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?
What does that really mean? It means that if you can fit into the one-size-fits-all service that was designed for neurotypical people with an ordinary upbringing and a lifestyle that means you can drop everything and travel to a destination of our choice... Then, and only then, will we consider you engaged enough to help … Continue reading We can’t help if he won’t engage…
As a neurotypical I am reliant on Peter and others to help me to understand the awesomeness of autism from the inside. Aside from Peter, the person I learn the most from I 'talk to' nearly every day, care of social media. Today's lesson was amazing I felt the need to share... "I wanted to … Continue reading Sensory overload: the inside story
Yet again I hear of a parent being informed (this time by a paediatrician) that they need to ‘work with school’ and so I feel the need to vent… This is what almost all parents want more than anything else: to be able to work with WITH school (staff). There are a few things that … Continue reading Why does the parent have to be more ‘professional’ than the ‘professionals’?
Last week I got the chance to spend time with some SENCos. I was invited to talk about Peter's story and with his permission, I did just that. It's the same story every time - there is no question that there are very many professionals 'out there' that want to 'get it right'. For about … Continue reading It’s not all bad news… my recommendations to commissioners and service leaders
Peter tells me it was his idea and maybe it was, or maybe his skilled speech and language therapist planted the seed. I'm not sure? Either way, it's been a great way to talk about what to say and what not to say, and to be honest, I think I would benefit from using this … Continue reading Is it a ‘thinker’ or a ‘sayer’?
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.”
By Rosie and Jo's mum. I’ve been watching the distressing case of Charlie Gard unfold for the last few months and, apart from the obvious, something has stood out for me that I imagine only other parents who have been in battles for SEND provision for their children will have noticed. The staff at GOSH … Continue reading GOSH sets a shining example
A 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
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
My husband, a programmer in an arcane computer language (AS400 if you’re interested) was asked to give an example of one of something I’m good at. “She’s relatively computer literate” he said carefully. “Relatively.” Fine praise indeed. As a child I learned simple coding on a wobbly ZX81 which would randomly lose all its … Continue reading Autism and Minecraft.
‘Well of course he will never get a Statement, or the new EHCP. Never. He has to be working at half his chronological age.” “Well of course the Ed Psych might well say he needs a sensory room, but how on earth can we pay for that? It’s all very well of him to say … Continue reading Lies and Misinformation #SEN #EHCP #Autism
By Rosie and Jo's mum. It's a regularly recounted scenario on forums for parents of children with ASD. They are describing how an undiagnosed sibling is displaying behaviour that is also indicative of ASD. The response often thrown at them very quickly is "That is just learned behaviour." This quickly shuts down the conversation and … Continue reading Learned behaviour
By Rosie and Jo's mum When, close to tears of frustration, I told the LA case officer that, by refusing to issue the proposed amended statement which was three months overdue, she was withholding my right of appeal to the SEND tribunal, she looked me squarely in the eye and shrugged her shoulders. At that … Continue reading The Imbalance of Power
By Rosie and Jo's mum. I think I would have really benefited, in the early days, from someone warning me of two things. The first was how much paperwork you accumulate when you have a child with additional needs. The second was how important it is too keep good, clear easily accessible records so you … Continue reading What to record and how to store it?
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?
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
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
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?