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 …

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 …

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 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 …

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 …

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 …

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 …

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 …

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 …

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 - …

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 …

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' …

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 …