Thursday, 30 August 2007

Day Centres - Systemic injustice


Day Centres - Systemic injustice

I don’t want to be herded around or trained.
With nowhere to use the skills I’ve gained.

In an over crowed centre where one size fits all
With your risk assessments and safety protocols.

My life should not be based on stereotypes, labels and low expectations,
I want my own money and personalization.

I don’t want to be segregated and disabled by society,
I want respect, human rights and equality.

I want to be proactive and choose the things I do with my days,
Not stuck to a timetable and adult dehumanizing ways.

I want to employ my own staff who embrace neurodiversity,
Who don’t see me as a ‘service user’ or ‘client’ who needs pity.

I want to be empowered with a person centred plan
Citizenship and real choice like any modern day young man.

Wednesday, 29 August 2007

Empty

It has been a long day. 6 trains, 3 taxi's. It’s a draining day, leaving my son in the hands of others. But I console myself in the knowledge they can give him more than I can on my own. The local services are not equip for him.
My house is quiet and still. I feel empty and bereft. It takes about a week to get ‘used’ to the empty feeling, but it never goes away. There is a hole in my heart.

I used to cry for days after leaving him. Now the tears don’t come but they are still there.
Tomorrow I will change his empty bed.
Tomorrow I will paint the smile back on my face.

Tonight I am going to have some wine and sleep.

Tuesday, 28 August 2007

A poo tip!

Learnt of a great tip today for people who smear poo in their hair!
Apparently if you then smear tomato ketchup over it and rinse you get rid of the smell!
It just goes to show after all my years of poo cleaning you can still learn!

He went out with custard in his hair today unbeknown to me! Hes 6 foot so i cant see the top of his head!

Cinema trip

And today’s saga……
The last day of our summer holiday together. And our last long summer holiday together. Tomorrow I do the 9 hour round trip to take him back to boarding school.
So I took C to the cinema to see Shrek 3 for the 6th time as he loves it. (Don’t even ask how many times he has watched 1 and 2 on DVD. I once worked it out, it’s in the thousands!)
Anyway after queuing and enduring all the stares I asked for 1 disabled person and 1 carer’s ticket (Carer goes free). I was asked for carers ID. So I showed them Cs disabled train pass and buss pass. Apparently they were not proof! So I pointed at my son, it is obvious that he can’t access the cinema on his own, so that obviously makes me the carer doesn’t it??? Apparently not!
I asked to see the manager. Who was very rude and loud, so everyone heard. I have to buy carers ID card!!! To get this you have to show the same proof you showed to get the bus and train pass!!! She also added if my son carried on behaving the way he was then we would be escorted out. He was only rocking!
When we got home I wrote an email to their head office. They very quickly phoned me back and apologised for my distress and are changing their policy for the whole chain!!
I am happy with that, but it’s a shame I was made to feel so belittled, humiliated and on show.

Monday, 27 August 2007

Relaxing coffee.......not

A. No we didn’t have an event free day.

We were in the pub (yes another pub! Well he is 18 and on holiday. And I did only have a coffee!)
I was having a good chinwag with my PA and C was minding his own business feet watching and in a very good mood. By this I mean he was laughing (at what I don’t know!) squealing with delight and vigorously shaking his head.
But my delight in his delight didn’t last long as the manager came over to us and said there had been a complaint as my son was frightening some children. The father of whom was obviously the frightened one, as he didn’t come over.
So what was I supposed to do? Tell my son to stop being happy? Or stop being autistic?
Shouldn’t the father have used the oppounity to educate his children in special needs rather than complaining? Some people are so insensitive.
This is actually the reason I call my blog, Mother of Shrek. Like Shrek when people first see a green ogre they are frightened, but when they get to know him they realise he is harmless.This didn’t help my jaw ache!

Jaw ache


My jaw ache is getting worse. And no it’s not from too much talking! Its stress and not enough sleep. C doesn’t sleep well at the best of times. And I sleep lightly as he has a history of being sick in the night.
The parents next door have gone away and the kids (i say kids but they are in their 20s!) have been partying. 3 nights in a row. Cs room is padded because of head banging so muffles the noise a bit for him. I just grit my teeth!
So even though I feel like a walking zombie, the school summer holidays are coming to an end, so I need to make the most of my time with my son.
Does anyone know any good remedies for jaw ache?


Sunday, 26 August 2007

Prostitute

That grabbed your attention didn’t it! And no I am not thinking of sending my son to a prostitute. But a man we met in a pub today thought I should!!!
We just went out for a nice quite Sunday pub lunch (well with Cs large stimming and high-pitched squeaks it wasn’t very quite). Whilst he is happily unknowingly entertaining the people in the pub, I bury my head in a suduko trying not to notice the stares and mutterings. He is happy and that is important to me.
A man came over to me and started asking me questions. I don’t mind this at all and wish more people would. He asked the usual questions, but after he asked me Cs age and I told him C was 18. He told me I should pay for him to go to a prostitute and then he might start talking as he would thank me!!!
At this point C realised I was talking to someone and stopped stimming and just glared at me! The man took this as C agreeing to his suggestion! I took this as 'mum if you don’t stop talking to strangers I am going to start hurting myself!'
The man then launched into when he was that age sex was all he could think about. Thankfully (and I don’t often say that) C started to head bang so I made our excuses and left. Even though i was amused, but wasnt sure where his story was going as he had had a bit to drink!! As I got up the man handed me a penny and said it was for luck.
I was quite touched. And not offended as I felt he meant well. That doesn’t happen often.

