Coping with emotions

It's been busy still in my Bristolian world.
I have had a very fruitful, so far, meeting with
Cirwen's teachers.

They have expressed a lot of praises. Not only
problems. Cirwen has a very strong personality.
She knows who she is and what she wants. She
also does express her individuality in many ways.
One of the teachers pointed out that this usually
happens with children in years 9 -11, around the
age of 14 -16. In this way my girl appears more
mature. This is what they are drawn to. She may
be interesting but also intimidating, which leads
to friendship or teasing.

It is all understandable, however Cirwen has lost
the ability to judge the behaviour of others towards
her. Any kind of comment or question regarding
her looks or character, she sees as attack and the
act of bullying.

Her own behaviour became erratic. She goes to
school in a very defensive mood bordering paranoia.
She is unable to confront teasing in a calm, rational
manner. A lot of the times she bursts into tears and
leaves the classroom.

Teachers I spoke to admitted there were a few bullying
incidents which have been dealt with and taken very
seriously. Most of the time, however, these are the
cases of almost harmless remarks or bickering. Any
other person would be able to ignore or brush off such
things, yet Cirwen cannot.

Her need to be accepted, fear of confrontation, and
slowly degrading self confidence are overwhelming.
As any autistic person, she finds it difficult to cope
with strong emotions. At this point, she can't cope at
all. Tears appear in her eyes when I ask her to tidy
up her room as she is scared I will tell her off (where
there is no intention from me to do so). Instead of
anticipating something good, she anticipates the worst.

I do not know yet how we will deal with it. At the
moment, when we watch her programs I try to point
and discuss with Cirwen the characters' behaviour
in difficult situations. I'm looking for social stories
as well.

At school she will have a diary to write down her
experiences everyday. Once a week one of the
teachers will read it with her and try to help Cirwen
see the difference between serious bullying and
easy to deal with teasing. Since Cirwen's "specialty"
are words, this should be enjoyable, but also could
help her in making a better judgement of events.

I am still looking for advice and resources. It is
going to be a long journey and time consuming.
But I know we will find a way. We always do...

It's a jungle out there...

I haven't been around as much as would like to.
I have read my blogs I follow, but didn't have
enough time to comment.

Little Dragon just started to go to a nursery for
two and a half hours a day. In the afternoon, so
my day is broken up into short intervals. He is
loving it and first day was without a drama. Just
a simple "Bye mum!". Completely different from
his sister, who sent me on a right guilt trip with
a proper scream, holding to my leg till I ran in
shame.

And now again, although without the dramas, I
feel guilty. I feel guilty for having to pretend it's
all going to be fine soon. But I don't know if it will
be fine.

Cirwen has been bullied at school and after school
on the way to the bus stop. One day, during a lunch
break, a group of kids through plastic bottles and
stones at her. Nothing actually hit her, but she was
upset and scared. She is constantly pushed to the end
of the queue at lunch, so she is late for lessons.
Another day she called me in tears, as one boy through
a stone after her with insults, and threatened to beat
her up. Yesterday she got into a fight with another girl.

These incidents have been reported to the headmistress
and some steps have been taken. Cirwen will attend
a lunch club, where they have a separate room to eat
and hang during breaks. She has an assigned "buddy",
an older girl who will help her resolve such situations.

It's all good, but is it a right course of action? The school
separated the victims of bulling. Yet I haven't heard what
they going to do with the bullies. Shouldn't those hooligans
be separated from the healthy minded kids?!

This way, the school created a group of children, who now
will be marked as victims. A easy target. They might have
as well stick a sign on their heads saying "hit me!".

Some of the bullying goes after the children leave the premises.
Obviously, there is nothing teachers can do about it. My hands
however, are tied too. If i come and pick her up everyday, she'll
gain another label of a "baby", "sissy" or whatever they call it now.
I have to keep sending her to school and just hope she will be far
away from those she knows are nasty.

