"Bethany's mum visited today to find her with hundreds of burst vessels around her face and eyes." Beth has been exposed to a known trigger, (relentlessly and for hours I suspect), seemingly with no strategies to prevent the impact of the trigger becoming harmful. As a result of experiencing unmanageable stress, she became distressed and used her … Continue reading Bethany: “hundreds of burst vessels around her face and eyes”.
Category: Blog: Reflections
Four days ago (27th October) Jeremy, Beth's Dad, reported that she was back in seclusion - not the cell, in a two-room arrangement, but (crucially) with no hatch. So, no way of talking to anyone other than shouting through a door. So no way of hearing phone calls. It seems that passing her food involved … Continue reading Bethany is back in the cell
Last week, I was given the privilege of sharing the turning point in Bethany's story (see here). Following a BBC exposé her dad was 'allowed' into a meeting about her and finally, experts on PDA were listened to. A corner in her care was turned and she could finally see a way out of the … Continue reading Bethany’s Dad Gives the Rest of the Story
Bethany's story came to light a week or so ago. Whilst many of us in the SEN world are sickened and shocked - at the same time, we are not surprised. I have the privilege of having her Dad's permission to share his update. We are all familiar with the concept of 'meetings about me … Continue reading Bethany’s Dad Has Important News
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’m struggling at the moment at work. Lots of stresses, both physical and mental have been building up over time. I have never been a bounce out of bed person but I’m finding it harder and harder to get up in the morning and leave the house to go to work. I noticed it started … Continue reading Just imagine – if adults were treated like some of our children…
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’?
All about Alfie the Elf. Wonderful little stories that need to be shared so that everyone knows how tricky it can be at times for an elf who needs wheels to get out and about. **please follow and share these adventures** We think he would be brilliant on This Morning and that lots of Elves … Continue reading A little-known fact about Santa…
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?
By DJ and Velcro's Mum The tears haven't come for a long time, but today they did.... and I couldn't stop. So I rang my dear friend, who just gets it, and talked... and sniffed. The devastation physically and mentally to our family and home over the last year is now what I see … Continue reading Broken. Unmet need in SEN – more about the true costs.
'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”
By Rosie and Jo's mum I’m not an expert in behaviour management or child development. I’m a parent who has learnt lots over the years from reading, looking after my own children and talking to other parents of children with ASD. Controlling behaviour is an issue that lots of us parents seem to come … Continue reading How much control should my child have?
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.
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
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?
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
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?
Cross and Ginger is back with more..... Law is a system of rules that are created and enforced through social or governmental institutions to regulate behaviour. So says Wikipedia so it must be true right? The rules that cover SEN law are clear, and the governmental institution closest to the heart of them in their … Continue reading The case of the misguided SEN Officer.
"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.
A guest blog from an anonymous professional So what do you do if the suggestions that your child’s difficulties ‘don’t exist, as professionals can’t see them’ or that ‘you are causing or fabricating your child’s difficulties’ start to be aired publicly? These are some tips based on shared experiences. This is not intended to be … Continue reading Facing Allegations of Fabricated and Induced Illness
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.
I, as a rule, have good skin. I got a few spots on my forehead as a teenager, and that was it, I was very fortunate. Now as I type, I have a nasty itchy rash all along both sides of my chin, not unlike beardy snog burn. I haven’t got this from snogging, sadly. … Continue reading The hidden costs of fighting with the LA
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.
My husband, a programmer in an arcane computer language (AS400 if you’re interested) was asked to give an example of one of something I’m good at. “She’s relatively computer literate” he said carefully. “Relatively.” Fine praise indeed. As a child I learned simple coding on a wobbly ZX81 which would randomly lose all its … Continue reading Autism and Minecraft.
‘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
My superpower is being able to get to sleep wherever I am. Trains, planes, Minions films, I can tell myself to go to sleep and I do. What I can’t do lately, is stay asleep. I wake each night around 4am. And I wake with a jolt, and it is without fail the same thought … Continue reading What I think about at 4am.
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
A 'must read' post by Cross and Ginger. Education is a funny thing. Before I had my children, I thought I knew what education was. It was very clear to me that it was the acquisition of qualifications via an institution, to equip me for work. No more, no less. On that score, I aced … Continue reading EHCP – The C isn’t compliance!
"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.
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
By Rosie and Jo's mum. I think I would have really benefited, in the early days, from someone warning me of two things. The first was how much paperwork you accumulate when you have a child with additional needs. The second was how important it is too keep good, clear easily accessible records so you … Continue reading What to record and how to store it?
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.
By Rosie and Jo's mum As an early years practitioner, I attended a few training courses on celebrating diversity. We would be encouraged to think with the children about the differences and similarities between us like the various rituals we have around family birthdays, which flavour crisps we like, what our houses look like, what … Continue reading The drive to stop our children being different.
.... 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”
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’
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
By Rosie and Jo's mum I think many of us have been in the position where another adult believes that they know our own child better than we do. Often this is a member of our extended family or school staff. So why should I be recognised as the expert in my own child? I … Continue reading Who knows my child best?
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
By Rosie and Jo’s mum This is a description of a meeting I recently attended at Jo's school. For an hour and a half, I set round a table with a group of people, care, education and therapy staff, who worked on three basic principles: A child will make progress if you remove the barriers … Continue reading A School With a Helpful Approach
"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
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?
By Rosie and Jo’s mum Both of my girls have found school difficult. They have both spent long periods unable to attend and they have both experienced severe anxiety as a result of inadequate provision. When things weren’t going well, which has been often, I have strongly considered home education. Both girls are academically able … Continue reading Shouldn’t it feel like a free choice? Why I don’t home educate
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
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
A guest post by Rosie and Jo's Dad That sound you can hear, it’s a penny dropping. When Rosie was first diagnosed with Asperger’s, people kept explaining things she was finding difficult, how she saw the world in a different way, how she wasn’t picking up on “normal” clues and therefore communication was difficult and … Continue reading The Penny Dropping
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
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’
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
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
By Rosie and Jo’s mum. Those words seem so innocent yet they can feel so loaded. This is the kind of advice parents generally pick up at toddler groups when dealing with the terrible twos. We see it on TV, in parenting magazines and on parenting forums. There can’t be many parents out there who … Continue reading Please Don’t Suggest a Sticker Chart
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
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?
Yesterday's guest post highlighted difficulties that many have found shocking. There is one element, however, that she has reflected on more here: that of being a parent when you are "on the spectrum" yourself. Further to the “Surprise Child Protection Meeting” incident where I went to a meeting expecting ‘help’ and after arriving found … Continue reading Engaging with Professionals when you are a Parent with Asperger’s
It was snowing, I felt empty as he packed his last bag into the car, this was my new life as a single mum to three. They would see their Dad, and there was a glimmer of hope that social care would finally provide the help we had been begging for to prevent this break … Continue reading The ‘Surprise’ Child Protection Meeting
The Use of Seclusion. A guest blog from a very experienced mum who was shocked to have been caught out. She wanted to warn others so they could learn from her experience and she shared the information below on social media. Straight away others commented to say how important they felt it was that this information is … Continue reading Important Advice from a Mum (Seclusion Rooms)