Sunday, 30 September 2007

My favourite sayings...........


I found this saying yesterday whilst blog surfing..On the spectrum of life, I'm pretty certain that assholes are the "lowest functioning" human beings out there. Found at Tis my life
Made me smile. I love sayings, here are a few of my favourites.

Attitudes are contagious. Are yours worth catching? ~Dennis and Wendy Mannering

If you don't like something change it; if you can't change it, change the way you think about it. ~Mary Engelbreit

Every thought is a seed. If you plant crab apples, don't count on harvesting Golden Delicious. ~Bill Meyer

Blessed is he who expects nothing, for he shall never be disappointed. ~Attributed to both Jonathan Swift and Benjamin Franklin

The only disability in life is a bad attitude. ~Scott Hamilton

Enjoy the little things, for one day you may look back and realize they were the big things. ~Robert Brault

Whenever you fall, pick something up. ~Oswald Avery

Anywhere is paradise; it's up to you. ~Author Unknown

A loving person lives in a loving world. A hostile person lives in a hostile world; everyone you meet is your mirror. ~Ken Keyes, Jr.

If you are not free to choose wrongly and irresponsibly, you are not free at all
Jacob Hornberger

While we try to teach our children all about life,Our children teach us what life is all about.~Angela Schwindt

The only thing worth stealing is a kiss from a sleeping child. ~Joe Houldsworth

If the human race were perfect I wouldn’t qualify to be a member.

The only genuine love worthy of its name, is unconditional. John Powell

Argue your limitations and sure enough, they are yours. Richard Bach

I could go on!
What are your favourite sayings?

Saturday, 29 September 2007

A PhD for C?!

Isn’t Dr Greg House great!!! He comes across as having some autistic tendencies, so I relate to him!.

When C was first diagnosed, our GP struck us off his list. When I explained to another GP that’s Cs head banging could kill him, he simply said ‘wouldn’t he better off dead’


Taking C to hospital is a last resort, we have had to go several times. And trying to explain someone like C to them is difficult. They think they know autism, and they think I am being over protective. Its only when they meet him and see what he is capable of do they realise. Yes his self injurious behaviour is serious.
One hospital has changed its teaching programme because of C. Pity he had to go through an horrendous ordeal first. Even though I tried to prepare them. Dont be afraid to make complaints. It does help them!!


C and I have also been involved in quite a few PhDs. So hopefully professionals in the future will have a bit more of an understanding.
Someone made a comment on C having a vocation. I think at the moment it is Teacher!!
And I think he has earned an honorary degree!!

Friday, 28 September 2007

Prisoner on Mars

I seem to have collected a few new comers here in Shrek land. Welcome one and all!!! So i thought i would briefly describe my son C and his autism.

I wrote it all out, but it didn't feel right as it all sounded so negative. C is autistic, autism is C. It is the way he is, as i am the way i am, or the way you are. It is not negative! We all have different personality traits that make us - us. C is no different. we are all unique. What is normal? But you all know all that! So i will get off my soap box!

So instead of a synopsis on Cs behaviours i wrote a poem which might give you a better feel?


Prisoner on Mars


You’ve landed on Mars
Way out in the stars
You meet strange little men
You try and communicate with them.

But they don’t understand you
So what can you do?
Their body language is different
They laugh instead of cry
Make funny noises instead of sigh.

You try and learn their ways
Instead of them learning yours
You don’t fit in
They just point and grin.


Sometimes its so hard to get through
You bang your head or arm you chew
You stamp your feet with a high pitched squeal
None of this can be real.



Mars can be frightening as it is weird
For humans it is not geared
You have to learn the basics, to eat, sleep, go to the loo
As a non Martian, not easy to do.



Nothing makes sense
You hide the anxiety inside - the best defence
To keep your sanity you stick to routine
And put up a smoke screen.


There’s so much new info to store
Its easier to withdraw.
You live in your own world to feel safe.
Mars is a very strange place.

Thursday, 27 September 2007

Short Walk in the Hindu Kush continued

So fellow bloggers, where was I?
Oh yes…on the last day of the hike, 6lbs lighter, toned muscles and unsightly blisters. So did I meet the man of my dreams? Did I have a spiritual experience in those mystic mountains?
I wish!

We were all walking across a dilapidated corrugated iron bridge. Unbeknown to me as I was to busy looking at the stunning scenery there was a hole about 8 inches across, and my foot went down it. I didn’t feel a thing but there was rather a lot of blood, and I couldn’t put any weight on my right foot. (Sorry, its not very dramatic!) We had doctors with us, so they carried me to a safe place and stitched me up on the mountain side. I was given a litre of vodka as I was told I would need it! Which was rather silly really, as you try going to the loo behind rocks tidily on one leg, and no crutches!
I was carried the rest of the way of the hike and onto the plane. My mother met me at the airport, she was quite shocked to see me in a wheel chair. We drove straight to the hospital.

