Monthly Archives: November 2013

Sibling rivalry

Standard

If you read my blog , or twitter , you will know I have 7 offspring. In ages varying from 20 down to 8.

I think they are quite luckily. I always wanted more than just my one sibling.

They have 6 people each that they have known , warts and all from day one.

But they really just don’t get on.

They are all VERY DIFFERENT people , with very different interests and personalities.

But they are siblings. why can’t they embrace eachother and get along.

There’s never any need to feel alone with 6 siblings ( is there)
In theory you always have people on your side
And people who know you well enough to tell it straight.

But when do they start to get along ?

My younger ones bicker constantly , it’s a never ending contest of who had more , better, the longest , who had it first ….. With the older ones it’s just a huge clash of hormones. ALL THE TIME.
The older and younger ones just annoy each other.
My 15 year old girl has taken ollie under her wing , to be fair , but on her terms when she can be bothered.

I’m not saying they don’t care about eachother. I dare say they even love eachother. If one of them is injured or poorly they care.
They sometimes even stick up for eachother against me ( yeah because that’s when I want to see sibling solidarity)

But they all just don’t like each other enough.

I’d like to think that when I’m gone they will have a big sibling network of love and support.

Will it happen ?
Can it happen ?

When will they all start to like eachother ?

Autism and the huge failings of the system.

Standard

It’s estimated that around 700,000 in the uk are on the autistic spectrum.
That’s a lot of people.
But autism is still an invisible disability.
It’s misunderstood , it’s often not understood atall.
And there is a vast lack of help and support for people with autism.

It’s a very real disability , as it’s a spectrum disorder it affects people in so many ways , there are so many needs that just aren’t met.
And there can be a number of conditions that go hand in hand with autism. Making an already difficult condition all the more difficult.

I have two sons with autism.
When my 17 year old was 9 it became obvious that there was a problem.
His difficulties mostly manifested at home. So while he was coping at school he was ticking time bomb at home.
He was difficult , aggressive , often violent but because he was holding it together at school and is extremely bright ( he has an exceedingly high IQ) I just didn’t get any help.
He’s been under CAMHS since he was 9 and has been medicated for years for depression.
As time went on things got worse , at 14 he could no longer cope with school and dropped out.
Now he’s a recluse.
He cannot socialise atall , and he also has social phobia , social anxiety , tourrettes , OCD and now depression.
He wasn’t diagnosed until this summer.
So he had 9 years when he desperately needed support and had none.
He’s now supposed to be receiving support to transition to adulthood. Again there’s no support.

This has been a massive failure.
I have fought hard for 9 years but every step along the way I’ve been met with excuses of underfunding , understaffing and under training.

My 8 year old was diagnosed this summer after a year of being under CAMHS.
That was after I’d made an official complaint. He has autism and tics.
His difficulties were more extreme he was almost uncontrollable at school.
His sensory issues meant that he was in a constant state of meltdown.
I’ve now deregistered him as school is just far too traumatic for him.
There was a total lack of support for him at school. Not because school didn’t try but because they didn’t have any resources.
All the professionals that should have helped were difficult to get hold off , all had differing opinions and were frankly not that interested.

Our CAMHS consultant is impossible to make contact with. He would often be emailed and called on my behalf by the school , the PRU , the ed psychologist , our youth worker asking for urgent help and would almost never reply.

When my boys were diagnosed we were given a leaflet on ASD and sent on our way with the promise of 3 months reviews.

My 17 year old is about to turn 18. He’s already been discharged by CAMHS. And at present isn’t under anyone.

Diagnosis needs to happen quicker , with professionals working together on the same page. And the system needs to be more transparent so parents understand what’s happening , when and why.
The statementing procedure needs to be quicker , clearer and better explained.
Schools need more information , resources and training to cope with ASD.
Unlawful exclusion shouldn’t be happening , but it is ,
Because schools either don’t understand or don’t have the help to cope with ASD children.
Children are excluded for *bad behaviour * which is actually a result of their disability.
Children are also excluded from being in the classroom and taking part in activities in school. Because of their disability.
This is not lawful.
In some cases a child may only be allowed to attend school for a minimal number of hours a week , again not lawful.
Professionals need to look more at the whole picture. Not just reports from school or home but putting the pieces together.

