Welcome to Week 11 of sharing experiences from families whose children are NOT fine in school. So many people have contacted me, keen to tell their stories, but we all know there are so many more who simply cannot write about what has happened to them. That might be because they are too broken, too busy fighting for the right school still or just don't want to relive the terrible, stressful nightmare of trying to force their child into school.
School can be a great place when the environment suits the child. Many factors can play a part in an educational setting not being right and not meeting the needs of certain children. There's no point hiding from this and simply threatening attendance fines. A lot of work needs to be done to make sure that every child is being given the opportunity to learn.
This week's family has had difficult times dealing with the system, and I think one thread running through this account is the lack of clear, honest communication from those in the school settings. Another aspect that jumps out for me is bad attitudes. How do we change them?
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Where Did It All Go Wrong?
I am asked this more times than I care to think about. So, you may wonder, where did it all go wrong? My mother asked me this recently, still struggling to understand just why he isn’t functioning. The ‘oh no’ calls started early on for us, in the nursery, where, despite some ‘incidents’, he seemed to be happy. The calls were sometimes jovial and other times more serious. There was the time he swallowed the contents of a tube of blowing bubbles, clearly not sure what to do with them. He was into everything and certainly kept nursery staff on their toes. Those who had a sense of humor adored him, but those who liked order and compliance would despair.
He then went to a preschool close to home, attached to the infant school that I hoped he’d go to. Oh boy, I was not expecting it to be easy but neither did I, for one minute, think it would be quite as hard as it was. He appeared to enjoy some of his time in preschool, and one teaching assistant would tell me how she loved watching him play in the outdoor water play area. He flitted from one sensory area to the next and was most content when it was free play time. But, it was obvious he wasn’t fitting into the mould as I’d get pulled aside by staff every now and again for, ’just a little chat’.
I was told one day that he was sent to the head’s office for making poor choices. I was horrified. I was of course eager to find out what he’d done, and, in the teacher’s words, he’d “called the caretaker a ‘grumpy old man’”. Apparently, he stared blankly and showed no remorse when discussing what he’d said with the teacher, so the only option left was to send him to the head. Geeze I thought, he’s just 4, give the kid a break! I wonder if you’re thinking, was the caretaker actually old and grumpy, yes, he was truly notorious for being cantankerous! Afterwards I was assured ‘he isn’t one of the naughty ones, he just does some unusual things, he’ll grow out of it’.
And, this is where I went wrong, I listened to a teacher. A professional. Someone who should know what they’re talking about. Who knows far more about child development than me, I thought, right? Wrong. Why did I ignore the fact that I know my child better than anyone? I’d already listened to countless professionals dismiss my concerns, like the Health Visitor who said ‘he’s smiling and talking, he looks fine to me’. Yup, I did what society conditions us to do, I trusted all of the professionals and ignored my gut instinct. I had no other option but to watch and wait.
The main impact of my son’s struggles were felt at home and at his childminders who he went to for wrap around care when I was working. The childminder seemed pleasant, friendly, and she even had pets which he adored. Yet he wasn’t coping. I would imagine a combination of ‘after school meltdown’ and insufficient support at the childminders made for an overwhelming environment for him. I was told he was biting other children, not listening, not playing nicely, not sharing…you get my drift. I knew his biting habits, it meant he was either happy and overstimulated or angry and frustrated, either way, the childminder was flummoxed. He also struggled with the transition home at the end of the day and I sensed the childminder’s veiled frustration with this long drawn out process, and I’m sure if I did, he did too. I was always met with a “a good day…but .. ”. Argh. The dreaded ‘but’. I did have to stifle a laugh sometimes though. Such as the time he left the dinner table with a freshly placed plate of food, leaving others at the table, walked into the kitchen and scraped the food into the dog bowl. He was clearly expressing his displeasure at the sight before him. Genius move some might say. No, not the childminder. The final straw came the day that he bit their dog. Yes you heard correctly. I’m sure the childminder rejoiced in telling me that she couldn’t take him any more after that incident, so there ended that arrangement.
