Tuesday, 31 March 2009

Do you have "an autistic bone" in you?

This post has been inspired by Takeaway Pizza's comment on
one of my previous blogs.

There are some aspects of autism, I'm sure, we can all relate to.
Some of us are generally shy and don't find it easy to get along
with other people, make friends or find a quick retort to a
cheeky comment.

I personally do not like shopping on Saturdays. It's too crowdy,
it's difficult to get to where you want and I definitely go into
"trolley rage" in my local supermarket when people just stop
in front of me and I can't move. There are also situations
where I feel overwhelmed. It can be just a bunch of my friends
having two conversations in the same time, both trying to get
me involved, and I find it difficult to concentrate on anything
what's being said.

My husband cannot sleep in a hotel for a few first nights because
the bed is different.

I don't think you have to be autistic to become a collector or
become slightly obsessed with a subject. This is called a "hobby
or a "calling".

So what's a difference? Think about all these little quirks of
yours or your close and multiple the intensity by ... let's say
ten. I don't like wool because it's itchy. How itchy it must be
for my daughter whose skin is hypersensitive? No wonder
she could go into a tantrum when she was in this sort of
discomfort but could not explain it to me, because she did
not know the words to describe it.

There is another important aspect of autism. Because of
different neurological "wiring" of the brain people with
autism perceive human beings on the same level as objects.
This is where the problem with connecting and bonding takes
its roots. This is also why very often objects collected are
more important (seemingly) than the family members.

A lot of social interaction is based on reading facial
expressions. My daughter doesn't posses this ability.
Very often, when I do not smile while talking to her
she has to make sure how I feel and asks if I am happy.
Sarcasm, or playful "telling her off" isn't so clear as well.
When her friends are instantly laughing, she asks: "Are
you angry?" Both my husband and I have to make sure
that our faces are clearly reflecting our mood.

Literal thinking is another aspect. When Cirwen first
went to school I wasn't too sure how she will deal with
usual children teasing. No one could actually upset her
by saying "you're stupid!" No, her answer to any
kind of insult like this was: "I'm not stupid, I'm a Cirwen!"
Well, she grew out of it now and she gets upset, but she
doesn't know any more how to answer.

The crowdy place for an autistic person means not
only the annoyance. People bumping into you all
the time, inability to get straight to the desired object
and the noise is disorienting, sensory stimuli are
too many to cause a melt down.

Some autistic people are very sensitive to colours.
I have spoken to one of mums on a training we both
took. Her daughter suddenly stopped spending as
much time in their newly painted living room. After
some time she explained that terracotta (the colour on
the walls) "was scratching her brain". I don't like
some colours, but they never affect me so strongly...

Again I think it might be a good book if I was an
expert. I am not. I'm only a mum and although
I have not so many friends, I don't fit everywhere,
and some call me eccentric - I am not autistic.
I do have common sense and instinctively know
what to do if I get lost in a new place. My
daughter, however... She needs to be taught that
instead of panicking or running blindly forward, she should
ask someone for directions. Often she needs to write
down what to ask...

So, if you have "an autistic bone" in you, is it easy to
admit to it? Maybe it will be easier to accept or
understand those who are autistic "to the bone"?

Saturday, 28 March 2009

The Black Baloon - Review

I have found this film last night on my magic box "on demand" list
and couldn't help but write about it.

"The Black Balloon" was released in 2008, directed by Australian
Elissa Down.

Rhys Wakefield
Luke Ford
Toni Collette
Erik Thomson
Gemma Ward and others

"The Black Balloon" is a drama, based in 1980s Australia. The
family is moving to a new place as the father is in the army. Pregnant
mother, two teenage sons. Thomas is your usual average teenager
facing getting used to another new school, Charlie is severely
autistic and with ADD.

The film touches so many aspects of living and caring for the
autistic member of the family I will have to struggle to make this
post shorter than a book.