I had 3 operations in 3 years. 5 years of physio. I spent most of those 3 years in plaster and in a wheel chair as I wasn’t allowed to weight bear. I had severed a main tendon. Each operation failed. I am now left with a right foot that I cannot move which is still painful.

I don’t regret going on the hike, and I learnt a few sharp lessons on how the public view people in wheel chairs.
They did offer a 4th op, an experimental one, but it was all just to hard round C, I couldn’t face it again.
I did this hike in the first couple of years they started doing such things. Now because people have actually died, they are a lot safer. So please don’t be put off doing one if you are thinking about it.

Before I went I had the feeling it would change my life, and it did.

Wednesday, 26 September 2007

Becareful what you ask for....


In my garden you may have noticed the mural on the wall. As well as brightening the garden up for C it is a reminder that life does not always go according to plan!
After a very bitter divorce (he wanted me but not C) I thought I deserved a holiday. As im not a beach person I decided to do a charity hike in the Himalayas. A holiday of adventure and raise money for a good cause, disabled children.

I also had a feeling that it would change my life.

I’ve always been fairly fit, an ex gymnast and swimming teacher, which put me in good stead for hiking 8 hours a day for 10 days. I could write a blog about each day, but don’t worry I wont!

The Hindu Kush, was stunning, the views out of this world and the people were all so lovely. We all bonded very quickly as we were all there for the same reason (I was the only parent
of a disabled child there) There were many incidents along the way, funny ones, dramatic ones,
scary ones, drunken ones. And life changing ones....

And of course that had to happen to me! The only thankful thing about it was it happened on the very last day!!!

But as I have a busy day today I must fly so I will continue this story tomorrow!

Tuesday, 25 September 2007

Safe haven

My mother is a botanist so i like the wild look!

I have a walled garden in the middle of a town so i wanted a country feel, a safe haven for C to lose him self in the smells of the plants and the dangly sparkly things that he loves to watch.

And it works well, he spends many a happy hour squeaking and stimming. He strips off his clothes before going in the garden (if he had his way he would be naked all the time) Come rain or shine!

Wouldn't we all love to do that!!




Monday, 24 September 2007

Happy Birthday Gorgeous!

Cant believe C is 19. Where have all those years gone? I don’t feel old enough to have a 19 year old!!


Its very hard to know what to give autistic children for their birthday, unless they have a passion or an obsession with something and C has neither.
So as I make rugs, I have made a couple for him. One for his room at school and one for home. They make great protective wall coverings for head bangers!


In these last 19 years C has taught me so much and I hope through this blog we are giving people a better understanding and tolerance of autism. I certainly have had a lovely response from people here and I thank you all.

I miss him so much and especially on his birthday. He doesn’t have a concept of birthday so I haven’t gone to visit him as he would be too confused (he would think I am there to take him home) and obviously I don’t want to upset him. I will speak to him later on the phone hopefully!
Here is a poem I wrote some years ago, but it still stands.

Missing you.

I miss your smiley face
I miss your squeaky sounds
I miss your cheeky grin
And I miss the way you bound.

I miss the extra washing
I miss the way you hit your head
I miss the sticky finger prints
And the way you bounce on my bed.

I miss the way you ignore me
I miss your anxious cry
I miss your flapping arms
And the way you make objects fly.

I miss people staring in the street
I miss my early morning alarms
I miss the stripping of your clothes
And those precious moments of calm.

I miss you not letting me use the phone
I miss the melt downs when people come to the door
I miss how you look in my eyes
And the way most things you ignore.

I miss you watching your DVDs
I miss clearing up the poo
I miss your tapping sticks
But most of all gorgeous, i miss you.
xx

Sunday, 23 September 2007

Comfort food.

Am thinking less emotionally and more rationally today. And unfortunately in reality for some autistic people trips to the dentist, doctors, hairdressers, hospital etc are actually more intrusive, abusive and distressing, than what happened to C. But to us as parents the thought of what happened is more shocking.

So its Sunday. Anyone know of any low calorie comfort food?
Or non alcoholic alcohol?
Or drug free drugs?
Or no strings men??
Well I am only ‘beginning’ to think more rationally!!!

And i would like to thank http://whittereronautism.com/ For my Breakout Blogger Award. Which i recieved for being heartfelt and wise. Not sure about the wise!!

Thursday, 20 September 2007

You have to smile!!

