Wednesday, 31 October 2007

Cs impersonations

I was thinking about how I describe some of the things C does, so that you can see it in your minds eye. And I realised that actually I think he’s a born entertainer! He certainly doesn’t seem to mind people staring at him.





He does a great Shrek. Frightening people when they first see him (because of his rather large stimming movements).
Tarzan with his chest beating.
Ostrich, watching shows with his head between his ankles.
Plays an air guitar, another of his big stimming movements.
A marathon runner in training, he jogs on the spot, i swear he must do a marathon a day!
Giant mouse impersonation, an ear piercing shriek.
And don’t forget his tribal high jumps.
He however doesn’t do Rain Man!


Talented isn’t he! A natural!

All I can do is the noise the Starship Enterprise doors make when they open!
Oh i do love Star Trek, maybe its because they are all so accepting of different species?

What can you or your kids do?

Tuesday, 30 October 2007

The universe stopped just for a moment


Taking C back to school we were standing up on a packed commuter train heading towards London. The commuters are all in their boring black suits pretending not to stare at C over their newspapers and laptops.

C is smiling, C is happy head banging, C is jumping at least a foot in the air, he’s doing his usual I am really happy to be on a train ritual. After about 10 mins (we now have about 3 foot of space as everyone has backed off) of this he calms, and attaches his tongue to the immaculately clean window (not).
With tongue on window, humming, index fingers in ears, 4th fingers up each nostril, he then pokes his middle finger in each eye and looks at me!

He is looking at me, really looking at me!

I must be really distorted! I properly look better like that!
It was a lovely moment, I felt he was looking deep into my soul, so I telepathically sent him all the love in the world - no the universe!

Thank you Quasar9, I pinched one of your pics and blended it with one of me!

The journey went really smoothly for a change and the book was a laugh! So maybe the cosmos was with us?!

And the wine and sleep were a treat! I managed to lay in till 6am!
Ps Something for Halloween.

Monday, 29 October 2007

A long day


I take C back to school today, I have blogged about this before so I am just going to repost.


I do have a new book to read on the train which I am looking forward to it is by a local author and blogger Anne Brooke. I’m hoping it will keep me awake!! Thank you Anne.



Empty.

It will be a long day. A 9 hour round trip. 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.

Sunday, 28 October 2007

Disney On Ice

I enjoy going to the theatre, so over the years I have built up Cs tolerance to going. And the last couple of years he has got really into it.
We started off with shows he could relate to, from his DVD collection, like Thomas the Tank engine, Scooby Doo and Bananas in pyjamas. Etc.

He has since progressed on to shows like The Blue Man group. This is a really great show and C loves it as they don’t speak and is very visual, we have now been 4 times! The other one is Stomp, again no talking!
We get there seconds before the show starts so C doesn’t have to wait and leave just before the end to avoid the crowds.
We sit at the end of the row, in case we have to make a fast escape. I have also learnt it is better to sit at the front. We used to sit at the back, but because people keep turning round to see who is squeaking and flapping they were missing the show! So if we sit at the front, people can watch the show and C! And that way I don’t see everyone staring at us!

Today I took C to see Disney on ice as it featured The Incredibles, another of his favourite DVDs at The Dome in London. Thank you Grandmother of Shrek for a fab birthday present for C x
Here is our day





C adores going on tube trains, and really loves seeing the tube train emerge from the tunnel. As you can see he was in a flapping frenzy! And doing his Tarzan chest beating impersonations.







Here is C outside The Dome, he didnt want to stand still so was pinching himself. Sorry C.











Here we are at the rink side, we had a great view. For the first half C did his ostrich impression. Kept putting his head between his ankles (yes ankles) and every now and again would pop up and have a look round and then down he would go.

He watched more of the second half out of the corner of his eye!







We had a wander round the inside of The Dome, it is enormous and had lots of escalators which C loved! So lots of happy headbanging.

So all in all a great day!

