Wednesday, 29 April 2009

Aaaa!! I can't keep up with myself!!!

First of all, I have to apologise to Jane from Days Of Our Lives
for not collecting my Golden Heart Award till today. I am
honoured to be in the company of people I admire, not
mentioning the award comes from someone who gives me
so much hope, food for thought and laughter. Thank you
Jane xxx!

Next, I have to admit, last 6 days have been absolutely mad.
It's all Spring's fault!!! And maybe people like SquirrelQueen,
who publish all that beautiful, colourful, "springy," photos.
As the world has a makeover I had one too... a bit of vanity.
Like the nature starts to show its colours and start new life,
I long for adventure... So here I am: new hair, new tattoo,
totally new image. I do not work in an office anymore so I do
not have to conform to the dreadful "business dress code" any
more. Yey!

Today I find out I have also been TAGGED in (Un)important
Things by SquirrelQueen (again it's her, lol, love ya really!)
from The Road To Here!

It's a game and it's dead easy!


A) Mention the person who nominated you. (See above)
B) List six (un)important things that make you happy.

It's actually not so easy because there are more than six
things like this, I'm easily pleased....

1. A kiss from my daughter
2. The sound of my children's laughter
3. An experimental dinner cooked by my husband which
is always delicious
4. Sun and rainbows
5. A book or poem I can't stop reading
6. Tom Waits and a glass of good old Jack Daniels on a winter evening

C) Tag six blogs, state the rules and notify them with a short
comment on their blog.

Here you are, these are those I have recently discovered:
1. Awziejam from Too strange To be True
2. VoodoKobra from Kobra's Korner
3. Locateblogger from MusicManiac
4. jb from It's Gonna Take More Than A Hamburger To
Make me Happy

5. Comedianx from Comedians World
6. Grumpy from My Blog

Phew! OK people you've been TAGGED!!!
I hope I will catch up with you all and myself soon...

Sunday, 26 April 2009

Taming the chaos - continued

There is another type of chaos for those with autism.
It's us typical, ordinary people. In contrary to the
usual daily activities we can organise and predict, another
human being is much more difficult to understand.

People are unpredictable. During an interaction, with
another, you can't often predict what makes them laugh,
what might make them angry or indifferent. Even more
puzzling is the reason of the actions taken by others, which,
lets face it, sometimes might seem pointless or illogical.

An autistic person thinks very literally and very logically.
The rules of social interaction are learned not innate. When
Cirwen became more verbal, we had to teach her that you
take turns while having a conversation and keep to the
original topic until it is exhausted. Otherwise, her idea of
a conversation was a long, long monologue on her chosen
subject without an expectation of a response from us. She
just blurted out what she wanted to say and walked off,
leaving us rather stunned. If one of us asked a question,
it was answered with another monologue often not even
relating to the question. We also had to teach and explain
that interrupting someone else is rude and she should wait
her turn to join, or comment on what was said.

There is no "small talk" with an autistic person as well. The
idea of the usual "what a lovely day we have!" is completely
baffling. The day is nice, everyone can see it, and what is
the point to talk about it if it's not leading to any conclusion?

We had to teach Cirwen to listen to what others have to say,
even if it didn't involve her current obsession. You see, her
conversation was always one sided. I would start talking
about the film we watched yesterday, but because she didn't
really like it, she would answer by changing subject to the
latest fairy doll she was obsessed with.

It would be something like this:
- Did you like The Toy Story we saw yesterday, Cirwen?
- Mum, I called the fairy Bianca.
- Oh, that's a nice name for your fairy. But what do you think
about the film?
- Bianca said she would like to fly with me to see flowers in the

As much as it was frustrating I had to give up and talk about the
fairy. For Cirwen, there was no reason to talk about something
she wasn't interested in. Toy Story didn't have fairies in it and
that's what she wanted to talk about.
It took long several years for her grasp the idea, that some people
might be offended.

Another problem she faces, is the reason why people say or do
things, and recognising a joke or sarcasm. She like many other
autistics cannot read facial expressions. If you say something
nasty with a big grin on your face she won't think it's a sarcastic
remark towards her - she will think it's a joke.

