Category: Blog: Reflections

“There might be a cost for that.”

“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, … Continue reading “There might be a cost for that.”

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When your child is struggling can your GP help?

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 … Continue reading When your child is struggling can your GP help?

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

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

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

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

How much control should my child have?

How much control should my child have?

  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?

Just listen to me and properly assess him, please?

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 … Continue reading Just listen to me and properly assess him, please?

They should have said sorry.

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 … Continue reading They should have said sorry.

SEND: There are costs to parents too.

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 … Continue reading SEND: There are costs to parents too.

GOSH sets a shining example

GOSH sets a shining example

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

Not all specialist schools are equal

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 … Continue reading Not all specialist schools are equal

Education Tribunal and Local Authority ‘Games’

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 … Continue reading Education Tribunal and Local Authority ‘Games’

You want ‘Mum’ to be less anxious?

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 … Continue reading You want ‘Mum’ to be less anxious?

The Final Straw

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 - … Continue reading The Final Straw

Am I perceived as dangerous?

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 … Continue reading Am I perceived as dangerous?

What is it you want, exactly?

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 … Continue reading What is it you want, exactly?

EHCP – Not quite a silver bullet

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 … Continue reading EHCP – Not quite a silver bullet

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

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

The Man from the Local Authority

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 … Continue reading The Man from the Local Authority

Is bullying a form of rationing in the Public Sector?

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 … Continue reading Is bullying a form of rationing in the Public Sector?

The case of the misguided SEN Officer.

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 … Continue reading The case of the misguided SEN Officer.

Why do they say “I’m OK”?

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 … Continue reading Why do they say “I’m OK”?

Know when to stop flogging the dead horse.

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' … Continue reading Know when to stop flogging the dead horse.

Facing Allegations of Fabricated and Induced Illness

Facing Allegations of Fabricated and Induced Illness

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

Washing Powder

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 … Continue reading Washing Powder

Bullied by Headteachers: No fresh starts allowed.

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 … Continue reading Bullied by Headteachers: No fresh starts allowed.

The hidden costs of fighting with the LA

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. … Continue reading The hidden costs of fighting with the LA

Using fidget toys

Using fidget toys

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

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

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

Autism and Minecraft. 

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 … Continue reading Autism and Minecraft. 

Lies and Misinformation #SEN #EHCP #Autism

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 … Continue reading Lies and Misinformation #SEN #EHCP #Autism

Learned behaviour

Learned behaviour

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

What I think about at 4am.

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 … Continue reading What I think about at 4am.

Other Parents 

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. … Continue reading Other Parents 

EHCP – The C isn’t compliance!

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 … Continue reading EHCP – The C isn’t compliance!

Wise Words

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 … Continue reading Wise Words

They’re not asking for much..

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 … Continue reading They’re not asking for much..

Should we ask teachers for opinions on SEND?

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 … Continue reading Should we ask teachers for opinions on SEND?

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

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, … Continue reading Being forced to fight for things you never wanted to need.

The Imbalance of Power

The Imbalance of Power

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

What to record and how to store it?

What to record and how to store it?

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 with SEN shouldn’t be set additional targets.

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 … Continue reading Children with SEN shouldn’t be set additional targets.

The drive to stop our children being different.

The drive to stop our children being different.

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.

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

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

Pain

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 … Continue reading Pain

Should Parents Write Long Emails? –  The Difference a Skilled Head Teacher Can Make

Should Parents Write Long Emails? – The Difference a Skilled Head Teacher Can Make

I'm driving home from my second visit to Peter's potential new school and right out of the blue this thought jumped, uninvited, into my mind: "You know, I don't think I will ever need to write a long email again." I was totally thrown by this uninvited thought!  On this visit I had taken Peter, … Continue reading Should Parents Write Long Emails? – The Difference a Skilled Head Teacher Can Make

The Blame Game

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 … Continue reading The Blame Game

Who’s Who?

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 … Continue reading Who’s Who?

Thank you to the one that remained professional

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 … Continue reading Thank you to the one that remained professional

I’m not “mum”

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 … Continue reading I’m not “mum”

Even good experiences can contribute to overload.

Even good experiences can contribute to overload.

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.

No smoke without fire?  ‘Safeguarding concerns’

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 … Continue reading No smoke without fire? ‘Safeguarding concerns’

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 … Continue reading Thank You Whole School Send

Who knows my child best?

Who knows my child best?

