Monthly Archives: September 2013

First morning …

Standard

I set out this morning thinking it was quite pointless taking O to school for an hour.
It turned out to be quite interesting.
I hadn’t seen O’s in school behaviour properly before.
I feel like I learnt things today.

We got to school just before 9 and went in through the playground , the way everyone goes in.
We had chatted all the way to school ,
In the playground a toddler pointed at O , this really bothered O he kept repeating to me ” what’s he looking at me for , what’s he looking at me for ” I told him that toddlers point at things all the time but he was very worked up. As soon as we got into the corridor O’s whole body language changed. He stiffened up. His movements became jerky.
We walked past some kids and O started repeating ” what you looking at me for , what you looking at me for ” he was quite agitated so I took his hand and asked him to show me to the learning support room.

The SENCO gave us our timetable for the week , and gave O the work he had to do today , the LSM also came into the room.
I noticed they both asked O straight away if he had had a good weekend and what he had been up to …. This clearly made O uncomfortable. He was squirming in his chair and didn’t offer up any information about the weekend.
I helped him out a little.
And then we got started on his work
The classroom was empty for 10 minutes and O was working quite well. Then a small group came in to work with a teacher and O got very agitated. Every time someone spoke he jumped out of his seat and shouted it’s too loud it’s too loud.
He found it really hard to concentrate and could not sit still. He was walking around the table and fiddling about pouring his water out.
I managed to get him in his seat by literally holding him there. And I had to keep rubbing his back and patting him.
Once the group had finished and left the room O found it much easier to concentrate.
We finished what he had been given to do and as we had ten minutes left and O was desperate to get out I got my phone out and we used the calculator to add up his maths.
Luckily he’d got all him sums right.
So we finished on a good note.
His learning mentor gave him a tick on a reward chart and told him that when he gets to 5 he will get a reward. And O managed to have a little chat. Much more comfortably than he had earlier on.

I was really pleased that we got his work finished , and managed to have a nice morning in school.
I think O has begun to associate school with only bad things.

I’m glad I have seen O how he is at school. And I hope that I’m going to be able to get him through this week just as well as he did today.
Hopefully he will lose some of his negative associations , And maybe school will see that O can be handled in a way that works.

Thank you 💜

Standard

this post may be a bit soppy , forgive me.

I’ve had twitter for a few years now.
I started out as many do , following celebs , which quickly gets boring.

I gradually dropped the celebs and put a few tweets out there.
Unsure if anyone would read them.
Surprisingly they did.
They followed me in thier droves.

Well , actually I was stuck on 87 followers for the longest time

But I started to make friends.
To have conversations
To become interested in these random strangers I was finding.
I liked them.

I then started to blog , because I’ve been going through a lot and I found that writing was a good way of processing my own thoughts.
And also I thought maybe someone else may find they could relate to my writing.

I had no idea back then , only a few months ago really what an incredible network of support was building around me.

Through twitter and my blog I have found an incredibly supportive autism network. Full of people who understand , who know much more than I know , who care !
As well as many many other people who have been a massive support to me.
I genuinely count my twitter friends as friends.
Some of them have been with me ( virtually) when I went to the doctors, when I’ve had school meetings some of them have been supporting me , even though it’s been through my phone. Giving me a push , holding my hand , making me stronger.
. Even when I’ve been for my dreaded blood tests twitter has come with me and someone has always been there on my phone to help me.
Some of them I’m desperate to meet.
I have found so much information and support about autism through twitter aswell as a wealth of information about school and the SEN minefield.

When I’ve struggled and fought and almost lost hope in CAMHS twitter and my blog readers have supported me.

You shared my excitement about getting a kitten 3 weeks ago , you came with me to collect him and saw the first pics of him on the bus.

You comforted and advised me and sometimes teased me about the mice
You tweeted to ask if we had caught them.
You tweeted me about little mice with clogs on.
A twitterer even came and blocked up my mouse holes.
You told me to sing loudly and make noise while I was in the kitchen so they wouldn’t bother me.
You have supported me with my other autism blog ( butterfly minds ) tweeting the links when I’ve asked you to and when I haven’t asked.

You even bought me a washing machine. ( well , not all of you but @HomelessBeanies did )

I’m not the best tweeter , I’m often , if I’m honest a bit wrapped up in my problems. And I forget to tweet. To reply. But you stick by me.

It’s lovely when I get tweets asking if O has had a good day.
It shows me that more people care about O , me , us than I ever imagined.
What I’m trying to say , in a very long winded way is THANKYOU.
Thank you for reading my blog(s)
Thank you to those of you on twitter that I would really class as my friends ( though we haven’t met )
Thank you for the love and care that I can feel you feel for my O. It means the world to me.

Thank you for listening, supporting and making me stronger.

I can’t think of anything I’d rather have in my pocket then lots and lots of friends.
Twitter I salute you , and I love you.

Outrage ….

