butterfly minds

Posts Tagged ‘autism

So we started the new thing at school this week. Where I stay with O and he only goes for a short time.
This week it was one hour , I’m hoping next week that will be increased. I think/ hope that’s the plan.
I’ve blogged about Monday already.
It went well. I had a chance to see how wiggly and squirmy O is. It isn’t easy to keep him in his seat. And I saw for myself how different he was in a quiet room compared to when a noisy group worked in the room.

Tuesday was a bit frustrating. We only had ten minutes to do work , the other 50 minutes was when O went to his place to be session ( play therapy) so I had to sit and wait for 50 minutes.
He was calm the whole time and that made the second day he was at school when nothing bad happened.

Wednesday was O’s day at the PRU.
He was picked up at 12:45 and brought home at 3:30 !
It’s always a struggle to get O in the car.
He always says he doesn’t want to go.
But actually he had a good day.
He wasn’t in the actual classroom the whole time , but he got his work done.

We took O’s new ear defenders to school. School were not that happy about the ear defenders. They feel it will be like the hoody all over again. But in my opinion O has special needs and if ear defenders are one of those needs then so be it.
We got O’s work done. When a group came to work in the room O wore his ear defenders and was able to stay calm and concentrate on his work.
We had another good day.
In the morning before school he had laughed and joked with a friend in his class and also with his teacher.

Today was a PRU day again.
O put up a bit of a fight again , but I suspect this has almost become a part of his routine,
When O was dropped off his TA said he had had a much better day. In the classroom a bit more.

So all in all a good week.
O has seen that he can have a good time at school. Which I think is important. I think he was seeing school as a completely negative thing.

And the ear defenders seem to be a good idea.

Next week Monday is inset day. So I really hope they give us longer times to be in school for.

An hour a time is not really enough education.

Also I had a letter yesterday saying that O’s statutory assessment is being carried out.

It’s tiring having O home ALL the time especially as he doesn’t want to go out anywhere.
I’m a bit bored. And frustrated. If I’m honest.
But I will do what it takes to make things easier for O.



Please do take read.


Autistic people are all weird little geniuses aren’t they ?
Autism is just another excuse for bad behaviour isn’t it ?
Isn’t it bad parenting ?
Everyone gets diagnosed with autism these days don’t they ?

NO , actually none of that is true.
The thing that had become most apparent to me over the last few months is that people who don’t have autism in their lives really don’t understand much about it at all.

But they should because awareness and understanding can make life easier for those with autism.

In this post I’m writing what I have learnt about autism and what I know from experience . I don’t claim to be an expert. I’m writing this to try and help people to gain some understanding.

I think the reason that people think people with autism are all geniuses is that many people with autism have obsessions. They will become obsessed with a subject and learn everything they can about it. For example they may be able to name every single dinosaur and tell you how much they weighed. Many autistic people also have very very good memories.
But generally autistic people vary in intelligence just like everybody else.

Autism is not bad behaviour or bad parenting. It is believed to be a neurological disorder .
The autistic meltdown is very different from a tantrum.
Most autistic people have sensory issues.
The onslaught of sensory input that most of us would be able to filter out can become too much for an autistic person. For example in the classroom there can be lots of noise , lights , things to look at as well as smells , add to this that touch can also affect them ie clothing can be uncomfortable , itchy .. It can all get to much and cause a sensory overload which can in turn cause a meltdown.
Once in a meltdown the autistic child cannot control themselves , even after the meltdown it can take quite some time for them to fully recover.
Also autistic people have problems with communication , many are non verbal and many don’t understand tone of voice , gestures , idioms , and can also struggle to verbalise how they feel , not understanding or being misunderstood can be extremely frustrating which can also lead to a meltdown. Most parents will do everything they can to avoid meltdowns and when they do happen they can actually be very frightening for the parent and the child , the parents and child certainly don’t need judgement in these situations.

It is actually not easy to get a diagnosis of autism. It can in fact take years. Because autism is such a broad spectrum and affects everyone in so many different ways its not easy to diagnose. Also CAMHS are very underfunded and understaffed as well as often being under trained. Dealing with CAMHS can be frustrating , stressful and exhausting.
So autism is never just a quick diagnosis and an excuse for bad behaviour.

Many autistic children have sleep problems. They can take a long time to settle , and often wake many times at night , again it’s not bad behaviour. There are many possible reasons for this , it is believed that in many autistic people the body does not release melatonin at the correct times. ( melatonin is a hormone that helps you to sleep)
Also autistic people can be disturbed by stimuli all around them , noises , lights , the feel of their pyjamas and find it hard to filter out these stimuli.
It’s also possible that after a day of an onslaught of sensory stimuli it can be very very difficult to switch off and relax.

Autistic people are not all lonely. Many of them actually enjoy their own company , that’s just how they are and if they do find it hard to interact socially it’s not because they ” aren’t very friendly ” it’s because it’s actually very difficult for them.
They often can’t do eye contact which can make them seem awkward , disinterested , but actually eye contact can be excruciatingly difficult for them.
Many autistic people suffer from anxiety , especially in social situations which can make these situations even more difficult for them.

Tics are another thing that many autistic people suffer with , often caused by or made worse by anxiety. They make repetetive , sometimes inappropriate noises or movements.
They don’t do this on purpose , they are not trying to be annoying. These tics are involuntary. And will often be made worse if attention is brought to them.

Autistic people and parents of autistic children don’t want pity or sympathy , or even a cure , autism is part of who they are , they want others to be aware of what autism is and to understand autism , and to support them by allowing them to be who they are.

As someone said to me tonight ”
If people were to embrace autism instead of being terrified by it, so much progress would be made. ”

Autism is not a tragedy ,
The tragedy is that there is so much ignorance around it.


Please take a look at this post written by a wonderful autism parent http://www.autismmumma.com/ummm-tgif-fri-20th-sept-2013


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O is a fiddler.
He’s always fiddling with something. It help to keep him calm and focused and also relaxes him.
He had a bag of ” fiddles” that the educational psychologist gave him , it contained ribbons , feathers , stretchy rubber things , bubble wrap , but the things that could be broken were broken very quickly and the feathers and ribbons didn’t appeal to him much .
I wanted to get him a really good fiddle because at home he tends to * whispers* fiddle with his hands down his pants all the time , not ideal.
I looked on amazon and searched autism fiddles.
It came up with tangles they are bendy twisty tangles things.
They come in a whole variety of colours and textures.
I bought O two of them. Small ones , one hard plastic one and one fuzzy.
O loves them. He’s always got one in his hand. He takes them apart and knots and tangles them up.
He joins the two together to make a big even more tangley one.
He fiddles with it while he’s on the laptop.
They are actually are very simple thing , but they have done the job I wanted them to do. They seem sturdy and they only cost around £3 each.
O really wants the hairy one and I think he will like the knobbly one.
I really would recommend these to anyone who has a child with a need to fiddle.


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