Tips for new SEND Parents

The life of a colourful autism family

I’d like to start by quoting the formidable Sally Phillips ‘The special needs club is one that nobody wants to join but once you’re in, its the best club in the world’.

The reason its the best club, is because it is full of parents, carers, medical professionals, teachers, educationalists, Lawyers and supporters who all have one single aim, to improve the world for children, young people and adults with SEND. We all have different areas of knowledge, experience, expertise, but collectively we are a powerhouse and you’re already a very welcome member!

Finding yourself thrown into the SEND world, educational processes and legal and medical terminology can be overwhelming. I thought I’d write a quick list of top tips for new SEND parents struggling to get their children’s needs met. It isn’t a definitive list and it isn’t a list that everyone must do in order to achieve the…

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Autistic Christmas

It’s a year since Thea’s diagnosis.
She’s been out of school for over 7 months now.
She started OT this week (not on the NHS, as she was refused an assessment).
Our journey is sometimes a very painful one for both of us.
We are going to have a lovely Christmas. We are going to say ‘no’ to a lot of things, channel our inner Mrs Tiggy Winkles and hibernate with chocolates & people who get it.
I like this post about Autistic Christmas from Autistic Motherland.

Paula Sanchez

I haven’t really written much for a while, it often feels like everything has been said, and I’m not sure what I can add to the ever-growing treasure-trove of autistic writings. But, I remember back when my son was younger and I was looking for strategies to support him, and then when I was struggling and not sure about getting myself assessed, and I remember that what helped me most was reading lots of accounts by autistic people and parents of autistic children (autistic and otherwise). I didn’t always agree with what I read (and still don’t), but reading about the same thing from many different angles is helpful, even if it’s just to confirm that they’re wrong and I’m right…

I know that many others have written about Christmas for autistic people, especially how to help autistic children cope with the festivities and social requirements. From my perspective as…

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Too much, too young

My daughter, Thea, is 9 and was diagnosed as having ‘moderate autism’ 4 months ago.

She is also now diagnosed as having clinical depression and clinical anxiety.

Before year 1, I had a happy, healthy little girl, full of confidence and crazy ideas.

Now, in year 4, I have a child who likes to spend much of her day in a sleeping bag, and is often too exhausted or scared to leave the house.  When we do leave she has to wear her headphones with her hood pulled up to protect herself from overwhelm.

So what went wrong?  What happened to turn my wilful, confident, happy little girl into this shadow of her true self?

School.

It sounds like an over simple explanation, but I believe it to be true.

5 years of school happened.

More specifically a school system in the U.K. in 2017 that is so rigid and rushed and inappropriate for child development that it has left my daughter traumatised, unable to find a single thing that she likes about ‘learning’ and terrified of setting foot in any school ever again.  At nine years old.

She does not have a learning disability, adults who meet her comment that she’s very bright, funny and astute; “Quirky, but I like that; she’s herself.”

These of course, are adults who don’t have to concentrate on getting 29 other children up to a certain level of educational attainment by next Thursday – whether they are ready or not.

I’m beyond anger now.  In the numbness of the weeks of living with my child in a sleeping bag, watching Minecraft videos with the curtains drawn and trying to get her to go out in the sunshine to the park, or see her best friend, or go swimming or do any of the myriad of other things that she used to enjoy doing before school made her hate her life I’ve lost all sense of perspective.  And the EWO is still talking about court and unauthorised absences.

I just have to get my girl well again.  To hell with school.

Follow up:  I wrote this post about 2 months ago and I’m very pleased to report that Thea is doing much better now.  We are not entirely out of the woods, but there’s a lot more sunshine coming through the shadows.

Wolf howling at moon

Fight or flight?

I’m sitting with my 9 year old on my lap rocking her like a baby, saying “shhhh. shhhh” and stroking her hair as she makes gasping noises and struggles for breath.  On Thea’s 1-5 anxiety scale, I’d say we’re at a 4.  It’s not volcanic-meltdown-self-harming kill-me-now stuff, but it’s upsetting.  Thea is upset.  I am upset.  Obviously I can’t show her I’m upset, I’m her mum.  I also can’t show her I’m upset because the Head Teacher just told her that she’s making me upset.  By being upset herself.

So being upset is officially not allowed now.