Since she became more aware of others and their feelings, Cirwen
is a very gentle and warm hearted person and understands not
to say or do hurtful things. Now, another problem occurs, as she
finds it frustrating and difficult to understand why other children
are mean to her. She dearly wants to be accepted by her peers,
yet children are cruel. They laugh at her and tease her, because
she is different, because she cannot do things they can, because it
takes her longer to understand the lesson. She isn't bullied, it is
what normally happens between the kids at school. I must say she
made three wonderful friends who are literally looking out for her
and always stand up to defend her. She does that for them too.

Point is - people are unpredictable, ambiguous and cruel. They are
scary, confusing and hard to understand. It will take a lot to tame
this chaos. To be comfortable with the unknown, unpredictable
when she is left alone.

Wednesday, 22 April 2009

Taming the chaos

My life rarely was organised. I am an opportunist, so my plans
don't go further than next week. Usually what I have planned
doesn't happen, because I found something more exciting to do...
or the plan couldn't be executed due to the unforeseen obstacles.

My decision to go to Great Britain to study was taken within
a week. The plan was to obtain qualifications I needed to proceed
with my interpreting career. Well, I met my now husband and the
plan went to the bin. No regrets. We have planned to get married,
but the date was always unclear. After ten years and two children
it took news of my father's visit and three weeks later my dad
arrived to my wedding.

For my daughter it would not work at all. As an autistic, she is
looking for patterns. They make life predictable and safe. She
does not like radical changes. The unknown for her is dangerous
and even terrifying. Although she was unhappy in hour previous
flat, we took a good few weeks to prepare her to move to a new
house. She was six by then. In order to make it as easy for her
as possible, we explained that the new house will have only one
neighbour next door, which meant there won't be so much noise
at night. It would have a huge garden, where she may find fairies
and play safely in summer. We took her to view the house although
it was a school day, so that she could see what it looks like, see her
new bedroom and the garden. We moved within the vicinity of her
school, so she didn't lose her only friend. We came back several
times to see the house before we had the keys in our hands, just
to help Cirwen to get used to the idea of moving. In the end we
moved 3 days before Christmas and it was great. Cirwen slept
through the night and bloomed.

In spring she complained, that she couldn't sleep in the morning
because... the birds were too loud!!
(It was a nice change after the drunken rows disturbing her in our old place)

Up till Cirwen was about four years old I had to carry her around
almost everywhere. There were places close to where we lived,
were she was happy walking, but as soon as we left the familiar,
she was up in my arms. Only when she was three and a half, I
complained that she becomes a bit too heavy for me to carry. Her
answer to that was
"Please mummy, I don't know where we're
It didn't matter that I told her we were going to town
to have ice-cream. The problem was she didn't remember the
way and was scared she will get lost. Obviously this fear was
stronger when we went on holidays and she didn't recognise
anything at all.

This kind of disorientation and fear relates to everyday life as well.
There are routines and rituals Cirwen lives by and cannot be
missed. If they are, she withdraws, gets confused, unhappy;
earlier it was a tantrum. Every morning I wake her up with
the same phrase, and remind her of what she has to do next.
Not that she doesn't know she has to keep personal hygiene -
she likes to hear it. It's reassuring. She eats her breakfast
and then she watches her favourite program on TV before
going to school. It's kids news. Even the way we get dressed
and leave is pretty much the same.

When she is back from school, she tells me what happened;
always starting the sentence:
"Well, I came to the classroom
and said hello to Miss and my friends..."

The activities later are varied now as she is more flexible and
has more interests. The bed time however, again has a routine.
I still tell her when to get ready for bed and then I used to read
her a story, now she is older and she reads a book on her own.
She still sometimes asks me to read with her. This is how difficult
it can be to change the ritual. I do tuck her in with a little "girly"
conversation. I have to make sure her quilt and pillows are on the
bed exactly as she likes.

This is the most difficult thing to do when we are away from home,
as she can't sleep for a few nights due to the fact that the bedding is
not the same.