Charlie's age is not exactly specified in the film, he could be
between 17 and 20 years old. He is non verbal, communicating
through sign language and "da!" is the answer to almost everything.
His brother Thomas is 16.

You can see how the whole family life is arranged around Charlie's
needs. He is a "runner" therefore the front door is always locked,
some cupboards have padlocks, there is a star chart to reward
Charlie for good behaviour, there are also labels on objects in
his room. They all try to make his life as happy and comfortable
as possible but it is not easy. We observe the viciousness of
neighbourhood kids - the teasing of a "spastic". The arrogance of
the neighbour. Charlie has a morning ritual, when he sits on the
garden path humming and rhythmically banging the wooden spoon.
The neighbour cruelly shouts for him to shut up and squirts him
with a hose when he doesn't respond. Later she calls social services
to complain about the noise and fights.

The most important subject of this film, however, is Thomas's
relationship with Charlie. He would like to have the normal
life of a teenager. But, he is embarrassed by his brother. When
a girl from school comes to visit for the first time he locks Charlie
in his room. That turns into a disaster as Charlie decides to do
a poo and smears it all over his carpet and body.,

The frustration reaches it's top when Charlie ruins Thomas's
birthday party. He beats his brother up, smashes his game
console and sobs late at night because it's not fair. No, it's
not fair says his mother, the family is all Charlie will ever have.
He will not ever be able to do what Thomas can and is doing
now. He will live with them all his life, closed in his own world.
Thomas feels not only sorry for himself, but there is also the guilt.
Guilt for hoping one day he will wake up and Charlie will be
normal, guilty for being so angry and ashamed.

And then there is Charlie's big day. Charlie is going to be part
of a school performance where he will be doing a monkey
dance. On the day however, his partner has a breakdown
on the stage and refuses to dance. Charlie is not happy at
all and suddenly we see Thomas joining him to perform,
dancing in the monkey suit...

You'll be sad, moved and you'll lough. The only film
I've seen finishing with the words "You've just p***ed
on my leg."

Luke Ford in my opinion should receive an Oscar for
his performace as Charlie.

Wednesday, 25 March 2009

Andy Warhol - the famous eccentric

We all know Andy Warhol and his great Popart images.
there is a reason I'd like to talk about him a little.

There are many legends about him and his strange ways.
Some time ago I stumbled upon a few articles suggesting
that Andy Warhol might have had Asperger Syndrome...
This type of autism was discribed by an Austrian
psychologist - Dr Asperger, in 1940s, however the
medical world didn't recognise it till late 1980s. Andy
Warhol died in 1987 and all what will be now said is
only a theory based on remaining recordings and memories
of those who new him personally.

Dr Judith Gould, the director of Elliot House, which is
the British diagnostic centre for autism, said in her
interview with Guardian that Andy almost certainly
had Asperger Syndrome due to the fact that it is
often associated with artistic genious.

Proffessor Michael Fitzgerald from Dublin Trinity
College also studied the great artist. He said:
"People diagnosed with Asperger's Syndrome are
generally hyper-focused.... tend to see things from detail
to global rather than looking at the bigger picture and
work working backwords, as most people do."

The "remote" diagnosis, would explain Andy's behaviour
seen by those who knew him as just eccentric or "taking
a piss".

He was an avid collector, but he never even opened the
numerous boxes stacked in his house. He had an awkward
way of talking to people and never looked them in the eyes.
His frequent use of camera, just to look at people without
actually taking a picture, could have been the way to hide
and distance himself from the crowd and stares.

The fascination with objects and displaying them in the
repetitive pattern could also be seen as the autistic trait.
The numerous images of Marilyn Monroe and the tin of
Campbell Tomato Soup are perfect examples.

Obsession, social awkwardness, search for patterns - to me
it is fitting very well.

What really has made me agree to the theory is what Andy
said about himself:
"I'm the type who'd like to sit home and watch every party
I'm invited to on a monitor in my bedroom."

How typical for an autistic person - to be involved but from
far away where it's safe, you don't have to interact and
where you can control the sensory stimulae.

