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?
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 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.
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?”
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”
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.
By Rosie and Jo's mum. I’ve been watching the distressing case of Charlie Gard unfold for the last few months and, apart from the obvious, something has stood out for me that I imagine only other parents who have been in battles for SEND provision for their children will have noticed. The staff at GOSH … Continue reading GOSH sets a shining example
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
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?
By Cross and Ginger Sometimes when we are so embroiled in something, it’s hard to see the wood for the trees. The journey through suspicion, diagnosis, school, EHCP and attempting to remove the barriers to learning have all taken their toll. Some days I’ve felt a bit like when I had newborns at home - … Continue reading The Final Straw
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?
By Cross and Ginger So, my child has his EHCP. I thought at the beginning, that this would be the end of the battle. If you’re reading this thinking “Er, well surely it is!” sorry to say, it’s actually just getting started. My son’s EHCP was so badly written that we are forced to Tribunal … Continue reading EHCP – Not quite a silver bullet
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
"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.
Rosie and Jo's Mum The advent of the fidget cube and the fidget spinner has prompted some interesting online conversations about the need for fidget toys in the classroom. There are compelling arguments both for and against the use of these toys: They make noises that can be distracting to other pupils. Clicking pens and … Continue reading Using fidget toys
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 of course he will never get a Statement, or the new EHCP. Never. He has to be working at half his chronological age.” “Well of course the Ed Psych might well say he needs a sensory room, but how on earth can we pay for that? It’s all very well of him to say … Continue reading Lies and Misinformation #SEN #EHCP #Autism
By Rosie and Jo's mum. It's a regularly recounted scenario on forums for parents of children with ASD. They are describing how an undiagnosed sibling is displaying behaviour that is also indicative of ASD. The response often thrown at them very quickly is "That is just learned behaviour." This quickly shuts down the conversation and … Continue reading Learned behaviour
Another post by Cross and Ginger, back by popular demand... School starts off as a great leveller. As parents we usually start with our eldest being dropped off, leaving us reeling from how fast time has gone, and wondering will they be ok, will they make friends, will they know how to manage without us. … Continue reading Other Parents
By Rosie and Jo's mum When, close to tears of frustration, I told the LA case officer that, by refusing to issue the proposed amended statement which was three months overdue, she was withholding my right of appeal to the SEND tribunal, she looked me squarely in the eye and shrugged her shoulders. At that … Continue reading The Imbalance of Power
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?
"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”
By Rosie and Jo's mum. It took me a while to get my head round these two ideas: 1. My daughters can be enjoying activities that they have chosen to engage in, want to carry on with and benefit from in many ways while still feeling stressed and overloaded by them. Playing with friends at … Continue reading Even good experiences can contribute to overload.
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’
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
Whether we are managing behaviour in our own homes or dealing with the fallout from behaviour management in school, the mantra ‘All behaviour is communication’ can serve us well. I will be forever grateful to the parent I first heard this from. Parenting two children with complex needs has made me rethink my approach … Continue reading Behaviour Management: 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
A guest blog by Helen and Jack's Mum ‘I suspect the problem is her Mum who is really overanxious’. ‘I only spoke to Mum once but she seemed very over stressed’. I knew what was being said about me in that meeting because my friend was sat there, not as my friend but in her role … Continue reading When ‘Mum’ Seems Anxious
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
By Rosie and Jo’s mum There’s a new word for parents like me. I realised that the education system was failing my children very badly, I found the guidelines their educators should be following and I spent time, energy and, eventually, money on making sure their needs were met well enough for them to have … Continue reading SEND Parent = Agitator?
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
By Rosie and Jo’s mum I have been working with health and education professionals to get my children’s educational needs met for over ten years now. As time has gone on and their needs have increased, the opinions and recommendations from health professionals have been hard and harder to obtain in writing or at least … Continue reading We can’t tell education what to do
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
By Rosie and Jo’s mum “She’ll never get a statement.” The confident words of various school staff to me on the occasions that I raised the possibility of requesting a statutory assessment for one of my daughters. They were always absolutely sure they were right. At the times of the conversations, both girls were making … Continue reading You Are Not Asking for an EHC Plan
“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?
Welcome to Jon's Mum who has written a Guest Blog 🙂 I looked up at the kitchen clock, it was almost that time again. It was the same every weekday at 3pm and I’d have that awful lurch in my stomach. Not that I was wasn’t looking forward to picking Jon up from school, but … Continue reading Alien In The Playground
By Rosie and Jo’s mum. Life as a parent of a child with additional needs is a series of challenges and our other blog posts are testament to the number of battles we are forced to fight. Some of the battles are for things we never wanted in the first place. That might sound strange … Continue reading Getting What You Asked For Can Be A Double-edged Sword
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
By Rosie and Jo’s mum I remember the first question I asked on a forum for parents of children with autism. It was “How do you find a way to switch off from the stress and worry?” We were in the early days of our journey, very soon after Rosie’s ASD diagnosis, school were being … Continue reading The emotional impact on a parent
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
By Rosie and Jo's mum I never wanted to be one of ‘those’ parents. In fact, I still don’t want to be one. I need to send my child to school knowing that she will be looked after with integrity and that communications between me and the school will be honest and open. It is … Continue reading One of ‘Those’ Parents
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’
By Rosie and Jo’s mum. When I was a childminder, I had the privilege of watching lots of babies learning to walk. I was even lucky enough to see some first steps. Those babies recognised their developing skills and used the resources around them to get to the next level. When they were ready to … Continue reading How do Children Make Progress?
By Rosie and Jo’s mum. “When she’s in school, she’s fine…..” “Once you’ve dropped her off, she’s fine.” “She’s been fine all day.” I’ve probably heard these phrases and other variations of them hundreds of times over the years. When I had watched the 12 year old Rosie grow progressively more pale and anxious as … Continue reading What does ‘fine’ mean?
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 … Continue reading Unable to attend school
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
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
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?