butterfly minds

Archive for the ‘my autism posts’ Category

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.

Thursday
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.

Friday
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.

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Autism…
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.

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Following my letter of complaint to CAMHS I was offered an appointment for last Thursday , which was surprising as I was previously told it wouldn’t be until the end of October.

I was very nervous before the appointment and was actually feeling a little guilty about the letter , but my mum came with me for a bit of support.

We managed to get both of the boys to the appointment without too much palava , which was a small miracle .

The consultant psychiatrist was extremely thorough and he asked ALOT of questions , explained lots of things , chatted , and further assessed both boys. It’s amazing what a complaint can do.
We had a two hour consultation , he formally diagnosed O with autism and tics.
He has prescribed Melatonin to help O sleep at night and hopefully help me to start being able to leave him to go to sleep on his own.
He is also going to start O on medication for his tics. He’s already asked the gp to arrange the ECG that O needs before he starts the medication so hopefully he will be able to start taking it soon.
He’s also making a referral to the autism advisory service , I believe the school have already done this but it’s good that now they will have his proper diagnosis .
The psychiatrist also said I need to start planning secondary schools already. As he needs somewhere with ALOT support.
O has taken the melatonin twice now , I give it to him at 8 , by 9 he’s very sleepy so I’ve taken him up to bed at 9 and so far it’s taken 15 minutes for him to fall asleep , rather than 2-3 hours , and no screaming tantrum.
On Monday I going to start leaving him on his own in bed. I need to do it before he goes back to school as it will be too stressful for him to do it then.

The psychiatrist also finally diagnosed my 17 y/o , he has been under CAMHS since he was 9.
At first I was told he was just ‘misbehaving’ I was even referred to parenting classes.
Then at 14 when he was no longer able to cope with going to school and stopped leaving the house he was diagnosed with depression and social phobia , he also has tourrettes.
He was never statemented or given any real help when he struggled in school. Nor when he tried , and couldn’t cope with college in September.
He has been formally diagnosed with autism , social anxiety , tourrettes and OCD. Like O he has been given melatonin to try and help him sleep at night.As he usually stays up all night and sleep for a few hours in the day. And after an ECG he will also get new medication for his tics. He’s staying on sertraline for now , I just need to push him to take it regularly.
The psychiatrist will be referring him for CBT. And also helping him to get special needs help in college. He wants to try again !
His support worker will be seeing him twice a week to get him out of the house and help him to learn to manage being out and around people.
I’m angry that it took this long to get help. But , I think we are on the right track now. It’s not too late !

The psychiatrist chatted ALOT about autism , explaining it to the boys and talked about famous people that have had / got autism. And he said at the end of the appointment that …the most important thing is that people around the boys ( ie college , school, anyone who works with them , family )understand that this is who the boys are , the autism is part of their personality and nobody should try to make them change , just help them to be who they are.

I’m not upset to get a diagnosis for the Boys because I already knew. I think I have come to terms with it already. And I think that now we can move forward and help them both to do as well as they can.

There were apologies , and the psychiatrist told me that he has been asking his manager for help for years. And that it keeps being promised but never happens. Apparently he was promised £300,000 for CAMHS this year but It didn’t happen.
He said that he has tried to help my boys sooner ( aswell as other patients) but that the children self harming and trying to commit suicide have to come first for him , which I think goes without saying. I completely understand that but there should be someone other than just him to deal with patients that otherwise stay at the bottom of the pile.
It’s disgraceful that CAMHS are not able to help young children properly.
How many of the children that stay at the bottom of the pile become those who are self harming and suicidal ??
I don’t know ! But I bet it’s quite a lot.

I am glad I made a complaint because while I understand CAMHS are understaffed and underfunded my priority has to be my boys.
And I hope that if people do complain the people in charge of the purse strings will one day see that they need to do more.

Change won’t happen unless it is demanded.

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Hi , as you know butterfly minds has moved to over here on wordpress.
Butterfly minds is my baby , my creation. It’s my autism blog.
For raising awareness , understanding and finding support.

It’s about 2 months old and it was doing really well, it was growing in numbers of hits.
I felt like I was reaching people.

But since I moved it and ( in my opinion) made it better … I’ve lost about 30 views a day.

Now if this was my personal blog I wouldn’t be bothered. That’s mine , my ramblings. But this is my way of trying to help autism.

Maybe people aren’t finding it in its new home
I hope that’s all it is.
Also I would love to hear from more autism bloggers who would like me to feature a blog post of theirs.

I have a page for links to autism blogs.
If you would like to be added let my know.

I’m also going to make a twitter support page where people can easily find twitterers happy to give support and understanding.
Please help me by doing a number if things for me , for my autism site.

Tweet my link please https://autismbutterflyminds.wordpress.com

Retweet links to posts , please

Follow @butterflyminds on twitter.

Let me know about posts I can share.

Join up to the twitter support page.