Thanks C for taking me! x

Saturday, 27 October 2007

Spring forward - Fall back

Thank you everyone for all your suggestions yesterday, this for me is why blogging is so great as it shares a wealth of experience.
I will print all the comments out and give it to Cs school Psychologist, much of what was suggested is either on going or has been tried before, but there were some new ideas. Thank you.
On a more light hearted note.....
Did you remember to put your clocks back an hour?!
Why do we still do this?
It must be difficult for all parents.
C doesn’t sleep much at the best of times, I find it a bit easier to do the hour change over 2 days.
As its near the end of Cs half term, And I haven’t had much sleep. My best friend commented on the fact if I was invited to a Halloween party I wouldn’t have to dress up.
She may have a point there, even my Shrek ears have gone droopy!!!

Friday, 26 October 2007

Acceptance

From yesterdays post I think most of us agree that we are all on the autistic spectrum somewhere. I wish everyone in my town was as understanding as you all!

So why do some people want to cure autism? Wouldn’t we then all be wiped out?!
And why is there so much abuse of autistic people?


Even my Ex husband wanted to put C out of his misery (That’s why he’s my ex). But it was he who was miserable and not C, C was just being himself!
C head bangs, but its not always because he is anxious or miserable, he does it just as hard when he’s happy. I think his pain threshold must be very different, but then there are lots of people like that!




C has been abused over the years, ranging from being insulted in the street, ignored, neglected, to physically attacked, indecently assaulted etc.

It breaks my heart as he is so gentle (except to himself). Obviously I do what ever is in my power to help him, but I am not always going to be around.

Hopefully my blog has given people a better understanding, but you don’t have to understand autism, just accept all people are different.

Wednesday, 24 October 2007

What is autism?

So to recap!
Over the past few weeks I have been asking you all questions about your different senses, at the same time explaining what it might be like for C. It seemed to get you all thinking, which is great.

I touched on touch
Noise

Routines
Not to mention bondage in the shower!
Smells
Obsessions
Sight
Stimming.
And famous people who you maybe would not have thought to be on the spectrum.

I had lots of great responses. And as you are now all experts…
How would you respond to this…now you know a bit more about autism, how would you describe it? As from your answers we all do these things! Dgibbs also mooted this question here and here.
I was asked recently what is autism, and even though my life has revolved round it for the past 19 years, I couldn’t answer! I must have looked pretty daft!! Because C is just C (I have written a poem about it, but I cant spout it every time someone asks!)
Dgibbs came up with its 'personal' and for C I see it as just extremes of average. Not sure I really like the word average ( a bit better than ‘normal’). But it does illustrate the point as with out extremes, there is no average!

And 'if' autism is a spectrum, I put it to you that we are all on it somewhere?

How do you see the world?


I found this topic interesting as I haven't really looked into it before.
You may be relieved to hear this may be the last time I will be asking you questions about your senses! My conclusion tomorrow!
(Unless there are any others you can think of that you would like me to try and cover?)


Some people on the autistic spectrum – appear to have problems seeing things clearly. To them the world may seem disjointed, confused and scary.For example, people and things may seem blurry, move around or even disappear.

Visual symptoms of autism can include lack of eye contact, staring at spinning objects or light, fleeting peripheral glances, side viewing, and difficulty attending visually. C does all this!
Autistic people often use visual information inefficiently. They have problems coordinating their central and peripheral vision. Ie when asked to follow an object with their eyes, they usually do not look directly at the object. Instead, they will scan or look off to the side of the object. Autistic people might also have difficulty maintaining visual attention.
Motor, cognitive, speech, and perceptual abilities can also be affected when visual processing is interrupted.

We see colour is all around us. It is a sensation that adds excitement and emotion to our lives. Some autistic people can be sensitive to colours. Everything from the cloths we wear, to the pictures we paint revolves around colour. Without colour the world would be a much less beautiful place. Colour can also be used to describe emotions; we can be red hot, feeling blue, or be green with envy.
Without light, there would be no colour.

So do you know how you see things?

Can you read the number in these circles?


























Monday, 22 October 2007

Touching



As a mum one of the hardest things with C is he doesn’t like being hugged.

It is not uncommon, for an autistic person to avoid being touched. This is usually because of a heightened sense of touch — a gentle touch to most people may hurt or shock some autistic people. Others may experience confusion, due to difficulty interpreting the sensation or insufficient sensation reaching the brain to interpret. Another, not uncommon pattern is to have the strength of the sensation inverse from that of the stimulation, so that a gentle touch may feel like an electric shock, but firm contact may not be a problem. Some autistic people may be insensitive to pain, and fail to notice injuries. C finds pain very difficult to interpret, I think that’s one of the reasons he hits his head so hard.

