The untamed thoughts on ... Autism

Easter brings good news

2011-04-26T03:22:00.001-05:00

Happy Easter to all of you my friends, and family!

As the season approached, I have finally received the long awaiting decision from the Department of Work and Pension regarding my appeal against their reward of my daughter's Disability Living Allowance. Originally, they rewarded her lower mobility and lower care components saying that she needed only 1 hour of extra care...
I appealed, as for a 13 year old, she is not as independent and resourcefull. As most of people with autism she simply lacks common sense, which really, really is a disadvanage in everyday life. That and for many other reasons, she needs a lot of help from us on daily basis to maintain a healthy and safe lifestyle.

It took two months, school reports, GP reports, babysitter's letter and of course my own letter of appeal.

We WON! We won with the most unsympathetic government body, who is being pushed to cut the disabled benefits even more! I consider it my own, great victory. They agreed to raise the care component to medium, and left the mobility as lower (which I did not expect to be raised). It will be backdated 6 months and will remain at this level indefinately. Finally they realised that you don't "grow out" of autism and there is no real cure? I hope so.

I am all over the moon, this will be the additional chunk of money I needed so desperately to pay for the independent clinic to run the dyscalculia and dyspraxia tests, after school activities, holiday activities etc...
Cirwen already is making a list :D

In all that, I have an advice for all, who have been awarded lower DLA than they deserve. Appeal. Fight for your right, and the right of your children to live to the full and with dignity. It is hard and stressfull, but it is worth a while. The more of us voice our anger and disagreement, the less reasons for further cuts, the government will have. Don't suffer and don't let your children suffer.

Your voice counts here. Let it be heard.

I should know that, shouldn't I?

2011-04-07T16:57:00.000-05:00

It's been very quiet on the school front lately.

Cirwen is happier, goes to school without fear, so I don't have to call and complain, remind of hypersensitivities, beg for help.
The school does not call to inform me of good or bad incidents.

Today, my daughter came back from school and told me she has been taken from the PE class to take a dyslexia and dyscalculia test ... ?! She has told me that it is organised by the school SEN -Co (Special Education Needs Coordinator).

Well. I am happy, as that's what I begged for since September and was refused. I felt I failed, lost the battle and failed my girl. Now, suddenly, out of the blue the tests just been done...
Yes, I am glad that it happened, but... but I'd like to be informed! I should know that it's being done, shouldn't I? What if I already had an appointment in a private centre arranged?

Hmm... I'm glad, but I am also disappointed that the SEN-Co didn't think worth to keep me informed...

April 2011 - Autism Awareness Month

2011-03-31T18:26:00.000-05:00

Here we are again. April - the month dedicated to our beautiful people with Autism.

In the jungle of questions what causes it, if we can cure it, how to live with it, why me...etc., the most improtant (in my humble opinion) is are we able to embrace it? And the Autism Awareness means exactly that. Those
who are touched by this condition live it everyday. Us parents embrace, understand and fight for rights and wellfare - we spread awareness to all who want or need to listen.

This year there a quite a few global initiatives to spread the world and show our support.

Light the world Blue: An attempt to light up most prominent buildings blue. Ordinary people also pledged to light a blue bulb in their homes.

Stand up for Autism: Ever so popular YouTube event. Thousands of celebrities, parents, charities and Autistic adults and children publish their recorded message to raise awareness of Autism.

Many of us will change their profile picture on Facebook into Autism related icons: jigsaw puzzle ribbon, Autism Awareness Badge, Thomas The Tank Engine, I love someone with autism... and many more.

These are only a few in a sea of events. You'll see us everywhere, badges, local stores, streets, cinemas and public transport. Only this time, we won't be trying to blend and "fit in". We'll be loudly and proudly speaking for Autism.

Please listen. That's all we need.

Back again

2011-03-30T12:01:00.000-05:00

Hello my darlings. I am back again.
I have lost the battle with system. Health authorities indeed do not deal with learning difficulties and school will not fork out the money as well.

I am to go to test my girl privately, which I will of course... just saving funds now, ha ha.

What happened was hundreds of emails, appeals, referrals and re-referrals and constant rejections. This did not make me too happy obviously and I spent my time moping, not really wanting to talk about it.

Well, I am over that now. New ideas and opportunities, new teacher's view. There is apparently not so much evidence to immediately state that Cirwen has dyscalculia. If she did have a diagnosis, the method of teaching would still stay the same as the maths teacher is a special needs expert in this subject. She has expressed that Cirwen lacks confidence and that is what stopping her from progressing further. Here I must agree, that in many cases of homework, she started to panic even before she read the instruction to the task... And then, she calmed down and just.. did it!

I am taking my time now to observe, help gain the confidence and learn, learn learn..

On the bully front we won! Cirwen has been moved to three different classes, where the bullies are not! She is happier than ever. Still the star of the Drama club, started to take Bass Guitar lessons and sings in a choir.
She's busy, creative and smiling again.

Yesterday was Cirwen's thirteenth birthday. What can I say? EEEK I HAVE A TEENAGE DAUGHTER!!!

Do I cope...? How?

2010-11-09T02:36:00.005-06:00

This is a question a lot of parents of children with Autism ask.
A lot of parents with children neurologically typical ask me.
How do you deal with it?

I am sure having a high functioning autistic child is different,
than a non verbal, severely affected one, but it doesn't
mean it's much easier.

As I wrote somewhere before, when the diagnosis was pronounced,
it was not a surprise. With that however, came an emotional storm.
Is it my fault? What it really means? What can I do? What the future
will be? Can I do it? I was scared but in the same time relieved I had
a definition to base my parenting on. I went into frenzy of searching
for books, groups, chat rooms, charities... and believe me, back in 2002
there weren't as many.

I learned from books and talking to parents on the National Autistic
Society meetings. These meetings made me realise I was not alone.
Books gave me knowledge and more professional insight into the
condition as well as the field to compare and understand my daughter's
behaviour.

I have and I am still learning while my girl is growing up. Different age,
different problems, different ways to cope for both of us.

