The Star and The Dragon

I have previously explained the meaning of my
children's names. There is another translation
for Cirwen - Beautiful Star. Indeed she is pretty.

To make a decision to have another child after
Cirwen's diagnosis was very difficult. During
the early years she needed so much attention,
support and help, I wasn't sure if I could cope
with a newborn as well. Up till the age of 4 she
was also incredibly attached just to me. Cirwen
loved her Dad, but didn't know how to bond with
two people in the same time. Similarly she had
trouble playing with more than one child. There
were still tantrums, not a lot of language and
settling at school, which meant my close contact
with teachers, trying to push for Special Needs
Statement.

In the end, after overcoming the fear of autism
itself, fear of having another child who might
have be more severely autistic - we did it.
Cirwen was eight years old when Draco joined
our small family. She was well settled then and
her awareness of others, bond with her Dad were
well established. She understood why the tiny
baby needed more attention and we also made
sure she didn't felt left out. She held her brother
the first time she saw him, she helped feeding
him once I moved to the bottle formula.

Draco is absolutely free of autism. Typical, lively
and mischievous boy. Since he loves his cuddles
and kisses he gets twice as much. For all lost
Cirwen's kisses. The only problem is, that now
I think he is incredibly easy to look after as he
develops on a typical level. He is two and a half
now, runs and climbs everywhere, feeds himself,
can count to twelve and he has already started
to build sentences. He also knows his manners.
With all that, when I compare him and Cirwen at
the same age we both, with my husband, think he
is a genius! In truth he is just a typical little boy.

Cirwen adores him and reckons he is the cutest boy
in the world. She is the only person who can make
him "belly laugh" just by pulling a face. In return
Draco is looking up to her and waits for her to come
back from school.

Draco is our little warrior - anything in his hand can
change into a sword and we hear lots of "high ya!"
during the day, next is his bucket full of tools and
then we have Handy Manny banging away with the
hammer. Although Cirwen was always a very "girly"
girl, she joins him in his adventures. She is very
careful, very protective and I can easily leave her
in a room with her brother without supervision.

I am sure now, that she has taught him to count, and
heard her asking Draco to say various words. She is
incredibly proud of all his little achievements.

They say, a big age gap between siblings may cause problems
in bonding. Not in this case. Little Dragon is looking up
to his Beautiful Star, who shines with love and care at
him. I hope it will stay like this, and one day the Little
Dragon will grow up to become the Star's warrior guardian.

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"?

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.

Starring:
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.

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.