Temple Grandin talks a lot about firm touch., and how her discovery of deep pressure ultimately helped her reduce her anxiety's debilitating effects.

C doesn’t like being touched, or touching anything, even wearing clothes he just about tolerates. As you can imagine this makes life very difficult at times for him when he needs to go to the dentist, doctors etc. Not to mention mundane things like dressing him and washing him!

What do/don’t you like the feel of?

Sunday, 21 October 2007

C at work

It has often been put to me that people like C (who don’t 'do' anything) don’t make a contribution to society and are a drain on resources.
One of my responses to that is that he keeps many people in a job! For example, PAs, Care staff, Education staff, Psychologists, Physiatrists‘, Speech therapists, Music therapists, Social workers. Community Nurses, etc. Cs school are the largest employers in the town its in.
But anyway, here is an example of C not doing anything!

Our day yesterday;




C cleaned 4 BR train windows with his tongue.










C did a safety inspection on the escalators in 3 shopping centres.

(Please don't enlarge this pic, i didn't notice what was on his finger nails till too late!)






C made sure everyone knew where the exit's of a pub were, at lunch time, sorry forgot to take a pic!




C entertained the passengers waiting for a train by doing his tribal high jumping.








And C did quality control checks on 9 DVDs. He has to do the same ones every day! Just to make sure.



For C- all in a 20 hour days work!





Joking apart - there is a place for everyone, and everyone has his/her place.

A question of Ethics

I mentioned my PA (personal assistant) yesterday. I haven’t always had a PA. Until C turned 18 ‘he’ had a PA (who I employed on his behalf) for about 5 years. But when he turned 18 I was told he couldn't have a PA anymore even though it was working well because….he couldn’t consent to it!!! I appealed, it went to an ethics committee and we were turned down.

Here in the UK when you become 18 you are an adult in your own right, and apparently I don’t have a say anymore! So we then had to go through the whole process of me applying for a PA in my own right as a carer. Obviously I got it!!

This consent issue reminded me of the recent case of Alison Thorpe. Benefit Scrounging Scum, and others have blogged about this so I wont.

As mentioned before I don’t feel I have the right to sedate C as it would only be of benefit to me and not him.
But do i have the right to put pictures of his bedroom on the Internet?
Or putting pictures of C on here, without his consent. Or even blogging about him. If he were any other 19 year old I could ask them and abide by his wishes, But I cant with C. So should I adhere to his human right of privacy now he is an adult? Or do I have a right as his mum to use my own judgemeant?
C is on show all the time when we are out, he is looked upon as some sort of freak. Hence I wanted to do a blog about us to show people he is not. And by educating people it would be of benefit to him. Is this my right? Like Alison Thorpe, I am just doing what I think is morally (but maybe not ethically) right.


But is it?

Saturday, 20 October 2007

Escalator Surfing

For about 12 years now C and I have surfed the escalators in our local shopping centre. Its part of our routine, its repetitive and they go in straight lines!! The security guards in the centre know us well and have watched C grow up. On many an occasion they have come to our aide when the public have, how shall I say politely - not been very nice. They have also let us in the centre on days when it has been shut and turned the escalators on just for us. How wonderful is that!!




C loves watching feet (less threatening than faces!) So he will stand or rather stim (rocking and jumping) for hours just watching. He is so happy doing this. Luckily in the shopping centre there is a cafe, right by the place he likes to stim, so my PA and I get our caffeine fix whilst we keep an eye on C making sure we are on the ball incase of any trouble.




My PA is wonderful. She has the same attitude to disability as I do and knows me and C well. She has been of great support over the years, she is my rock, my shoulder to cry on, and we have a laugh as well. I employed my own PA under the Direct Payment Scheme, this allows you to find your own support to fit what ever needs you have. Before having this social services were sending me nurses, a different one every time. This did not work and I didn’t want to use the local respite care home, I wanted to be with C. So employing my own PA works very well. What do other people do? Am very interested also to hear what happens in other countries.

