Unsupported Dyslexia 2018-06-13T12:56:52+01:00

Project Description

After a horrible, distressing first term of a bad transition to High School ending in complete School Refusal, the head teacher asked, “ Have you thought about looking for a different school?” Er, no, not until you just asked the question that seems to mean you don’t want him anymore! I replied, “ Yes, why don’t I ring a new school and ask if they would like a very dyslexic boy with ADHD and complete School Refusal?” He recommended another school with a year 7 unit and excellent pastoral care. I realised that at that stage we had nothing to lose so gave them a ring, the last day of the Christmas term, and said exactly that. I went in to meet the Head Teacher in January and was so impressed, and relieved. He said that they had experience of children with similar problems, maybe even worse, and had had success with them. That L had a right to an education and that they would support him to achieve that. He agreed to take L for a trial period, a type of managed move. It took a while to arrange, but finally, he began. He left behind his friends he’d known since preschool, through primary school and the new friends he met in his first term at High School, put on a uniform that was more formal and uncomfortable than he was used to, replacing his polo shirt and sweatshirt, with a shirt, tie, and blazer and went off to school, and he loved it! He went all day, every day, and even rushed over to the Headteacher to tell him “this is the best school in the world” on the Friday of his first week. They agreed to admit him. The previous school SENCO attended a hand over meeting with me, had shared his SEN records, Ed Psych report, diagnosing his dyslexia with recommendations, and her already filled in the form for top-up funding just in case.

I was so happy, L. was so happy, and we soon got into the routine of the school run, which included miles of round trips for me dropping children off and picking them up here there and everywhere. I shared our successes on the Facebook School Refusal group. We had a funny, friendly, busy boy back. His parkour skills were coming in handy, and he was climbing over the fences into neighbouring gardens to retrieve footballs for friends and was thinking of charging for a ball retrieval service, with membership fees – weekly, monthly, or the year. !

Then it started again. Swollen glands tried missing days. Something was wrong, and he seemed to be going downhill again. I met regularly with the pastoral care manager and the lovely attendance officer to find ways to support him, sometimes with the school nurse, who we had known for years through the primary school. They agreed to be flexible with his timetable, and work to support him to improve attendance. I couldn’t work out what was wrong. He wasn’t enjoying school so much; he wasn’t as happy or energetic. He seemed permanently tired.

And then I got an email. “ Dear Mrs……I would like to introduce myself. I am the family of schools specialist dyslexia assessor. I have administered a CAT 4 test, and full dyslexia assessment and I am pleased to tell you that L. Is not dyslexic. It seems he just has some literacy difficulties.”

What? He has a diagnosis, made by an LEA Ed Psych. He was found to be in the 94th percentile for intelligence but 0.5 percentile for writing and spelling. She was reporting him to be below the 50th percentile for intelligence, which instantly set alarm bells ringing. I arranged to meet her, and she showed me stacks of certificates to prove her qualifications. She showed me his cat 4 test showed he learned best by reading and taking notes and his strengths were in humanities! I asked how on earth the findings could be so different to his diagnosis. She was adamant he was not dyslexic, although admitted he had been absent for some on the testing and had fallen asleep during the intelligence test. From that day the SENCO and all staff refused to refer to his dyslexia, despite a new I took him for a private dyslexia assessment which confirmed the previous Ed Psych ‘s diagnosis and which was eventually validated by this school’s Ed Psych
And he reported getting into trouble for not writing or reading quickly enough. The school nurse was replaced by someone we didn’t know, and meetings became less friendly, and referrals to the LEA attendance team were mentioned.

Eventually, his health declined so much that school referred him to the LA medical needs team stating that they couldn’t support his educational needs with such low attendance. Looking back I don’t think I ever saw a SEN plan, and I noticed after he stopped attending that his school that his pupil profile didn’t mention his ADHD or dyslexia or CFS, but described him as having a moderate learning difficulty. He has been out of school for almost an over a year now. He was so low and defeated. He felt like he had failed. I think he did well. He didn’t fail. The education and health systems failed him.

How can it be acceptable for children with complex needs to wait years for diagnosis and treatment when their difficulties are interfering with educational opportunities?. Additionally, unmet SEN at school can have an impact on physical and mental health. Many children struggle to cope with the increasingly narrow exam focused curriculum. Schools must adapt and reflect the changing workplace, with more alternative subjects allowing for success, with more flexible attendance, smaller groups, and use of technology, mentors -following successful models from around the world. Many children feel like they had failed before they were even ready to start!

Years ago ADHD, autistic spectrum and even dyslexia were not recognised conditions with disastrous consequences for many people. Thankfully they are now and yet still schools, and health care trusts have no consistent use of funds to meet these children’s needs. How can one secondary school provide iPads and assistive technology for every child with dyslexia and SLDs and encourage and support the use of iPads and laptops for all students, while the nearby school has no such equipment available for students, nor support for pupils to use their own? I naively assumed that all schools had a statutory duty to provide for SEN and as this school had a brilliant pastoral care system, I sent my very intelligent, dyslexia, a dysgraphic son who also has ADHD to the latter school. Big mistake. He went from being a confident but vulnerable learner, used to having access to a reader, scribe, laptop, extra time through primary school and accommodations for his ADHD, to being punished for fidgeting, and not reading or writing enough leading to severe School phobia/anxiety, refusal and now Chronic Fatigue. During this time he had a two 1/2 year wait for Cahms treatment for ADHD and School refusal. He has missed years of vital education just for want of some assistive technology and more flexibility than School were prepared to offer. He is now at home with LEA medical needs tutoring.

School refusal/ School phobia has risen amongst children who are SEN needs aren’t being met. There are thousands and thousands of children unable to attend school. Instead of accessing supportive schooling, and medical support, many are defending ourselves against threats of attendance prosecutions and child protection investigations and proceedings. The most relevant support has come from supportive, knowledgeable parents on a School Refusal Facebook group, and a now through a new group “Not fine in School: action for school refusal and attendance difficulties ” , who now working to create a charity to research, campaign and provide information to parents, carers and professionals regarding school refusal, anxiety and other issues preventing children from being able to attend school. Without them, I dread to think where we would be now.


  • Connect with families and professionals
  • Discuss triggers and influences
  • Share guidance and resources


  • Campaign and raise awareness
  • Highlight child and family perspectives
  • Change thinking and practices


  • Read relevant research and literature
  • Participate in research projects
  • Support for related studies



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