Freak?

How often do we, ourselves see or listen to
someone and think: What a freak!

This would be because we do not agree with
their outrageous (to us) ideas, they look strange
or damn right scary (think extreme piercing and
body art). It took me many, many years to take
time before I judge somebody regardless of the
first impression and it proved not all of these
people are "freaks". They are different and there
usually is a reason or philosophy behind their
behaviour or image.

Cirwen often hears that word aimed at her from
children her age. And yes, she is different in so
many ways. The way she finds a conversation
boring, because it is just a small talk, because she
sees the world in black and white - there is no
space in her mind for "it's bad but it's good too".
Then come the difficulties related to her cognitive
problems (asks many questions in class, what to
do, what the question means, can't perform in
some subjects, like maths, as well as her peers).

The way she talks. When she is excited or needs
to explain something important to her, her mind
races ahead of her mouth and she has to start the
sentence sometimes three times in a row (never
changing the words she just said). Her views on
things like religion, love, life and death are very
strong. I think I have managed to teach her about
tolerance, however many of her friends cannot
accept and honour this tolerance to her. (Yes, I know,
us, the adults still fight for this comfort as well).

The hobbies and obsessions. Cirwen is "girly", very
gentle person, but not on the Barbie -pink way (as
you'd know from my earlier post - she went through
this stage). She did not enjoy The High School Musical
at all. She is more of anime, Doctor Who, Tim Burton
(Nightmare Before Christmas, Corpse Bride), rock
music fan. Her favourite actor is Jack Black... Not really
a typical eleven year old then.

Her raving imagination! She constantly tells stories,
draws, paints and sings, acts out her own stories or
films she watched. Creative - not too happy to follow
fashions, fads and trends.

Now comes her looks. Well, probably a bit of our fault.
As any child she wants to be like mum or dad and we
both are not the designer people - what's black is good,
bit gothy, bit biker friendly, also rock fans...
And so it would be hypocritical if we refused to get
Cirwen the clothes she wants to wear and feels good
in. She is a little emo/rocker.

Yes, she might seem odd comparing to her class mates.
My husband's favourite description of Cirwen is :
"Sometimes it's like having an eccentric aunt for the
daughter." You never know what she will come up
with next, she uses frases like "As a matter of fact...,
Well, actually..., or What a pity, never mind..." She
can be very vulnerable little girl, and next minute she
comes up with a theory you would expect a much older
person to say.

She is different, her mind is different, she looks slightly
different. Is she a freak? I don't think so. She has
taken a decision to manifest her personality. Why not?
Although she wants to fit in, there is a resistance to
conform and follow like a sheep. I have always cherished
the idea of individuality myself and sometimes also paid
the price. As much as I want my daughter to be happy,
fit in and have friends, I don't want it to happen at the
price of hiding her disability, personality and creativity.
It's a catch 22. With increased difficulties in making
friends, communication and perception of people, she is
taught how to interact and respond to others. Am I going
the right way encouraging individuality which in many
ways may alienate her even more?

Freak? Not to me, nor to those who bothered to know
her closer. Don't forget, she has a few very good friends.

Someone loves you

A few days ago have received a new award, which probably
means to me the most so far.

I started to write as an experiment. Thinking that
the main theme of my blog might not attract many
people who do not have anything to do with autism
and maybe few who find it and face similar problems.

I cannot believe the response I have from those who
follow me. Those who share my battles and those
who just realised they do not know much about this
invisible disability and wish to know and understand
more. I not only found "audience". I have found
friends. I have found people full of wisdom, poetry
and flare. I have found inspiration and encouragement.

The Love My Friends Award is given to those bloggers
who aspire, inspire and share the most beautiful of
human attributes: art, wisdom and friendship. It is
again coming from AlpHa Buttonpusher who I admire
right from the first post I have read.

Deliver this award to eight bloggers who must choose
eight more.

This is the list of those who I love:

Frazzled Working Mom
Riding The Short Bus
Random Crapola!
E_M_Y Rants
Jenn's Corner Table
Mim's Muddle
Paint brush
tuning

Since I still have problems with leaving the
comments, I ask all to visit those wonderful
bloggers and spread the word :-)

New look...

Thanks to AlpHa the Kreative Blogger Award Nominee
my blog looks all colourful and... oh so good!

Thank you, thank you AlpHa!

I've been gagged!

I do not know what is going on with my comments
posting. I have received some advice from
Vin (The Blog Doctor), followed it to the
letter and still, I can post a comment on 1
out of 5 days...

I'm angry, frustrated and gagged!
Thank you all for your patience and I
do apologise if I cannot answer or
comment on your blogs... I am there
though and silently read, sigh.

