😢 School regrettably became less supportive, preferring to call Mum to collect him, rather than use their training to help him back into class during bad days or meltdowns. When she was unable to get there, he was allowed to just roam the grounds until the end of the day. This culminated one day with him in total crisis and he climbed onto a high window sill and threatened to jump. Mum managed to coax him down and he was admitted to hospital, with the CAMHs crisis team being called to speak to him. Unfortunately no one arrived until the next morning, by which time the crisis was over and he was discharged with no after care 😳

In an attempt to lower his anxieties and to encourage him to sit exams, the school agreed to a part time timetable. Although he sat a couple of exams, he has barely attended school this year and we didn’t force him as we knew as soon as he had an issue Mum would be called to collect him.

In January our little Li Li turned 16 and he has been grappling with his appearance, notably his hair. That too has been a bit of a roller coaster as he grew it long and wore it with a hairband, he then decided he needed corn rows, which he took out after a week. He tried again, but then decide they didn’t suit him so took them out and had his hair cut short. 😬

In June he left school. He attended a few of the end of school outings and went to school for leavers assembly, although he couldn’t be persuaded to go into the hall. Mum was able to watch proceedings via a link on t’interweb at home. He also managed to attend the school prom. We went from needing a suit and smart shirt, to deciding on the day trousers and a polo shirt was what he needed to wear. However he looked very smart and handsome as he headed off to party. We weren’t allowed to take photos, but fortunately he did allow teachers and other parents to include him, so we are lucky to have those memories 🥰

To add to his woes, within the last couple of months he has also received an Attention Deficit Hyperactivity Disorder (ADHD) diagnosis. Our doctor is unwilling to prescribe the medication to help his symptoms, until his mental health issues are addressed by CAMHs!!! We understand the decision as ADHD meds can lower the mood, but the wait to meet with CAMHs is still possibly at least 6-12 months away.

He has another two years, where he is supposed to be in either full time education or on an apprenticeship. In his current anxious state he will not cope with either. The local college has a SEN unit but they are totally inflexible and will not accommodate a part time timetable. Mum found a supported apprenticeship scheme, but they will not consider him until he reaches 17 and has a minimum of functional maths and English. We are uncertain he has achieved them yet and although the supported apprenticeship may possibly have an 2nd intake in February 2026, we are therefore completely on our own to fill his days and deal with any crisis he may have for at least the next 7 months.

We know we are not the only ones in this situation, but we feel completely let down by both the education system and the health service.

Everything he and Mum have achieved so far in his life has been an exhausting battle, which many families do not have the strength to continue.

He is unlikely to be in a position to hold down a paid job and is likely to always need assisted living, so the next fight will be with the welfare state to ensure he receives sufficient funding to enable him to support himself and enjoy life as best he can.

Life for Li Li will ALWAYS be a challenge, but as a family we are confident that, despite the numerous service restrictions we have encountered, we have done the absolute best we possibly could for him and of course will always do so, whatever the future may hold.