Its Cs birthday next week. This morning he received free tickets from our local night club as a present! Maybe I should take him as his happy dancing might go unnoticed there (see our Youtube!). But I'm getting to old, so maybe I will ask his PA!!
But it does make me smile when C receives applications for credit cards through the post! I had to go to at least half a dozen banks to find some one who would even give him a bank account. The problem being he cant sign his name or even do a mark!

Well.... he might work in a bank,
Or a night club??!!

Wednesday, 19 September 2007

Toothache? No its..............


And so to the next professional. I think the picture is a bit of a give away. And again sorry ladies couldn't find any sexy dentists! If you know one please send him over. I mean the picture!
When C turned 16 because he had not been near a toothbrush let alone a dentist, it was decided that he should have a general anesthetic so a dentist could have a good look at his teeth and do anything that needed doing.
This was not an easy decision because of the severity of his self injurious behaviour, I knew it would not be easy.
And it wasn't, I wont go into it as it was so distressing all round, but amazingly his teeth were fine!!! Maybe it was because he didn't like eating food!
When C was about 5, I noticed a red mark on his cheek. I didn't think to much of it because of his headbanging he was always covered in marks. But over the next few days his behaviour deteriorated. In my wisdom i thought it might be his teeth so i took him to the dentist. C wouldn't let the dentist anywhere near him. But he didn't have to as the dentist took one look at him and said that's not tooth ache its mumps!!!!

Tuesday, 18 September 2007

Police blunders



As you all seem to being enjoying my pics, i thought i would run with this theme for a while!

Another profession we have had a couple of run ins with is the police (i couldn't find a pic of a hunky policeman so have done one for the boys today!)

A couple of years ago C and i were walking down the road, when suddenly out of nowhere we were surrounded by police. One policeman very aggressively started asking C why he wasn't at school. C started headbanging - they backed off. I was then able to explain that C attends a special school and they have different terms.

We didn't get an apology for our distress.

Another time C and i had been out for the day, came home to find the front door broken in and the house ransacked. There was a note in the kitchen from the police, apologising as they had got the wrong house. They had been looking for drugs. C is on drugs but not that kind!!

I am just grateful we were not there when they broke in.

Monday, 17 September 2007

Playgirl Heaven!

I was recently reminded of an incident that happened a few years ago.
When C was about 3 or 4 i used to take him to an opportunity group. It was quite a small group which suited C as he didn't like other children!!
After about an hour of being at the group we were all startled by shouting coming from somewhere else in the building. We rushed to find out what the commotion was. A boy who was obsessed with doors had looked himself in an office. And was refusing to come out.
The mother was panicking. We all tried coaxing him out, picking the lock, all to no avail. So the mother decided to call the fire brigade.
Whilst all this was going on C was getting very anxious and had started headbanging the walls and floor. In those days he used to have a helmet, so i thought i had better put it on.
I knelt down infront of C..........................



And the next thing i knew i was flat on my back looking up into the eyes of 3 fireman!! For a second i thought i had died and gone to heaven, until the throbbing from the bump on my forehead kicked in, that i realised what had happened!!

Moral. Do not put a helmet on a headbanger from the front!!

Sunday, 16 September 2007

Is Paddington autistic?!!!



Yes Paddington has after all these years of eating marmalade sandwiches, has switched to marmite!

It must be true i saw it on TV!!!

And my immediate thought was 'hes autistic'!!!

C eats the same thing for years and then suddenly stops! And i have a mad panic to try and find something else that he will eat! He grew up on french bread and crisps, then did a few years on pizza and now its pasta. Oh and my special muffins. When out its chips (wont eat chips at home). He will also go for days without eating at all. I am amazed he has grown to 6 foot and is still growing!!

But he does love his marmite, may be that's why!

Or was it the bark from playgrouds?

Saturday, 15 September 2007

I met an angel



A few weeks ago i met an angel.

No not this one (unfortunatly!!)

C and I were travelling on a bus, he has got much better at coping on the bus. We sit at the back (as there is more leg room) and I sit away from him, as he prefers space.
When the bus goes fast in a straight line he ferociously shakes his head and squeals very loudly. When the bus stops he bangs his head on the window. Of course everyone on the bus turns round to see where the noise is coming from. Because I was sitting on the other side it must have looked like C was on his own.
Sitting in front of me was a young boy with blonde hair. He kept watching C out of the corner of his eye, and every now and again would turn round and glare at me.
Eventually the young boy asked me in a very curt tone what I was staring at! So I told him I was watching my son enjoying the bus going fast. He looked relieved as he thought I was laughing 'at' C. He then went on to tell me he was one of 7 children, all his 6 brothers and sisters were somewhere on the autistic spectrum. So he had realised that C was autistic, and because he had seen me smiling at C he thought I was laughing at him, and the young boy was going to defend him.
A member of the public, defend my son! That has never happened to us before. I was overwhelmed.
We carried on chatting, he told me a bit of his life. Suddenly C let out a really loud strange noise, the bus driver stopped, got out and went round the bus to look at the engine!!! Everyone on the bus laughed as we all realised what had happened. The young boy jumped off the bus and went and told the bus driver, as C by this time was not happy that the bus had stopped!!!
Soon we were off and soon it was time to get off.
I will never forget that young boy who was prepared to stand up for my son. I wish more members of the public would be more understanding.