She puts her brave little face on and she goes to school. Because
she likes it, she likes the teachers and she likes her new friends
she made. Yet, I can see, there is a little bit of fear, of what bad
might happen as well. Although, both my husband and myself
told her to stand up and don't wait for the first punch any more.
No one likes to be hit. Even bullies.

We'll see. The lunch club and the "buddy" have just been
introduced on Monday. We'll see how it will affect her life.

We'll see. Yet, I still feel guilty. For choosing this school,
(although others wouldn't be any better), for my determination,
to teach Cirwen live independently, for saying it's going to be
better, for telling her now to fight for herself even with fists.

For not telling her earlier - it's a jungle out there...

Back on track

Thank you all for your concern and encouraging
comments. It means a lot to me, to know that from
a far someone cares.

Cirwen recovered over the weekend after the incident
and decided to travel to school on her own following
Monday. She is very cautious and so far there was no
problems on the road. She's happy and confident again.

Yesterday, however, something happened out of ordinary
and she panicked. She went to the bus stop as usual. She
was on time, yet two buses didn't stop. (Here's the public
transport in UK... it does happen a lot. Often for no reason,
sometimes, because the bus is full).
Cirwen called me panicking, that she will be late and sent
to the "duty room", which apparently is horrible. She
couldn't understand why it happened, she thought that one
of the drivers "glared at her angrily". She was a mess.
It took me a good few minutes to explain to her, that she
still had to wait for another bus, which WOULD stop, that
these things happen and we can't really help it. I also
promised her I would call the school and explain why she
was late. She calmed down and agreed she would take the
next bus and walk the rest of the way as fast as she could.
As a result, Cirwen stood on that bus stop for 20 minutes...
and still was at school on time. She called again with relief
to let me know.

Such a small change of routine. Unpredictable incident.
I knew it happens, yet I forgot to warn her that British
drivers sometimes miss a stop, make mistakes or just
cannot take another person on board.

For me, something like this is just another annoying fact
of life. For Cirwen, it was confusion and fear. We both learn
from situations like that.

Cirwen knows, she can always call me for advice. I will have
to consider all the possible odds, to prepare her for anything
what can happen when she will start to venture further into the world.
That's a lot to predict. I won't be able to warn her of everything.
I guess, time will show. Many, many panicky calls to come...

... And the fall

I spoke too soon. I have received a call from
Cirwen this afternoon. She was hit by a car
while crossing the road with her two friends.

The driver "didn't see them running..."
He didn't bother to wait for me to get there
as well.

Cirwen was hit in a leg, but so far not even a bruise.
Luckily, the car was not moving fast and stopped
in time just about clipping her side.

She was scared, shocked, and trembling when
I finally got there. Her friends waited with her.
All they could say, the driver was acting strange
and said he was a police worker. I don't think
he was telling the truth, otherwise, he would stay
to confront me. If he didn't drive fast, how come
he didn't see the three girls?!

All I know now, I have a few more white hairs
on my head, and many, many months of work
with Cirwen on independence, travelling to
school and all the rest might have gone to waste.
We'll see. She has weekend to get over it, but
today she asked if I could come with her on Monday.
All that, because of one dodgy driver...

Success!

I am soo proud!
I expected to accompany Cirwen to and from school
at least till the end of this month. How wrong I was!

We are just two weeks into the school year and my
brave girl has already come back home on her own
twice.

Yesterday, she asked if she could go to school alone.
I went through the landmarks, armed her in her
mobile phone in case of emergency ... armed myself
in patience ... and off she went.

It was the longest few hours of the morning ever.
Around 9.30am I stopped worrying. She didn't call
me in distress, and the school didn't call me to ask
why she didn't attend the lessons. Guessed then she'd
made it.

I realise now, that I should give Cirwen more credit
than I usually do. She is capable of so much more
than I let her. I suppose because of Cirwen's autistic
nature, my judgement is often biased. Based not only
on experience first hand, but also other parents' stories
I fear. I became overprotective and maybe create
the atmosphere, where she feels threatened by the
world more than she should?