All parents need patience, I think parents like me need more of it. People
with autism have no common sense. While you expect from a 12 year old
to intuitively know how to buy a bus ticket, what to do when the bus is late,
etc, you can't expect this from a 12 year old with autism.
Each time, you have to explain in simple, clear sentences what to do.

Believe me it's not so easy. There are moments when I loose it and boil
inside thinking " you are 12! You should know that! When I was your
age..." Well, I take a deep breath or two. Sometimes it takes a cigarette
(yes I know I shouldn't...it's not an advice for others to follow) and start
explaining. Again. I've learned I am allowed to get frustrated.
I am not perfect and I am allowed negative emotions. It's natural and
important to know this! Although I am doing my best not to show them
while talking to my girl as this scares her. I also do take pleasure in the fact
that having to interact, bring up an autistic child forces me to think "out
of the box". Many traditional parenting methods just don't work with
someone who suffers from hypersensitivities, communication impairment,
thinks literally and doesn't like physical closeness too much.

So, I wait for the moment of solitude. When I can rant, cry and scream.
Or blog. Or chat to my husband and just let it go. He gives me his very
laid back attitude and stays always positive. He's my rock.

While dealing with autism, I have to deal with "THE SYSTEM". That
is where my coping skills are needed the most. "THE SYSTEM" are:
the school, the department for work and pensions, the LEA, the medical
authorities and services.

High functioning Autism doesn't have to be crippling. It's the ignorance
and inadequate support system that cripple our children.

If you read my previous posts, you will understand what I am going
through right now. The issue of finding the paediatrics service is still
unresolved. I was told by someone from Children Services how "strange
it was that a 12 year old is not under constant care of a paediatrician"...
Ha!

During last month I was ( maybe still am) very near to a nervous
breakdown. I am at the point where all resources are exhausted and
the only thing I can do is to wait. The task I hate with a vengeance.
Waiting means to me helplessness, passivity, wondering why the
postman is so late and just not knowing.

So in this passive meantime, I have to keep myself occupied with
something else. Here go my books, but often I can't detach my thoughts
and loose myself in the fantasy world. So I rant here. Blog!
My husband is a bit bored of the topic, so I write on forums and twitter.
I sew. I sew costumes for my friends and myself for the larping. And
I do go to Live Action Role Play where I can physically beat people up
and fuse my frustration.( Playing a grumpy dwarf does help with this.)
What else, I try to take one day at a time, deal with everyday problems
as they come and NOT think of the future. NO LONG TERM PLANS.
That's my motto, as I don't know how things will develop, I don't want
to be disappointed.

Don't forget, I have to think of the well being of my 4 year old typical
son too. He also needs me as much as his sister.

Do I cope? I think I do... How? Mainly by knowing that if I crack, no
one will pick up the pieces but myself. I'll have my husband's helping
hand but if I fall into depression it will be up to me to crawl back up.
I feel too lazy to deal with that as well. So - I stay here. On the surface.

Back to square one

2010-10-18T03:46:00.003-05:00

I am back to square one.

The clinic we attended in the past cannot see us,
due to the change of boundaries.

In the meantime the GP has referred us to another
NHS service, they also will not see young people from
our area of the city.

I am back on the trail, looking for appropriate clinic to
do the required tests... none of the representatives of
regecting us was able to tell me which clinic serves the
South of Bristol...

In the end, I have emailed Primary Care Trust for information.
No answer as yet, but I shall talk to my doctor tomorrow.
At least I know what the path of referral should be.

I was fuming last Friday. Today .... I just have to wait.
Wait, and watch Cirwen struggling....

Tweetathon

2010-10-12T13:07:00.003-05:00

There is a very remarkable man on twitter today.
Yesterday morning, Gray Collins or @diaryofaledger started
his 60 hour tweetathon to raise the money for
the National Autistic Society in the Isle of White.

The target is £5000. Gray is now tweeting at least
every 10 minutes for over 30 hours and raised over
£2100!

He is doing it because his nephew and niece are on
the autistic spectrum and he can closely see the
struggle his family face every day.

Whoever you are, please visit his website.
If you cannot donate spread the word! Tweet,
retweet facebook it, lets help him reach the target
before midnight!

Here is his website: Just Giving

Autism Service Dogs Part 2 - It's not all so great. Ryan has some questions

2010-10-11T15:28:00.000-05:00

This second video Ryan has made, carries
a lot of weighty questions to organisations providing
and training dogs to assist the vulnerable.

I thought we all should know about the flaws in the system
Ryan has noticed, and is not afraid to ask loudly about them.

While some are lucky, the others are left queueing or
simply deemed not eligible for a life companion.

For example, I found out that in UK the dogs are NOT
available for people between 11 and 16/18 years old...
Why? I am waiting for a reply.

My lovely guest's:

question to autism service dog organizations

EEEK! I have joined the twitter and Sunday Blog Hop

2010-10-10T05:51:00.005-05:00

Thanks to Squirrel Queen from The Road to Here,
I have done something new and finally joined
twitter as well.

Simple Sunday Blog Hop

Go try!

Autism Service Dogs Part 1 -- Meet my guest

2010-10-07T15:13:00.005-05:00

Today, I'd like you all to meet my guest: Ryan and
her beautiful white German Sheppard , Nimrodel.

Ryan is an Autistic young woman thanks to whom,
I have found out about the Autism Service Dogs.
Nim has made Ryan's independent life possible and
happy. Please listen and watch their story:

(she says it's a draft, but I wouldn't change it)

Autism service dog dedication - video by Ryan

Contacts for USA organisations - the best of all Wilderwood
and Highland Canine

Contact for United Kingdom organisations - supportdogs

All of them train the dogs both for children and adults.

After holiday silence....

2010-10-05T12:57:00.006-05:00

I am ashamed to have not written for so long...
Summer holidays contributed to my laziness and a
slight disruption to the usual routine. But here I am.

Ready for the next fight of the year!

With the beginning of September and the new school
year, came new government's policies and... CUTS.

CUTS is the dreaded word in the world of carers and
disabled people. They mostly affect the poor and most
vulnerable. As always. Here as well.