Friday, 14 September 2007

Disabled Parking Bay

I have a disabled parking bay out side my house. Every now and again people with out blue badges use it.

Today someone has left their car in my bay, and its still there.

Any suggestions for rude notes i can leave on the wind screen????

Thursday, 13 September 2007

!!!! STRESS !!!!


We all get stressed, whatever our situation.

Only you can help yourself deal with your own stress.

Here are some of the things that have helped me over the years.

The biggest one for me is acceptance. (Accepting my sons behaviours are just part of him. At the moment I am finding the public the most stressful as I am having a hard time accepting their reactions to my son.)
Good friends. A good friend is cheaper than a therapist.
Wine
Healthy eating
Divorce. Don’t recommend this for everyone!
Homeopathy
Herbal products
Bach remedies
Massage
Reflexology
Shopping
Theatre/cinema
Having the right information
Sudokus
Reading
Walking
Good sex (or so I am told!)
Reike
Voluntary work. (Helping others can help yourself.)
Sitting on committees. (No maybe not!!!)
And my new one.......Blogging !!

To help C with his frustration and anxiety with this supposedly NT world, I have tried a few things, there are many more but not always appropriate.
Also must add I have never tried to ‘cure’ him and never would. Doesn’t even bear thinking about as then he would not be him!!!

Colour therapy
Aromatherapy
Hypnotherapy
Reiki
Homeopathy
Music therapy
24 hour curriculum
Food
Sensory rooms
Drugs. This to me was a last resort. Research these very carefully.

What have you found helps you and/or your child/adult?

Maybe i should add how C helps himself.
He keeps himself to himself, if people intrude he head bangs, he permanently has his fingers in his ears! And he stims. Big time! Routine and not speaking.
How do other autistic people help themselves?

Wednesday, 12 September 2007

Autistic 1 liners

Autistic children rock!
Normal is a setting on a washing machine.
Today's autistic children, tomorrows geniuses.
If your autistic, flap your hands.
I think spinning should be a sport.
Eye contact is over rated.
To stim or not to stim, that is the question.
Its ok, i think you are weird to.
This is a cat. It is very happy being a cat. It is not a defective dog.
Autism isn't contagious but ignorance is.

From Cafe Press
Anyone know any more?

Tuesday, 11 September 2007

Head banging


When he bangs his head you can hear his brain rattle.
For me this is the most distressing thing that C does. As a parent to see your child hurting them selves is one of the worst things.

Last night i had my weekly phone call from Cs boarding school. Because it is the start of a new year they have new students and new staff. C finds change hard, so his incidents and the severity of his headbanging have gone up.

Over the years he has cracked walls, broken bathroom tiles, smashed reinforced doors and double glazed windows, TVs. The list could go on. All with his head.
He has been head banging since he could sit up, he is now 6 foot. His skull has now hardened, he has 3 calcified oedemas on his head. I'm not sure if this is a good or a bad thing, a thicker skull protects his brain, but it also means he hits harder.

When the head banging has been really bad he has given himself concussion, and/or induced fits. It could kill him.
It has certainly shaped my behaviour.

Some staff find his headbanging very hard to deal with. Understandably. Which is a good thing as then they try everything in their power to prevent it.

C has to leave school in this next year. This change will be enormous. I find it very hard to think about it. But when the time comes everything that can be done, will be done to help him.

So why does C do it? Its his form of communication. And it is very effective. The trouble is every time it works it is reinforced. Over the years we have tried various other forms of communication, but he is not interested.
He even bangs his head when he is happy!

But to end on a lighter note, I did speak to C and i heard heavy breathing down the phone!!

Monday, 10 September 2007

Parents have labels to.