It is so hard though, to find the golden middle. To find
the point where common sense and healthy parenting
do not cross the boundary towards crippling love, putting
the child in the glass jar. Like The Little Prince, I have to
let my Rose grow no matter the weather. She'll survive.

Busy, nervous and excited

It's been a busy several days.
Preparation to the new school year in the new
school.

Shoes, uniform, accessories... shopping, planning
and my nervousness, Cirwen's excitement.
Phew!

She started school on the 3rd of September, walked
proudly in her black school blazer, white shirt and
purple tie. God, she looked so grown up!

It's been a few days since the start. She is loving
her new school, all they do even the homework
given on their first day.

I am less and less nervous and stressed. Although
it's just the beginning and we have to get used to
travel by public bus.

After her induction days and these few recent trips,
we play the game on the bus. She has to tell me where
to get off or where we are, because I can't remember.
This way she learns to look for landmarks to navigate
her way. She now is confident on the way back, as
it is easy to spot remarkable building of the local pub.
However, she still has difficulty with the way to school.
Unfortunately, the bus stop is in the residential area,
where houses are pretty much all the same... She has to
remember which way and how many turns the bus does
before the stop. I hope it will be good few weeks, before
she gets the drift. Till then, I'm with her.

Social skills

I always perceived social skills as something
partly learned and partly innate. Depending
on the personality we make friends more or
less easily, yet we do know instinctively how
to make a conversation whether it is about
our interests or weather.

People with autism are born without this innate
ability to socialise. Because a lot of them can't
see the difference between people and objects,
they don't have the urge to socialise, or need to
bond.

Before Cirwen was diagnosed with ASD, I found
it very strange, that she would babble more to
her dolls than me. She bonded with me very
strongly, yet she would not allow to be left alone
with her father. He spent the same amount of
time with her as me, he was good for a quick game
of rough and tumble or sharing his food, but only
when I was present. It was difficult for both of us.
My husband hurt when she wouldn't come for a hug
to him, or screamed uncontrollably until I came back
from a corner shop. I could not leave home without
Cirwen unless she slept. At some point it was so bad,
that she sat on my lap when I was in the toilet....

We didn't know why and we didn't know how to
deal with it. Then she started a pre-school for
three hours a day and slowly, but not without
initial screams and tantrums, she learned to let
go of me. She engaged in play with other children,
although most of the time she would rather play
alongside them.

During snack times, she preferred to sit in a corner
on her own rather, than at the table with the others.
The pre-school teacher was the one, who picked up
the signs and filed for assessment.

The diagnosis came a year later when Cirwen was
just over 4 years old. From here things went
easier for us, as we found out the reasons and looked
for solutions.

At school, Cirwen quickly made friends with a girl
from the neighbourhood. Yet, when we invited
another girl to play, she became a bit irritated.
I noticed, she could play with only one girl at a time.
Having both of them confused her and she didn't
know how to divide her attention to two girls
in the same time.

When she became more vocal, we started to teach
her how to have a conversation and keep it on track.
She had to be taught, that she has to give
someone a chance to answer her question, or to voice
their opinion. We had to explain to her, that she needs
to keep on topic if the other person is interested in
pursuing it. Cirwen had to learn to let others talk
about things they are interested, even though it's
not her favourite topic. Taking turns and learning
not to interrupt others was the most difficult for
her to take in.

Autistic mind is very self absorbed, therefore
consideration of others is not an innate need or
ability.

Now, Cirwen is able to converse, yet still finds
it difficult to have a small talk and to wait her
turn to join a conversation. As she once said:
"What's the point of talking about the weather?
Everyone can see if it's raining or not!"

She is now strongly bonded with her father and
is making up for the lost time, becoming the
"Daddy's girl".