Next was school. The time that has parents filled with equal measures of excitement and dread. Big school. On his first day his teacher made a remark about how smart he looked in his jumper, which was met with a very matter of fact reply about it being a sweatshirt and not a jumper, whilst he casually strode past her. He had an air of an Enid Blyton character about him in those days with vocabulary beyond his years but missing huge gaps in social communication and emotional awareness. School started well, with the notorious honeymoon period and I waited patiently for the tide to turn. It didn’t hit us like a tidal wave like before. I was called in to speak to the teacher quite early on as they didn’t quite know what to do about my son. He wasn’t the worst behaved student but nor was he complying. he was playing rough with other kids, he was ‘rude’, didn’t pay attention … again, you can figure out the rest. We talked about reward charts and time outs, which the school said weren’t working. I laughed. Tell me something I don’t know.
In despair, feeling like a failing mother, I turned to the Health Visitor yet again, who suggested a parenting course, so, his father and I agreed to do it and see what we could learn. It wasn’t a total waste of time, it was partly a tick box exercise but I truly wanted to find out what I was doing wrong. I took away some strategies from the course, such as active listening, validating feelings and allowing learning by experience. No longer did I insist on him wearing a coat, even in the snow, I’d validate how warm he felt, and allow him to walk outside and respond to the cold himself. We were on a roll.
The problem here, is that school still followed the reward, consequence method so the inconsistencies weren’t helping him at all. He managed to scrape his way through the reception year without too many major issues, other than the odd school fight. I was the mum who’d get called over to chat to the teacher at the end of the day. I loathed this, as I could see my son squirming next to the teacher as they talked about him making ‘poor choices’. His response upon leaving school was often ‘flight’, he loved the freedom from being outside of the school gates, and I was the crazed mum weaving in and out of other parents chasing him down the road. I mostly succeeded in suppressing the inevitable eruption and he saved meltdowns for the safety of home.
Year One was challenging and, in his first week, he came home with a slip stating he was starting an intervention group. It felt so wrong that the school was making decisions about my son without my knowledge. I needed more information and requested a meeting with the Senco. Even during or after the meeting, I wasn’t told about all the support, I had to discover this for myself whilst helping in class, which was an eye opener. He was being regularly taken out of class for his ‘support’, he was also sat on the mat next to the teacher in carpet time, and he was paired up with the smartest kid in class, whom I’m sure, acted as his TA. He was feeling different, singled out by other pupils too targeted because of it. He found work tough and friendships even tougher. We had yet more ‘can I speak to you’ teacher chats, sometimes about the most ridiculous things. For example, one meeting was to discuss his mealtime habits. He was eating dessert first, he had to eat his meals in the correct order. Not only this, seemingly, he was covering up his ‘special diet’ badge, hiding in the standard dinner queue so that he could sneak in a dairy laden chocolate cake and custard, rather than the alternative offering of fruit. It’s no surprise that from this point onwards he commenced his hatred of all things fruit. This was more than ensuring his special diet was adhered to, this was demonising him for wanting a delicious looking pudding with his friends. When at home one day, I noticed him chewing on a pencil and warned him that he could get splinters in his lip whilst doing so. This led him to telling me about a time when his teacher told the class to stop what they were doing and focus on him chewing a pencil. The teacher asked the class if he should be eating a pencil. She posed the question that he might not have had breakfast. Not only did she ignore his sensory issues that I repeatedly pointed out, but disregarded his feelings whilst publicly humiliating him.
School was making him miserable; he was losing his happy go lucky attitude and, at the tender age of 6 my son started talking suicide. I’d had enough by now and on another GP visit, having previously had CAMHS and Paediatrician referrals rejected, I was on a mission. Mumma bear came out fighting, and the GP was, well stunned. They were very supportive and with all of his early childhood info, and previous referral attempts, they made another referral. The GP advised me to tell the Senco to support his referral and if they don’t, he needed an explanation why. I was elated, someone supporting him at last. I discovered sometime later that the Senco informed the school nurse that he didn’t have any additional needs at all, it was just a parenting issue. Why did they miss so many vital clues? Were they blind to them or were they protecting their precious budget? I’ll never know.