Friday, 19 October 2007

Walking in straight lines.

My cat has reappeared, but she has the hump!
The adrenalin of excitement of seeing C is beginning to wear off and sleep deprivation is creeping in. C is hyper in every sense of the word and doesn’t need much sleep or like sitting down. You sort of get used to it as I know its only for a couple of weeks. And it would be very unfair to sedate him just so I can get some sleep.

We thankfully had a quiet uneventful first day. Which is nice as it takes C a few days to adjust to being home. He’s away 5 or 6 weeks then home for 2 weeks. This is supposed to be more consistent as it means we don’t get such a long summer holiday. No local school could handle C, hence I had to look further a field. I ended up travelling the entire country to find a specialist school that I thought he would benefit from (even then they don’t always get it right) Its obviously not ideal but I do believe C is getting a better quality of life this way.

A few of you asked about transport. C likes straight lines. We have to walk in a straight line, going round corners he finds distressing, and turning round and going back on your self is a definite no no. And I cant stop and look at anything. C prefers to walk behind me, and im not even allowed to turn round and look at him, all result in head banging. But being a mum I have eyes in the back of my head! The same when driving , forget roundabouts, turning round, going backwards, slowing down, don’t stop at traffic lights or roadwork’s! Head banging in the confines of a car is not a good situation to be in. And I don’t agree with restraints. So trains, ‘if ‘they behave are the easiest option! C is still very happy to be home. I give him plenty of space and time out. I try not to put too many demands on him, and try and do things he enjoys, after all it is his holiday and he does need a break from learning to count to 2. (Why do schools have to do that!! )

So today we are escalator surfing and feet watching with our PA! I will expand on that tomorrow!!

Thursday, 18 October 2007

We made it back!

Well we made it back! My cat has now disappeared and the neighbours have battened down their hatches!

Thankfully no one committed suicide, but a few signals died so I missed all my connections. The ‘nice’ taxi driver drops me off at the sea front, I cant go all that way and not see the sea. Then a mad dash up to the school.

And there he was, im sure another inch taller (now over 6 foot!). He smiled at me, only a flicker, but it was a smile! Wow, that was a first! And then he started head banging the nearest wall, time we departed! Some autistic people find it difficult to transfer things, so I shouldn’t be at the school! Its too confusing for him.

The journey back wasn’t too bad? I had to contain myself, I just wanted to hug him chat to him, tell him things, ask him questions. Not that he can answer. But he finds human voices and touch to hard to tolerate, so we sit in silence, me with my nose in a book, every now and again stealing a glance at him with a big grin on my face! He- licking the window, watching the world race by with his fingers in his ears.
Over the next 4 hours we get many stares, one old lady laughs at him hysterically, haven’t seen that reaction before, and some teenagers remarked rather loudly that they were going to another carriage. But this is nothing, and I do have to remember people don’t often see the likes of C. But I wish they weren’t so blatant about it.

Anyway, got home, really big smiles and ear piercing screams.! Which melt my heart! I put on a DVD and he strips off.

My heart has stopped melting as I can smell poo….got to go! (For those of you with young kids that smear, just you wait till they get to 6 foot! You need a step ladder!)

Tuesday, 16 October 2007

Half term!

I’m excited and nervous. My house and my life have been rearranged and my brain will follow! I pick C up from boarding school today.
It’s a long day, a 9 hour round trip, 6 trains, 3 taxies.

Oh I hope I don’t get the taxi driver who told me I should have had an abortion, or the taxi driver who dumped C and I in the middle of nowhere cos he couldn't cope, or the taxi driver who wants to get into my knickers.


I hope there aren’t the wrong type of leaves or water on the tracks.

I hope everyone is feeling happy today and no one decided to commit suicide in front of our train. This has happened 7 times now. Each time the train has stopped in-between stations for up to 2 hours. C finds this impossible to deal with, as then so do the other passengers as they watch in horror as C goes into a head banging frenzy.

I hope I can not let it get to me when people stare at, laugh at, point at, mumble at, mimic and video C.

I hope I can give C the relaxing holiday that he deserves. (Especially after what happened)

I hope I can find him something he will eat!