AlpHa, I have entered your vortex and
found wisdom and poetry. Love it!

Madame and Jane, thank you for your
support. It is indeed long and frustrating
process, but I have to hope it will come
to a positive end :-)

Secondary school

It is a hard time for everyone to change from
primary school to secondary. For someone
with autism it creates more fears and frustration.
As Cirwen is scared of changes and new things
in general she is very worried about the move.
On the other hand she also is looking forward
to it as she has been allocated a place in our
second choice of school which is the Visual and
Performance Arts Academy. On contrary to
common belief, she is very creative with
fantastic imagination and very good singing
voice. Maths and science is her weakness.

Unfortunately all her close friends will go to
different schools, therefore there is the issue
whether she will be able to make new friends.

I have had a meeting with the new school
SEN-Co (Special Education Needs Coordinator)
a couple of days ago. She was rather surprised
that Cirwen hasn't got the SEN Statement and
was never seen by the educational psychologist.
We had a good chat, where I clearly voiced my
concerns, Cirwen's weaknesses and strenghts,
and both mine and hers fears.

In conclusion, Cirwen will be able to visit the
Academy before the induction day on her own
later this month, to see the classes and facilities.
Then, in July there will be an induction day for
all newcomers, so we shall go and maybe meet
other children who will start with her.

From September Cirwen will be put on the School
Action Plus scheme, where she will be assessed by
the teachers and have some support in the weak
spots. She will be closely monitored, where the
SEN-Co mentioned possibility of applying for the
statement if needed.

There is an option of her being put into a small class
together with other children with learning difficulties.
This worried me a bit as I fear that it would put
an unnecessary label to her name and will make it more
difficult to interact with the rest of the children.

In the end it all seems positive and we will give it a go.
We'll see how it will work. If not, the only other
option is home schooling.

Education, education....

Education is immensly important for all
children, however those on the autistic spectrum
do need more help and different aproach to teaching.
Many autistic people are intelligent on the average
level or higher.

Those high functioning children with autistic spectrum
usually receive the Special Education Statement from
British Local Education Authority. This involves 2 years
of working to IEP - Individual Education Plan, psychological
assessment, educational psychologist's assessment, and
pediatrician's diagnosis. In Britain, children are diagnosed
rather late. Very rarely high functioning autism is recognised
in children below the age of three. Therefore, the statementing
process, starts usually in the nursery or reception class.

Cirwen started to see the pediatrician at the age of four and
the diagnosis of Autistic Spectrum Disorder was given at the
age of four and a half. This was half way through the reception
class term, so only then the EIP could be started.

At the time the focus was put on her speech development,
social skills, numeracy and literacy. Due to the fact that
she could put three words together as a sentence, it was
a challenge. By this time I gave up speaking Polish as her
autistic mind needed things to be called always by the same
word (even now when she goes to her Nanny who refers
to the piece of the bedding as "duvet" Cirwen doesn't know
what she's talking about as at home we call it a "quilt").
The targets were mostly met, and as long as there was a
progress the school was happy.

Cirwen has made contact with children and even made
a friend. The girl lived in the same building as us and
we walked to and from school together, which made it
even easier to tighten their friendship.

After a year of exercising the IEPs, speech therapy
and occupational therapy, The school SEN-Co (Special
Education Needs Coordinator) announced to me, that
Cirwen is doing very well and because her social skills
are almost typical, she still is not three years
behind her peers in literacy (she learned to read very
quickly), and there are no behavioural problems -
the school will be refused the SEN Statement from
LEA. However, Cirwen was still kept on school
records as a special needs child and benefited from
extra numeracy, literacy lessons, speech and
occupational therapy.

Some time later, I made an appointment with SEN-Co
again. Cirwen always failed on her spelling tests. Not
even one word out of ten was right. Until I had a good
look at one of the sheets she brought from school...
There were ten words, spelled perfectly but.. all of
them were written backwards! god instead of dog,
even esuoh instead of house! I asked if Cirwen might
be also dyslexic, but again without further tests, I was
told "noo, it's just a fase..! If it is it's a long one, as
Cirwen still writes a lot of letters backwards!

And so, we help her at home as much we can, as much
she can take. There are days when she comes back home
at four o'clock in the afternoon and doesn't even want
to talk about anything. Just wants to eat and relax with
her games or music. You can see she needs to be alone.

Now we are facing transition to a secondary school.
She is positive about it, although I silently am scared
for her. Will she fit in, will she adjust to new building,
people and routines? Will the kids eat her alive on
the very first day? I shall write more in my next post
what was said on my meeting with the new SEN-Co.