I'll leave the rest to you. See if you can agree with this theory.

Sunday, 22 March 2009

Mother's Day

I used to hate Mother's Day.
Just because I was jealous of the other kids. They
got to do fun stuff with mums. I got to go to a smelly
hospital and later to the graveyard to light the candles.
And then feel sorry for myself. I'm not looking for
pity. It's just how it was and obviously I got over it.
That's life.

For a long time I thought I will never make the
decision to have any kids at all, because I thought I
didn't have enough of an example to know what to do.
Silly isn't it? I realise now that all I needed to know is
what I could remember of my mother. The kindness,
the warmth, the smile and the sense of safety.

I had a lovely Mother's Day today. Breakfast served
by Cirwen, my lovely husband and my son. They did
not allowed me to get dressed at all, however I won
the battle in the early afternoon. (Somehow, sitting
around in a dressing gown makes me feel I'm ill...)

Generally I was not allowed to do anything (well,
apart from the smelly nappy... obviously), so I had
a lot of time to reflect. I'm happy. Besides my girl's
difficulties - I have two unique beautiful children
who love me unconditionally. (Providing they have
enough chocolate :-) just like me).

The first 4 years of bringing Cirwen up was often
difficult, but this was because I didn't know who
she really was. Unwittingly I exposed her to the
sensory overload while dragging her shopping
in a busy supermarket or a mall on Saturdays,
put clothes on her, which might have irritated her
etc. She couldn't tell me this, because she didn't
know how. She was also very attached to me. To
the point that I couldn't leave the room without
her, unless she slept. Not because her Dad was
not around. He spent an equal amount of time
with her, however she could not bond with two
people in the same time. Dad was great for a quick
rough and tumble, fun stuff, but the rest was mum.

I could not think of having another child at the
time as Cirwen needed so much of my attention.
Then after the diagnosis there was the fear factor.
What if another one will be born with more severe
autism? Could we deal with it?

Although we both initially wanted more than one
child, and once we found out how to interact with
Cirwen there was this niggling fear.

Finally, Cirwen became a very eloquent girl,
settled down at school, found friends and we
realised it's not all so bad. We "risked" it.

Draco, was born eight years after Cirwen.
Absolutely typical boy. His sister - was all
over the moon and it was him who she first
gave a kiss. It was him who she first told
"I love you". From here on "I cute you" have
disappeared from her vocabulary...

I think the tiny little thing she held in her arms
as soon as she was brought (early) from school
made her realise, that love doesn't have to be
so invasive and it is safe to say it.

I was watching them today playing. Cirwen is
Draco's hero. She makes a face and he is in stitches!
She has more patience for this buoyant, mis-
chievious two year old than any of us.
Couldn't do any better.

Maybe it is a bit selfishly cruel, but now I know
that when we're gone she will have someone to
look out for her. Her little brother.

Thursday, 19 March 2009

What a beautiful day!

I had such a beautiful day! The sun was shining and it smelled with coming
spring... My daughter took another tiny step towards independence. I sat
in my garden and breathed the waking life... everything's going to be fine...
today is perfect...

And then I received the news about the Sisterhood Award for which I do
thank you my Non-Imaginary friend. I do not deserve it. Can this day
get any better? No it doesn't have to.

I am now passing this award to those who touched me with their talent,
and brightened my days. Welcome to the Sisterhood.

This is how it works:
1. Put the logo on your blog or post.
2. Nominate at least 5 blogs which show great ATTITUDE and/or GRATITUDE.
3. Be sure to link to your nominees within your post.
4. Let them know that they have received this award by commenting on their blog.
5. Share the love and link this post to the person from whom you received your award.

Read and enjoy

Wednesday, 18 March 2009

How Goth culture helped my autistic girl

Thank you all so much for all your comments and friendship (Jenn,
your comment box did not work for me...). It has been a great
encouragement to write again.