Cirwen has learned to interact with larger group of
children as well, which makes her social life much
easier. There are still many things she needs to
learn about people, but I'm taking it slowly, as the
issues arise. Theory is not her strongest thing as
well.

Hypersensitivity

I have mentioned earlier that the cause of
many problems for people with autism is
hypersensitivity. What is it? In simple words,
one or combination of senses is doing overtime.
This can cause not only allergic reactions, but
also behavioural and psychological problems.

There are many examples. I have heard of
a girl who could not stand certain colours. Her
parents redecorated the lounge and painted it
terracotta. The girl could not stand sitting there,
because as she said: "the colour was scratching
her brain".

Cirwen is hypersensitive to certain sounds and
touch, maybe taste (last is still not confirmed).

Low,humming and very high pitched sounds are
seriously hurting her. She gets very upset, and
often says they are "giving her a headache".

Touch. She rarely wears jeans. The fabric is usually
too stiff, or the trousers are too tight, therefore
not comfortable. Most of her tops, have their labels
cut off because they are irritating. Cirwen wears
only cotton and other soft fabrics, where the clothes
are not skin tight as she finds them very uncomfortable,
itchy, restrictive.

Taste, I suspect, that she might have heightened sense
of taste, however it hasn't been confirmed by any
authorities. I just think this might be the reason of
our food problems...

Cirwen has been described by the occupational
therapist as "sensory seeker". This is not so good.
It means, that she is kind of addicted to the sensory
stimulae she experiences. She will pursue the feeling,
or sound until she can't take it anymore, and she
crashes. When she was younger, it would demonstrate
in tantrums; now she will be withdrawn, angry or very
irritable.

I can see it often. She loves her own voice. Cirwen,
even when she couldn't utter words, always was
bubbling away to herself, always singing. Now, she's
11 I can hear her still talking to herself, making strange
noises while playing with her brother, singing, making
voice impressions till she has a headache or shuts
herself in her room. Very often, on parties, I've seen
her sitting with her ear plastered to the booming
speaker because she likes the sound and the vibrations.

Cirwen always had to touch things before she put
food in her mouth, any new object had to be inspected
by her fingers. New clothes, toys, even furniture is
accepted or rejected not only by their looks or colours,
but how they FEEL TO TOUCH.

You know, sometimes, when our kids are ill or scared
at night it's a natural thing for parents to take them
into the bed for a night. i never could do that with
Cirwen. Instead of settling down to sleep, she would
start to explore her parents. She would stroke our
faces, stick her fingers in our ears, noses, try to open
our eyelids or mouth. Pull gently or stroke our hair...
It was impossible to fall asleep! Now she's just too big
for that :-)

There are desensitisation therapies for dealing with
crowds and sounds, colours and so on. Many have
benefited from them. I, however, was told that since
Cirwen is the "seeker" it will not have much effect on
her. The therapy may dim the stimulae, but will
not get rid of the desire to experience. Therefore, the
advice is "Live with it!"... So we do...

The future of our children

We all, as parents, worry about our children's future. Who
they will become? Will they have a career? Will we have
grandchildren? Will they be happy?

For us, parents of autistic children, there are more questions.
Will they be able to live independently or will they have
appropriate support when we are gone? Who will look after
those who need 24/7 care? Will they be able to maintain
a job? Will they be able to maintain a relationship? Will
the society accept them? Will they still have to fight for
their rights? I could probably list many more of those
questions and worries.

I decided however to post a link to the last Sunday Times
article written in favour of the new social care Bill which
will be read for discussion in the House of Lords.

This article gave voices to those adults who suffer from
autistic spectrum disorders and parents of those who
cannot speak for themselves.

I keep trying to make my blog as positive as I can, but
I never said it's easy and I do remember it can get worse.
These people have explained to me many things I still
couldn't understand about Cirwen. Enjoy:

http://women.timesonline.co.uk/tol/life_and_style/women/families/article6797874.ece

Time

Time is relevant and therefore we have the smart
devices to tell it's passing. The watches, the clocks,
with different faces, digital, and so on. We use the
types we feel comfortable with.

