This was something I heard myself saying recently. I was with senior staff from Lily's school and we were (again) racking our brains to think how else to help. Lily is struggling to attend school, thanks to recently being overwhelmed with memories linked to trauma from a different school. As part of this, someone suggested … Continue reading “That would make it very difficult for me to bring her in again tomorrow.”
Category: Peter and Lily’s Mum
I'm exhausted with having to micromanage systems and process. Too often the paths to accessing the services my children needs are cluttered with semi-automated processes manned by professionals that are seemingly unable to use their knowledge, skills and judgement. Any pre-existing commonsense, autonomy and advocacy seemed to have been driven out. Most recently, CAMHS systems meant that … Continue reading Three powerful questions to help your child access the services they need.
So, it is soon school trip season. It is a few years since I was introduced to 'groups' in social media and one thing I have noticed each year is a pattern whereby small children who were looking forward to their school trip are removed at the last minute. The accounts that distraught parents write … Continue reading Navigating the end of year: will children be intentionally excluded from school trips? Can more be done to prevent common difficulties?
... and how does it feel? Well, it feels effortless, though you know that hard work is being relentlessly applied, and it looks easy, though the skills of the staff are clearly evident. It also feels respectful, objective and there seems to be no interest in blame, gossip or drama. The business of the day starts … Continue reading When ‘school’ ‘gets it right’, what does it look like?
A must read for all families that have children who struggle to attend school and all professionals that work to support these families. See also the guide specifically for professionals/schools. Please share this widely so that as many families and professionals as possible can access it: it's an essential resource in my opinion. https://schoolrefuserfamilies.wordpress.com/2018/01/04/new-guides-for-parents-schools-when-a-child-struggles-with-school-attendance/ Above is … Continue reading When your child isn’t ‘fine’ in school. Superb resources for families and for professionals.
What does that really mean? It means that if you can fit into the one-size-fits-all service that was designed for neurotypical people with an ordinary upbringing and a lifestyle that means you can drop everything and travel to a destination of our choice... Then, and only then, will we consider you engaged enough to help … Continue reading We can’t help if he won’t engage…
What if... Lily receives excellent support from a school that is genuinely inclusive at heart. I can't help but wonder, what if? What if, from an early age, Peter had been offered the type of support, within the same sort of school culture, that Lily receives now. You see, Lily is believed. Everything stems … Continue reading Is the culture fostered by the school leadership team the most important intervention a child can receive?
As a neurotypical I am reliant on Peter and others to help me to understand the awesomeness of autism from the inside. Aside from Peter, the person I learn the most from I 'talk to' nearly every day, care of social media. Today's lesson was amazing I felt the need to share... "I wanted to … Continue reading Sensory overload: the inside story
Yet again I hear of a parent being informed (this time by a paediatrician) that they need to ‘work with school’ and so I feel the need to vent… This is what almost all parents want more than anything else: to be able to work with WITH school (staff). There are a few things that … Continue reading Why does the parent have to be more ‘professional’ than the ‘professionals’?
Last week I got the chance to spend time with some SENCos. I was invited to talk about Peter's story and with his permission, I did just that. It's the same story every time - there is no question that there are very many professionals 'out there' that want to 'get it right'. For about … Continue reading It’s not all bad news… my recommendations to commissioners and service leaders
It has occurred to me to leave this post right there. I know there are many parents with fractured hearts that will TOTALLY get it. Today I can't stop crying. I miss him so, so, much. He is settling and having the chance of a life and a future and he nearly didn't get that. … Continue reading I miss him. God, I miss him.
I have heard, one time too many, that a child won't be referred by a GP for an autism assessment unless school staff 'agree' or 'have concerns'. Teams that do this and professionals that partake are not, it seems, following their own professional, evidence-based guidance. A diagnosis of autism is carried out by a multidisciplinary … Continue reading Is there too much gate-keeping for autism assessments?
Peter tells me it was his idea and maybe it was, or maybe his skilled speech and language therapist planted the seed. I'm not sure? Either way, it's been a great way to talk about what to say and what not to say, and to be honest, I think I would benefit from using this … Continue reading Is it a ‘thinker’ or a ‘sayer’?