When i tell people C is autistic, the usual response is 'hes good at drawing then'!!! Or they think of the Rainman, or the MMR! C is also low functioning. But i am now confused about using that label after reading other blogs by autistic people. And as for learning disability and special needs - we all have those!
C also has the label of Challenging behaviour and SIB (Self injurious behaviour). These labels conjure up all sorts of images. And as no 2 peoples behaviour is the same, peoples assumptions are usually wrong.
If i say C is disabled, people are then confused as he is not in a wheel chair!.
So labels can be misleading. But we need labels to get services.

As a parent of a son with disabilities my label is 'parent' or 'carer'. Which means, I'm over protective, over emotional, i want to much, i don't know what I'm talking about. I don't live in the real world. I scrounge of society and i make no contribution. And i have challenging behaviour! Etc etc.
Also with my label of single parent (and i wont mention where i was born or you will make more assumptions!) I don't stand much of a chance do i!!!! Hence my challenging behaviour!!!

Saturday, 8 September 2007

Blog facts

Someone asked me yesterday where the word Blog comes from and i didn't know. I have now looked it up and its a combination of web and log! We blog. Obvious when you know!
Also found some other interesting facts about blogs....
25 million people in the world are on line!
70 000 000 blogs! To date.
175 000 new blogs are created everyday. That's 2 new ones every second!
250 000 000 blogs are from the UK!
Anyone know any other interesting blog facts?

Happy blogging!!

Friday, 7 September 2007

C at Speakers corner! What would he say?



If C could speak what do you think he would say?
Today im sure he would say 'Happy Birthday Mum! Love you and the card is in the post'!!








Or he would say 'Stop following me around with that camera'!











But i actually think he would get on his soapbox and do his autistic rap!





Thursday, 6 September 2007

Rainbows end



My pot of gold at the end of the rainbow!!!

There isn't a better treasure i would rather have!!

Wednesday, 5 September 2007

Communication

C doesn't speak.
And as a mum this was one of the things i wanted more than anything, to hear his voice. To hear him say mum or i love you! I used to have dreams about it ( a friend of mine still does!)
But after 18 years, i find this is not important anymore.
He doesn't sign either and as for PECS......well!!
But he dose communicate by his actions and with his eyes. Id say i know about 90% of the time what he is meaning. He certainly gets 'no' across!
A few years ago in a review i was told in passing that his has oral dyspraxia, which may explain why he doesn't talk. And not that hes a male chauvinist and expects us women to mind read!!!
The trouble with not speaking and appearing not to be interested in much, makes one assume that he doesn't understand. But after reading blogs like this one http://ballastexistenz.autistics.org/ others, they have made me question this.

About 7 years ago i had a phone call from his boarding school. Apparently 3 members of staff had heard C say 'Thank you'. Unbeknown to them on that same day i had had long distance Reiki done on him. Coincidence? Who knows! He has never spoken again.

His actions are louder than words! And he is certainly not quiet!!

Tuesday, 4 September 2007

Progress

A few months ago i met with a group of mums with young autistic children. I was very impressed with the amount of services they receive, compaired to the support we got all those years ago!!
In 'those' days (i have a birthday approaching so feel old!) there was not much information around. I didn't have a PC and my medical book just said; refrigerator mother and ineducable. The only aspie authors around were Donna Williams and Temple Grandin. Their books were my bibles.
Now there is more support and a wealth of information at the touch of your fingers on the Internet. Especially by autistic people. So i sincerely hope this generation and the ones to follow will have an easier time in a more understanding world.
C and i do our bit! We educate the public every time we go out!! And the schools that he has attended have been on very steep learning curves with him!
However i do feel very fortunate i did not have him 20 or even 30 years earlier. I very much feel for those children and families.
So even though i may not always feel it, progress is happening.
And long may it continue.

Monday, 3 September 2007

Like any mother.

When C was diagnosed i was told i should give him up for adoption.
I did not even think about it.
But this did not prepare me for someone very recently implying i should of had C aborted.
No parent should have to hear this.
The opposite of this is also very upsetting. When people don't know what to say to you so they say nothing, as though my son does not exist.
He very much exists. My life is built round him, like any proud mother i love talking about him. And like any mother all i want for my son is for him to be happy.

Saturday, 1 September 2007

Change

I am still in the library :( I have had to change my routine, which has completely thrown me!!
I know we all find change hard, autistic people in particular. My son couldn't cope when the council moved our local post box by 3 yards, even though he could still see it!
I certainly have a few autistic tendencies, as do some of my family! My ex husbands family also. C got it from all angles. To me it is obviously genetic. So if you terminated autism you would wipe out whole families and generations.
I have never wanted to cure my son, he would then be someone else! But i would like to cure societies attitudes.
I could go on about that but as i only have 5 mins left on this pc i wont!!

So a quick Happy Birthday to Cousin of Shrek (number 6 of 8) 2 today!