Now Cirwen is eleven now and I am trying to teach her
independence, by giving her little chores in her bedroom.
Although she opens the wardrobe and drawers to get dressed
everyday or watches me doing it, she can't remember where they
go. In order to help her to be able to tidy up her clothes and toys,
I labeled all the shelves and drawers. Now she doesn't need my
physical help to keep her room in order.

The lack of short term memory is very typical for autistic people.
The order,the pattern, making notes and labelling is very important
to lead a comfortable, happy life. A lot of autistic adults never
leave their parent's home as they can't face independent life.
Of course there are many who make it on their own, but this
again depends on the support from parents, social services etc.

I hope, that my Cirwen will be able to live on her own one day.
As much as I am scared almost to death for her, I'll do what I can
to teach her to live full, independent life.

I have to say, thanks to my autistic daughter I have learned
to better organise my own life. Well, to a certain point.
I still keep my little bit of chaos for myself.

Thursday, 16 April 2009

The Neno's Award

Another day - another award! What a lucky streak! Thank you Squirrel
for passing this honour to me placing me on the same platform as
the greatest. Thank you!

The Neno's award is:

1) a dedication for those who love blogging and love to encourage friendships through blogging.
2) to seek the reasons why we all love blogging.

Why do I love blogging? There are so many reasons... to shed a bit of light what autism is,
how we deal with it, to meet so many great people and share experience, knowledge, beauty
and the list will be too long.... You all know why.

The aims of this award:

1)As a dedication for those who love blogging and love to encourage friendships through blogging.
2)To seek the reasons why we all love blogging.
3)Put the award in one post as soon as you receive it.
4)Don't forget to mention the person who gives you the award.
5)Answer the award's question by writing the reason why you love blogging.
6)Tag and distribute the award to as many people as you like.
7)Don't forget to notify the award receivers and put their links in your post.

I haven't been blogging for long, so I am still finding new blogs and new friends
I would love to pass the Neno's Award to:

1. It's Gonna Take More Than A Hamburger To Make Me Happy
2.Provocation of Mine (d)

They are fresh and full of passion - enjoy your visit :-)

Tuesday, 14 April 2009

A big "Thank you" to AlPha B.

It have been very eventful two days here, within
the blog community. The Awards being given and

Thanks to these awards I have so many new
fantastic blogs to check out and follow! Phew,
it's very exciting and spring like...

However, what I actually want to say is:

Thank you AlPha Buttonpusher. Thank you
for passing the honour of Noblesse Oblige
to me. I have only started my blog a month
ago with big aspirations but expectation of
rather mild response due to a sensitive subject
or, as they call it niche. I am truly stunned by
the warm welcome, encouragement and variety
of my readers!

To add a cherry on top AlPha has took her
time to search for these new autism related
icons with added link to "Untamed thoughts..."
What can I say but: just jump up and down
and shout again Thank you!!!

For your time, generosity and all these

beautiful things and thoughts you do!

Click away dear friends, copy and paste,
add anywhere you wish.

Monday, 13 April 2009

If there was a cure, would I...?

The Speed of Dark by Elizabeth Moon is another one on my favourite books list. I have written
this review for one of other websites I joined. The book is placed in a futuristic world. It left me
with very strange question. If there was a cure, would I put my daughter through it? Would
she stay the same and if not would this be a change for better?

For those who are here for the first time. Please remember I am pondering over the mild case of high functioning autistic. In the case of severe autism I would not hesitate.

The Speed of Dark is narrated mainly by its autistic hero, Lou Arrendale. Written with the honesty and passion the book is another example of Moon's gift for characteristics.

Lou is 35 and his life is perfectly organized. Thanks to his gift for pattern analysis he works for a pharmaceutical company together with his "normal" and autistic co-workers, he practices fencing, makes friends. He follows the rule hammered into his head for years: "Act normal, and you will be normal enough."