The ” professionals ” need to do more to help parents access help and support. It’s not easy to do this alone.
And there should be a wider umbrella of care.
My 8 year old needs occupational therapy , he needs help for his worsening tics and he needs to see a dietician as he mostly only eats corn flakes. I have to chase these things up myself. I have to ask for referrals and then chase these referrals.

The use of the word mild is far too common.
A child may be verbal , bright and ” high functioning ” but their autism can be debilitating in so many ways.
What if a child is verbal and bright but cannot cope with being outside , on a bus , in a shop , in a school ? What if that child struggles to eat anything but cornflakes.
What if a verbal , bright child has been in his room for 4 years because the world is just too difficult for him.
What if a verbal , bright child has meltdowns that are frankly dangerous to themselves and others?
Is that mild ?

I have no personal experience of non- verbal / severe autism but I dread to think how little support there must be for affected families.

The professionals need to spend more time in the home to understand properly how someone is affected by autism.

There needs to be much more ( at present there is none) support for people with autism in the home.
To help them cope , prepare them for adulthood and most importantly to understand their condition.
A leaflet just isn’t enough.

And what about the siblings ?
Siblings often need help to cope with and understand autism.

They need some support because ( I know , my boys have 5 siblings ) it can be very difficult to live with someone with autism.

From what I know there needs to be a big shake up of the whole system. Autism shouldn’t be a hidden disability.

There should be • diagnosis
• support
• care
And it should all be under one umbrella.
And it should happen quicker.
I don’t know how to make people listen or how to go about trying to make these changes happen.

But I’m willing to try.
I’m willing to make it my business.

Raising understanding is unfortunately not enough. We need to fight for the rights of those with autism and those affected by autism.

Autism doesn’t have Ollie.

Standard

Ollie’s tics are getting worse. In particular the spitting one.
I found this tic hard at the beginning because let’s face it nobody wants to see their child spitting all over the place. My natural reaction was to tell him to stop.
But he can’t.
He wants to but he can’t.

He now has a small plastic bowl that he takes around the house with him and most of the time he gets it in the bowl.

But it’s frustrating for him , spitting all the time.

He said to me in bed tonight that he wishes he could tell his brain to not have autism and tics anymore because it’s hard.

It’s heart breaking.

But I can’t / won’t sugar coat it for him.
He will always have autism
It’s part of him
It’s part of Ollie
But it’s not all of him.
He is still Ollie , my funny , curious , bright , loveable boy.
He just happens to also have autism. And tics.

I didn’t tell him that it will all be ok , I told him that he will always have autism and tics but that we love him anyway. That people love him anyway.

I told him that he doesn’t need to worry about the tics because people that love him don’t care.

I told him that we can learn ways to cope and to help him.

I told him that sometimes things happen and you have to choose if you let that thing become a terrible thing or not.
We can choose not to let autism be a terrible thing.
And I will always be there showing him that it doesn’t have to be a terrible thing.

He said that he’s lucky because he won’t die from autism, and some children have things they die from.
And he’s right.
He won’t die from it.
And his life can be wonderful.

Yes it will sometimes be scary and difficult and exhausting.

And yes he will see things differently and there will be people that see him differently ,

But we can choose to see the good things.
He’s especially proud of what he calls his * autism memory*
That boy has never forgotten a single thing in his life.
And he’s a whizz at his memory card game 😃

Ollie has autism but autism doesn’t have Ollie.

Crash !

Standard

I should be feeling really happy now.
Over the moon probably.
Ollie is deregistered and that’s a huge chunk of stress gone , evaporated , magicked away.
But actually I’ve spiralled down into a well of the blues.
I’m sleeping better since ollie finished school and yes I feel a big weight has lifted but I’m just feeling so sad and * not quite right*

I have no doubt atall that I’ve made the right decision , I KNOW I have but I just can’t shake the blues.

There is some un -ollie related stuff on my mind right now …. But still I feel like I should be happier.