What I'd like to explain today is that yes, autism is a lifelong
disability and there are hard and frustrating times. But in my
family we can also laugh about it. You just cannot help when
it comes to some situations.

Cirwen went through a very long period of having nightmares
and night tremors every night. She could only tell us that she
was scared of "The Dark". "The Dark" however, was not the
darkness as such, because she was happy to play in the dark
room. I think it was to do with the fact that at the time we
lived between two pubs and unfortunately not the best area,
so she could hear the arguments and fights in the street.
Therefore to me "The Dark" was a personalisation of violence.

One day in town, we visited a shop with comics, collectibles
and such lovely stuff. There, Cirwen saw her first Dead Doll.
She was very fond of a little doll and begged us to buy it for her.
I was rather reluctant since, as much as I liked them too, I
wasn't sure if it was appropriate. I gave in, when she told me,
she needed her own monster to scare away The Dark. Well, I was
desperate to have at least one uninterrupted night so we bought
the ghostly doll with a noose around her neck... Guess what?
Cirwen slept all night for the whole month despite the noise

Not long later we had to visit the psychologist for an assess-
ment and Cirwen had to talk about The Dark and even drew
a picture. The psychologist listened to the story about the
dead doll, as we were asked how we dealt with it. He politely
did not comment... But his face was a picture!

I should also point out that at the time Cirwen was obsessed
with Disney Princesses and did not leave a house if not dressed
in pink from top to toes.

The collection grew after a while once she decided that the first
one "needed help, because The Dark got used to it"...
She is now 11 years old and turning into a little Emo Princess...

Autistic people take everything very literally. Especially kids.
You do have to avoid the ambiguous situations or language like :
"Come on! Spill the beans!" because most likely , like my girl,
you'll they'll answer you "but I don't have any beans!"

One day, when Cirwen was about 6, she saw a man with a dog
while she was crossing the park on the way to school. She ran
ahead of her dad to watch the dog. The man seemed to call his
dog several times and when it didn't move he said something
sharply, picked up the pooch and walked off. Cirwen ran back
very excited and shouted "Dad! Dad! Do you know what this
dog's name is? It's called F...k it! That's a really good name -
- F...k it isn't it?..." and she was going on and on ( just to say
the word probably) until her dad explained to her , what
actually happened and that it wasn't the dog's name.
My poor husband almost chewed off his lip not to laugh.

My advice for today: don't suppress obsessions - make them
work for you. Give in sometimes to seemingly outrageous
requests and they might solve a problem.

We are all strong, just don't realise it until we must be.

Monday, 16 March 2009

About a girl who didn't like love

Once upon a time a little girl was born. She was
tiny and so cute we both loved her immediately.
We gave her a name - Cirwen. Her Dad gave her
the first kiss and she didn't close her eyes until
he left the hospital, as if to make sure he doesn't
do it again.

She grew a little and with every kiss given to her by
anyone came a disapproving grunt . She was still a baby,
so I thought not much of that.

Cirwen became a toddler. This time with every kiss
came a scream and I knew then that my little girl
does not like to be kissed. Hugs came more easily,
but it was on her own conditions. She had to want
to be so close to someone. If I demanded a hug she
would come to me, but her little body would become
stiff, rigid and she would sigh in relief once I let go.

She grew a little more and started to use some words.
Not many. As any other mother I could not stop the
so natural impulse to show her my affection. This time
in her limited vocabulary she shouted "No kisses! No love!"
between the tantrums and screams. And ... there I was won-
dering. Why my little girl cannot accept my love? What am
I doing wrong? I looked at her and, now I know, there were
the obvious signs: walking on tip toes, delayed speech,
no eye contact...

I did ask my health visitor about the fact that Cirwen was
almost 3 and could not put three words together. I was
dismissed with the very thin theory, that Cirwen is brought
up in a bilingual home (I spoke Polish, Dad spoke English).
I wasn't convinced, but what can you do, when they treat
you like a hysterical first time mum?