I love being Lily's mum. I love being Peter's mum but this post is about only having to be a mum. It's a long time since I have only had to be a mum to either of my children. Being 'just a mum' is a privilege that many parents will never experience. I suspect that … Continue reading The privilege of being ‘just’ a Mum that so many can never experience.
Just lately I was chatting to another parent, who went on to share her experience of helping a man at the jobcentre she worked at. It turned out that a little curiosity and kindness altered the course of his life through the late diagnosis of a SEN. Here is the story she shared: "I returned … Continue reading Curiosity and kindness can lead to changed lives. Literally.
A day in the life of a SEN mum - tedious, but real. The sort of low-level damaging drama that many of us live with, day in day out. A story of the value of kindness, of people doing a little to help when they can and of those that don't. Peter needed his new … Continue reading Can’t you just be kind? A letter to my GP practice.
Those wretched, sparkly new uniform, shoes and bag pictures with happy, smiley, children that are widely shared at the beginning of a new school year were enough to finish me off some years. For Peter, it was especially cruel. He often felt that his childhood had been ruined, that he had spent most of it feeling … Continue reading “Why doesn’t my childhood matter?”
Said the GP receptionist, kindly, gently and in an almost apologetic tone. Yes indeed. There are many costs. They include my identity, my career (job), pension, salary, professional status, our mental health and time... time with each other. Having choices about where my child lives ripped away from me is another one that springs to mind, … Continue reading “There might be a cost for that.”
I have previously written about children that fall between the gaps, those who seem to be 'Nobody's Problem'. Here I have written a template letter GP that I think could help. It was written with this scenario in mind: You and your child are desperate. S/he is struggling to get to school, they are coming … Continue reading When your child is struggling can your GP help?
'Catch all' strategies prescribed indiscriminately (and that must be completed before other services are accessed) can't possibly be the right approach. Sure, it is a way to manipulate waiting time information to show an improvement. No doubt it will reduce demand too, as some families simply can't face it or can't manage to get there … Continue reading Early Intervention does not mean: “send them on a parenting course”
Not much to ask really is it? Parents generally know their children well. When things aren't 'right' parents can be pretty good at noticing. Can't they? When children have difficulties, disabilities and/or medical issues their parents are a gold mine of information about those issues. Aren't they? Last year, by about 6 months into his … Continue reading Just listen to me and properly assess him, please?
There is no question that things would have been different if they had said sorry. It doesn't change the past, of course, but it has the power to change future direction and how the future is experienced. For example: If they had said sorry then I would never have followed my instincts to probe further … Continue reading They should have said sorry.
Next month I will start my 'Return to Nursing Practice' course. This is not 'exciting' - I am not being turned into a carefree, responsibility-free 18 year old again. It is 31 years since I first started as a student nurse and I worked until 4 years ago where I had a senior job in … Continue reading SEND: There are costs to parents too.
A year ago Peter was at a different school. He had a fabulous teacher; a true expert, but that alone was not enough. He needed the care staff (many of whom we were very fond of) to understand his needs. He needed a continuation of his specialist psychological therapy that was started when he was … Continue reading Not all specialist schools are equal
So, my friend Lucy and her husband recently went to tribunal and the games and shenanigans from the Local Authority (LA) were quite something. We thought you should all know about them - forewarned is forearmed so they say! Just so you know - I have no legal training so do check out facts with … Continue reading Education Tribunal and Local Authority ‘Games’
It's simple. Look after her child in a way that accurately reflects their needs. To do this right you need to understand her child. You may have to develop some humility, improve your communication skills, learn a few new things, test them out and liaise with 'Mum' and some professionals. Not to hard right? Part … Continue reading You want ‘Mum’ to be less anxious?
Is is stigma? I'm not sure, but I do feel that there are dark clouds of suspicion that hamper many conversations. A little while ago I met Lily's new school SENCO. It was a short informal chat at the school gates. She was friendly, open and clearly passionate about SEN. I enjoyed meeting her and … Continue reading Am I perceived as dangerous?
I was recently asked to describe what I believe that ‘children with autism and their parents/carers want’. It’s a good job that there was no word limit…. I answered that we would like: our concerns to be properly considered and fully explored by professionals that are trained to and invested in understanding the subtleties that … Continue reading What is it you want, exactly?