I was informed, that after a year of waiting for the
re-assessment and testing for additional difficulties,
the school is no longer able to pay for it. Therefore, my
girl and several others are left as they were, and we, parents
are to get a referral from our GP.

In my case, I need Cirwen to be tested for dyscalculia and either
dyslexia or dyspraxia. This is due to the teachers' concerns
voiced during the last parents meeting in July.

Funny thing is our UK system. School SEN-Co says I need
to go to the GP.
So I did.
GP said go to Dyslexia Centre.
So I did.
The Centre says "yes, we will happily do the test.
It will last 3 hours and will cost you £440. "
I hyperventilate....

From then on I am on the quest to find out whether
there is another way to do this through normal NHS
channels or Local Educational Authority (LEA) rather
than private.

LEA tells me about a form a GP can fill for me which
will go to a Common Assessment Framework, who are
an independent from LEA or NHS and they might take
the matter into their hands. Might, nothing sure...

Back to the GP. He doesn't know anything about CAF
and asks me where to obtain the form.
I don't know...
He takes the phone numbers and a week later I receive
a letter that he spoke to all the same people and he's
none the wiser...
I despair.

I calm down and call the pediatrics clinic where Cirwen
was originally diagnosed and ask whether they have the
ability to do the tests, and what do we need for that.
Simple answer: "we'll do all the tests, the GP has to re-refer
your daughter as the records are not held for that long."
Relief!

Back to the GP. I had to provide him with the name, address
and telephone number to the clinic.
Phew! Now I need patience.

Although a huge weight has fallen off my heart, that all will be
sorted without selling off whatever I can to fund the tests,
I am appalled at the lack of communication and information
available to the professionals in UK. I would have imagined,
that the GP should have the details of the only pediatrics clinic
for the area he operates in, and what services, help that place
offers. The LEA and school should also have been provided with
the simplest alternative in case of the lack of funding from the
council or government.

But hey, that would be a perfect world wouldn't it?

Message from Cirwen

2010-07-23T16:21:00.005-05:00

This is a song Cirwen found on YouTube.
Her first thoughts were it is a song about a child
with Autism, because so often she feels exactly
like Toeto. She knows how difficult it is to let
herself out of the hiding.

What I think? I have seen the withdrawal, I have
felt this inner struggle to express the feelings hidden
somewhere very deep, inside a girl I love so dearly.

She would like everyone to know how she feels.

What else ?....

2010-07-17T03:51:00.003-05:00

Here we go. More to worry about....

Last month must have been very difficult for Cirwen.
She sat four exams over two weeks and she took them
very seriously. She worked at home on maths, because
she really wanted to do well. Then science, IT, English ...

The results were discussed on the parents evening which
she was also required to attend. I have heard nothing but
praise about her work, dedication and her wonderful personality.
I was very, very proud again how much she progressed not
only academically but also emotionally.

Then I spoke to her maths teacher. He was fairly happy with
her work and result of the exam. But.
But he pointed something out I didn't notice or considered.
By the way Cirwen writes numbers backwards, and that she
finds it hard or impossible to make number bonds, he suspects
my girl might have the "number dyslexia". (Forgive my un-
professional term - this is yet to be read and researched).

It did make sense. My next step was to go straight to the SEN-Co,
yet I am still waiting for her call back. Hopefully we will be able to
include the test in September re-assessment of Cirwen's needs.

Two days later, my little star came back home, had a milkshake,
and went to bed. She slept for 13 solid hours! She tried to go
to school, yet came back from the bus stop complaining about
breathing problems and a pain around her heart... Panic attack?
I don't know...

Of course I kept her home. I think the stress, the whole
year in new school, the pressure of being good, fitting in and coping
with sensory stimulae and bullies had taken its toll and her little
body put a stop sign out.

Thankfully summer holidays are starting soon. Just Monday to survive,
Tuesday is the day of their reward trip to Thorpe Park and that's it!

Hold on there Little Star. I'll do anything to keep you well...

Back to work?

2010-06-25T02:50:00.003-05:00

Is it a good time to go back to work, or not? This is a question...
I have stayed at home for the last year. I thought it was important
that I was "on call" and available at all times during Cirwen's first
year in secondary school. This also coincided with Little Dragon's
first year in the nursery.

As you know from my previous posts, it proved to be the right
decision, as there were so many problems. Most of the bullying
issues have been sorted. Cirwen grew up emotionally and
socially during this time and developed a lot of new coping skills.
She achieved so much, she has been recognised, she excelled in
her subjects of interest.

But. I know, there always be a but, because I am so protective...
It doesn't mean all the problems are solved and there will be
new issues next year.

On the other hand, I can't just stay home for ever and when the phone
calls pick it up thinking "is she crying or is she happy?". I need
a bit of my own separate life. Away.

I am searching half heartedly, at the moment, as I still fight with
my own thoughts. Am I ready to let her be even more independent?
Is she ready for that? Will my new employer understand the challenges
we are facing every day just to lead a normal life, and that sometimes
a usually a small problem turns into tragedy? For many businesses
hiring a mother means days off to deal with children's sickness, school
plays etc. Hiring a mother of an Autistic child may seem a higher
risk.

Well, I'll see how it goes. I am back in the job market. With all my
fears, I cannot forget that I am not alone and if I can't deal with
something there's always their Dad. My darling husband, who
has been looking after Cirwen all those primary school years while
I was working full time. I realise now, I have taken over with
a thoughtless force of I'm here now, I will do it.... I'm sorry dear G.

Ian Dury - Spasticus Autisticus -

2010-06-08T03:08:00.005-05:00

I have just watched a DVD. "Sex And Drugs And Rock'nRoll".
It is a story of Ian Dury - the founder of Blockheads, singer,
songwriter, musician. His lyrics were witty, provocative and
gave inspiration to many.

As a child, Dury suffered from polio, spend time in the home for
children with disabilities .Watching the flashbacks, the homes approach
to these kids seemed to me, emotionless, cold and degrading. It is
important to know, that the word"spastic" was haled derogative only in
the early 1980s.