I do not know if it is an autistic trait or not, but my
daughter cannot embrace the whole idea. Hours,
minutes and seconds... seem to her incomprehensible.

I have tried to teach her and explain time after time
how long is an hour, that it consits of 60 minutes. etc.
I used clocks, videos, fingers, cards and books. Still
nothing.

I keep looking for more resources and new techniques,
but to be honest, am rather frustrated and concerned.
Being 11 and moving on to the secondary school, planning
for more independence - she has to know how to tell the
time! Once the new friends find out she doesn't know
how to read a clock, they will have another reason to tease
her.

I am sure, we will finally find the way to teach her. But when?
How? I don't know...

Time is an abstract. You can't touch, smell or feel it. It must
be difficult to comprehend it's nature for someone with
a very hands-on, practical mind...

Government Green Paper on Social Care Reform

This is an announcement posted on Facebook Group
by National Autistic Society. They are the most
outspoken charity in Britain working closely with
the government as the advocate for people with
Autism.

"The Government's Green Paper on social care reform, published last month, mentions the possibility of moving some disability benefits from being a cash benefit and incorporating it into social care funding, administered on a person's behalf by a local authority.

The NAS will be responding to the Green Paper. We will produce a summary of how the Green Paper proposals could affect people with autism.

We want to know what you think of the possibility of Disability Living Allowance (DLA) being integrated into social care funding. This will inform our official response to the Government. To let us know your thoughts, email policy@nas.org.uk

http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=647&a=20232

This message is from The National Autistic Society (NAS). The NAS randomly monitors the content of e-mail messages sent and received.
Any opinions contained in this message are those of the author and are not given or endorsed by the NAS unless the author is clearly stated to have authority to bind the charity, and this has been duly verified by e-mailing companysecretary@nas.org.uk
The NAS is a company limited by guarantee (No. 1205298) registered in England and also a charity registered in England and Wales (CR269425) and in Scotland (SC039427), its registered office being 393 City Road, London, EC1V 1NG.
www.autism.org.uk"

This is the text of my response to this:

I would like to voice my concern about the prospect of turning the DLA from cash to a fund towards the social care funding. For children like my daughter living in Bristol area it would be a complete disaster. My daughter is an 11 year old with ASD. Being on a milder end of the spectrum means she does not qualify for SEN statement as well. There are no facilities in the area disigned for young autistic children at all. The only teenage group is situated on the other end of the city which is for 16 year olds or over, therefore she cannot go there yet, or she won't when she can, because of the vicinity, as I do not own a car and public transport may be frustrating.

My daughter's DLA is used, by us, parents, to make sure that we can provide her with extra materials for her education (to keep up with curriculum) and her social education within her age group and interests. Incorporating DLA into social care funding on her behalf will mean that it will be spent on facilities she is not illegible for, or she would not be able to use, because it will be out of our reach. Please feel free to search for suitable facilities for children 11 and over in South Bristol - you won't find any - as the Bristol City Council puts their money where it already is (Hartcliffe - scary place to go, or North Bristol ).

Please do not let this happen.

Faithfully Yours
xxxx

If anyone reading this post lives in Britain and is autistic or cares for autistic adult or child, please do not ignore it. Email NAS - speak for the sake of those who need it!

Please...

Struggling with food

One of the biggest issues in bringing any child
is providing them with the balanced diet. Many
autistic people, however, suffer from multiple
food allergies, which not necessarily manifests
itself as a visible rush. Allergies can cause many
behavioural problems like hyperactivity, head
aches, restlessness, irritability even aggression.

For many autistic people food must agree with
their hypersensitivities or a form of OCD. I know
of many who will not mix certain parts of the meal
together, or will not allow them to touch each other
on their plate.

Sometimes it is just an idea of trying a new dish and
you have a hungry child who is not comfortable with
the unknown; taste, smell, texture...