His peace, however, is shattered after his "normal" friend's violent outburst and an unexpected announcement of his new boss. The management gave all autistic staff an ultimatum: undergo the new experimental treatment to cure autism or lose the job. The treatment will alter the subject's brain, wipe out everything what made them - personality, memory, knowledge - tabula nasa.
That is when Lou's exploration of free will, identity, health and illness, good and evil begins. He looks for answers. Who will he become? Will there be a slight memory of Lou Arrendale left when he wakes up? Is it really better to be "normal"? What is the speed of dark? If he chooses to undergo the treatment he will have to catch the darkness. Lou throws himself into studies of neurology in order to find the pattern which would help him understand his dilemma. Like many little boys, he wanted to become an astronaught and because Lou was autistic this dream could not come true. If he becomes "normal" will he be able to follow that path and make his dream come true?
His philosophical quest for self is captivating in his obsession with the speed of dark. Lou finally makes his decision - "When I get there, the speed of light and the speed of dark will be the same".

Elizabeth Moon has presented us with a very believable character and psyche of an autistic. You will not find many so insightful novels written by a "normal". Her book is a gift to all of us; a chance to understand the unknown; appreciate the different, and question. "Not knowing arrives before knowing" says Lou; such a simple truth but how much courage does it take to make this step and find out...

I have put down this book with many questions still gnawing at me and I hope those who will read it now, will see why. Most compelling and eye opening piece of great literature.

Sunday, 12 April 2009

The Award

I cannot believe my eyes. My little blog has been recognised for this wonderful award. The more appreciated it is, as it has been
given to me by THE GEM of this community herself Alpha Buttonpusher whose blog I read almost religiously. No one should
INduCed MEtaMoRphOsis.

The recipient of this award is recognised for:

1) The Blogger manifests exemplary attitude, respecting the nuances that pervades amongst different cultures and beliefs.
2) The Blog contents inspire; strives to encourage and offers solutions.
3) There is a clear purpose at the Blog; one that fosters a better understanding on Social, Political, Economic, the Arts, Culture and Sciences and Beliefs.
4) The Blog is refreshing and creative.
5) The Blogger promotes friendship and positive thinking.

The Blogger who receives this award will need to perform the following steps:

1) Create a Post with a mention and link to the person who presented the Noblesse Oblige Award. (done)
2) The Award Conditions must be displayed at the Post. (done)
3) Write a short article about what the Blog has thus far achieved – preferably citing one or more older post to support. (see below)
4) The Blogger must present the Noblesse Oblige Award in concurrence with the Award conditions. (done)
5) Blogger must display the Award at any location at the Blog. (done)

What this blog has achieved so far? This is a question... I hope it has achieved the main goal:
to raise awareness of autism and ruin some myths. The "sub-goal" is to share the way I deal
with my daughter's disability, the positive attitude towards it despite the obstacles and
creativity of parenting it demands. The nature of an autistic mind. I hope...

1) Autism - Myth and Reality
2) About a girl who didn't like love
3) How Goth culture helped my autistic daughter
4) Have you got an autistic bone in you?
5)Something to read

These are the blogs I chose to pass the Noblesse Oblige Award:

- poet and writer who's comedy just made it to stage
2. My Live... lived my way - for his humour and such a modest heroism
3.The Yes (Woman) - for her incredible honesty and insight
4.The Road To Here - Squirrel Queen's images and thoughts constant flow of
food for thought
5. Riding The Short Bus - for Kat's insight, sharp language and humour

Friday, 10 April 2009

Something to read

There are so many questions to ask when you
first hear the diagnosis of autism. All I new 5
years ago was "Rainman" and my daughter did
not fit into that character at all. As the word
was spoken during the biggest hype blaming
MMR all the doctors where happy to send me
home and deal with it in fear of another hate
campaign against them. I had to beg for tips
and resources and find my answers myself.

Along my search, I found a book which taught
me more than any psychological article ever

"Nobody Nowhere" by Donna Williams is the
ultimate guide to autism. Dubbed by publishers
The Extraordinary Autobiography of an Autistic,
leaves not much more for me to add.

Donna described her first 26 years of life in this
volume. Born in 1960s Australia, she was first
diagnosed psychotic rather than autistic. She
suffered from abuse and negligence. She was the
"crazy girl". She was erratic, ecstatic and withdrawn.

You can observe how she developed many ways
to cope with the outside world. She created two
personalities, to deal with different situations.
She became a perfect mimic and parodist in order
to communicate with others.