Just a quick one building on Rosie and Jo's mum's post 'what to record and how to store it'... One of those things I wish I had started years ago. Use a table to keep a log. That is it. A little bit of effort now and I promise you, you will be so glad … Continue reading Make a log of EVERYTHING. It will be worth it…. trust me.
This is a story about trust. Now I can appreciate that to many, seeing the words ‘trust’ and ‘Local Authority’ (LA) on the same page will evoke strong feelings and I completely get that. We have been shafted in the extreme in the past – even hardened SEN warriors gasp when they see what happened … Continue reading The Man from the Local Authority
Serious question: is bullying a method that staff in education, health and/or social care use to ration their limited resources? After all it isn't uncommon to hear "It was all fine until I requested a specialist school" or "As soon as we requested an EHC assessment it all changed." These seem to be magic triggers … Continue reading Is bullying a form of rationing in the Public Sector?
"We took a wrong turn, then another wrong turn and then we ended up in a field." Peter was asked by his Year 4 class teacher why he was 20 minutes late for school. It was the end of term, he was exhausted and I had let him sleep in. The school knew this. I … Continue reading Why do they say “I’m OK”?
Possibly one of the many lessons that I have been slow to learn over the years is when to stop hoping things will get better. When to stop trusting, believing and imagining good intentions in others. When to realise that very many 'professionals' are anything but 'professional' and that someone may have the title 'expert' … Continue reading Know when to stop flogging the dead horse.
I collected Peter from his residential school today and his clothes smelled of the school washing powder. So what? Jo sat an exam last week. Her mum and dad knew nothing about it until the last minute. DJ had his hair cut without his mum or dad knowing. The first they knew was a photo … Continue reading Washing Powder
I learned a lot from the contents of my Subject Access Request. Under the Data Protection Act I requested a copy of Peter's files and along they came. In theory, there should have been no great surprises should there? School staff should work with me in the spirit of a shared aim of 'the best … Continue reading Bullied by Headteachers: No fresh starts allowed.
Each time I hear of a 'ban' on the latest craze of fidget toys my stomach churns. You see, with good reason, I don't trust all school staff to understand that equality causes harm to many with SEND. Equality can prevent Equity as Linda Graham demonstrates.... I do wonder, if we were to ask teaching … Continue reading Equality can cause inequity – blanket school policies should be challenged.
"Well if she had tried everything, then that was the time to bring in someone with some more expertise." ...said the rather sound, very experienced, occupational therapist (OT). Peter's Year 1 teacher had told me that she had tried "Lots of carrot and lots of stick" and that "Nothing worked". Peter's OT was intuitive, inquisitive, child-led … Continue reading Wise Words
Initially Peter wanted: to be believed by his teachers; some minor (mostly free) accommodations at school; the school staff to work with the NHS staff who: were appropriately skilled, had thoroughly assessed him and were willing to give their time for free to help them to think about these minor accommodations; school staff to learn … Continue reading They’re not asking for much..
It's called a social communication disability for a reason..... I could give you pages and pages of examples that demonstrate that many, if not most, teaching staff not only lack knowledge but more seriously, lack awareness of this lack of knowledge, about SEND. Many of these examples are from before the changes to SEND provision … Continue reading When should we ask teachers for opinions on SEND?
"Because you want him 'Out of County'" For parents of children with additional needs this paradox (fighting for something you don't want to need) is normal. It ranges from constant, every day, exhausting mini-dramas, to full out, full scale all consuming battles for survival where you have 3 choices: remove your child from school altogether, … Continue reading Being forced to fight for things you never wanted to need.
Children should not be set targets as part of their written plan of SEN support. This change came about in 2014 with the publication of the Special Educational Needs and Disability Code Of Practice. Don't believe me? Well I did an audit of the use of the word target in the SEN COP. The results … Continue reading Children with SEN shouldn’t be set additional targets.
.... than making a sandwich or doing your washing. Just like with the new approach to SEN Support in schools, that asks us to think about 'barriers to learning', the 'itmustbemum' mums are clear: "It is essential that the likely barriers to becoming independent are properly identified, assessed, then understood - so that support is appropriately targeted … Continue reading There’s a whole lot more to ‘independence’ than catching a bus….