A twitter friend of mine described this as a * mini emotion crash *
I think she hit the nail on the head

I’ve been through a lot , and I think maybe sometimes the full force of the stress and emotion doesn’t hit you until after the situation , perhaps natures way of getting us through difficult things.
I’m sure the full force of the stress , at the time , would have brought me to my knees .

So there it is ……. I’m feeling all wrong and I’m feeling wrong for feeling all wrong.

this too shall pass

Last day

Standard

Today was Ollie’s last day at school.
And I have to say the school really did make it a lovely last day.
We took thank you cards and chocolates in for the head teacher and the learning support mentor because I really do believe they tried their best with the resources they had.
Ollie had his final session at place to be , he painted a lovely picture of me , while he was at his session I met with a lady from the autism advisory service. I think they are going to be very helpful and useful to us.
After the session me and Ollie watched the assembly. He hasn’t managed an assembly for months and today it was an assembly by the LSM so I thought it would be really nice for us to enjoy an assembly together.
Then me and Ollie had a play on the computers while his class did PE.
When they were finished we went to his classroom as they wanted to say goodbye properly.
The teacher talked about the first time he met Ollie and said what a lovely boy he is , and he told the class that he believes Ollie is now going to be taught by the best teacher ever. ME * blushes*
The kids sat in a big circle with ollie and the teacher said that anybody that wanted to say something special to Ollie could have a turn.
All the kids did.
I got a bit choked up listening to them telling him how much they like him and how he always makes them laugh and helps them.
His best friends said THANKYOU to him for coming to their school , there were lots of little lips quivering.

Then the class teacher said they could have 15 minutes to spend time with Ollie. Some of them spent the time drawing pictures for Ollie . The teacher gave them a camera to use and said they could take lots of photos of them all with Ollie. .
They took lots and lots and lots.
Ollie did so well coping with it all.

Then they gave ollie his goodbye card.
His teacher had spent ages making it. The kids in his class had written lovely lovely messages and the staff that have worked with him also wrote lovely messages.
We said an emotional goodbye and they were really pleased to hear that we will visit and we will be coming to the Christmas fair.
On the way out we had a lovely hug with the head teacher.
It really was a perfect last day.
I don’t have any bad feeling towards the school , despite everything I know they did their best. They simply are given the resources to cope with children like Ollie.
It was clear to me and Ollie that he is very loved at that school.
It was a really emotional morning ……

And now we begin a new chapter 😃

20131119-134120.jpg

20131119-134141.jpg

20131119-134200.jpg

20131119-134219.jpg

It can happen to anyone

Standard

Late last night I saw something that both saddened and sickened me as well as making me extremely angry.
I saw people taking to twitter to be vile and abusive about a desperate man , clearly in crisis …… It’s not the first time I’ve seen this happen , it’s no wonder there is so much stigma attatched to mental health.

The M42 , a major motorway in the midlands was closed yesterday at around 12pm and remains closed this morning as I write this , at 7:45 .
It’s closed because a man is threatening to jump and negotiations have been taking place all through the night. The police have closed it for the safety of both the man and the people travelling by car.
I can fully understand that people who were stuck in stationary traffic for many hours were angry. It must have been incredibly frustrating for anyone travelling , especially those travelling with young children and babies or elderly people.
People wouldn’t have been able to get to work or perhaps weddings or days out …… BUT a man , a fellow human being has reached a point of such desperation and despair that they have been driven to stand on the outside edge of a bridge and seriously contemplate ending it all. I can only imagine the agony and turmoil of that poor man.
I have no idea of this mans background or what has driven him to this point , I don’t know his mental health history but he is someone’s son , grandchild , possibly a brother , an uncle , a husband , a father , a friend. He is a human being in crisis and there but for the grave of god go I .

I read tweets last night that turned my stomach , tweets saying things like
hurry up and jump

Why doesn’t someone go and push him , get it over and done with

Why don’t the police get helicopters up there , they might blow him off the bridge

If I was going to end it I wouldn’t do it on a busy motorway so the traffic would be held up all day

If you really wanted to jump you would just jump

A man wanted some attention so he’s standing over the edge of a bridge

There were many more similar tweets.
I even saw people posting photos of the man , captioned ” the suspect ”
…… He’s not a suspect , he’s a man in turmoil. Maybe he has been to afraid or ashamed to seek help , maybe he has sought help and it hasn’t been enough.
I don’t know.
I see tweets of a similar nature whenever a poor tortured soul jumps in front of a train.
And it makes me ashamed , ashamed of the society that mocks these people , that cares only about the inconvenience to themselves .