Donna left home in her teens as her family could
not manage her. This was a start of a long journey
to her self recognition. Through even more good
and unfortunate events she found herself in England
where she finally broke down. She found here
professional help. At the age of 26 Donna was
diagnosed with autism and numerous digestive
disorders. It took her ten long years of therapy to
start functioning rationally and comprehensively.

"Nobody Nowhere" was written during the first year
as a means to put her life in order. The manuscript
was left behind in Britain and "accidentally" published
(Donna's own words). Within months the book reached
status of a bestseller worldwide.

Since then Donna wrote 9 more books, a few screen
plays, films, recorded CDs with her own music and
songs, she paints and sculpts. She became a teacher,
and a lecturer.

For me Donna is an icon and hope. An example
that against all the odds, autism doesn't have to
stop people from leading a fulfilling, rich life.

Visit Donna's home page to learn more about this remarkable woman.

Thursday, 9 April 2009

Somewhere in the mist

I find it not exactly easy to express my feelings to
others. I usually keep it in. Take all in, soak like
a sponge and then... Then there is that one drop
too many and I EXPLODE. Like a volcano - all my
frustration is blurted out in both languages with
accompaniment of doors and pots, sometimes even
stomping my size 2 feet (not much noise there so
I don't do it too often). It lasts roughly 5 minutes and
I'm back to my normal, laid back self.

The point is, I know exactly what I'm doing, why and
what upset me. I am aware that I choose to be so.

The different story is with my little girl. Being autistic,
she not only has the difficulty expressing her feelings.
She is very affectionate towards the close people to her,
but those who she doesn't know - well, she lacks empathy.

I remember an incident in a park. We were walking past
a little crowd gathered around an elderly woman who
collapsed. We found out someone already called 991, so
there was nothing more to do. What struck me, Cirwen
looked at this woman she talked to everyday about her dog,
and says: "Oh, she's dead." and kept walking. Just like this.
No emotion, no empathy in her little voice (6 years old at
the time).

I froze inside. Am I bringing up a cold hearted tiny person?
Is she pretending to be sympathetic towards us because
she was told that's how she should feel?

We had a chat later at home. She couldn't really explain
what she felt there, in the park. In her logic, the woman
was very old (which really meant older than me), so may
be it was her time to go. She didn't feel sad, because it
was just a lady from a park, whom she barely knew, and
she had no place in Cirwen's immediate life. She was not
bonded or used to this person, therefore, there was no
emotional attachment. She didn't feel sad, because the
lady had a "long life already". It was just pure logic. Not
inhuman - just reasoning of a six year old who took three
years to be able to sit on her grandmother's lap. That's
how difficult it is for her to bond with people. What
follows, that's how difficult it is to let herself to get
emotionally involved even with the family members.

No, she isn't a cold hearted beast. She is eleven now and more
opened to everyone. She can brave an "I love you" and adores
her little brother. Yet, she refuses to talk about the "bad
days" at school, she is very easily offended by other kids. These
are the sad feelings she is afraid to express. She knows now
she is different than her friends, yet sometimes, despite my
reassurance that different is good, beneficial, she wants to fit
in. Just a little bit.

And then there is the mysterious "I'm sad... I just don't feel
myself today"
. I haven't discovered yet, what it is. I have
to wait till she finds another words to describe what she feels.
Till then a hug must suffice, my love and kiss on the hair.

There is a very affectionate, warm and loving person in my
Cirwen. At the moment however, she is still in the mist of
confusing actions of people she knows, disorienting feelings,
looking and testing for what can be harmful or safe.

One day, I know, she will find her path to come out of
the mist and bloom.

Sunday, 5 April 2009

My Dad said that, so it's true!

Do you remember that time when your child started
to question everything? The endless, tiring "Why? Why?
But why?"
causing the constant brain storm to find the
right answer and biting your tongue to prevent this
annoying answer rolling to the tip of your tongue I heard
so often from my father - "Because I'm your Dad and
I say so!"