I am always struggling with making Cirwen eat.
When she was smaller, around the age 2 - 4, very
often she would eat only the food she liked the
look of or was related to her Barbie and Princesses
obsession. Well, I even made the mash potato look
pink but it didn't work - she just doesn't like them
at all.

She went once through a whole week living only on
jelly and a bowl of boiled vegetables. My GP said
it's OK, as she had "some nutrients" in the veggies.

I have tested her for some food allergies, but all
what she was tested for came out negative, so I was
told to feed her as she craves things. This way she
goes through the periods of eating one type of food
and then changes for another. It can be tons of pasta
one week and then fish almost every day next.

She still will not eat potatoes in any way you cook it;
fried, boiled, mashed, chips, roasted... no, yuck!
Similar situation is with bread. She would have
a toast for breakfast at times, sandwiches for her
packed lunch, but now she won't touch it.... Bread
seems to be acceptable only in a lunch box.

We also have a problem with meat. She will have
chicken, bacon and ham. She will eat red meat only as
burgers, or with spaghetti - another words - minced.

Cirwen also is very fussy with fruit and vegetables.
Grapes, apples, some of the berries. This again
depends on the texture more than taste. For
example: raspberries are "hairy" and bananas have
similar texture to potatoes... She does like strawberry
flavoured dishes, but will not eat a fresh strawberry,
because it's got pips...

I was very happy, when she discovered kiwi and
loved it. I thought, great, one of the richest fruit,
packed with vitamins! Well, my hopes of adding
new ingredient to my daughter's diet faded rapidly
the next day. She was covered in an itchy rush
from head to toe...

Then come e-factors, which aren't good for any
kids. Autistic child may have an increased
reaction to those. So as Cirwen, therefore we
avoid many sweets and drinks.

This way I often cook something for the three
of us one dish and for Cirwen another, separately.
It's not convenient, but I prefer she eats something
rather than sit for hours in front of a plate of cold
food she thinks is disgusting. (This happened to
me, so I know how it feels...)
We have however an agreement maid recently,
that she will try a new dish at least twice. If she
doesn't like it both times, we won't attempt to
convince her it's good again.

I must say we both stick to it. She will try and
honestly voice her dislike or pleasure. That's one
good side of an autistic mind (in this case).
Honesty. Because the desire to please people is
either non existent or rather low, an autistic
says what she feels regardless of social etiquette.
Things are black or white. Nothing in between
so lets say as it is, to the point.

I struggle sometimes, and visiting family and
friends for dinner can be awkward, but what
can you do?

PC problem fixed finally !!!

Yey! I'm jumping up and down for joy!
My comment posting is finally recognised
AND FIXED! Thank you my genius hubby!

Not only it was the case of "mobile" internet
issue, but also my privacy settings, which
meant I was not recognised as google account
user on any (even my own) pages.

I've been suffering from withdrawal...

Thank you all who have stayed with me
patiently.

Holidays!!

Finally - summer holidays...

The last two weeks have been incredibly busy.
Induction days 2-6 went great. Cirwen still
enjoyed going and learning in her future "comp".
She made friends and it seems that some of the
older pupils took her under their wings as well.
She came back one day proud and all smiley as
she was shown where the "cool kids" hang out
during the break. She can't wait to start in
September although she decided to join their
activity scheme during August, where she will
be able to keep in contact with her new friends.

In the meantime, I run around from one parents
meeting to another... Secondary SEN-Co demanded
all medical reports in the last minute, Primary
meeting for admission of the Little Dragon to the
nursery (yey! The teacher can't wait to have Cirwen's
little brother in her class..), the last performance of
the year six... "Doctor Who and The Missing Head-
Teacher" proved to be actually funny and entertaining
(in contrary to endless, boring Christmas plays).
Cirwen didn't have a solo, or main part, but stood out
with her grin and energy. Her face was beaming with
pride and joy on the stage.