I've been wanting to write about this and still can't really find the words. I want 'people' to stop and think, really think, about what it might be like to see your child in emotional pain, extreme fear, anxiety, confusion and significant distress every day. Literally every day. Many times a day. Often so severe … Continue reading Pain
When Peter was in Year 2 I began to really question who benefits when a parent is 'blamed'. I tried to think of all sorts of scenarios and to really challenge myself to think of an example of a situation where someone benefits. Sometimes I would even imagine asking a group of final year student … Continue reading The Blame Game
It is as plain as day that professionals don't have a good enough understanding of the skills and knowledge of their colleagues and the contributions that they can offer. I believe that this leads to missed opportunities that could considerably improve children's outcomes and the experiences of families and staff. I recently sat in a … Continue reading Who’s Who?
There was a lot of discussion around the post 'No Smoke Without Fire: Safeguarding Concerns'. It seems that inappropriate social care referrals is something that has happened to many and can of course be traumatising to experience. However there were also a number of comments about how critical it can be to have 'that one professional' that … Continue reading Thank you to the one that remained professional
"You must be mum." Four words that put you nicely in a box and out of the way, even when you are present in a meeting. That introduction says so much - you know you are simply there to be tolerated, to tick off a requirement and that you are expected to sit in the … Continue reading I’m not “mum”
I'd have been the same. I would've thought “I bet there is more to this story, a whole 'other side.' There will be something legitimate that triggered the Social Care referral, I bet." That is until I read the contents of Peter's school and local authority (LA) files. To say it was interesting is an … Continue reading No smoke without fire? ‘Safeguarding concerns’
A short post from a parent who attended the Whole School SEND event at the end of February. My friend and I were delighted and grateful to receive tickets from The Special Needs Jungle to attend this event. Our expectations were that we would be able to understand more about SEND provision from the point … Continue reading Thank You Whole School Send
It really isn't. Fixing famine in Africa is complex. Understanding a school budget and notional funding should not be seen as/talked about as complex by those in a graduate professional with access to finance advice. So please stop hiding behind poor information and a lack of transparency. The unspoken message here is 'we can't do … Continue reading It’s Not Complex: A Mini-blog
Below is a summary of a conversation that I had with a close friend last week. Of course, I have removed all emotion: crying, hyperventilating in panic and so on. Fearing for your child like this brings with it intense panic and fear. After months of barely managing, of pleading for help, assessments and a suitable school placement … Continue reading Abused by the Local Authority
"I trusted this member of staff to help me when I was feeling scared and then I saw her holding the door shut one day. I could hear a kid screaming inside. Then I was confused because I had trusted her and I didn't know if she was nice anymore" It has come to … Continue reading Restraint and Seclusion: A Mini-blog
This Situation The open secret that teaching staff can decide that the conclusions of an 'expert' about a child's specific difficulties are wrong, without following any agreed process, became well publicised over the last week. So what 'should' we expect from the professionals that we entrust our children to every day? Examples of the types of … Continue reading Disagreements over ‘diagnosis’: What should happen next?
Have you found that raising concerns mysteriously becomes the cause for concern? Tonight, my children were discussing small scars and yet another memory flashes back into my head. Peter talks about the time he used a blunt pencil to make a hole in the back of his hand whilst at school. He did it so … Continue reading When Teachers Deflect Your Concerns: A Mini-blog
When communications with school, the LA and other agencies regularly affect your day... How to manage the: panic, shaking, overwhelming worry, excessive (sometimes, but only sometimes, necessary) catastophophic thinking, nausea, faintness ..... and other debilitating symptoms that can come on at the sound of a ringtone, the flash of an email on your screen or … Continue reading Managing the Mail: A Mini-blog
Every school-age child with a special educational need (SEN) should have a written plan of support. Every single one. That is my interpretation of the SEND Code of Practice (SEND COP) and I will explain why. Published in June 2014, Chapter 6 of the SEND COP describes the provision of SEN Support in Schools. It … Continue reading SEN Support in Schools – We’re Missing the Point
