Updated: Mar 29, 2020
He was just 18 months old when his inability to focus on anything for longer than a minute was first flagged as a problem. We were encouraged to try jigsaw puzzles and other activities that might train him to sustain his attention. Other than this, he was a bubbly, happy, active boy doing what all toddlers do.
Over time, teachers grew increasingly concerned about his readiness for school. At some point, it became hard to keep telling ourselves that, as he was August born, he simply needed more time to mature and catch up with his peers. He never did. Quite the contrary, time seemed to work against him as his boisterous and impulsive behaviour only alienated his friends who gradually turned from loving him to finding him irritating, disruptive and too full on. By year 2, there were suddenly next to no playdates and he kept finding out about friends’ birthday parties he didn’t get invited to. His previously understanding teachers started losing their patience and he was constantly told off. Schoolwork and homework were becoming a major problem. My son was becoming frustrated, angry and defiant. In the evenings, he would cry himself to sleep, already self-conscious about being somewhat different and telling me how he wanted to be like other children.
I made an appointment with my GP having spoken to my son’s teacher who, by then, was also struggling with him. Five minutes into the appointment, we got a referral to our local ADHD clinic. ADHD had never been discussed or suggested before and I left the surgery flabbergasted. The process that followed - the initial assessment by CAMHS after months of waiting, internal NHS miscommunication, repeat of the first assessment, more lost weeks, assessment getting lost, then found, finally reaching the waiting list to see a consultant, somehow dropping off the waiting list, followed by weeks of phone calls needed to be put back on the list, waiting, waiting, waiting… a process that is not for fainthearted and adds so much stress to already struggling children and families.
By the time we finally received our diagnosis of severe ADHD, it already felt like old news but it was only the beginning and we were badly prepared for what was next and how it would challenge us emotionally as we looked at our son thinking how we can now best help him…
We were one of the lucky ones, with a great mainstream state school and great SENCO we could work with effectively from the very start, even without an EHCP. I still remember seeing my 6 years old getting increasingly frustrated, angry and heartbreakingly lonely. I can now see how easily his life could have gone another way, had he not been supported in the right way. We caught him just in time, before he got too angry and too demotivated, before he started hating school.
However, just as we found our feet and relaxed a bit, it was time to start thinking about secondary school. I remember talking to an independent local school marketing themselves as “SEN friendly” and “SEND specialists”, only to be told coldly and unapologetically that “they can’t have a child like mine”, despite my pleas to look at his school reports first or talk directly to his headteacher. That was followed by another local school with a supposedly great SEN team who pretty much suggested that I withdraw my son’s application. It became very clear to us that not all schools were what they proclaimed to be and it was actually incredibly hard to get to the truth behind smooth-talking headteachers’ speeches and shiny marketing materials.
Our son is now at the right place and thriving. It was not easy and it will never be easy, for us or for him, but I know that things are as good as they can be. Ours is a good story. However, over the last few years, as I’ve joined various support groups and met other parents whose problems were truly dwarfing ours, my eyes have been opened to hundreds of stories that didn’t have happy endings and children who got totally lost in the process. I’ve also become aware of the intricacies and ambiguities of most processes involved in the education of children with SEN, from EHCP applications to school selection and communication with SENCOs.
Being a parent of a child with special needs is already incredibly hard and, without the right school, next to impossible. With this site, we would love to provide a discussion forum and a comprehensive information hub for all parents who feel confused by school options available to them and who are trying to understand which option and which school would best suit their child, whether they are considering mainstream or special schools, state or independent, schools with SEN units or provisions etc...
Please use it to ask others about their personal journeys, recommendations, direct experience with different schools, advice about getting the right EHCP, interactions with SENCOs and anything else that might make your child’s education better and happier.