In 1981, Ian Dury was asked to write a song for charity. It was also
supposed to boost his carreer. And so he did write a song.
"Spasticus Autisticus". Provocation sang to "those in the normal
world". Strangely enough, it didn't last on air for a long time, as some
members of public were offended by it. Strangely enough those offended,
were NOT the disabled people. As Dury said himself, people with
disabilities don't want sympathy, they want respect.

I personally like this song very much. It is a statement shouted right
into the face of false charities, narrow minded system and society.
It is what I want for my daughter: respect, inclusion and appreciation.

Here it is. If you think you might be offended, don't listen:

More praise for Cirwen!

2010-06-06T14:00:00.002-05:00

My daughter's success made it to the local newspaper!
It's not the first page and it's not a big article, but all the
same.

Cirwen's story has been recognised and published in
Evening Post.

Although a few weeks after the award ceremony, I
still had tears welling in my eyes from joy and pride.

Here it is:

"Talented Cirwen shines on stage"

Result!

2010-05-12T00:43:00.003-05:00

I am proud to announce that Cirwen
won the Outstanding Cultural Achievement Award!

She came back last night with a trophy and smiles.
I'm all over the moon!

She had photos taken at the ceremony and today
at school, so as she said it's her first step to fame.

I can't really say anything more.

Well done Cirwen!
I'm the proudest mum in the world!

Award

2010-05-11T02:58:00.003-05:00

My fingers are crossed for Cirwen today.
She and 6 other pupils were nominated for
the National Oasis Awards for outstanding
achievement in sport or cultural fields.

Cirwen's Learning Mentor has nominated her
for this award and she won the Bristol round.
The nomination is for her performance in the
School Winter Showcase, overcoming barriers
she faced everyday on stage and at school. Barriers
which autism places in front of all touched with it.

Today Cirwen is going to Birmingham, accompanied
by other nominated students, Principal and 2 teachers.

Today, we will find out if Cirwen receives the award.

It's a big day for her, and I think I was more excited
this morning than her!

So, my fingers are crossed. Thankfully, Little Dragon
is keeping me busy, so the day won't drag so long.

Keep an eye on this page tonight. The update is coming!

Respite or escapism...?

2010-04-17T02:33:00.003-05:00

We all love our children. There is no doubt about that. But.
Yes there is a "but". No matter how lovely they are, how
well behaved, how difficult or challenged, we all as parents,
need to have a break.

For us with children with autism it is a major problem. Our
children will not stay home with a random friend or agency
babysitter. My daughter, for example, although high functioning,
would not let me go to a corner shop without her. I could only
leave home when she was well and truly asleep. At the time
I worked in the evenings and this had to count as my respite,
social life and a chance to talk to other people than my child
or partner. You can't really call it a "break". Different issues
and stress of a workplace still leaves one tired and emotionally
drained. We all need a rest. Peace. Quiet. "My time".

Parents of children with severe autism are mostly 24 hr
carers where the employment is simply impossible therefore
the "pretend" respite of having a job is not an option.

There come organisations like Cygnet Springside.
A organisation providing holiday, respite homes in the country
especially for people with autism from the age of 5 to 17.
The place is children friendly, safe and low stimulus. The
environment provides possibility of socialising, inclusion and
learning. Sounds great, but it's not free.

National Autistic Society is able to provide parents with
government funded respite services. There are a few options here.

Befriending scheme, where a family is introduced to a trained "friend".
The scheme provides a possibility for autistic person to go out within
their home town for a few hours a couple of times a week. Trip to a cinema,
park, or shopping.

There is also an option for short breaks respite, where with the help from
Social services a child or young adult will visit another family regularly.
This is a bit like "holiday foster parents".

NAS also run their own homes within UK.

Having a rest from daily stress, even the routine we have to maintain
for our loved autistic kids is very important.
I, personally didn't use any of these services. Why? For the first few years
of Cirwen's life my job was my respite and occasional trips to her grandmother.
Over there still I was the primary carer, but the change of scenery did wonders.

Later, when Cirwen became more socially aware, vocal and made her first
friend, came sleepovers. We went through trials, mistakes and dramas.
We were always on call in case my girl pulled a tantrum about something
the friend's mum couldn't help. There were times when the "sleepover" lasted
two hours. However, after a good number of trials, the other mum found her
way to deal with my daughter. The girls became best friends, and now us,
mums are best friends as well. She was wonderful. Cirwen was obsessed
with pink, she has to have her bedding in a certain way on the bed to fall
asleep etc. One day Cirwen came back telling me that there were not enough
pink pillow covers, so the other mum made one especially for her... The girls
are in different schools now, yet they still see and text each other frequently.

We were also lucky to have a very good friend, who stayed with us for several
months. During that time he bonded with both of our kids and they named him
uncle. He became now our babysitter. Obviously since we can arrange for
Cirwen to see her friends during the day or a sleepover, we still have her
3 year old brother to be taken care of. Although Little Dragon is not autistic,
he's a handful and hasn't got sleepover friends yet. So, my latest respite, is
something a lot of people would call escapism.

I found LARP. Live Action Role Play. My husband used to play a lot before
we had Cirwen, gave it up for many reasons, majorly the system became too
expensive. Recently, a friend mentioned a system which is almost free to play,
(apart from your personal kit) and off we went.

I loved it! Got a choice of class and race to play, dressed up as an elven mage,
given a latex dagger and off I went into the woods. Believe me, being someone
else in a fantasy world and being able to whack people without repercussions does
the job for me. Yes, the next day my bones and muscles are sore, but my head is
clear and I am ready for action in the real world. Apart from that, I found a new
hobby, which I found quite relaxing. I bought a sewing machine and started to make
costumes. I even got a few compliments :-)

So. Twice a month, on Sunday my dear husband and I pack our bag, take a packed
lunch and go to spend a day in the world of fantasy. Call me crazy, nerd, escapist,
it does the work for me. I have a chance to meet friends, spend the day outdoors,
exercise, and what's the most important give my anger and frustration an outlet by
fighting the monsters physically.