Such tweets can only add to the stigma that surrounds mental health.
And imagine reading these tweets if you were suffering , feeling like you wanted to harm yourself or commit suicide , these tweets only reinforce the ( very wrong) idea that feeling this way is something to be ashamed of.

NOBODY CHOOSES
To have depression , nobody chooses to have suicidal thoughts and feelings.
Depression chooses you , it chooses without discrimination , it can choose anybody at anytime
It can affect any one of us regardless of who we are.

Nobody should be mocked.
Where is the compassion?
Where is the understanding ?

I hope the man on the M42 receives the help he needs and that this situation is resolved safely.
And I hope that the people who publicly mocked this man feel some shame over their words.

if you need help please don’t be afraid to ask for it , don’t be ashamed to talk about how you feel , if you are not able or ready to speak to your family , friends or your gp you can call the Samaritans on 08457 90 90

or if you are under 19 and you need help please call child line on 0800 11 11 this call will be free of charge and private and confidential.

Blogology

Standard

I’m not entirely sure I’m qualified to have grand opinions on blogging , I’m only into my tenth month as a blogger , I still can’t add a badge without help and I still can’t embed a link into a sentence heck I’m not even sure that’s what it’s called, my blog is growing every month but it’s not exactly a high flyer

20131114-150045.jpg

I’m proud of it though and I only really check my stats for my own reference so I know if anybody is actually still reading.
Or if I’ve tried something new I look to gauge interest.

All that said , I do have thoughts and opinions on blogging and as it’s my blog I’m going to share them …..

Today the tots100 rankings were published , this is the 4 month that I’ve been registered with them. The previous three months I went up in the charts really well but this month I went down , not terribly , but down to 551 in the chart.
I won’t lie I was really upset ….. For about five minutes ….. And then I had a word with myself , I didn’t start blogging to be in a competition , I don’t blog because I want reviews or sponsored posts , as I’ve said before I don’t think they would fit in with my blog , I also don’t fully understand how the scores are worked out , I don’t do klout or Kred because I dont understand them and I haven’t got time to being giving klout to people all day long.
My blog gets more hits , more comments and more * likes* every month so what am I upset about.

I think maybe it’s too easy to fall into the trap of needing to be higher in a chart , writing for rankings.

I’ve read quite a few blogs that are * high flyers* they apparently gets thousands of hits and high rankings but actually they just aren’t very good.
They are full of reviews , sometimes not even a coherent range of reviews , seemingly just whatever comes their way , with a few posts in the original theme of the blog dotted in between.
Sponsored posts that just aren’t relevant to that blog and then all the competitions.
Sometimes I wonder if people comment on and like these blogs simply to get themselves noticed on a bigger platform.

I also read quite a lot of blogs that aren’t high flyers , aren’t ranked high or aren’t even registered on ranking sites and I really enjoy most of them.
They are written from the heart , they usually stick to a theme , even if just loosely and the personality of the blogger shines through.
They don’t do reviews like there’s no tomorrow , sometimes a review in keeping with the blog but my point is these blogs feel genuine , fresh and honest.

These are the ones I keep going back to.

This isn’t always the way, a few of my favourite blogs are very very popular ones but they are always true to the essence of the blog, and it’s very apparent that the posts are written for the readers not for the rankings.

For some people blogging is more than a hobby , it’s a way to get a foot up into journalism , writing, beauty etc ,
I think there’s a difference with these blogs though because if you read, for example , beauty blogs you more or less expect reviews , ads , sponsored posts etc.

For some people blogging is a way of making a little extra money. As your blog grows the opportunities to make a bit of money here and there also grow , I have no business judging and actually I take my hat off to anyone who uses an opportunity to make some cash with their blog , I imagine charts and rankings are important in this case , but I do wonder if sometimes people compromise the actual essence of their blog when say for example they’ve been blogging about family and recipes and then start having posts with links to gambling websites or something equally as irrelevant to the blog.