And hes a year older since i last saw him!

I hope he will give me an enormous hug when I see him. I know he wont, but I can dream...

Got to go….have a nice day everyone!

Monday, 15 October 2007

Google your name!

Ian suggested googling your name, so I did and found this!!


If Shrek's Mom Had Only Been Sterile~By John Jenkins
To the tune of The Wreck of the Edmund Fitzgerald


The stories live on from Pinocchio on down,
But it's not a good message they're sending.
They delude our youth with what can't be the truth
‘Cause they all have contrived, happy endings.
To undo the harm of false fairy tale charm,
All their plots should have drastic corrections.
So I liked the jihad of that zealot Farquaad,
With his plan for their heroes' collection.

I would have known rapture once he got them captured
And began to rewrite their conclusions.
Then once he refined those Pollyanna plotlines
Our kids would stop believing illusions.
The old woman who tried to live in a shoe
Should be moved to the Duloc self-storage.
And then, Goldilocks should be locked in a box
And be forced to eat cold and hot porridge.

For sparing a child, but killing a boar in the wild,
PETA should sue Snow White's woodsman bumpkin.
And in Farquaad's scheme, instead of a pampered queen,

Cinderella would become a pumpkin!

The princess who slept on a pea now should be kept

At a clinic for sleeping disorders.
And six dwarfs would find their jobs had been reassigned
And outsourced across our southern border.

The next time Jack's seen, he won't trade his cow for beans,

He'll sell it for his cocaine addiction.
And Red Riding Hood didn't do quite what she should
So Granny will put her on restriction.
And then Miss Muffett should get up off her tuffet
And do Hollywood with Little Boy Blue.
How long will she last when a director casts
Her in “Arachnophobia Part Two”?

If kids were able to learn these improved fables,

Their perceptions of life would be keener.
But this vision flopped; it was brutally stopped
By an oversized green intervener!
An ogre named Shrek freed these creatures and wrecked
All my hopes for fairy tale revision.
And it drives me mad knowing the plan Farquaad had
Would have worked if Shrek's mom had been barren.


Can anyone say what's in the DNA
That explodes out of an ogre's barrel?
It can't be good seed, so we shouldn't let them breed,
Oh, if Shrek's mom had only been sterile!
Where humility and brains are meant to be
Shrek's gene pool has only two big voids.
Is he the offspring of two ugly swamp things
Or a Grinch action figure on steroids?

Since it can't be known what's in the chromosomes,

That might come out of an ogre's barrel
And since Shrek got wed to that funny redhead,
I now hope that Fiona is sterile.
The stories live on from Pinocchio on down,

And my tolerance is growing punier.

But it could be worse (this song might need one more verse),

If Fiona gave birth to Shrek Junior!



Quite clever isn’t it! There are others at…

Sound Bytes!



Some sounds can be soothing, some stimulating and some very annoying for all of us.


Autistic people may cover their ears or become anxious or withdrawn in noisy places.
This sensitivity can cause a person to try to disregard the noise and can make them appear to be deaf, when in fact their hearing is very good. C has his fingers in his ears all the time. It amuses me at to what people must think when im walking down the street with my teenager with his fingers in his ears!!

Some people have selective hearing i.e. they do not appear to notice certain sounds, including some very loud noises, but they do notice and react to other sounds. I think we all do that! C appears deaf but can hear a crisp packet at 50 yards!!

Some have hypercusis i.e. they find specific sounds distressing, disturbing or even painful.
Some sounds are fascinating, and they want to hear it over and over again.
And some seem to be unaware of the noises they make themselves. C makes really loud high pitched screams!



What are your favourite sounds, or sounds that make your teeth on edge?

Sunday, 14 October 2007

Routines

Your comfort zone is your routine, your set of habits, your safety bubble of easy, comfortable and familiar habits. And if something upsets your safe routine, you may freak! And more so if you are autistic.

People with autistic spectrum disorders are often reliant on fixed routines which are known and trusted and may find even small changes to routine disruptive or distressing. They may have stereotyped or repetitive behaviour such as wishing to sit in the same seat and becoming upset if they cannot.