Saturday, 25 August 2007

Poo






I thought I would talk about poo today! And yes people who know me would properly say I do talk poo (and I get told off when talking to my young nephews and nieces about it! I do try not to anymore, but it is a large part of my life, and helps if I joke about it!)
Here’s a short poem I wrote a few years ago, which might explain my obsession!

Poo here, Poo there
Poo on the walls, poo in his hair.

It’s in his ears, eyelids too,
Between his toes-dried on poo.

Poo on his face, poo on the floor
Poo everywhere there can’t be any more!

It’s all over the bed, all over the chair,
The smell of poo lingers in the air.

Behind the radiator, inside books,
At the ceiling I dare not look.

The most poo you have ever seen,
But at least the toilet I do not have to clean!!!

Yes my boy smears. Nothing like he used to thankfully. Was up to 5 times a day! And the bigger he got the bigger the smearing got! But like all of his behaviours you accept that’s what he does and just get on with it.
Once we had an incontinence advisor come in. From my part it was brilliant as I could have great conversations with someone else who knew about poo! My son had other ideas and just didn’t poo for 10 days!
I have many embarrassing toilet stories I could share, but maybe I will leave them for another day.
This isn’t a subject I can say I have come across on other blogs? For some reason people don’t like to talk about poo! Or am I wrong?

Friday, 24 August 2007

Mobile phone filming

I shouldn’t have mentioned teenagers filming my son on their mobile phones as it happened again today.
It was in our local shopping centre. He is so content to stim and watch peoples feet as they pass, whilst my friend and I have much needed coffee. He’s not harming anyone. It makes me so mad. I feel so violated.
Thankfully as far as I know my son is totally unaware of incidents like this. But then it is difficult to know how much he knows. He doesn’t speak or sign and his fingers are glued in his ears when people talk to him. And if he is unhappy he head bangs. Bit of a give away really!
And yes I want to head bang too when I see idiots invading our privacy like this. Its bad enough people staring and muttering unkind things, but all that doesn’t compare to kids filming my boy.
I took a 15 second film of him on my mobile and have posted it on You tube. Thought I would get in there first! So if any of you see clips of him that weren’t posted by me, please let me know!!

Am i asking too much?

I don’t want to be treated like a child.
I want respect.
I don’t want to be ‘trained’.
I want the opportunity to grow.
I don’t want to fester in a local day service, or in my home.
I want to be an active member of the community.
I don’t want pity or patronizing.
I want to be valued.
I don’t want neglect or abuse.
I want to feel safe.
I don’t want lack of resources to be an excuse.
I want a creative approach.
I don’t want institutionalised staff.
I want people who really care.
I don’t want people being complacent about my behaviour.
I want to be nurtured.
I don’t want special services.
I want opportunity.
I don’t want to ‘fit’ into existing services.
I want choice.
I don’t want to miss out because of risk assessment.
I want some fun.
I don’t want to be cured.
I want acceptance.
I don’t want charity.
I want integrity and dignity.
I don’t want to be disabled by society.


I just want what everyone else has

Thursday, 23 August 2007

Today we cleared a cafe

Today we cleared a café!
I try and position my son where he wont get in peoples way as he does like to stand and stim, a large backwards and forwards rocking motion with his fingers in his ears. He likes to watch people’s feet as they pass by and is very happy doing this for a couple of hours.
As you can imagine a 6-foot young man rocking, people find very bizarre and scary so they keep well away.
We have cleared shops, train carriages, pubs, swimming pools etc. Sometimes it can be quite nice as we get places to our selves! Other times it isn’t as we get people staring or making derogatory comments. He has even had dog biscuits thrown at him and teenagers filming him on their mobiles.
I hope in time as the general public become more used to seeing people with learning disabilities out and about that they become more accepting. But until then I try and pretend it doesn’t get to me. It can be very wearing.

A big happy birthday to Cousin of Shrek 3 of 8 xxx

Sunday, 19 August 2007

Autistic Rap

My mum kisses me, my family dissess me.
Society dehumanises me. Despises me. Criticize me.
They are fossilized. I do not apologise.

I am ridiculed, violated, bullied. Ignored.
I am stared at, laughed at spat at.
What have I done to you? I mind my own business.
I do not listen. I do not see or give you the third degree.
I am holistic, simplistic certainly not materialistic.

My disability is your prejudice, systemic injustice.
Your presumptions and assumptions.
Intolerance of my difference.
Your misperception I take objection.

I am not a disorder, im not a symptom. Its not catching.
Im not a label or a vegetable or a crystal angel.
Im not a lost soul or out of control.
Im not from outer space, or a charity case.
I am suppressed not possessed.
Institution is not a solution.

I don’t have a condition, im not an exhibition.
Im not an artist or a musician, or on a hostile expedition.
Maybe I will become a politician.

Im not an Einstein or like Rain man.
Im not Pinocchio or Peter pan.
Im not ill, I don’t want your pills
Or your out of date text book skills.

Im not a zoo exhibition or a freak show,
Im a feeling human from head to toe.
I can get lost in the worlds beauty
So don’t make me fit in your reality.
Why should I conform
To what you think is the norm

Like a Big Brother contestant
All we want is acceptance.
The world loves Happyfeet Nemo and Shrek
So should I paint my face green and be on Star Trek?

I create employment and opportunity,
I educate the world in diversity.
You cant bleed the devil out of me,
People like me have influenced history.
You need me.


So don’t cure me.
Don’t pity me just let me be.

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