Obsessions

First of all I have to apologise for my silence. Dear
friends, I haven't vanished. I am still reading and
following, however for some strange reason I am
unable to post comments on your or my own blog(?).
Hopefully it will be fixed soon, once I find out what
happened.

Now to the topic.

Most if not all autistic people are obsessive. What
is the difference between a hobby and an obsession?
A hobby is something a person likes and does in
their spare time, a subject or activity of interest.
An obsession is when a hobby takes over the life.
An activity or subject which pushes away most of
the other aspects of life; study, work, conversation.
You can rationalise and see when you are able to
give your time to your hobby, it can wait until you
have done your "chores". You cannot do this with
an obsession. It has to be done. It's a need.

In many cases, obsession stays with the autistic
person forever. In some, like Cirwen, they change.
Cirwen started with Barbie doll. They were going
everywhere with her, they were displayed in a row
in her bedroom, and she obviously liked to have
the images on her clothes. With Barbie, came the
Disney Princesses and the colour pink. "Just like
a typical little girl" you'd say. Maybe, but then,
Cirwen would not wear anything but pink, her
bedroom was glowing pink with princess bedding
and curtains, even her plates had to be pink with
either barbie or a princess on it. She would not
wear trousers, because princesses didn't, although
I could negotiate, that Barbie does...

Cirwen new by heart the whole script for "Snow
White" and "Sleeping Beauty" films. She had to
watch them endlessly and act out all the scenes
taking parts of different characters. Most of our
conversations were based on the subject of pink,
dolls and castles. Later, she added fairies to her
world of pink. This carried on between the age
of 2 and 8. As much as it all sweet and magical,
sometimes I would love to change the subject to
something else, even Winnie the Poo (I still love
him), but it was impossible. Cirwen would ignore
any reference to a different subject suggested by
us or withdraw completely if we insisted on talking
about the topic she was not obsessed with.

After she turned 8, the pink started to fade away
slowly. With the move to the junior part of school,
she started to say she is "growing out of it". She
discovered rock music, and became more interested
in her Living Dead Dolls (which formerly were only
to scare away The Dark).

Within the next six months barbies and princesses
were given away to her friends younger sister, her
bedroom turned black last year, and gradually she
is who she is now. In her own words: "A gothic rocker
who smiles". ( In her literal thinking she thought that
goths are so depressed and unhappy that they never
smile). With all that came all the Tim Burton films,
Lenore, anime and YouTube. Especially YouTube
became a daily must to find the most weird gothic
cartoons, music and videos. She also plays game
consoles (e.g. Wii or Xbox). This has to be monitored
and timed as she is able to play 24/7 if not told off...
However, there are a few games she will play all
the time no matter how many times she has completed
them. This will be Fable and Fable II and Sims.

There are also books and comics. reading has always
been a big part of our life.

Lately Cirwen became interested in her Dad's hobby -
- Warhammer games. It's a great game, where you
build your own fantasy army, stick together and paint
your models. It is like chess with a bit of magic.
I personally do not try to change her obsessions or
stop her from doing them. There is always something
you can learn through play.

Barbie and princesses I used to teach her conversation,
interaction, and films helped to recognise emotions or
simple facial expressions.

Use of the computer teaches her keyboard skills, resource
finding, and as well as the games - hand eye coordination.

Warhammer battles have so many aspects; planning,
strategy, basic maths, again manual skills and it is
helping with interaction with others. She visit the Games
Workshop once a week, where she can have a battle or just
sit down, have a chat with staff and kids while painting her
models. We also have battles at home between her, us
and a few uncles.

There is now some variety in Cirwen's life and more subjects
to talk about. This is because we introduce new things slowly
and let her do this on her own terms. I know now what mood
she might be if she vanishes in her room in front of the laptop
or a console - that usually means she is tired and fed up with
people - she needs escape. She does that everyday after school.
It is a need, obsession, which gives her life comfort. Repetitive
action - familiar, predictable and in it's safety - relaxing.

I know of others with stranger obsessions. The boy obsessed
with drains, another writing letters , then dividing them in
groups, classical Thomas the Tank Engine, numbers etc.

Exams - all over

Three days of exams are over. Cirwen took science
and two papers in English. She was very worried as
she could not ask any questions if she could not
understand the task. Although she managed not to
panic and cry in class.

The first day she left school very tired. She was
rather withdrawn with this "I'm not exactly sure
where I am" look on her face. Cirwen was not
able to recall how many questions were in the test,
what questions she did not answer, or what they
actually were...

The same happened on the day two and three.
Cirwen likes English so she wasn't as worried about
these tests as about science , although again she
could not tell me what she wrote in the essay, or
she could only remember one topic from the reading
exercise. In the end, she said, that she is happy
with what she did.

What struck me, is that Cirwen said, she run out
of time each day, therefore she could not finish
any of the papers. Because she has difficulty to
understand the written questions or directions
it takes her longer to digest them and proceed
to the answer. Children with dyslexia have the
right to extension in time for their exams, pretty
much "by law". For some reason LEA and Special
Needs Coordinators do not think that this would
be beneficial for autistic children as well. WHY?

Anyway, it's all over and for the rest of the week
Cirwen will be in a small group of children and
the school Learning Mentor, while the rest will
sit math exam.

