It’s Monday morning, the Today programme buzzes in the background, it’s turned chilly and the cat is wolfing down breakfast like she’s not been fed in weeks. Everything is as you would expect in our ex-council maisonette in South London except there is a wailing coming from my daughter’s bedroom. It is the kind of sound you hear on the news from war zones; female relatives around the coffin of a young child. It is the sound of mourning; deep and unfathomable despair.
On the floor is my daughter, Thea, cold in her school tights and vest, occasionally lashing out to hit her arms or head. The hellish sound is coming from her, she is 8. Out of school she is bright, active, chatty and creative: in school she is often withdrawn, depressed and utterly miserable. The sound Thea is making today is new. Four years ago she screamed at us, clung to the bedcovers, hit us away from her, bit, refused to get dressed, eat breakfast or put her shoes on. There would always follow the shut down and the long slow walk to school in a deep depression. To do this to your 5, 6, 7 and now 8 year old takes a mental toll on a parent as well, obviously, as the child. This morning my exhaustion is at an all time low.
The cat has come in to comfort her and is doing a much better job than me. Thea’s long blonde hair is messy and tangled, her face blotchy and pale with purple rings around her eyes. At the weekends and in the summer holidays she’s a happy, quirky little girl who likes climbing trees, smiling at cats, dancing, listening to the Harry Potter books over and over again and has a real talent for drawing.
But today is a school day and it feels as if the world is ending.
In the bathroom my husband takes a shower before cycling to work in the local community mental health team. As austerity bites further and further into the NHS his caseload goes up and resources go down. He frequently looses sleep about the people in crisis he is trying to help. He has often said that he can’t cope with this at home as well as at work.
In the kitchen I am making porridge and continuing my ridiculous attempt to be cheerful. I flit between the kitchen and the bedroom. “Don’t hit your head. Come on, your porridge is ready. I’ll help you with your uniform. Here come on. It’s ok. Do you want honey or maple syrup?”
“Focus on the positive” said the SENCO at the new school “It’s hard work being a parent.”
The school refusal started 4 years ago, and, despite a background in theatre, I don’t know if my performance of ‘cheerful mummy’ is convincing anyone any more.
A few weeks ago my daughter came into the kitchen on Sunday night and said calmly “Can you please take me to the hospital?” I looked at her expecting to be told of another one of the chronic tummy aches, leg aches, head aches that need curing and was about to tell her I would get the calpol, “Can you tell them to kill me?” I managed to get to the bedroom before my knees gave way underneath me and I broke down in tears.
“Children say things” my friend says when he sees me tear stained in the park after drop-off, “you know how they are”.
We moved schools in September before the word ‘Aspergers’ had entered our worried late night parental conversations. The small, South London church school we pinned our hopes on has a ‘family ethos’ and promised trees, a climbing frame, a nurturing environment. Although the previous teacher at her community school was brilliant the school was cramped, chaotic and sometimes intimidating. Parents would often have slanging matches with each other or their children before the bell went. There is an order to the new school that impresses me, although the uniform policy is strict and children are made to walk between lessons with their hands behind their backs. In the classroom is a newly qualified teacher, so stressed and unhappy that she rarely smiles, let alone finds words of encouragement for any of her pupils. She barks at them when they aren’t following instructions, takes transgressions personally and thinks that positive reinforcements means giving out sweets to the children who have remembered their PE kits. “She hates us” Thea says, and I have witnessed first hand this young woman’s frustration and lack of patience with children who don’t follow her instructions. It’s not her fault, I tell myself, NQT year is stressful, she is young, inexperienced and she needs more support. I try not to take it personally.
The teacher complains that Thea is ‘slow’ to finish her work, holds her pen with an ‘incorrect grip’ and therefore must finish her work at playtime. The day is crammed full of ‘learning’, playtimes are a good time to ‘catch up’. At parents’ evening we talk about the ongoing assessment for Asperger’s, the wailing, the sensory issues and difficulty concentrating, the way she walks to school with her hood up, her shoulders hunched and her gaze down. We ask for playtime, for toilet breaks during the lesson. The defensive young teacher, who has clearly had enough of parents by this stage and wants us to leave, tells us that she doesn’t like labelling children, she can understand our concern, but she needs a professional diagnosis, and ‘mum, you need to be stricter about that hood’.
In January, eleven months ago, our GP referred our daughter to the Early Intervention team at CAMHS – the Child and Adolescent Mental Health Service, because she wasn’t sleeping and was making herself sick in the mornings to avoid going to school. Seven months later we were given an appointment, how that is ‘Early Intervention’ I fail to see, but obviously the austerity crisis extends to all areas of the NHS, and parents who are stressed out about their child’s mental health difficulties are usually too exhausted and worried to kick up sufficient stink. By this point we had run out of patience with Thea’s old school. Whenever I found myself in another meeting with her teacher or the SENCO they always told us how happy she was, how she had friends, was making slow but steady progress. But I had to lift her from her wet bed in the mornings, dress her while she wailed or screamed, concoct ways to get her to eat her breakfast and calm down enough to leave the house and we were almost always late for school. A constant stream of letters came home highlighting her lack of punctuality and threatening me with the educational bogey man. I cast them angrily into the recycling. Whenever I saw her in class assemblies or school plays she was blank, expressionless and tense. Like a bunny in the headlights. Uncomfortable. Her friendships were, except for two special friends, fraught with difficulties and anxiety. Whenever I left her outside her classroom she clung to me and walked in head down, hood up, resigned and miserable. I voiced my concerns over and over again, but was always told at school everything was just dandy and then finally when I broke down in tears and pleaded with them I received a phone call; ‘we are concerned about your mental health’. I was officially cast; the oversensitive, middle class, neurotic woman in a South London community school with children with real problems when mine were all in my head. They took pictures of her smiling (uncomfortably) and showed me a video of her stiffly contributing to a drama lesson. They begged me not to take her out of somewhere she was ‘so happy’. I thought of the sound of her retching with a toothbrush down her throat and her smiling face in a bath strewn with floating chunks of vomit; “I can’t go to school today mummy, look, I’ve been sick”. They suggested Horlicks as a viable treatment for anxiety and told her the cat was not allowed to sleep on her bed. Inside I raged like a banshee. As I rang around most schools wouldn’t give me the time of day – “Year 3! We have a waiting list of 20 pupils and no one has left since Reception!” “All our families are practicing Catholics”, “Sorry, but we don’t have any places at all”. Finally we got a place at a one form entry, Christian school. It was a few days before the summer holidays and it had taken 5 months but I was so relieved I could have wept, but I didn’t.