Standard

I’m not one of life’s permanently offended. I don’t do general outrage because I just don’t have the space in my head right now for the worries of the world.
Yesterday I saw the twitter debates about GTA. I Read with interest but I couldn’t be bothered to throw my two pennies worth in. I don’t believe children should be allowed to play games like GTA I think they are totally inappropriate but it’s not my place to decide whether or not another parent is right or wrong to let their child play it.

But then later in the evening I saw something that really did cause outrage. I was outraged.
Asda selling the mental patient fancy dress costume.
Mental illness is never something to be joked about. Mental illness can have terrible effects on the lives of those who suffer as well as those around them.
Mental illness can split up families , cause people to lose money , their homes , their sense of worth , self esteem , their lives.

What’s funny about that.
And mental health patients don’t walk around smeared in blood brandishing an axe. They look just like you and me.
Chances are they are you and me.

I think asda was hugely insensitive putting this costume on sale.
So much needs to be done to end the stigma surrounding mental illness.
And asda have simply made a joke out if it.

This mornings I continue to be angry because I’ve seen a lot of people on twitter and Facebook ( the usual lot who like to show they aren’t outraged by anything by being outraged about the outrage) moaning that “it’s only a costume , what’s all the fuss.
It’s funny , all the fun is being taken out of Halloween”.
I’m not offended by zombies , ghosts , ghouls , witches , wizards , grim reapers , I think plenty of fun can be had without ridiculing the mentally ill.
I don’t want to see the fun taken out of Halloween.
Its not only a costume , it makes light of something that effects a vulnerable group of people.

I’m angry that people thing it’s ok to let something like this go unchallenged.

Would they be so blasé about it if they were affected in any way by mental illness.

Why do we not protect the vulnerable people in our society.

Lost…..

Standard

I feel I’ve lost my voice a little

Nothing I want to tweet
And nothing I really want to blog.

I know I’m stronger than this
I know I can fight
I can and have
I’ve pushed and pushed
But ,
I’m tired. I’ve hit a wall.

After so many years of fighting for answers , getting answers , hoping things would get better …. And then finding it all stayed the same I’m tired.

It’s hard , it’s tiring , it’s relentless and frustrating.
I feel guilty for feeling that way.
I’m not tired of O or J.
I love them just fine as they are.
I’m tired of the world around them.
That makes it all so hard.

My anxiety has exhausted me.
I hate it.
I don’t have time for anxiety.
I can’t fight if I’m overwhelmed with anxiety.

But I’m scared
For my boys
For their futures.
And right now I’m finding it hard to see past that.
The fear grips me.
Every bad day is a day I’ve failed them.

I know somewhere inside that that’s not true
That I’m trying my best
But until I can let myself believe that
I’m just here standing on the edge
Breathing
Putting one foot in front of the other
Going one step at a time.

Un wrapped.

Standard

When I look at you
I see the frustration
or fear in your eyes
I want to hold you tight
So tight
Wrap you up and not let go
Keep you here
In a bubble
But I can’t do that.
You are full of something
Wonderful
That has to be allowed to grow
You need room
To become
who you are supposed to be.
I can’t keep you
Wrapped up.
It hurts.
To let you go.
I want to pull you back
And say no
Stay
But I can’t do that
I want you to do
and see and feel
All the things
Every now and then
I see you shine
Out in the world
Where it’s hard
I still see you shine
I want you to
know life
Not stay wrapped up
Sheltered
But all the while
I’m scared
I’m scared that you won’t know
That I love you
More with every breath
That my heart breaks
A little more
Each time I let you go.
That I’m scared until
You are here with me
But I can’t keep you
Wrapped up
You are full of something wonderful

But it needs room to grow.

Butterfly minds ….. My dream

Standard

I’m laying in bed poorly tonight , with a PSA , IBS and migraine flare up , oh did I mention vomiting ?
Anyway all this joy is almost certainly caused by having spent the week at the mercy of those who still don’t understand or have an knowledge or acceptance of autism.
I’ve ended this week furious , frustrated and a bit dejected.

As some of you know I have another blog butterfly minds.
Now I’m no expert on autism it’s only a small blog but what my dream is , is to make a place with links to all the places where there is great advice.i would like to put links to blog posts about autism.

Information about autism

Anything autism related that may be useful.

So that people can find ALL this stuff in one place.

This really means a lot to me. I want it to be easier for people to find this stuff.

If you write an autism related post , pop me the link and I will pop it on the site.

If you read something important again pop me the link

Raising money for charity ?? You know what to do …. Pop me the link.

If you know anything that would help make the site better tell me.

Make suggestions.

I know us autism parents are passionate. Please spare a bit of that passion to help me make a site for people to find ALL of our blogs in one easy place.
And find support.
And learn about resources.

My mumblingsonthevergeblog is what I do for fun , in my free time , it’s personal and it’s mine.

Butterfly minds is different.
It’s my passion and my dream to raise awareness and understanding.

And to help people find stuff easily.
As well as putting your autism blogs out there.

Any help whatsoever will be appreciated.

Thanks for reading ,G xx