It seems like I’m asking ALOT.
I know and I’m sorry.

But this site was my idea , my creation and its having a rough patch.

It’s not my personal blog

It’s here to touch other autism parents.

Please kind reader ( I do know that I have lovely readers ) help me out.

autism needs more understanding and acceptance , together we can change things.

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Around 700,000 people in the UK may have autism, or more than 1 in 100 in the population.

That’s ALOT of people.
And for each person with autism there is a family also affected !

ALOT of people.

Yet there is nowhere near enough understanding or acceptance of Autism.

More understanding and acceptance would make life so much easier for so many.

I saw this picture on twitter.
It’s heartbreaking , it’s also true.

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People with Autism deserve the same rights and opportunities as everybody else.

The education system is hugely lacking in understanding and acceptance.

The national autistic society does great work for autism they can be found here … http://www.autism.org.uk but I hadn’t heard of them until quite recently.

Autism is of course a very very broad subject but with so many people affected by it there really does need to be more understanding.

I’ll be honest until quite recently I had never encountered autism , my ” understanding ” of it came from what I had ” learned ” from watching the movie rain man

Since autism became part of my life I have realised that I really knew nothing about it.
I certainly didn’t have any understanding of it.
And I’ve learned that most of the people around me also don’t have any real understanding of it .

I asked on twitter if people could tweet me ( without googling first ) what they understood about autism.
Not so I could belittle them for their lack of knowledge but just to see generally how much people do know about it.

I had ALOT of responses.
Most of those responses where ” not enough “

very little

” I think it’s a learning disability ”
it’s not ! I think that only approximately half of all people with autism have a learning disability

I think most people think of rainman when they think of autism

Someone who had cared for 2 children with autism / aspergers said they actually had very little understanding.

I noticed that it was mostly parents or relatives of people with autism that really knew anything about it.

It’s not the fault of these people that they don’t know much about it …. The fact is there really isn’t much information out there.
I don’t think I’ve ever seen a TV commercial about autism.
I can’t think of any posters I’ve seen around for autism awareness ,
Even when the subject of my child possibly having autism came up I wasn’t directed to any information on the subject by any of the many professionals I saw.
My sons school had almost no knowledge or understanding atall. I’m sure my son isn’t the first autistic child to attend the school.

where is the information ?

I’ve had 7 children , I can’t remember ever being given any kind of information about what to look for as signs of autism when any of them was young. Not even a leaflet.

where is the information ?

Autism is actually a very interesting subject to learn about.

And the fact is that the information isn’t really out there. Unless you look for it.

As I mentioned before the national autistic society is a great resource for information and support.
http://www.autism.org.uk

There are lots of great books on the subject , so far I’ve read raising Martians and freaks geeks and aspergers !
Next I want to read the reason I jump

People who are passionate about Autism really need to help to get the information or information resources out there.
By talking about Autism , writing about it , blogging , tweeting .
Raising money for autism charities.

Talk about the good books , the useful websites , the great blogs.

And if you haven’t encountered autism yet why not have a little read up on the subject.
One day the knowledge you gain could help you to make a difference in somebody’s life.

people with autism don’t want a cure , they just want to be accepted and understood

also while I’m on the subject , it’s not just autism. Mental health illnesses affect so many people , in so many ways and yet mental health continues to have so little understanding.
Understanding and acceptance in society makes a huge difference. We all need to be better informed.
I , for example had never ( as far as I was aware )known anybody with an eating disorder , but through twitter I have become friends with a number of people affected by eating disorders , I became interested , I wanted to know more , to be able to better understand so I started reading about the subject

I just feel very passionately that as a society we really need to be more aware and more accepting.

When me and Sue decided to do a sponsored walk in our pyjamas to raise money for the national autistic society I wasn’t sure that we would raise any money atall. I set our target on virgin money giving as £100.
But people really came through , especially the good people of twitter and so far we have raised £221 so far which I’m very proud of.
Every little bit of money raised makes a difference.
We set off in our pyjamas at noon today … Funnily enough we had bought the same pyjama tops.

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We decided to walk to through and around Wimbledon common as its a lovely walk.

We walked , we talked , it was lovely , Sue lives in Yorkshire so we only see each other a couple of times a year when she comes to London to stay with her family , so it was really nice to have a kid free afternoon together just walking and talking ( and raising money at the same time )

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We stopped at the windmill for a cup of tea and a cake

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We even braved the ” facilities ” which if you’ve ever been to the windmill you will know is not a pleasant thing

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Sues mum met us at the windmill with sues boys , to give us a little halfway support.

Then we headed back.

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We walked for 3 hours.
It was a lovely way to spend an afternoon and to raise money for such a good cause at the same time.

We are going to plan the same thing for next year but we would like to get more people involved , joining in.

I’m proud of us both and I’m very grateful to everyone that had sponsored us.
It’s not too late to sponsor us , this is our link
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=8TOZERS

this afternoon I walked for autism !

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