Of course it won't work for everybody. But my message is, even a day away from
our usual surroundings, or without our beloved kids can have a healing power.
Whether it is an evening in a hot bath, book and a face mask, a cinema trip, or
a day of running around a forest with a rubber sword hitting each other -
we all need a break. To stay strong, sane and ready to face the challenge of caring
for our kids (special needs or not).

International Autism Awareness Day

2010-04-02T02:05:00.002-05:00

Dear friends, friends to be and random visitors,

Today is the big day for us parents and carers and our autistic children
and adults. Day when we can talk to spread the word of ups and downs
and ask for help and understanding. It is another day to take a chance
and break the stereotypes.

There are events happening all over the world so keep your eyes opened.
UK residents can find the detailed information on National Autistic
Society website.

Remember my friends. Although your pennies will be most appreciated, it's
not essential. The aim of this day is to accept that autism exists. People touched
with autism are here and there is no cure. The least we can do is to make them
welcome in the society, accept and understand their difficulties, and appreciate
their gifts.

IGNORANCE HARMS

Wear blue today to show your support for people with Autism.
Thank you .

News flash: A six year old boy charged with felony

2010-02-22T05:06:00.004-06:00

I have read this and cringed. I had to let the world know
about this ridiculous case.

Dallas. A six year old boy with autism has been placed
at school without needed aid and support. Having many
issues including behavioural, hypersensitivities and of
course communication, no wonder he found it frustrating
and could not conform to the "norm".

He was restrained. How?
A 200 lb man SAT ON HIM!!!

Result: the poor boy bit him. And now faces charges of felony...

This is a link to the Facebook group who are trying to petition
the authorities to drop the charges . Please join if you care:
HELP NOW for DALLAS Obanion

Valentines Day and tears...

2010-02-18T09:23:00.002-06:00

I know what you are thinking. The same as me if
I read this title: " no one loves me... boo hoo!"
No. Actually, exactly opposite...

You see, this year, my husband, decided to order
flowers and a Valentine card from "a secret admirer"
for Cirwen. He thought she will like it and won't feel
a freak if she was to be the only one from her friends
without a card. I thought it was a really sweet idea.

The flowers came when we were all out, and were
picked up by a friend, who temporarily stays with us.
Cirwen found them and the card with simple "be my
Valentine" message in the kitchen.... and burst in
tears!

I, of course, sat her down and asked what was the matter.
She didn't want to be any one's Valentine, she doesn't want
to have a boyfriend and it felt "too grown up".
Cirwen was so upset by this, that in the end Daddy had
to confess to the whole idea. We explained that, it was
only to make her smile and to tell her that Daddy loves his
daughter.

So here we are. A seemingly innocent gesture turned into
a disaster. Cirwen often expresses her fear of growing up.
With this comes also a fear of the fact, that peers will
expect her to have a relationship. An idea of a boyfriend,
to her, means a lot of uncomfortable things: physical contact,
closeness, a threat to her personal space... Well, she is only
11 and I'm happy she is not looking for boyfriends, however
I really did not expect such a strong reaction...

Thankfully, she accepted the flowers, but the card went into the bin.

On a happier note

2010-02-10T07:15:00.003-06:00

Not all lately is such in such a bad state.
There are good news..

Good news No.1
The Academy's Winter showcase was such a success,
that the governors fished out more funding for the
Spring showcase. This will be staged in the school's new
theatre, so the excitement is even higher! (this year
we expect the completion of the new school building).
Cirwen will again take part in the production of the
drama club.

Good news No.2
Cirwen's Learning Mentor has informed me, that she
has nominated my daughter for the Best Achiever Award.
This award is given between 13 of existing in UK Oasis
Academies. My heart grew, when the teacher said, that
she wants Cirwen to be nominated, because she has
improved academically, socially and emotionally in such
a short time despite her Autistic nature and despite the
bullying.

Whether she will be awarded that is another question,
and time will show. I however, am happy and proud
that she at least made it to the nomination.

International Conference

2010-02-08T04:53:00.003-06:00

On 26th of March 2010, The International Autism Conference
will take place in Malta.

It's focus will be "New thinking in Autism". It will be attended
by professionals and charity activists, who will be able to discuss
the new policies and ideas of fighting for the well being of people
with Autism around the world.

Read more on:
http://www.autismmalta.org/#

Some trouble, some frustration

2010-01-29T03:24:00.004-06:00

Here we go.

School started only 3 weeks ago with a few days off
because British can't work when it's snowing.

(but snow is not the subject here, nor the inability to
cope in winter)

We got two bullies down, two to go.

The school is very cooperative, although it takes time.
Cirwen has toughened up. She manages to ignore the
teasing comments every day, now.

The last two days I spend on the phone to school trying to
speak to someone. Due to Ofsted visit I managed to talk to
Cirwen's Learning Mentor yesterday. There I found, that
one of the girls has been expelled for bullying not only my
daughter.

Another hopelessly long process is filing for re-assessment
of Cirwen's needs. The SEN-co, is talking to relevant LEA
(Local Education Authority), who has to approve this motion.
Even the teacher sounded slightly frustrated, that after 3 months,
she still has no approval. There are two more children
on the autistic spectrum in need of that...

Well, as much as I felt disappointed for the lack of details, or action,
I could not blame the teacher. The system is as frustratingly
soulless to the professionals as to us parents.

sooo we're waiting, waiting, waiting... hoping...

Autistic gift

2010-01-19T12:43:00.002-06:00

It is said that autistic people are either expert or savants
in one particular field. Savant is a rare phenomenon, although
seen in low functioning autistic people as well as those more
able.

I think the reason for that is because autistic children and
adults are obsessive, therefore they gain as much information
as possible on a chosen subject. In other cases, they are simply
talented.

I think I have discovered Cirwen's love for words. This is
a piece of her recent homework, where she was supposed to write
what she thinks will happen next in a book the class is currently
reading.

I am quite impressed with the style of this little piece. Tell me what
you think, but don't forget she's 11, and I don't think she's a genius :-)
I think there is a potential...

Continuing the story called Jake's Tower...

Last time when Jake went to the zoo with his mum and Steve, a little cheeky
monkey peed on Steve. Jake laughed so much that Steve got angry... and then
had beaten up poor young Jake... So he ran away with his mum....