The best education I received was led by exceptional Nurse Teachers and Leaders. They had PhDs and they taught us to think, question and evaluate carefully the information that was presented to us. Yesterday a bizarre collection of statements was compiled in a document and published, then seemingly inadequate reporting of this followed making me aware again, of … Continue reading The Absence of Critical Thinking
These are the children that have a diagnosis of an autism spectrum condition, often following an assessment initiated by parents asking for help. They lurch from one day to the next, barely coping, just about surviving - but not living, not really. This is not a childhood you would wish on anyone. Their parent's request … Continue reading Nobody’s Problem
Oh….. so that makes it ok then? Of course not. Yet it happens often and, it seems to me, with increasing frequency. No one is born with an anxiety disorder. It isn’t surprising that children with Autism are prone to mental health problems. To start with schools are designed for neurotypical mini-adults. They aren’t great, … Continue reading We Won’t Treat your Child’s Mental Health Problems – ‘they are normal in autism’
Many things have shocked me to the core these last few years and one of them is the apparent ease with which people trained to teach can decide that Health Care Professionals that are trained to diagnose are wrong. How can that be possible? My first experience of this was when Peter was 6 and … Continue reading When School Staff Refuse to Accept a Diagnosis – some key questions to ask
It’s Year 3. Peter is 7. He has Asperger’s and needs a consistent routine so we had to read every night (or not at all). So, he had read more than many other children for a few years now. He liked books and hated playtimes - wanted to spend them “sitting on a step looking … Continue reading Dyslexia Diagnosis– an embarrassing catalogue of errors and poor practice
Is it Unconditional Positive Regard? Not a post about what we need, or are entitled to, this time but more about what we can offer. I’ve been reflecting recently on what some friends of mine might need most when they are struggling to manage difficult feelings towards their own child. Sometimes these children, because of … Continue reading How We Can Help Each Other?
One way or another my life will change quite significantly today. A meeting is being held without me, or any direct contributions from me, but the outcome will be huge whatever the decision. No-one in the meeting knows me or my son, Peter, but decisions are being made about him which will affect the rest … Continue reading Meetings About Me Without Me
“He is 2 years behind but the SENCo says he won’t ‘qualify’ for an EHC assessment.” “School say she is doing well in set 3.” It seems to me that this is misinformation and not in any way within the spirit of the SEN Code of Practice that all schools are obliged to follow: The SEN … Continue reading How Far Behind Does She Have to be for an EHC Assessment?
Autism blindness (definition) Very sarcastic and written when I was in a bad place - please forgive me. Autism blindness is an affliction suffered largely by primary school teachers who, despite normal intelligence, are unable to see a number of autistic traits when they are present right in front of them. These traits may include; … Continue reading Autism Blindness
About this story In just ten months Peter went from a boy who attended mainstream school unsupported, costing the taxpayer nothing in additional school resource, to being so broken by his school experiences he needed to be admitted to a psychiatric unit at just 9 years old. As a result he is unlikely to ever … Continue reading About The Story – It Must Be Mum
This final part (well I may upload the postscript..). This says it all really..... 'HOWEVER, ALL WAS NOT WHAT IT SEEMED. What the Finance Group (MARG) did next, even the most hardened SEN Warriors will struggle to believe.' Earlier parts of the book can be found here. Chapter 6 Is It Really For … Continue reading It Must Be Mum – Part 8
So Peter has been in hospital for some time. The acute side to his condition has settled somewhat but in order for his progress to be maintained and continued Peter needs a therapeutic residential ASD placement. Everyone has agreed this. Making it happen on the other hand is another issue altogether. The impact on his … Continue reading It Must Be Mum – Part 7
...And the crippling practice of the Local Authority Staff begins. Earlier parts of the book can be found here. Peter (now age 10) was admitted to a Tier 4 CAMHS unit 150 miles away from home a few weeks earlier with, among other things, 'signs of school related trauma'. He had previously been in mainstream education … Continue reading It Must Be Mum – Part 6
Earlier parts of the book can be found here. Chapter 3 An accidental Expert? I had just wanted to be Peter's mum, that's all. I wanted to drop him at school, help him with reading and homework and live a family life the rest of the time. I had a 'big' job. I was a clinician … Continue reading It Must Be Mum – Part 5
In part 4 the extreme refusal by school staff to support Peter is explored, my incredible naivety is exposed as is the phenomenal arrogance of school staff. I think all parents of children with SEN will relate to this! Earlier parts of the book can be found here. Spinning Heads - Chapter 2b Ever since … Continue reading It Must Be Mum – Part 4
