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Splendid piece of writing. That's the thing about autism that is the hardest for people to get their head around. Adam's mother still goes through it every now and then over two and a half years after the diagnosis by CAMHS. You can't take pills to stop it, you can't transplant an organ.
Chalky isn't being negative at all. He is being realistic about the effects of autism on an individual. another thing to consider is the wide range of autism as Chalky says. One child might be fine with loud noises: another completely spooked. Whereas bone cancer is generally consistent between sufferers, autism is one of those diagnoses that is very individual in how it manifests itself. Stuff like hand flapping is common but as you see more, you understand more about that individual.
You can be positive for everything that child does to the maximum of their ability and still be sad at their limitations.
And if you're me, be very happy that a two and a half year ordeal with a crappy school SEN co-ordinator has been rectified in four weeks by a new wonderful SENCO this term and we're well on our way to hopefully getting an EHCP in time for secondary school in two years (and yes to those who haven't fought the system, this is how far you have to be ahead of the game).
A bad choice of words by me - of course I’d want the environment to change for my kids or for anyone who needs assistance. We already do that - building regs etc I’ve got light switches that are too low and mains sockets that are too high! I don’t have a problem with that - and any ramps etc other mobility/disability aids.
I guess I really meant that ideally I wouldn’ want the majority to have to sacrifice their enjoyment and behaviours. The physical world/environment I am all for improvements for accessibility.
Whether my feelings would change if I was personally faced with that challenge - I don’t think so - @chalky faces those challenges and shares my view. He also conveys it in the written word better than I can.
The previous SENCO simply lied her tits off, ignored medical advie for the child's doctor, ignored the CAMHS assessment, ad more besides. Once I moved down here last November and started the ball rolling, picking out the failures in procedure was easy. Reporting them to the school and having to wait for them to reply (six weeks minimum) was very painful. Having them fail on the top of previous failures (eg. notifying the local authority of a safeguarding issue regarding Adam (he talked about sex at school and the teachers flapped) without notifying the parents that he was being referred) simply stirred the pot further. In the end I had the Governing Body all convene for a meeting and tore them to bits. It helps having studied SEN provision at uni, worked with school appeals regarding SEN provision at LA level, and having a mother who was SENCO for over two decades until her recent retirement to fall back upon.
The new SENCO to her credit came in last year and it was quite apparent that she knew how badly the previous one had failed. Now she has been bumped up to full-time SEN manager, she has worked some minor miracles to sort out their SEN issues.
I've had exactly the same situation regarding someone trying to remove schedule from Adam's life as you describe. Truly maddening, isn't it?
Excellent discussion topic, this thread
Some people think their lives are fine because of their mental strength, and that PMA can fix everything. What a sad vanity, those of us with critical illnesses in our families are well placed to compare some peoples' "positive mental attitude" against the mental strength of families supporting those with critical illnesses
On a farcical note, I had one idiot asking me if I could just "push through" with my coeliac disease, I said "sure if you don't mind having constant diarrhoea many times every day"
With any illness, some situations need planning ahead - tactics to deal with likely issues, or how to avoid them. Some are best avoided, as we do for some situations for my Mrs, and for my need for GF food: lots of pre-planning, lots of explaining, lots of time wasterd
My problem with the Jazz hands is that trying to suppress normal polite social behaviour in large groups is a negative pressure, likely to reduce the quality of an experience for all, I would guess that many would feel ridiculous. Best to ask people to clap quietly for just a few seconds I would think, like the polite Japanese audiences at rock concerts in the 70s, or to use verbal encouragement like those clowns in Westminster.
Sound is the thing that can be overwhelming, more so than the anxiety of doing something ‘stupid’
You're missing my point, which is that if you completely and artificially change the nature of social interaction to address the problems of one minority, you will then cause many other problems for other people. It's not really a new perspective: https://en.wikipedia.org/wiki/Unintended_consequences
Let's try this from a different angle.
Why should any food establishment take an interest in offering gluten free food? Not talking about specialist offerings, I mean literally any of them, at all?
Why should a minority have any impact on the shelf space, or menu space, or kitchen prep space and time for other people who can eat gluten just fine?
How would you respond to a school that issues a blanket ban of nut-based products on the school premises?
At our school there is one child with a nut allergy. To protect that child that dictates packed lunch policy and it dictates school meal policy for the entire school of 1,000+. That is protecting a minority of one and it is restricting the majority in what they can eat. I doubt you'd say that the school have done the wrong thing with such a ban as nut allergy reactions can be fatal, as has been seen in the press recently.
Sometimes making a majority change their actions is the right course of action.
Not a useful comparison really, we're talking about the student union compelling everyone to modify their behaviour.
If all Italian restaurants insisted that they would not sell gluten, and that all should eat the less-pleasant GF alternatives, I would say that was not a good idea
It's just a recommendation. And I maintain it is a reasonable recommendation for where they propose it.
Your arguments focus on discussion of a ban whereas I and I believe @Heartfeltdawn are discussing the merits of modifying behaviour based on best interests and inclusion.
https://inews.co.uk/news/clapping-ban-manchester-university-students-union-jazz-hands/
- ‘Not banning clapping’
In a school of 1000, you could have several children with allergies. You could have very different ethical, religious and medically-prescribed diets. There is no guarantee that all of these are compatible. What would one do?
On an aircraft, everyone is stuck in a tube full of shared air, it's easy to see why people would worry more about various allergens, and as we've seen - the fact that medical help is hard to get quickly once you're airborne is a big factor.
Nevertheless I just did a quick search on airborne allergens, and found results saying that this is not an issue with peanuts:
http://www.peanut-institute.org/eating-well/allergy/
https://www.allergicliving.com/experts/when-is-there-a-risk-of-an-airborne-food-allergy-reaction/
So I'd say your school's policy is disproportionate to the risk
In fact, for food allergens it seems there is more of a risk to those with a seafood allergy when it is being steamed or fried in the same building
How about if, to protect the 1% of kids with coeliac disease, we banned wheat bread and pasta from school dining rooms?
It would be a mistake of course
I reckon it's all down to bad science, people just panic and over-react because they are not equipped with the knowledge to make a proper decision, and they read too many bad science newspaper headlines