Now Jake and his mum were rushing to the bus.
“Hello Marie” said a voice. Mum remained in silence completely ignoring
the fact that an old enemy was on the bus too.
Mum turned round in shock “What are you doing here!?”mum cried,
“Tut tut Marie you know who I am. Y’now it’s me Chelsea, don’t you
remember?” Chelsea snorted. She took one look at Jake’s beaten face.
“well well well who is this ugly brute?” asked Chelsea. “Leave us alone! “
said mum.

Once they got off the bus mum whispered “I hope your grandma Mrs.
Judd actually lets us in the warmth! She has to! She owes us big time
for getting your dad Danny against me! Jake knocked on the door “hello?”
said Jake worryingly. The door opened with a horrible sound like
a person screaming in the doorway. “C’mon Jake lets go. Don’t be afraid!”
whispered mum comfortingly. The two of them stepped into the house.
“BANG! CRASH! BOOM!” a voice cried. Mum gasped in shock. “Mrs Judd?
Were are you!?” mum called out. Then a fat big old lady came from
the distance. “WHAT DO YOU WANT!?” cried Mrs. Judd. “we wanted to
get some shelter” Jake whimpered. Mrs. Judd snorted.”All right come in then”
Jake was so happy he even hugged Mrs Judd. They all sat down and
had some tea.
By Cirwen!

New Year - New Hope

2010-01-15T16:15:00.002-06:00

Happy New Year my dear friends and future friends.
I haven't been here for a long time. Too long...

Cirwen's emotional problems, bullying, pre-Christmas
run-around and a strain of flu from one family member
to another took their toll. I was too tired to read or write.
If I was a hypochondriac I would have thought I was
narcoleptic :-)

However, I am pleased the year 2009 finished on a good
note.

After an violent incident on the way from school, when
Cirwen was attacked and kicked by another girl, things
have been dealt with swiftly. A parent of another child
saw what happened and called the school. 15 minutes
after my daughter came back home, I received a phone call
from the Head of the Year 7 asking about Cirwen's well
being and for her to submit the statement to him first
thing in the morning. Apparently the girl was already
a major concern at the Academy.

Cirwen, as frightened and upset she was, went to school
the next day and made the statement. Obviously she
was advised to stay away from the girl as much as possible.
Since then, apart from an odd teasing remarks, nothing
as horrible happened.

My beautiful girl took part in the Academy Winter Showcase
taking major part in their Christmas performance. She glowed,
her voice rang when she recited the poem, her movement was
flawless. Both her dad and me were proud as proud could be!
we spoke to the drama teacher who told us that Cirwen is now
the "resident member" of the drama club and she's not allowed
to leave until she leaves the Academy.

Not that Cirwen would like to anyway. I have found that drama,
which she really enjoys, helps her understand the emotions and
feelings, or how to deal with some situations. She began to deal with
teasing in a much calmer manner. The howling and running out
of the classroom has stopped, and she started to enjoy going to
school again. I think it might have helped that she made many
good friends with older pupils at the drama club as well.

Well, that's the best news so far. It doesn't mean the fight is over.
It means we can do this. It means provided the right support from
school and members of the community, we can stop bullying.
She/he probably will never read this, but I would like to say a deep,
heartfelt THANK YOU, to the mum or dad I don't even know,
who called and reported the incident at the bus stop that day.
People like you make a Difference. Thank you.

Coping with emotions

2009-10-26T04:18:00.004-05:00

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...

2009-10-08T03:24:00.002-05:00

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

2009-09-30T01:34:00.003-05:00

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

2009-09-18T12:01:00.002-05:00

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!

2009-09-18T02:44:00.003-05:00

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

2009-09-08T07:09:00.002-05:00

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

2009-08-25T03:39:00.005-05:00

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

2009-08-22T03:25:00.004-05:00

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

2009-08-17T15:18:00.003-05:00

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

2009-08-16T03:42:00.003-05:00

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

2009-08-11T03:28:00.004-05:00

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

2009-08-05T05:33:00.005-05:00

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 !!!

2009-08-02T06:51:00.003-05:00

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!!

2009-07-27T00:57:00.002-05:00

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

2009-07-11T02:04:00.003-05:00

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?

2009-06-27T14:16:00.003-05:00

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

2009-06-17T11:34:00.008-05:00

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...

2009-06-13T04:59:00.002-05:00

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!

2009-06-13T03:15:00.003-05:00

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

2009-06-11T03:18:00.002-05:00

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....

2009-06-07T11:43:00.000-05:00

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

2009-05-24T13:55:00.000-05:00

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

2009-05-15T13:09:00.000-05:00

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

2009-05-11T05:19:00.000-05:00

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

2009-05-05T17:21:00.000-05:00

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

2009-05-03T14:03:00.000-05:00

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!!!

2009-04-29T15:14:00.000-05:00

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

2009-04-26T04:08:00.000-05:00

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

2009-04-22T04:40:00.000-05:00

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

2009-04-16T12:04:00.000-05:00

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 :-)

A big "Thank you" to AlPha B.

2009-04-14T14:22:00.000-05:00

It have been very eventful two days here, within
the blog community. The Awards being given and
received.

Thanks to these awards I have so many new
fantastic blogs to check out and follow! Phew,
it's very exciting and spring like...

However, what I actually want to say is:

Thank you AlPha Buttonpusher. Thank you
for passing the honour of Noblesse Oblige
to me. I have only started my blog a month
ago with big aspirations but expectation of
rather mild response due to a sensitive subject
or, as they call it niche. I am truly stunned by
the warm welcome, encouragement and variety
of my readers!

To add a cherry on top AlPha has took her
time to search for these new autism related
icons with added link to "Untamed thoughts..."
What can I say but: just jump up and down
and shout again Thank you!!!

For your time, generosity and all these

beautiful things and thoughts you do!

Click away dear friends, copy and paste,
add anywhere you wish.

If there was a cure, would I...?

