Gaye first realised something was wrong when her son Calum failed his newborn hearing test. Gaye is having to fight to get Calum the educational support he needs and has self-funded private assessments costing over £3,000.
“Following Calum’s diagnosis, we soon came to experience the stark lack of knowledge professionals had about CMV. At 15 months Calum had cochlear implants fitted. Despite this, he soon learnt to talk, becoming bilingual. By the time he was three, it was clear that Calum had other significant difficulties.
“The meltdowns were getting worse. He needed constant supervision and I knew there was something else going on. I’d often raise my concerns with his school, only to be repeatedly told he was fine. Even though there were obvious signs Calum was not doing well in school.
“The trouble is Calum’s a bright kid. And because his speech is good no professional ever bothered to look further, leaving both Calum and myself deprived of the support we desperately need. Every day was a struggle to get him to school. He liked school, but clearly couldn’t cope with it.
“In September 2017, Calum transitioned into junior school. I didn’t think it was a suitable school for Calum but we had no other options as I spent a long time researching other schools. He was there for just 12 days spread over three months. Calum couldn’t cope in mainstream school even though he was in an enhanced resource facility school for deaf children.
Calum needed smaller classes – we could see that and we were desperate to get him properly assessed so we could best manage his needs. When an educational psychology report was produced, it focused entirely on what a deaf child needed and didn’t look at Calum holistically. With the lack of any professional knowledge or insight, I have had to become an expert, getting the most useful information from other parents usually on Facebook support groups.
“The Local Authority is still paying for Calum’s space in an enhanced resource facility for deaf children school, despite the fact that he is at home with me and was only at school for 12 days.
“We appear to be locked into a cycle. Our Local Authority don’t order specified reports from professionals so there is then not enough evidence of the child’s needs. The child is either left to fail in school or can become a school refuser with mental health issues as Calum has done.
“So, we have had no choice but to commission reports ourselves. We are not the only ones in this situation, I know of many others. We have so far paid over £3,000 for private assessments.
“Despite Calum having speech and language therapy since he was five months old, they only ever focused on how good his spoken and signed language was. I couldn’t get a social communication assessment on the NHS so, again, we organised one privately. Calum was diagnosed social communication disorder, demand-avoidance traits and commented on his anxiety.
“Calum also has Irlen syndrome which causes a problem with the brain’s ability to process visual information. This cost £423 to diagnose, receive a report and for us to pay for his specialised tints for his glasses. He will need a reassessment and new tints every year. It is also possibly linked to ADHD. Calum is currently undergoing ASD and ADHD assessments with Deaf CAMHS. We had to travel 60 miles to take him to his first deaf CAMHS appointment.
“Although the Local Authority obtained an educational psychology assessment for Calum, it only focused on his deaf needs. They did no psychometric testing even though I said that I didn’t think Calum was achieving his potential, as I felt he has a really high IQ. Again, we had had no option but to pay privately at a cost of £1,100 for Calum to be assessed.
“We are also funding French, humanities and science tuition at home at £20 a lesson, as well as forest schools, drumming lessons, climbing sessions. We now have a tribunal hearing in January and the Local Authority are maintaining that the school where Calum refuses to go can still meet his needs, despite all of the evidence showing that Calum needs his education from home. The Local Authority have named a London Barrister which will be costing them thousands to support them at tribunal.
“I have had to fight for everything and I still feel like we are getting nowhere. I feel so tired from trying to fight the system. One of the worst things is Calum has lost his confidence because we have had to go so far to prove he needs support. He has gone through so many assessments.
“The impact on our life has been huge. I have had to close my accountancy business down. My husband’s business has been affected as he needs so much more time off work. Yet the demands on our finances are huge due to us having to prove that Calum needs support. This is alongside paying for private tuition at home and the educational and sensory equipment we have had to pay for.
“I’m not asking for very much more money from the NHS or Local Authority – just for it to be spent in the most effective way. The costs involved in caring for a child with cCMV are huge and ongoing, and they won’t go away until professionals learn more about the consequences of the infection and the importance of prevention. For children like Calum, there needs to be a greater understanding of their individual needs, to stop wasting money by spending it in the wrong areas.”