When my PC died, I had to change my routine drastically till I got a new one. I found this very hard!
I have a routine round the supermarket, so if they decide to change all the shelves round it completely throws me!
Or if I go out without my mobile………

C lives by routines, he finds change sooo difficult, and results in head banging. Which is very effective as we all try very hard not to change his routines, but things happen and you have to.
We have to walk down the same sides of the street, he has to walk behind me. He cant cope if I wear sunglasses, or have my hair cut drastically. He cant cope with changing class rooms or bedrooms. When we moved house it was really hard for him. For example, when getting out of bed in the new house, even though he could see the door, he was still going in the same direction of where the door had been in his old room. Took him about a year.
He has to leave boarding school next year. So very big changes all round.


So what changes in routine do you have difficulties with?

Saturday, 13 October 2007

Spare a thought

I am feeling sombre today as my father told me yesterday he is dying.
So I'm going to do a sombre post.

All parents know raising any child is difficult at times. For us parents with a child on the spectrum (I cant speak for other disabilities) it is made a lot harder not only by other peoples attitudes but the lack of funding for schools, respite etc. There is a general lack of understand not only by the public but professionals to (Hence my wanting to write Mother of Shrek)

Some parents go under. It makes very depressing reading.

Helen Rogan threw herself off a bridge taking her Autistic son with her.
Karen McCarron wanted to end her daughters pain.
William H Lash shot his 12 year old son and himself.
Casey was 17 when her mother killed her.
I could go on.

The abuse our children can suffer makes us as parents suffer. The frustration, the fighting for our children’s basic needs, the knock backs, its all so wearing and draining.
When we go out we are stared at, laughed at, our friends desert us, our families don’t know how to help. Our world shrinks.
And for some it ends in tragedy.
Its not just about accepting our Child's autism , (Jim Sinclair helps with this) It is about society at large accepting our Child's autism.

Thursday, 11 October 2007

Cs Bedroom


Would just like to say a big thank you for all your suggestions yesterday. As i am on my own it is so nice to have people to ask!! I will bear you all in mind again!!

I wish the general public were as open minded as you all.

Thought you might like to see a photo of Cs room.

The walls are padded (as well as protecting his head, it hides a multitude of damaged plaster!)

The sheets of cellophane, are because he likes looking at reflected light.

The windows are bullet-proof perspex . C put his head through the double glazed window.

The bed is 3 mattresses. I gave up buying new beds as he broke so many by bouncing (hes now 6 foot!)

The floor is non slip easy to clean (he smears)

C loves his room and spends many hours stimming (rather than sleeping) there.

I love it as i know he is safe.

And cousins of Shrek love it to when he is away as its like a soft play room!


Ive just be given an award for my post yesterday, for making But Why smile!

Thank you! Am really chuffed!

Many blogs make me smile, but the 2 that made me laugh today were Maddy for her 'English Chihuahua’s don’t understand American'. And Steve, because he cant chop carrots properly!!

Wednesday, 10 October 2007

Autistic shower bondage


I would like some advice please on what i can do in the shower?!

Stop that! I am a respectable 'lady' (cough!)

This is a photo of my bathroom. As you can see the walls are wood cladding. I did have tiles but as C head bangs he smashed rather a few tiles over the years. Bathrooms are not his favorite place as he doesn't like being washed, he cant do it himself and he finds human touch difficult.

As C was frequently smashing more tiles and slivers of tile would get under his skin, i ripped all the tiles out and had wood put in. I don't have a shower as again not something he can tolerate until recently. As he can now, i have been looking at showers ( this would make washing him after smearing much quicker!)

Yesterday i had a bathroom man come round to discuss. After he saw the wood cladding he felt this was not an option for a shower. I explained the problem and he simply said, 'put a head restraint on your son'!! I just asked him if they were such a thing as rubber tiles? He didn't know.

As people say so many daft things to me about C, i didn't even register what he had said till after he had gone!

So i gooogled head restraints and found these.....










But how would this stop him headbanging?

How would i get it on him? (see my fireman post!)

And how would i wash his hair?!!!

So i googled some more, and found some other options!!




But somehow i think i would get done for child abuse!

So on a serious note, has anyone any ideas of a soft water proof option for walls round a shower in a bath?

Thank you!