Usually this time comes (I think) around the age of 3
or 4. I waited for this to happen, and it didn't come.
Cirwen turned 5 and we still didn't hear once asking
"why?". We both thought it was so strange. We
were explaining things around her when we thought
she should know how the world and people work.
Although she seemed interested in what we were saying,
she just took the information with this passive acceptance.
No questioning. In the so typical for autistic people
naivete and distance to the outside world she assumed,
that these two big people looking after her must know
everything and never are wrong.

I tried to provoke the question by asking her "Do you
know how/ why etc. ..."
Or just asking her why she
did something hoping she will start at least to copy me.
No. nothing worked. She would express her interest or
not and she would explain (if she could) the reason for
doing something, but she would still never ask.

It came to the point that one day, my husband played
with Cirwen and her fairies and by the end of the game
she was convinced that Dad is Santa's elf helper and
Mum is the Tooth Fairy... There was no return from
this because Dad said that so it had to be the truth.

This got us thinking. Since then, my hubby started to
tell her incredible load of rubbish just to force to at least
question whether it was true or not. Sometimes I thought
it was a bit cruel, because some things scared her.

She wouldn't touch a key for a good few days, because
Dad said that there is a point in her back, where he can put
the key in and her legs will fall off... I did give him a row
for it as I had to put it straight and explain Dad was joking.

Next were stories about mum's and dad's super powers,
dolls coming to life when you turn your back on them
and many more. Gradually, she started to come to me
after my crazy husband cooked up another mad lie and
ask "Is that true?"

You see, we have that innate ability to read facial expressions.
We can often hear that false note in some one's voice and
a humorous twinkle in the eye which give away the fib or
joke. Cirwen, like others with autism was born without this
ability, therefore she relies on the cold words she hears.

Cirwen was about seven years old when the first "Why?"
ever came out of her mouth. I was beside myself! Two
years of applying both my provocative and my husband's
shock therapy finally worked!

The second aspect of her curiosity, I think, was the fact
that she settled down well at school, started her first
friendship and dared to open a little more to the world.
I noticed then, that she withdrew to her own dreamland
less and enjoyed more talking to others as well as trying
to make jokes of her own.

I'm not sure if she secretly still believes in some of those
stories... A year ago, she asked me if, when she becomes
a teenager she will get her own super powers... So there
I was with the dilemma. Do I tell her again it's all a bunch
of c**p? Or say "yes" and risk she'll repeat that at school
and be loughed at? In the end, I said "We'll see..."

I thought "She's only ten years old. We all need a little bit
of magic in our lives. After all I, myself hope one day
I will see a fairy!"

Cirwen has been gifted with wonderful imagination.
There's no need to kill it.

Off topic...

Cirwen - The name is originating from Caerdwin - the Welsh goddess
of hunting. Meanings: fair, sacred, beautiful star.

The legend says Caerdwin used to hunt in the Celtic forests using her
magical bow. Usually she would take on the form of an animal as
a disguise. Her naked beauty in the full moon light seen by the mortal
eye was a sacrilege. Those who saw her hunting in her true form were
struck with her arrow and joined the spirits of the woods.

For the fans of World of Warcraft - the choice of this name for our
daughter has nothing to do with this game!

- The constellation in the northern sky, also the smallest star
in this group. Meaning: little dragon.

According to one of the legends, all dragons turn into a star in this
constellation after they die. Draco was the last and youngest dragon
to join the sky.

For the fans of Harry Potter - the choice of this name has nothing to
do with Draco Malfoy! (although I'm waiting to be called to school
and be told he had a fight with Harry... bets I won't keep my face

Wednesday, 1 April 2009

World Autism Awareness Day - 2 April 2009

The purpose for this day is to raise
autism awareness within communities
and especially governments all over the

It is time for the local and global authorities to
recognise Autism in total of it's spectrum as
distinct from other conditions.

Due to the fact that the needs of autistic adults
and children are often not understood, they
suffer negligence and inappropriate social care.

According to the National Autistic Society, the
research suggests that autism costs UK £27.5
billion a year. This could be greatly reduced if
correct support was in place.

We need the local authorities to initiate urgent
planning, dedicated resources, and policy

Look out for events in your communities which
will be happening today.

Copy and add the badge to your blog for today

Please watch the video. I don't ask for your
money - that's someone else's responsibility.
I am asking for your understanding.