Due to my persistent and friendly phone calls to the Paediatrician’s secretary, we managed to get an appointment sooner than I expected and he had his assessment. He spent around 20 minutes on a Melissa and Doug lock puzzle, and at the end of the assessment the Paediatrician declared he had autism spectrum disorder. The following words she said will never leave me, “your son will now get the help he really needs, you’ve opened doors for him”. Paaahh. Almost four years later, and he is in the worst place he’s ever been and still without support, and not for the want of trying !
I saw the teaching staff in a different light after reading the assessment paperwork written about my son. They’d observed him chasing children in the playground who were yelling at him to go away, and when asked by a teacher what he was doing he said he just wanted to play and get one of them to be his friend. School never told me this nor did my son. He would be selectively mute at times and I never really got to know what went on at school. Something else I read was a conversation the Paediatrician had with his teacher. She reported that he was standing naked one day in a PE lesson and all the children around him were aghast, telling him to get his clothes on. The teacher asked him to explain what he was doing and he replied “do I have to”. No one ever told me this. Is it any surprise that other parents weren’t shocked when I advised them of his diagnosis? No doubt they were aware of far more that went on at school than I was.
I decided a change of school was needed, somewhere which would meet his needs. The new school was fully aware of his diagnosis, offering all the support he’d had in his previous school. But, wait for it. Lies, it was all lies as we were soon to find out. I don’t understand why schools do this. He was caught in a power battle between teaching staff and Senco. They played with my child’s wellbeing and had absolutely no care or thought about him whilst playing this game. His class TA would tell me things like his tics had improved. ‘Tics, what tics, no one told me he was getting tics’ I said. I was later deemed to be a difficult parent and was asked to stop ‘hassling the TA’ by emailing her. They didn’t deem it necessary to update me on changes at school, or what had happened during a bad day. They didn’t like me and I couldn’t give a damn, my son was all that mattered. The Senco told me they weren’t going to make adjustments for him as he needed to learn to fit in, just as he would have to fit into the world around him. Her conclusion was, despite the NHS diagnosis, that he didn’t have autism, he was ‘lazy’ when gazing out of the window, ‘lazy’ for not being able to write correctly, ‘lazy’ for not finishing his work and at other times, and, ‘making poor choices’ ..’again’.
I was going round in circles, no one was listening to me and our lives were fraught with frustration and stress. I wrote to the head of Children’s Services, my MP, DfE, Ofsted….you name it, I was not going to be silenced. He needed more support, not less. I warned them all that I could see school phobia on the horizon, as each day worsened. He was bullied by the alpha males in the class, who spotted his differences and used them to their advantage. He was desperate for a friend, homed in on one of them, and made it his mission to befriend him. However, the boy said if he wanted to sit with them at lunch he would have to earn his right, and would give him a challenge, for example, fight another kid. He was vulnerable, he’d do as they said and be punished as a result. On other days he came home telling me he sat on a bench on his own crying. Break times were awful for him, as were the assemblies and prayer times. They were setting him up to fail.
I’d be approached by parent helpers who’d tell me that my son was struggling in class, or on day’s out, assuming that I’d been updated by teachers beforehand. All information was withheld from me. His meltdowns were now explosive, morning and nightime. He was late for school most mornings and instead of listening to my pleas for help, school stated that it was nothing more than separation anxiety so they couldn’t help. The bullying was just his perception of the friendship. I suggested an EHCP but the Senco laughed in my face saying he’d never get one. He reached a point where he wasn’t sleeping, and when he did, was having nightmares. He was very emotional and one day he thought he was going to die at school. He was never to return to that school again, he hit rock bottom and it wasn’t pleasant to watch. I sought help and I applied for an EHCP, which was granted. CAMHS supported my son and advised the LA that he shouldn’t return to the old school, regardless, I would never have sent him back there. During an appointment with his Paediatrician she had observed him in the waiting area, acting as a puppet and then like a film director, telling me what to do, where to go etc. We’d previously had discussions about PDA in earlier appointments, in one she’d told me it didn’t exist, but nonetheless I’d completed questionnaires, gave updates on behaviours and advised that only PDA strategies worked. It was after this appointment that his diagnosis changed to ASD with marked pathological demand avoidant traits.