2009-04-13T05:40:00.000-05:00

The Speed of Dark by Elizabeth Moon is another one on my favourite books list. I have written
this review for one of other websites I joined. The book is placed in a futuristic world. It left me
with very strange question. If there was a cure, would I put my daughter through it? Would
she stay the same and if not would this be a change for better?

For those who are here for the first time. Please remember I am pondering over the mild case of high functioning autistic. In the case of severe autism I would not hesitate.

The Speed of Dark is narrated mainly by its autistic hero, Lou Arrendale. Written with the honesty and passion the book is another example of Moon's gift for characteristics.

Lou is 35 and his life is perfectly organized. Thanks to his gift for pattern analysis he works for a pharmaceutical company together with his "normal" and autistic co-workers, he practices fencing, makes friends. He follows the rule hammered into his head for years: "Act normal, and you will be normal enough."

His peace, however, is shattered after his "normal" friend's violent outburst and an unexpected announcement of his new boss. The management gave all autistic staff an ultimatum: undergo the new experimental treatment to cure autism or lose the job. The treatment will alter the subject's brain, wipe out everything what made them - personality, memory, knowledge - tabula nasa.
That is when Lou's exploration of free will, identity, health and illness, good and evil begins. He looks for answers. Who will he become? Will there be a slight memory of Lou Arrendale left when he wakes up? Is it really better to be "normal"? What is the speed of dark? If he chooses to undergo the treatment he will have to catch the darkness. Lou throws himself into studies of neurology in order to find the pattern which would help him understand his dilemma. Like many little boys, he wanted to become an astronaught and because Lou was autistic this dream could not come true. If he becomes "normal" will he be able to follow that path and make his dream come true?
His philosophical quest for self is captivating in his obsession with the speed of dark. Lou finally makes his decision - "When I get there, the speed of light and the speed of dark will be the same".

Elizabeth Moon has presented us with a very believable character and psyche of an autistic. You will not find many so insightful novels written by a "normal". Her book is a gift to all of us; a chance to understand the unknown; appreciate the different, and question. "Not knowing arrives before knowing" says Lou; such a simple truth but how much courage does it take to make this step and find out...

I have put down this book with many questions still gnawing at me and I hope those who will read it now, will see why. Most compelling and eye opening piece of great literature.

The Award

2009-04-12T07:11:00.000-05:00

I cannot believe my eyes. My little blog has been recognised for this wonderful award. The more appreciated it is, as it has been
given to me by THE GEM of this community herself Alpha Buttonpusher whose blog I read almost religiously. No one should
miss INduCed MEtaMoRphOsis.

The recipient of this award is recognised for:

1) The Blogger manifests exemplary attitude, respecting the nuances that pervades amongst different cultures and beliefs.
2) The Blog contents inspire; strives to encourage and offers solutions.
3) There is a clear purpose at the Blog; one that fosters a better understanding on Social, Political, Economic, the Arts, Culture and Sciences and Beliefs.
4) The Blog is refreshing and creative.
5) The Blogger promotes friendship and positive thinking.

The Blogger who receives this award will need to perform the following steps:

1) Create a Post with a mention and link to the person who presented the Noblesse Oblige Award. (done)
2) The Award Conditions must be displayed at the Post. (done)
3) Write a short article about what the Blog has thus far achieved – preferably citing one or more older post to support. (see below)
4) The Blogger must present the Noblesse Oblige Award in concurrence with the Award conditions. (done)
5) Blogger must display the Award at any location at the Blog. (done)

What this blog has achieved so far? This is a question... I hope it has achieved the main goal:
to raise awareness of autism and ruin some myths. The "sub-goal" is to share the way I deal
with my daughter's disability, the positive attitude towards it despite the obstacles and
creativity of parenting it demands. The nature of an autistic mind. I hope...

1) Autism - Myth and Reality
2) About a girl who didn't like love
3) How Goth culture helped my autistic daughter
4) Have you got an autistic bone in you?
5)Something to read

These are the blogs I chose to pass the Noblesse Oblige Award:

1. LIVE WRITE DREAM - poet and writer who's comedy just made it to stage
2. My Live... lived my way - for his humour and such a modest heroism
3.The Yes (Woman) - for her incredible honesty and insight
4.The Road To Here - Squirrel Queen's images and thoughts constant flow of
food for thought
5. Riding The Short Bus - for Kat's insight, sharp language and humour

Something to read

2009-04-10T08:31:00.000-05:00

There are so many questions to ask when you
first hear the diagnosis of autism. All I new 5
years ago was "Rainman" and my daughter did
not fit into that character at all. As the word
was spoken during the biggest hype blaming
MMR all the doctors where happy to send me
home and deal with it in fear of another hate
campaign against them. I had to beg for tips
and resources and find my answers myself.

Along my search, I found a book which taught
me more than any psychological article ever
could.

"Nobody Nowhere" by Donna Williams is the
ultimate guide to autism. Dubbed by publishers
The Extraordinary Autobiography of an Autistic,
leaves not much more for me to add.

Donna described her first 26 years of life in this
volume. Born in 1960s Australia, she was first
diagnosed psychotic rather than autistic. She
suffered from abuse and negligence. She was the
"crazy girl". She was erratic, ecstatic and withdrawn.

You can observe how she developed many ways
to cope with the outside world. She created two
personalities, to deal with different situations.
She became a perfect mimic and parodist in order
to communicate with others.

Donna left home in her teens as her family could
not manage her. This was a start of a long journey
to her self recognition. Through even more good
and unfortunate events she found herself in England
where she finally broke down. She found here
professional help. At the age of 26 Donna was
diagnosed with autism and numerous digestive
disorders. It took her ten long years of therapy to
start functioning rationally and comprehensively.

"Nobody Nowhere" was written during the first year
as a means to put her life in order. The manuscript
was left behind in Britain and "accidentally" published
(Donna's own words). Within months the book reached
status of a bestseller worldwide.

Since then Donna wrote 9 more books, a few screen
plays, films, recorded CDs with her own music and
songs, she paints and sculpts. She became a teacher,
and a lecturer.

For me Donna is an icon and hope. An example
that against all the odds, autism doesn't have to
stop people from leading a fulfilling, rich life.

