"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”.
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
Another child pushing himself to extremes to meet the expectations of school and so on with shocking results. CAMHS tier three inadequate and what appears to be complete apathy when it comes to the mental health of a neurodiverse child by them. Lovely to hear about such a thoughtful SENCO.
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.”
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.
For anyone interested in understanding or supporting children who struggle to attend school ... the highlights are below and a link to the full document can be found there too. via School Attendance Survey Results
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.
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
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?
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…
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.
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.”
Source: A story of reaction not prevention, when an EHCP is needed but not given until it's all gone horribly wrong
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”
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.
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’
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
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
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
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
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.
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
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