Last week we published our latest thematic report, 'All Together Now: Inclusion not exclusion'. Since launching the Commission in September 2021, we have heard from many parents and young people who feel the education system didn't provide the support they needed. Today, we are publishing Anna's experience.
We are an ordinary middle-class family with two children. We live in a prosperous shire county in the Midlands. On paper, a family such as ours shouldn't end up in the margins, with high and complex needs, but we did. The inflexible, judgemental response (or lack of it) by education and primary healthcare and CAMHS left us disabled, disempowered, judged, threatened, coerced, isolated and lost. Our needs escalated, embedded and some will never leave us. It has been an extraordinary and eye-opening experience that has changed my privileged and cossetted worldview entirely.
In 2014 our eldest child, who was 9 at the time and had struggled with chronic ill health since infancy, experienced a mystery health crisis no one at the time knew how to respond to. We'd been struggling for years - he missed school due to persistent viruses, he was bullied, he struggled with speech, co-ordination and fatigue. But he was a high achiever and school said although they sometimes forgot he was there (as he was so quiet and compliant), his progress was above expectation, and he was 'doing fine' in school.
The school's beloved Headteacher retired and in came an ambitious young Head who was tasked with balancing books, raising attainment and improving behaviour. In came a House system, Attendance Awards, Achievement Assemblies, RAG rated Learning Boards. My earnest and quiet boy was obsessed with the Learning Board, introduced the summer term in Year 1. He only ever wanted to be a Double Star Learner and really struggled when he wasn't. Perfectionism became a real problem. His enquiring and curious nature disappeared, any growth mindset disappeared. He started expressing extremely low self-image, skin picking and biting his nails.
He started having vivid nightmares about failing his SATs in Year 5 (he was currently in Year 3). In them, he committed suicide and stopped sleeping as he was so disturbed by his own dreams.
I looked at different schools, but his sister's year was a bulge birth year, and I could only move either one or the other child.
He started rapidly losing weight, was declared 'failure to thrive' and referred to a paediatrician. The appointment took 29 weeks to come through. I was now deemed to be 'overly anxious' and was told I was 'making my son ill'. The GP phoned school to say there was nothing wrong with him and that he should 'stop listening to Mum and get on with it.' School took a tougher stance and any compassion and tolerance evaporated.
Prior to diagnosis (which was only received privately in the end) we were advised by school and health to be tougher on him, that he was manipulating us. I gritted my teeth and chose to listen to professionals. After all, they were trained and knew best. But it was against every instinct in my body. I knew my son couldn't possibly be making up his symptoms, much less than I was causing them. His joints swelled, he struggled to walk, he felt faint at school. He was subsequently diagnosed with a genetic connective tissue disorder impacting multiple systems in his body and it was revealed he'd been in pain his entire life. He thought constant pain was normal as he'd never known any different and presumed everyone was coping with theirs. His core belief that he was bad, broken, a burden was evidenced on repeat through a lack of secure attachments and problematic questionable practice from the adults around him.
Even when he achieved at school, he didn't believe he deserved the grade or praise. School resisted opening an early help meeting and claimed our family 'didn't need intensive support.' It was the school nurse who came in and insisted a CAF assessment took place. She rapidly escalated us to CAMHS and the Community Paediatrician.
Mental ill health was now well-established, and my son found being near the school so disabling he would fall into a ball and mouth wordlessly, unable to breathe. The expectation was all about attendance and reintegration back into the classroom as soon as possible. He missed his friends, but he became so overwhelmed with unprocessed trauma that the panic attacks removed his mobility, voice, communication.
School said, 'severe worries were anxiety and that was something only CAMHS could work with.' Looking back, I can see the tiny windows where things could have gone differently if school had the foresight and flexibility to give him a pragmatic and SMART / child-led reintegration / transition plan, if they focussed on his wellbeing and recovery rather than lost learning.
He lost all trust. My youngest, who was 4yrs 7weeks old when she started school was quickly identified as 'challenging' and found her way repeatedly in the Headteacher's office. She became more physical in her behaviour and struggled to make friends. She was also obsessed with the Learning Board and was bullied from Reception to Year 6 with school eventually saying she was 'choosing not to engage in learning'. She was born with a congenital birth defect and was under the care of a national children's hospital until she was 7 undergoing annual assessments until she was old enough to undergo surgery.
Her sleep was disrupted from Year 3, when an NQT started removing her lunchbreaks for not completing work in class. She struggled with handwriting, learning objectives, meeting required standards. She knew she was failing but didn't know why. Removing her breaktimes meant she became more isolated, and she wasn't able to go out and move her body to regulate.
This, combined with bullies in the playground ultimately gave her nightmares for years. She subsequently was diagnosed with speech & language and auditory processing difficulties. The pandemic was horrendous for a child with school-based trauma and health anxiety who had no friends. She started subconsciously rubbing her hands as if washing them, picking skin on her face and hands until she bled. She was a verbose, energetic, kinaesthetic learner. She is still a social butterfly but was so often rejected by her peers. She was labelled 'controlling' and 'difficult'.
She failed the Phonics Screening twice. Like her brother, she didn't sit KS2 SATs. School said she didn't qualify for SEN Support or an EHCP, just as they did with her brother. Early Help ran for 4 years at which point they closed our case saying we should have a s.17 assessment. It took a further 2 years and 2 complex complaints to the LA to receive CiN social care support.
Both children now attend a tiny therapeutic independent SEMH school. My son started attending school in person in Sept '21 (Year 11) after being able to access online learning during lockdowns - something he'd been asking for since Year 5. He is sitting his GCSEs across 3 years as he wanted 5 GCSEs grade 8! He also has a Level 2 in IT Distinction.
My daughter is attending 3 times a week for half days and is starting to write, sing and imagine a future.
Both children are supported by a TAF lead by a Consultant Clinical Psychologist trained in the only NICE accredited trauma informed qualification - DDP. All I can say is, it works. She supports school through supervision, my husband and I and both children.
The children now sleep independently and through the night. Both are starting to see friends outside school. Both carry enormous grief over lost time, my daughter is very vocal about this. But we are at least seen, supported, heard and valued.
It's a shame it took 7 years to get there.