We felt we had to help Cirwen to come back to
the world each day and treat her a little. We
played numerous Warhammer (Cirwen's latest
obsession) battles in the evening. Her goblin army
beat the dwarfs mercilessly twice in a row!
Painting these little figures is very relaxing and
rewarding, so she quickly brightened up. A big
dollop of ice-cream and her favourite lychee fizzy
drink also did the trick.

On top of that, today she's off to the fun fair
and a sleep-over at her best friend's to celebrate
the end of the SATs.

Exams - stress, frustration and fear

Education is incredibly important for all the
children whether they are typical or with
special needs. Finding the right school is
never a stress free task.

The school Cirwen attends is the best in the area
and she loves going there. I have always been
very grateful for loads of support, help and
understanding she has there. Cirwen never was
offered the Special Education Needs Statement
as for this a child has to have developmental
delay in 3 areas (academic, social and physical) and
it should be on the level of 3 years behind their
peers.

While autism is a "learning difficulty" itself, it
still has to be assessed separately. Cirwen's ability
to socialise, lack of behavioural challenges and
mild physical problems were not enough to grant her
the statement.

Despite of this the school used their funding for speech
and language therapy, occupational therapy and
additional literacy and numeracy lessons. However
Cirwen is not a genius, she also is not thick. Due
to limited materials and training of teachers her
academic performance in maths is rather poor. As
many autistic people, Cirwen is a visual learner and
a "doer". Theory of maths goes past her ears and she
cannot comprehend either the question or the verbal
explanation. She gets very frustrated in class as
despite asking questions often it still is difficult to
understand what she is supposed to do.

This week is the SATs week. The nightmare for
Cirwen, who knows that this time she will not be
allowed to ask questions during the exam. Today
is science. She went to school happily, but on the
way she expressed her fear that she might not
understand the questions. My answer to that was,
"Don't worry, you are not failing or passing this test.
Do your best and read carefully. You are bright
so I know you'll figure it out - just don't panic."
She seemed reassured and brightened up and
skipped for the rest of the way.

She was worried the most about the maths test.
It was to our great relief to have found out, that
due to her attainment in maths and the stress
levels it would cause, Cirwen will not sit the test.
She will be assessed by the teacher on the base
of her day to day work. Again I am grateful to
the school teachers involved for this decision.

Cirwen will sit English tomorrow and on Wednesday.
Hopefully, she will do well. I am sure, she will try
her best and both her Dad and me will do what it
takes to help her relax afterwards.

Tantrums, Chopin and art

I have been again honoured by Christine at
Now What, who tagged my blog as The One
this week. Thank you, my friend, you have
been with me from the beginning and your
kind words have given me so much
encouragement!

I'd like now move back in my story to the
the time when Cirwen was three years old.
At this stage, she could put maybe three words
together, therefore she had a lot of trouble to
explain what she thought, felt or just desired.
Imagine her sitting in the middle of a room
full of toys, pointing at a general direction, saying
"I want this one"
And there was me, trying to guess what was it,
ten, fifteen, twenty minutes. Sometimes I was
lucky and managed to find the object. Another
time, it finished with a disaster - I could not
figure it out - and we had a tantrum. Full on, ear
splitting scream, inconsolable, hitting the wall,
biting her hands. I felt awful. Helpless and guilty
of failing to come to her aid.

There was also a period in Cirwen's life when I
dreaded her waking up from the afternoon nap.
She would wake up screaming and although we
brought her to our living room, there was nothing
what could cal, her down. We couldn't touch her,
talk to her, no toys would catch her attention. For
half an hour my child was screaming , would not let us
hug her, to console, to make her safe and fine again.
The reason for these tantrums are the mystery to
me till today. All I can think of is, she might have
had a bad dream and didn't know what it was, or
didn't know how to explain why she was upset.

The breakthrough came with the start of the
pre-school. it was a lovely, newly established
venue, with only ten children attending for
three hours a day. The pre-school was run by
local artists. Absolutely fantastic people.
Barbara, the owner, has taken Cirwen under
her wing and taught us both a lot. She noticed
that Cirwen responds very well to music. She
loves to dance and sing. After a while, the best
way to stop a tantrum was to put on a CD with
anything by Chopin. She would immediately stop
screaming, sit down or just stand in a spot and
listen. I obviously adapted this technique at home.

As the place was run by an artist, children worked
a lot with their hands. Made their own toys out of
papier mache, decorated the hole room transforming
it into a chronicle of little piggies travel around the
world. Cirwen loved painting before she started
going there, so she thrived.

One day, children were painting their pictures
while listening to classical music. I think it was
Vivaldi. when I came to pick Cirwen up both
teachers were very excited to show me my girl's
work. I was told she painted with brushes in both
her hands, very concentrated on the tones of music.
If the tones were low, her hands were moving down,
and up with the higher tones. It looked like a register
of sounds. I was also told that every so often, Cirwen
would step away from the easel, look at the picture,
correct something and carry on painting. Something,
what both of the artists were taught to do while in the
college. They were both amazed how she new to do
this instinctively. The painting ended up on the wall
for the rest of the term and at the end I had to fight
with the owner for it, as she dearly wanted to keep it!

Cirwen carries on drawing and painting, although
now she's older she indulges in more fashionable
music. She loves rock and Irish folk. It still provides
her with it's healing properties. The tantrums stopped
gradually with her ability to talk. She still finds it
difficult to express or explain how she feels, but I
we are patient to listen. Sometimes she doesn't want
to talk about it and we leave her to her music and
art. Whether it is a comic strip, or illustrated story
about her friends, she can show us what happened
in her own way.

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.