I blog for me , my hobby I guess , I don’t imagine that what I blog about appeals to everyone , sometimes I’m surprised it appeals to anyone, but I have regular readers and I get lovely comments.
For me that is good enough.
I don’t need any more validation than that.

I’m going to stop looking at the rankings and stick to doing what I’ve been doing , blogging from my heart , for me and for the people that like to read my blog.

Blogging is such a diverse thing that there really is room for all of us.
The good blogs will naturally grow and find their own way in the blogging world.

Different

Standard

I’ve written a couple of blog posts since deciding finally to definitely take Ollie out of school.
A few people have commented on these posts saying I sound like a different person since I made my mind up and I really do feel different.
I woke up this morning , after actually sleeping and felt good. I got loads done today , the most productive I been for ages. And I just felt good , all day.
I feel lighter !
I’ve been reading back over some of my blog posts and some of them are just so desperate. And sad. And it’s not until reading back that it really hit me just what an awful time it’s been.
I feel sad for the girl who wrote those posts , who didn’t know how to help her little boy or who to get help from.
The girl who couldn’t bear to see her boy crying at the school gate or being restrained and trying to lash out in the school , the girl who just didn’t know what to do.
The girl who once again faced anxiety and panic attacks.
I also feel proud because that girl is me.
And however awful and crap it’s been we got through it.
I haven’t magically found all the answers but I know how best to help Ollie , ( right now at least )
I never gave up trying and I can say without any doubt that I’ve done my best.
My most recent posts were written by the girl who can cope , better than she imagined. The girl who is stronger than she thought and the girl who has made big decisions and trusts in her choices.
I am different.
I’m stronger , I’m braver !

I haven’t got through it alone.
I’ve had amazing and unwavering support through twitter and my blog every step of the way.
I’ve learnt that people care. They really do. You don’t have to go through things alone.

And my kids, well they are still the messy , lazy , disorganised bunch they always were but they are good kids.
I’ve had my eye off the ball more than I should , I’ve been tired , so tired and poorly and stressed.
But they go to school and do me proud , they do me proud everywhere They go , they don’t make or get into trouble and they make my life easier by being the good kids that they are.
They always have hugs for me , sometimes they make me tea and they always make me proud.

We are at a turning point now , a huge weight has been lifted , a huge amount of stress will be no more.
Life isn’t going to suddenly be perfect , the boys will always have autism , the kids will never tidy their rooms and I will probably still feel the need to eat Ripples in bed, for comfort ! (written whilst eating a Ripple in bed , for comfort of course )
But it’s going to be different , better , easier …. And it’s been a long time coming.

THANKYOU for reading and thank you for all the supportive comments and advice I get on my blog 💜

School’s out 😃

Standard

I’ve done it.
I had a meeting with the head this morning.
She was actually very understanding and she had been on the phone speaking to education welfare just before our meeting.

She understood my reasons for deregistering O and said she will support my decision.

Education welfare want me to phone them to arrange a home visit to make sure I get the support I need.
And we are going to meet someone from the family recovery service next week. Which is the highest up department providing help and support that there is.
O will still get his statement so I will be able to put him into an appropriate educational setting if and when I want to and if I want O can have a number of hours of hospital home tutoring a week.
We’ve decided that Tuesday next week will actually be his last day so that he can have his final goodbye session at Place2be and because his class want to make him a leaving card.
I think it will be nice for him to wrap up his time at school with a proper goodbye.
O is a happy boy this morning.
He is excited about being at home with me and learning again.
He can’t wait to start choosing topics to learn about.
He’s already talking about going to an art gallery , the war museum and the natural history museum.
I can see a weight has been lifted from him.
And me too.

I will admit this is all a little scary just because we are entering into the unknown but I’m excited and looking forward to starting.

O will have some time to deschool and relax before we embark on ” learning”

I feel completely sure that I’ve made the right choice for O and I can’t wait to start a new chapter with him.

I will be blogging about all this , deschooling , unschooling , home schooling but I will do so on my new blog the unschooling of ollie which you can find here.
http://wp.me/p44KEi-3

Thank you for reading x