Peter is admitted to hospital 150 miles from home and has his 10th birthday there. He undergoes the first six week of his assessment admission and recommendations about his future needs are made by the hospital team. Some school staff continue to insist that he is 'fine' and their unconscious incompetence reaches an all time high...... Earlier … Continue reading It Must Be Mum – Part 3
In Part two Peter's admission to hospital becomes inevitable - but where do you find a mental health bed for a 9 year old? Lily's condition deteriorates and their mum turns to her friends for help, which doesn't turn out to well. Click here for Part 1 of 'It Must Be Mum' Subtle Differences – … Continue reading It Must Be Mum – Part 2
Frequently asked questions from parents of children who have SEN are “Am I allowed to see information about my child?” and “How do I request information about my child?”. These questions we can answer - and also offer some tips, having been through the process ourselves. The legal stuff Your right to information about you … Continue reading Requesting Information
About this story In just ten months Peter went from a boy who attended mainstream school unsupported, costing the taxpayer nothing in additional school resource, to being so broken by his school experiences he needed to be admitted to a psychiatric unit at just 9 years old. As a result he is unlikely to ever … Continue reading It Must Be Mum – Part 1
Peter (11yo with Asperger’s) said today "Mum, do you think that people with autism make other people mad on purpose?" He went on to say that when you make someone angry, then the world becomes predictable for a few minutes. When he feels he is about to be in crisis and nothing makes sense and … Continue reading Are they “Naughty” for Attention?
Following on from the tips from Rosie and Jo’s mum (see unable to attend school) I want to share some lessons learned from the experiences of Peter and Jack. Peter and Jack were almost 9 and in Year 4. They had shared the same kind, nurturing teacher for 1 term in Year 3 and the same unkind … Continue reading Unable to attend school – what next?
I was struggling significantly with the unfathomable behaviour of Peter’s head teacher until a friend reminded me about a thing called unconscious incompetence – and then it all fell into place. With unconscious incompetence you don’t know what you don’t know. This described many of Peter’s teachers, his SENCo and head teacher nicely. I particularly … Continue reading When Professionals are ‘Incompetent’
Just so you know - for those arriving here after reading "the book" - this blog was 12 months after Part 8 was written. So Peter did make it to the residential school which he so desperately needed. However, as you will see it wasn't all plain sailing. 😦 In case you have doom and … Continue reading 36 Hours in the Life of an SEN Mum Trying to Re-enter the Workplace
James and Barry have disagreement in class and disrupt the lesson. The teacher takes them both to one side, asks for an explanation from both of them and gives them both a playtime detention. Equal treatment but not fair treatment. Both boys are bright 12 year olds. Whilst James is a typically developing child Barry … Continue reading When Equal Treatment is not Fair Treatment: a case for more SLT in schools
I’m incensed! Again! To be clear, when a child is displaying distress before and / or after school because their needs are inadequately understood and supported during school hours, it is not OK. Parents are told “We can’t help because we don’t see the problem in school”. They don’t get it do they? That is … Continue reading ‘Masking’ and ‘Blending In’ – is there a difference?
This morning was another little first in parenting – I nipped to the shop leaving my 9-year-old at home with her 11-year-old brother, very briefly, for the first time. We enjoyed a relaxed breakfast together and it felt just so deliciously ordinary. I am aware that the word ‘normal’ can make some people flinch and … Continue reading What is “Normal” anyway?
It is clear from the few forums I am on that there are a number whose children's chronic and prolonged school related distress has resulted in serious and significant harm to their mental health. Damage that isn't all reversible and has sometimes led to children being admitted to mental health inpatient units whilst still in … Continue reading It’s Not Fair
So what do children with an Autism Spectrum Condition need from their local Mental Health Services? prevention-and-early-intervention-of-mh-difficulties-for-those-with-an-asd Posted by Peter and Lily's mum. If you have found this post helpful and you think others may too, please click one of the share buttons below Like this blog? To see more of our blog posts … Continue reading Prevention of and Early Intervention in Mental Health Difficulties for those with an Autism Spectrum Condition
It all came as a bit of a shock to me. That school staff constantly made announcements based on assumptions that they made. Assumptions about anything and everything.... but in particular assumptions in an area that they are not especially knowledgeable... not knowledgeable at all as it turned out. I'll explain with some examples.... I … Continue reading Do Professionals in Education make Too Many Assumptions?