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’s Not Complex: A Mini-blog

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 … Continue reading It’s Not Complex: A Mini-blog

Abused by the Local Authority

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 … Continue reading Abused by the Local Authority

A School With a Helpful Approach

A School With a Helpful Approach

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

Restraint and Seclusion: A Mini-blog

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 … Continue reading Restraint and Seclusion: A Mini-blog

Behaviour Management: A Mini-blog

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 … Continue reading Behaviour Management: A Mini-blog

Disagreements over ‘diagnosis’: What should happen next?

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 … Continue reading Disagreements over ‘diagnosis’: What should happen next?

Shouldn’t it feel like a free choice? Why I don’t home educate

Shouldn’t it feel like a free choice? Why I don’t home educate

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

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 … Continue reading When Teachers Deflect Your Concerns: A Mini-blog

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 … Continue reading Managing the Mail: A Mini-blog

When ‘Mum’ Seems Anxious

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 … Continue reading When ‘Mum’ Seems Anxious

SEN Support in Schools – We’re Missing the Point

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 SEN Code of Practice (SEN COP) and I will explain why.  Published in June 2014, Chapter 6 of the SEN COP describes the provision of SEN Support in Schools.  It … Continue reading SEN Support in Schools – We’re Missing the Point

The Penny Dropping

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 … Continue reading The Penny Dropping

The Absence of Critical Thinking

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 … Continue reading The Absence of Critical Thinking

SEND Parent = Agitator?

SEND Parent = Agitator?

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?

Nobody’s Problem

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 … Continue reading Nobody’s Problem

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

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

We can’t tell education what to do

We can’t tell education what to do

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

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

Dyslexia Diagnosis– an embarrassing catalogue of errors and poor practice

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 … Continue reading Dyslexia Diagnosis– an embarrassing catalogue of errors and poor practice

Please Don’t Suggest a Sticker Chart

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

How We Can Help Each Other?

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 … Continue reading How We Can Help Each Other?

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 … Continue reading Meetings About Me Without Me

You Are Not Asking for an EHC Plan

You Are Not Asking for an EHC Plan

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

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

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 … Continue reading Engaging with Professionals when you are a Parent with Asperger’s

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 … Continue reading The ‘Surprise’ Child Protection Meeting

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 … Continue reading Important Advice from a Mum (Seclusion Rooms)

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 … Continue reading Alien In The Playground

Getting What You Asked For Can Be A Double-edged Sword

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

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; … Continue reading Autism Blindness

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 … Continue reading About The Story – It Must Be Mum

The emotional impact on a parent

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

Requesting Information

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

When it all goes dark

Mum to DJ and Velcro I was asked to be a part of this amazing little group of mums to offer up my experiences, advice and support to other parents following a similar journey.  I've watched this little idea of itmustbemum start to grow quickly and have felt quite nervous as to when and what … Continue reading When it all goes dark

One of ‘Those’ Parents

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

Are they “Naughty” for Attention?

Peter (11yo with Asperger’s) said today "Mum, do you think that people with autism make other people mad on purpose?" He went on to say that when you make someone angry, then the world becomes predictable for a few minutes.  When he feels he is about to be in crisis and nothing makes sense and … Continue reading Are they “Naughty” for Attention?

Unable to attend school – what next?

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?

When Professionals are ‘Incompetent’

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’

How do Children Make Progress?

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?

What does ‘fine’ mean?

What does ‘fine’ mean?

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?

Unable to attend school

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

36 Hours in the Life of an SEN Mum Trying to Re-enter the Workplace

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

When Equal Treatment is not Fair Treatment: a case for more SLT in schools

James and Barry have disagreement in class and disrupt the lesson.  The teacher takes them both to one side, asks for an explanation from both of them and gives them both a playtime detention. Equal treatment but not fair treatment. Both boys are bright 12 year olds.  Whilst James is a typically developing child Barry … Continue reading When Equal Treatment is not Fair Treatment: a case for more SLT in schools

‘Masking’ and ‘Blending In’ – is there a difference?

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?

Survivor Guilt?

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 … Continue reading Survivor Guilt?

It’s Not Fair

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

Prevention of and Early Intervention in Mental Health Difficulties for those with an Autism Spectrum Condition

So what do children with an Autism Spectrum Condition need from their local Mental Health Services? prevention-and-early-intervention-of-mh-difficulties-for-those-with-an-asd Posted by Peter and Lily's mum.   If you have found this post helpful and you think others may too, please click one of the share buttons below Like this blog?  To see more of our blog posts … Continue reading Prevention of and Early Intervention in Mental Health Difficulties for those with an Autism Spectrum Condition