Unfortunately finding the right school was the really difficult part. Eventually I found a specialist school that looked a good fit for him. They were experienced and knowledgeable with PDA, or so they told me. On my son’s first day the headteacher exclaimed that he seemed settled in class and “didn’t look at all anxious”. Ha. I should have asked there and then what anxiety looked like. He had the honeymoon period of around one week, his shortest yet before problems started. There were bigger issues this time. I knew school wasn’t following PDA friendly strategies and I called a meeting to get to the bottom of the issue. They didn’t have a clue about PDA and I felt like I’d been duped, again. I gave them another chance and things seemed to improve, but it was short lived. He returned to school after a school break and all hell let loose. There were numerous changes at school, without warning or preparation, and he couldn’t cope. But instead of supporting him to settle in, he was given consequences. It became a vicious cycle of anxiety, behaviour and yet more consequences, and I explained to staff they were doing totally the opposite of what he needed and what his EHCP detailed.
He would come out of school saying they had no right to be a school for autism when they know nothing about autism. He was right, well, they certainly didn’t get to know him. He was too anxious to go back, we tried phased returns with different staff using different strategies, but it didn’t work. I called an urgent annual review meeting to get to the bottom of what was happening. The headteacher suggested that we try what other parents have done and restrain our son, force him into the car in his pyjamas, one parent manhandling him and the other parent driving, and, once at school, hand him over with his school uniform in a bag and the staff will ‘take care of him’. I couldn’t believe what I was hearing. I advised them at this point that my son wanted a new school to which the headteacher replied ‘that’s a very dangerous thing to do, giving your child choices such as choosing which school he wants to go to, he’ll be calling all the shots’. My mouth fell wide open. No wonder my son didn’t like it there. I told the head in no uncertain terms that it would be negligent and dangerous for me to ignore my son, and the fact that he said he’d try to kill himself if people didn’t listen to him wasn’t something to be ignored. The room fell silent. I’d made up my mind there and then, never would he return there again.
That was a year ago. In the past five years my son has been out of school more than he has been in. I’d home educate him if he would allow, but he wants me to ‘just be mum’ and not a teacher. If he senses just a whiff of ‘learning’ he calls me out and the trust is lost. This week alone my son has self harmed and told me he wishes he was dead more than I ever want to see or hear. Thankfully his cheery self appeared later and exclaimed that his puberty mind was playing games with his normal mind and he didn’t really want to die. Professionals have failed him, schools have broken him, teaching staff have neglected him and services have left us to fester. I worry for him daily. I worry about myself too. But right now we are doing OK at home, his only happy and safe place, where I will do everything I can to make things right for him.
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There are many more examples of families being failed by the system. Not all exactly the same as this but all sharing the common theme of school not working. Most of those families caught up in the system currently will not have the time or energy to be able to write about their experiences, so what I'm sharing here will be only a very small representation of what is happening across the country.
If you feel able to write about your family's 'not fine in school' story please email me at stephstwogirls@gmail.com. I understand it can be difficult for families to talk openly about this topic - for some there will be a need to stay anonymous and that is fine.
For any parents and carers needing help right now, I highly recommend the incredibly helpful Not Fine In School website (notfineinschool.co.uk). Square Peg is an organisation making great strides in terms of raising awareness across different media formats, and also looking into legal challenges around attendance policies. There are many supporters behind the scenes and in the Not Fine In School Facebook group who have been, or are going, through difficult times during the school years. Plenty of knowledge is being shared which could make a real difference to other families. If the system is not fit for purpose we need to shout that out loud. Please help, by sharing your story or sharing this post to get the message out there.
For the other weeks in this series please click the links below:
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