Barbara’s tells the story: ‘I’m not a teacher but I don’t have a choice’
It’s 40 years since I did my A-levels: two idyllic years of history, RS with philosophy and sociology brought my academic life to an end. I left home and started my indentures as a trainee journalist. And these days I am more likely to qualify for a bus pass, yet I find myself once again surrounded by A-level textbooks. This time I am the teacher, and my daughter is the pupil. Parents say they will do anything for their offspring. I suspect teaching them A-level courses at home is one of the exceptions. I’m not a teacher: in fact I don’t have a degree. I also don’t have a choice.
My eldest daughter, Thea, is exceptionally bright. She has normal ambitions of getting top grades and going to a top university, getting a degree and a job. However, she is deaf. She has also been seriously ill, and because of that she is now in an academic hinterland. She should be in year 13, getting offers for degree courses. Instead she is at the dining table trying to work to a teaching scheme we have found on an examination board website.
Like thousands of disabled children before her, she has been ground down trying to survive mainstream education. After five years at a top state grammar, living on her wits, trying to follow conversations with people whose heads were turned away, being left behind in friendships, straining to listen in class against the backdrop of a humming whiteboard that interfered with her hearing equipment, she just crashed.
On some days her cochlear implant would fail and she would go through the day profoundly deaf, talking to no one and no one talking to her. She didn’t ask for help because she didn’t want to bother anyone. I came to recognise those days well, because back at home the words would tumble out of her mouth, and she would laugh and joke and be her normal self. I know what six hours of suppressed verbosity sounds like: it sounds like a heart breaking.
By the time she was taking her GCSEs she was showing signs of anxiety. She was taking more and more time off, yet she achieved nine out of nine A* passes. Her anxiety tipped over into panic disorder after her GCSEs when she was diagnosed with food allergies. She became too frightened to eat for fear of an anaphylactic reaction. Finally, when her dad had a stroke, she went into freefall.
During the five years she was there her school was incredibly sympathetic. They had never had a deaf pupil, and all staff underwent deafness awareness training and rallied round. They wanted to help so much, but ultimately they could not tackle the crippling isolation.
Such was Thea’s determination to do her A-levels that she started in the school’s sixth form in September 2014. Her last ever parents’ evening was bizarre: spectacular results were predicted for her A2 year, but there were also serious concerns. From the start of this year her attendance crashed and her weight was plummeting dangerously. She tried to teach herself with work sent home from school, but it was decided she shouldn’t take her AS-levels on health grounds. In September this year Thea begged us to let her be home schooled. She promised to get a job, volunteer, to find reasons to get out of the house. We agreed to give it a go.
According to government statistics, twice as many deaf children as hearing ones will suffer depression or other mental illnesses. Forty per cent of those will have a crisis around the time they leave secondary school. It isn’t a whim of Thea’s not to go back to the classroom. She isn’t the first child to be home schooled on the grounds of illness.
All local authorities have a duty of care to ensure young people have a suitable education. The main stumbling block for us has been a change in provision for disabled children, introduced by the coalition in September 2014. For the past 20 years children with disabilities in mainstream education have had a “statement” – a document that outlines the level of support they get in the classroom from specialist teachers and support assistants. The Children and Families Act 2014 aimed to transfer those statements to an Education Health and Care Plan (EHCP). The entire transfer is due to be completed by July 2016. However, many families like ours are finding the process far from complete.
Some councils are taking up to 20 weeks to process the transitions. We received the letter starting proceedings just a month ago. At the moment, procuring services to supply Thea with a teaching plan and funding for materials, tutors etc, are all linked to the ECHP.
The difficulties facing parents of teenagers with disabilities in a time of austerity was highlighted on a recent Question Time. Sally Wheatman, a former colleague of mine, brought the issue to national attention when she castigated Tory MP Matthew Hancock for writing off those with disabilities. Her son George, 18, who has learning difficulties, has yet to get an EHCP. His funding for transport is under threat and his place at college has been taken away. The feedback she has received since then suggests there are thousands of children suffering in similar ways.