And so, I didn't kiss, I didn't say "I love you". Cirwen was
happier - I screamed silently. It hurt so much not be able
to even voice what I felt for my own child.

Cirwen finally went to a wonderful pre-school with a wonderful
team of teachers, and thanks to them we received the diagnosis
- ASD (Autistic Spectrum Disorder). It all started to make sense
from here. I read, spoke to other parents and read again. I have
started to speak English only at home and speech improved
very quickly.

Cirwen became very fond of certain words and one of them
was "cute". Since she didn't like kissing, as it was an action
invading her personal space so important to an autistic person,
she also didn't like the word "love". That's because it meant
the same as kissing. It didn't mean she didn't love us. She
invented another way to express her feelings; and so , till she
was about seven years old she said "I cute you!" We "cuted
her" too. Another year and she accepted the first kiss from
me "but not on the skin - on the hair". That was enough for
both her Dad and me. I cried. My girl loved me - I was not
a bad mother. Cirwen was only learning it is safe to be close
to another person.

Thursday, 12 March 2009

Autism - Myth and Reality

Autism is a very complex condition.  The spectrum covers
a wide range of neurological and developmental impairment,
therefore it is rather difficult to give a short defin-
ition. It is an invisible disability, because autistic
people do not look any different than the rest of us, and
often can communicate pretty well. These facts are the
reason why raising awareness of autism is so difficult
and why there are still many myths within the society.
I am tired of explaining my daughter's "excentrism".
Therefore I have compiled a 10 most common

-It's the parents' fault that their child is autistic
If you mean the genetic data then you can blame the
grandparents too. It is a genetic disorder. Bad
parenting or too much television and gaming is not
a factor.

-MMR vaccine causes autism
There is no straight answer to this statement as there
is no scientific proof against or pro this theory.
The research is still undergoing. From my own
experience, my daughter was born autistic,
my younger child had MMR vaccine and has no signs of

- All autistic people are maths and art savants
No. They do exist, however "Rainman" is not a norm.
Large number of people with autism have the average
or above average IQ and as long as they are interested
in the subject they exceed in it with some exceptions.

-All autistic people are thick and can't talk
No. People affected with the most severe end of the
autistic spectrum are non verbal, however their IQ
can still be very high. There is a large number of
autistic people who are very eloquent eg. lecturers,
lawyers, writers, actors.

-All are violent or have behavioural problems
No. An autistic person needs routine and often
(please note "often" not "always") is hyper-
sensitive to sounds, colours, touch, smells etc.
Therefore in the situation of unpredicted change
of routine or where there are too many, or too
strong sensory stimulae they may become upset
and panic. The screaming, running or pushing away
a helping hand may be the only way to express their
discomfort. It is very important to remember that
autistic people are often uncomfortable when touched
by a stranger or even a member of family, as they
find it threatening.

-They haven't got a sense of humour
Actually they do, although usually they have
a problem understanding innuendos and word games.
Autistic people understand speech very literally,
therefore a joke based on the multiple meaning
of the words or expressions might go right over
their heads.

-They have no imagination
Usually it happens in people with the form of
autism called the Asperger's Syndrome, but you
probably will find a few exceptions from the
rule as well. Many have a great imagination.
Children with autism are often known to lose
the difference between reality and their
imaginative world.

-They can't live independently
That depends on severity of impairments,
many of autistic people are able to become

-They are unemployable
Most ridiculous. Autistic people are
obsessive and like their routine, therefore
they are experts in their chosen subject.
The work place usually provides employees
with predictable routines and changes
are announced well in advance.

-They can't build relationships
Well, again it all depends on personality,
severity of communication problems etc.,
however I do know some who are happily married
with children. Remember that some so called
"normal", (although I prefer the term "typical"),
people stay single or face relationships

-You can cure autism
If you think that you can rewire the brain like
they did in your house, you're in the science-fiction
area at the moment. Autism is a lifelong neurological
condition. All you can do is teach your child social
skills, help them understand people's behaviour
and the reason for it, and hope they will manage
when you die.