The week before the performance, Cirwen was due to
make a presentation in front of the class. Originally,
she decided to do it on her little brother as she loves
him so much. Five days before the assigned day,
however, after a quarrel at school, she changed her mind
and told me she wanted to tell kids about autism. She
was fed up with the laughing and teasing by regular "not
yet bullies". And so, with my help, she did it. She went
to school to explain why she is different, why she cries
so quickly and often, why she talks in such a way, and
how difficult it is when people don't understand how hard
it can be. She also explained it is not all so bad and found
a list of famous people with autism.

I thought she was incredibly brave to do this. it's not easy
to label yourself in front of cruel already kids, and risk may
be more teasing later. Again my worries were unfounded.
Cirwen received an apology from two of the kids who liked
to tease her, and was flooded with questions even after the
lesson finished. Later that day on the assembly, she received
the Golden Award for her presentation.

She made me so proud. She proved she can adjust to change,
she proved she has the potential for independence, she
proved she can fight for herself and accepted her autism
not only as disability she has to live with, she accepted she
will always have to fight for her right to be accepted to the
society, her right to live and strive for achievement.

Induction - Day one

Here it came. The induction day at the Academy. I must
say, the school thought it through. The year 6 children
have been to the Academy for a whole day. Next week
they come for two days and the week after, they will
spend three days there. The timetables will be kept for
September. I thought - "Wow, it could not be better than
that for my stuck in her ways girl. She will meet the new
kids, see the school and get the idea of the new school
life and system, instead of being thrown into the deep
water and left to deal with it." I was confident and excited
for her. I was positive. Till Monday...

We got up early, actually, for once Cirwen knocked on
my bedroom door, fully dressed at six o'clock asking
if I could help her to find a belt for her jeans... She was
all excited and ready to go. All packed, happy to show
off her new "Twilight" lunch box and see the new school.

We happily caught the bus, and both looked for landmarks
to help us remember the way and where to get off. We did
the same during the walking part of the journey. We were
half an hour early... It wasn't a problem though, as the older
Academy pupils were waiting for the newcomers to round
them up and usher them to the main hall.

Cirwen confidently exchanged "Hello's" with them, asked
a few questions, and then her greeting was completely
ignored by two arriving girls. Noses in the air they looked
other way. I had to go. I could not hang around of course.
I left with a very heavy heart. Cirwen was standing alone
between the two groups of children who obviously new
each other from their street or primary school. She still
assured me she would be fine.

I spend the rest of my day going about my usual domestic
stuff and playing with my Little Dragon, trying to pretend
I'm not worried. But I couldn't help it! What if she will be
just left alone all day, because she's the kid from different
school? What if she bursts into tears at the slightest jest
about her looks or the way she talks which will give her the
cry baby status for the rest of her school life? What if...?
What if...?

3pm came later than usual. Time was dragging cruelly.
Finally, I was there. at the gates, waiting to see her face.
waiting to see the expression on her face.

There she run up to me... Huge grin, skip, "It was brilliant!",
she exclaimed. And my legs buckled and I hugged her to hide
my tears. She made it through the first day. Cirwen made
8 friends (obviously it means these were the girls who she
immediately got on with), she loved every minute of it. One
teacher, she said, freaked her out a bit. "He was just too nice,
but then he became a bit more bossy, so I thought he's OK",
she explained. That made me laugh. He must have invaded
her personal space. For an autistic girl it doesn't have to be
really, really, almost touching close. He crossed the boundary
of her safety bubble she established for people.

Anyway, I am again positive. She can't wait to go back next
Monday.

I know I worry too much, and my girl may be not so vulnerable
as I think. I guess as much as Cirwen needs to be independent,
I have to learn not only how to enforce it, but how to get used to
her independence.

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.

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.

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!

RULES:

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...

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
garden.

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.

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
going!" 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.

The Neno's Award

Another day - another award! What a lucky streak! Thank you Squirrel
Queen 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 :-)