The National Deaf Children’s Society (NDCS) has conducted a survey with parents about EHCPs. The results reveal a picture of confusion and worry. Three-quarters of parents whose children have moved over to them had no confidence their child would get the support they need following the change.
Case studies include parents of a girl with profound hearing loss being told their local authority won’t even assess their daughter for an EHCP because she is considered to be doing “too well”.
Significantly, 80% of those surveyed said it had not been made clear that they had the right to request a personal budget for their child.
Luckily, the staff dealing with Thea’s case have been trying to find ways of helping her while the EHCP goes through the system. They’ve recently agreed a package that will allow a tutor company to help us. This finally means Thea can start studying for her A-levels full-time at home. She will take her exams in summer 2017 along with the current year 12 cohort. Had she not been ill she would be completing her A-levels this summer.
I fear not many parents have been as bloody-minded as us, or have stood up to authority as much as we have. It is intimidating: and when parents have had to watch their children struggle to understand the world around them, having the energy to fight for their rights is really hard to do.
We seem to have an LEA that is willing to listen. The NDCS survey suggests we are in the minority.
Thea’s story: ‘The extrovert in me disappeared going into school’
My education was mainstream from the start. My parents felt that I could meet the challenge. Although I was still developing speech, I could read books by myself thanks mainly to subtitles on TV and in films. So with intensive support from a brilliant teacher of the deaf and wonderful support assistants, I was able to start school at the same time as my hearing peers and access the curriculum, the first deaf pupil in my school to do so.
Initially, I felt I belonged. When children are that young they don’t know what stigma is, they just want to have fun. But as I got older, I became aware of the differences. I was mocked on my “questionable” pronunciation of words. My mum told me to come back at them with “I’m deaf, not stupid”.
However, there were incidents I just couldn’t tell my mum and dad. One happened when I was about six. It was a maths lesson and it was “carpet time”. The teacher was asking questions on multiplication. “Nine times 10 is …?” That stumped the others but I knew the answer. I put my hand up as did others. After endless incorrect answers the teacher saw my arm was about to fall off, and said: “Yes, Thea?”
Beaming with pride I answered “Ninety”. Everyone stared at me, then the teacher cackled. The punch line? “We finished that ages ago, didn’t you know?”
We all took up her cue and chuckled along, including me. It was that or cry. The teacher was given deaf awareness training and hopefully saw her mistake. But I blamed myself. I should have been like the others, I should’ve heard, I should just have not put my hand up.
Despite events like that one I enjoyed primary school. When it came to an end I got into the local grammar school, again the first profoundly deaf pupil to do so. Many of my new classmates had no idea how to speak to a deaf person. It was an environment full of unknowns and unexpected problems which added to my growing self-contempt. Isolated and painfully shy for the first time in my life, I developed a coping mechanism. I made myself invisible. The extrovert in me disappeared the moment I walked into school.
Also problematic were the situations where I would have to admit that I needed help: another taboo for me. If my cochlear implant needed new batteries mid-lesson, I would wing it to the end of the lesson rather than asking the teacher if I could go to get some.
Over the next five years I pushed through, spurred on by the need to prove myself equal to or above my peers in ability and, in spite of creeping anxiety, I got nine GCSEs at A*.
But that inner drive needed a lot of energy and after my exams I had nothing left to give. I have had to go down the route of home schooling because my mental health had to come first.
It has taken me 11 years to forgive that little girl with her hand up. But I will not forget her or those still suffering in silence.
The biggest lesson I have learned is that I have been educated in a system where I had to change myself to fit in. This is wrong. The mainstream education of SEN children has come a long way but there needs to be a renewed focus on the wellbeing of the pupils as well as their academic progress.
When asked what my proudest achievement is, I often reply that it’s my GCSE results. If I am honest, these come second to my greatest success of all: learning that there is nothing wrong with me.
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