To the professionals in our lives.

To the professionals in our lives.   When my children do something well, it will either be because of you, or in spite of you.   Either way, you will be teaching them about the sort of adult they want to be.   Either way, you will be teaching them about the sort of peers they will seek …

Independent (Private) Reports – will they be accepted?

Should parents pay for independent reports?  Will they be ‘accepted’? A question often asked in SEN forums.   … of course the important question is ‘should' they be accepted.  The answer is absolutely they should.  If, in your case, this is not happening then there are some suggestions about how to handle this at the end.   It is important …

Good Quality SEN Support could lead to fewer EHC Assessments and Plans…

... fewer children with unmet need and a reduction in preventable escalation of need. Couldn't it? Have we paid enough attention to ‘SEN Support’, or did it become lost in the rush to secure a ‘legally binding’ EHC Plan?   There have been twitter rumblings of late about more use of SEN Support (and fewer applications …

Anxiety Based School Refusal. Lily’s Story.

Last night Lily and I realised that she had been to EVERY LESSON this week!   It is the first time she has managed this for 6 months.   It was a huge achievement and testament her hard work (also mine) and that of a pretty awesome school team. What happened? Prior to May Lily …

I would talk six thousand pounds….

Such important information for parents and those working with children…

starlightmckenzie

Increasingly I am hearing of schools prevented or delayed by Local Authorities from getting an Education, Health and Care Assessment for a child they believe needs one,  by insisting any requests must be accompanied by:

a) a demonstration the school has already spent £6k on that child and;

b) documented evidence of the Assess, Plan. Do, Review (APDR) Cycle over a number of terms (the number of terms varies across Local Authorities).

c) a recent report from an Educational Psychologist (This won’t be covered in this blog as I have written about this here).

There is nothing wrong with producing any of this as part of a request for an EHC Assessment and it can provide good evidence. However, none of this is required by law and schools can and often do have enough evidence for the child to meet the legal threshold for an assessment without the above…

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Bethany: “hundreds of burst vessels around her face and eyes”.

"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 …

Bethany is back in the cell

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 …

Bethany’s Dad Gives the Rest of the Story

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 …

Bethany’s Dad Has Important News

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 …

When FND, ASC and EDS Collide

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.

“That would make it very difficult for me to bring her in again tomorrow.”

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 …

Three powerful questions to help your child access the services they need.

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 …

Not Fine in School have published their survey results…

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

Navigating the end of year: will children be intentionally​ excluded from school trips? Can more be done to prevent common difficulties?

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 …

When ‘school’ ‘gets it right’, what does it look like?

... 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 …

When your child isn’t ‘fine’ in school. Superb resources​ for families and for professionals.

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 …

We can’t help if he won’t engage…

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 …

Is the culture fostered by the school leadership team the most important intervention a child can receive?

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 …

Sensory overload: the inside story

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 …

Why does the parent have to be more ‘professional’ than the ‘professionals’?

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 …

It’s not all bad news… my recommendations to commissioners and service leaders

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 …

I miss him. God, I miss him.

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. …

Just imagine – if adults were treated like some of our children…

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 …

Is there too much gate-keeping for autism assessments?

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 …

Is it a ‘thinker’ or a ‘sayer’?

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 …

A little-known fact about Santa…

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 …

The privilege of being ‘just’ a Mum that so many can never experience.

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 …

Curiosity and kindness can lead to changed lives. Literally.

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 …

Can’t you just be kind? A letter to my GP practice.

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 …

“Why doesn’t my childhood matter?”

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 …

“There might be a cost for that.”

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, …

A story of reaction not prevention, when an EHCP is needed but not given until it’s all gone horribly wrong

Source: A story of reaction not prevention, when an EHCP is needed but not given until it's all gone horribly wrong

When your child is struggling can your GP help?

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 …

Broken. Unmet need in SEN – more about the true costs.

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 …

Early Intervention does not mean: “send them on a parenting course”

'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 …

Just listen to me and properly assess him, please?

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 …

They should have said sorry.

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 …

SEND: There are costs to parents too.

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 …

Not all specialist schools are equal

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 …

Education Tribunal and Local Authority ‘Games’

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 …

You want ‘Mum’ to be less anxious?

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 …

The Final Straw

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 - …

Am I perceived as dangerous?

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 …

What is it you want, exactly?

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 …

EHCP – Not quite a silver bullet

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 …

Make a log of EVERYTHING. It will be worth it…. trust me.

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 …

The Man from the Local Authority

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 …

Is bullying a form of rationing in the Public Sector?

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 …

The case of the misguided SEN Officer.

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 …

Why do they say “I’m OK”?

"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 …

Know when to stop flogging the dead horse.

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' …

Washing Powder

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 …

Bullied by Headteachers: No fresh starts allowed.

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 …

The hidden costs of fighting with the LA

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. …

Equality can cause inequity – blanket school policies should be challenged.

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 …

Autism and Minecraft.

  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 …

Lies and Misinformation #SEN #EHCP #Autism

‘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 …

What I think about at 4am.

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 …

Other Parents

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. …

EHCP – The C isn’t compliance!

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 …

Wise Words

"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 …

They’re not asking for much..

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 …

When should we ask teachers for opinions on SEND?

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 …

Being forced to fight for things you never wanted to need.

"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, …

Children with SEN shouldn’t be set additional targets.

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 …

There’s a whole lot more to ‘independence’ than catching a bus….

.... 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 …

Pain

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 …

The Blame Game

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 …

Who’s Who?

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 …

Thank you to the one that remained professional

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 …

I’m not “Mum”

"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 …

No smoke without fire? ‘Safeguarding concerns’

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 …

Thank You Whole School Send

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 …

It’s Not Complex: A Mini-blog

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 …

Abused by the Local Authority

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 …

Restraint and Seclusion: A Mini-blog

  "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 …

Behaviour Management: 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 …

Disagreements over ‘diagnosis’: What should happen next?

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 …

When Teachers Deflect Your Concerns: A Mini-blog

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 …

Managing the Mail: 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 …

When ‘Mum’ Seems Anxious

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 …

SEN Support in Schools – We’re Missing the Point

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 …

The Penny Dropping

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 …

The Absence of Critical Thinking

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 …

Nobody’s Problem

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 …

We Won’t Treat your Child’s Mental Health Problems – ‘they are normal in autism’

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, …

When School Staff Refuse to Accept a Diagnosis – some key questions to ask

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 …

Dyslexia Diagnosis– an embarrassing catalogue of errors and poor practice

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 …

How We Can Help Each Other?

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 …

Meetings About Me Without Me

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 …

How Far Behind Does She Have to be for an EHC Assessment?

“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 …

Engaging with Professionals when you are a Parent with Asperger’s

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 …

The ‘Surprise’ Child Protection Meeting

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 …

Important Advice from a Mum (Seclusion Rooms)

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 …

Alien In The Playground

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 …

Autism Blindness

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; …

About The Story – It Must Be Mum

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 …

It Must Be Mum – Part 8

  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 …

It Must Be Mum – Part 7

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 …

It Must Be Mum – Part 6

...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 …