A week later the paediatrician at the bladder and bowel clinic suggested that we ask CAMHS to investigate Asperger’s Syndrome for our daughter.
This time I did cry. At first it was with relief. I read the profile of bright young girls with Asperger’s Syndrome on Tania Marshall’s website. Marshall is an Australian psychologist and writer with an interest in girls on the spectrum and everything sounded like Thea; her separation anxiety and out of control emotions, her difficulty with transition, her intense solitary play and difficulties with friendship groups and school, her overactive and expansive imagination, difficulty with bright lights and hair brushing. There were smaller clues too; her incredibly affinity with the cat, difficulty sleeping, nail biting and intense dislike of travelling any distance in a car. The list goes on and almost everything, with the notable exception of hyperlexia, or early reading and writing was a ‘yes’. But I thought, surely these things apply to hundreds of children, thousands even, surely they can’t add up to ‘Aspergers’. Aspergers is Curious Incident of the Dog in the Night Time, it is Rainman and Alan Turing it is odd and noticeable and obvious; Thea is just Thea; clever, articulate, analytical, thoughtful but with inexplicable difficulties in reading and writing, few friends and a pathological hatred of school and ‘learning’ that I have been trying to fathom since Year 1. But unlike all the examples of Asperger’s I knew of, Thea is a girl, and she is my girl.
To prove that Thea is simply a quirky anomaly she had a fantastic Summer holiday; camping, festivals, sunshine, fire and shooting stars. As soon as she was up in the morning she was out of the tent, climbing trees and running around with an enormous smile on her face. I tried not to think about Asperger’s too much and to concentrate on preparing Thea for the new school in September.
Fast forward to last Friday.
I am in a meeting with the head of my daughter’s school, her class teacher and SENCO and we are waiting for Marilyn from CAMHS to arrive. We make small talk about various aspects of school life, it is tense and our laughter is fake and hollow. I am ‘that’ parent again. Only now Marilyn is my saviour, she is the CAMHS care co-ordinator who doesn’t think that it’s ‘ok’ for my daughter to be hitting herself, wailing in the mornings or talking about dying. She arranged for an in-school observation (damning) and the community paediatrician to meet my daughter. The CP shared my concerns and referred us to the next stage of ASD assessment, but warned that it will be at least a 3 or 4 month wait. He is worried about my daughter. He doesn’t think I’m imagining it. I feel some of my depression lifting. He suggests part-time school might be the way forward in the short term. I phone my husband at work and he whoops, I can hear a genuine excitement in his voice.
The Head says she will not countenance part-time schooling, attacks the in-school observation and implies that Thea is a manipulative little actress. Then she gets up and leaves the meeting seemingly without any explanation. We look awkwardly at each other across the large table. Again Marilyn stresses the seriousness of the state of Thea’s mental health, her suicidal ideation, her high anxiety, her health and wellbeing. The SENCO tells us that there is no room in the curriculum for my daughter to have even one day off school. With one day off she will fall into a pit of academic retardation that will be impossible for her and the school ever to climb out of. Marilyn breathes deeply. She says, ‘ok’ she understands the school’s concerns, and stresses again the seriousness of the situation, the impending ASD assessment. The teacher asks if I have considered home schooling? The SENCO asks if they will have her back at her old school? Marilyn interrupts and asks what they can put in place to support my daughter at school – Social skills groups? Small group teaching? The SENCO wearily repeats ‘As I’ve already explained to mum, there’s a problem with TA sickness and we can’t put anything in place until January’. “So you won’t do anything until January?” repeats Marilyn – “No” comes the very definite reply.
I cannot speak. I cannot trust myself; I am shaking with anger and disbelief. I wonder if Thea had a physical illness would she be treated this way? If she made bigger bruises on her arms or her head would they hear the alarm bells that we have to deal with most mornings? Or would they think she was trying to manipulate us all with her cunning 8 year old ways. I look at the clock and it’s ten past three. I should have left the meeting to collect her from the classroom. “Yes” says the SENCO, “she’s probably worried about you”.
On the way between the meeting and the classroom I make a silent vow to my daughter. I am not pretending everything is ok anymore. I am not going to peel her off her bedroom floor and smile and cajole and comply with a system that is so deeply broken it places OFSTED results over the wellbeing of pupils. Where learning about fronted adverbials is more important than children’s mental health. Whether my daughter has Asperger’s or not is, quite frankly, irrelevant at this point. She needs kindness, understanding and compassion and her mental health needs to be taken seriously. I can’t believe that I have put up with this for so long, that I have forced her and us into this battery chicken, one-size-fits-all education system.
I write this on Sunday night. The night when Thea usually starts to get tearful and anxious after a generally happy weekend. But this time is different. She is in bed, asleep and curled up with the cat, there were no tears, no tummy aches, no pleading and no talk of lethal injections.
We will not be going to school tomorrow.