We rock and soothe for about half an hour.  The way you might do with your 2 year old if they’ve had a nasty shock.  I’m doing this because I’m trying to stimulate her vagus nerve and her parasympathetic nervous system – the “all clear” system, which will finally triumph over the “fight or flight” mechanism of the sympathetic nervous system and allow Thea to breathe normally, speak, generally calm down, relax and be herself again.  We usually go through 2 phases, the first phase is regressive, non-verbal, panic, the second phase is verbal, overthinking, panic; a result of the autistic brain’s over-capacity for black and white thought.  “School is awful, my teacher hates me, all the girls hate me, they think I’m weird, it’s too loud, I hate myself, I hate my life, there is nothing good in my life at all”.  During this phase I try to get Thea to concentrate on “one thing” like breathing, or eating something small, to calm her mind.  After about an hour or two I may have my child back again.

I’m very pleased with the progress we’re making on getting out of emotional meltdown.  I’m less pleased with the amount of practice I’m having – i.e. too much.

Thea’s been sleeping in our bed for the last few weeks because she’s so stressed she can’t calm down in her own bed.  Bedtime makes her think about school the next day, school sends her into “fight or flight” mode and you can’t sleep in “fight or flight” mode. In this state your nervous system is prepped to, in evolutionary terms, run away from the mammoth that is about to gore you or, in school terms, the teacher who is about to yell at you for doing something wrong.  Or maybe not at you, but at the class who are too noisy.  Or maybe the teacher is telling you that you’re too slow and you’re not following instructions properly.  Or maybe the class are getting unruly and the noise level is too high.  Or maybe you don’t understand if the boys are laughing at you or with you about the joke you tried to make.  Or maybe the girl next to you is pinching you for no reason you can see and you’re scared of telling the teacher because she might shout again.  Whatever it is it starts off as general unease and it builds to a crescendo of anxiety and tension that is unbearable.  But, my courageous daughter holds it all, smiling politely and trying to mimic the other children, so that school can report that she is “just fine”, “happy” and “settled”.  In some ways I wish that she would just pick up a desk and fling it across the classroom in a typical autistic rage rather than keeping it all bottled up ’til she gets home. Then at least school could see – there IS a problem.  

I keep asking myself why Thea is still in school, albeit on a part-time timetable.  Why am I doing this to her when I could home-educate and be damned.

Selfishly: I love my job.  I miss my job.  I miss the freedom of being me and not being a 24/7 mum. Oh and there’s that ‘being permanently broke on the one NHS wage’ thing too (although I am so incredibly grateful for that one NHS wage, many are much worse off).

Practically: I have a lot of primary school experience.  I have an MA and a PGdip.  I could probably get her to the end of year 6 academically but it wouldn’t be a breeze.   I’d love her to miss out on the pointless SATs exams and take more time for art, creativity and music than she would have in mainstream education. But teaching physics, biology?  Secondary school subjects?  Constructing a chemistry lab in the back garden?  Languages, humanities….  It’s been nearly 30 years since I took GCSEs, a lot has changed.

Ironically: I am more of a 24/7 mum now that Thea is part-time in school, 2 hours a day, than at any time since she was 3 and at pre-school.

I also hold out a faint hope that with the right support and a kind and caring teacher Thea might thrive in mainstream school.

But that hope is rapidly fading.

So do I fight the mainstream education system that is so rigid and inflexible it is causing most of Thea’s anxiety and learning problems or do I take flight to try and invent a new way of learning at home.

Or maybe I take the third option and freeze.

Rock meet hard place.

 

Unable to attend school

I wish that I had read this post years ago.
Lots of sane and sensible advice.

It Must Be Mum

Rosie and Jo’s mum.

When Jo was eight, I was told that, if she didn’t ‘want’ to go to school, I should manhandle her out of the house and all the way into school.

I called her CAMHS psychologist and explained. She told me to manhandle her into school too. Incredulous, I repeated her words back to her and she confirmed that I had understood correctly. She later denied it. 
 
I decided not to follow this advice and, for a couple of weeks, Jo’s attendance was erratic. The school called in the educational psychologist and asked me to meet them and her. The school staff re-iterated their position; school isn’t negotiable and Jo needs to be made to attend.

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Morning is broken

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.