Visit Donna's home page to learn more about this remarkable woman.
http://www.donnawilliams.net/

Somewhere in the mist

2009-04-09T14:03:00.000-05:00

I find it not exactly easy to express my feelings to
others. I usually keep it in. Take all in, soak like
a sponge and then... Then there is that one drop
too many and I EXPLODE. Like a volcano - all my
frustration is blurted out in both languages with
accompaniment of doors and pots, sometimes even
stomping my size 2 feet (not much noise there so
I don't do it too often). It lasts roughly 5 minutes and
I'm back to my normal, laid back self.

The point is, I know exactly what I'm doing, why and
what upset me. I am aware that I choose to be so.

The different story is with my little girl. Being autistic,
she not only has the difficulty expressing her feelings.
She is very affectionate towards the close people to her,
but those who she doesn't know - well, she lacks empathy.

I remember an incident in a park. We were walking past
a little crowd gathered around an elderly woman who
collapsed. We found out someone already called 991, so
there was nothing more to do. What struck me, Cirwen
looked at this woman she talked to everyday about her dog,
and says: "Oh, she's dead." and kept walking. Just like this.
No emotion, no empathy in her little voice (6 years old at
the time).

I froze inside. Am I bringing up a cold hearted tiny person?
Is she pretending to be sympathetic towards us because
she was told that's how she should feel?

We had a chat later at home. She couldn't really explain
what she felt there, in the park. In her logic, the woman
was very old (which really meant older than me), so may
be it was her time to go. She didn't feel sad, because it
was just a lady from a park, whom she barely knew, and
she had no place in Cirwen's immediate life. She was not
bonded or used to this person, therefore, there was no
emotional attachment. She didn't feel sad, because the
lady had a "long life already". It was just pure logic. Not
inhuman - just reasoning of a six year old who took three
years to be able to sit on her grandmother's lap. That's
how difficult it is for her to bond with people. What
follows, that's how difficult it is to let herself to get
emotionally involved even with the family members.

No, she isn't a cold hearted beast. She is eleven now and more
opened to everyone. She can brave an "I love you" and adores
her little brother. Yet, she refuses to talk about the "bad
days" at school, she is very easily offended by other kids. These
are the sad feelings she is afraid to express. She knows now
she is different than her friends, yet sometimes, despite my
reassurance that different is good, beneficial, she wants to fit
in. Just a little bit.

And then there is the mysterious "I'm sad... I just don't feel
myself today" . I haven't discovered yet, what it is. I have
to wait till she finds another words to describe what she feels.
Till then a hug must suffice, my love and kiss on the hair.

There is a very affectionate, warm and loving person in my
Cirwen. At the moment however, she is still in the mist of
confusing actions of people she knows, disorienting feelings,
looking and testing for what can be harmful or safe.

One day, I know, she will find her path to come out of
the mist and bloom.

My Dad said that, so it's true!

2009-04-05T12:37:00.000-05:00

Do you remember that time when your child started
to question everything? The endless, tiring "Why? Why?
But why?" causing the constant brain storm to find the
right answer and biting your tongue to prevent this
annoying answer rolling to the tip of your tongue I heard
so often from my father - "Because I'm your Dad and
I say so!"

Usually this time comes (I think) around the age of 3
or 4. I waited for this to happen, and it didn't come.
Cirwen turned 5 and we still didn't hear once asking
"why?". We both thought it was so strange. We
were explaining things around her when we thought
she should know how the world and people work.
Although she seemed interested in what we were saying,
she just took the information with this passive acceptance.
No questioning. In the so typical for autistic people
naivete and distance to the outside world she assumed,
that these two big people looking after her must know
everything and never are wrong.

I tried to provoke the question by asking her "Do you
know how/ why etc. ..." Or just asking her why she
did something hoping she will start at least to copy me.
No. nothing worked. She would express her interest or
not and she would explain (if she could) the reason for
doing something, but she would still never ask.

It came to the point that one day, my husband played
with Cirwen and her fairies and by the end of the game
she was convinced that Dad is Santa's elf helper and
Mum is the Tooth Fairy... There was no return from
this because Dad said that so it had to be the truth.

This got us thinking. Since then, my hubby started to
tell her incredible load of rubbish just to force to at least
question whether it was true or not. Sometimes I thought
it was a bit cruel, because some things scared her.

She wouldn't touch a key for a good few days, because
Dad said that there is a point in her back, where he can put
the key in and her legs will fall off... I did give him a row
for it as I had to put it straight and explain Dad was joking.

Next were stories about mum's and dad's super powers,
dolls coming to life when you turn your back on them
and many more. Gradually, she started to come to me
after my crazy husband cooked up another mad lie and
ask "Is that true?"

You see, we have that innate ability to read facial expressions.
We can often hear that false note in some one's voice and
a humorous twinkle in the eye which give away the fib or
joke. Cirwen, like others with autism was born without this
ability, therefore she relies on the cold words she hears.

Cirwen was about seven years old when the first "Why?"
ever came out of her mouth. I was beside myself! Two
years of applying both my provocative and my husband's
shock therapy finally worked!

The second aspect of her curiosity, I think, was the fact
that she settled down well at school, started her first
friendship and dared to open a little more to the world.
I noticed then, that she withdrew to her own dreamland
less and enjoyed more talking to others as well as trying
to make jokes of her own.

I'm not sure if she secretly still believes in some of those
stories... A year ago, she asked me if, when she becomes
a teenager she will get her own super powers... So there
I was with the dilemma. Do I tell her again it's all a bunch
of c**p? Or say "yes" and risk she'll repeat that at school
and be loughed at? In the end, I said "We'll see..."

I thought "She's only ten years old. We all need a little bit
of magic in our lives. After all I, myself hope one day
I will see a fairy!"

Cirwen has been gifted with wonderful imagination.
There's no need to kill it.

Off topic...

2009-04-05T03:42:00.000-05:00

Cirwen - The name is originating from Caerdwin - the Welsh goddess
of hunting. Meanings: fair, sacred, beautiful star.

The legend says Caerdwin used to hunt in the Celtic forests using her
magical bow. Usually she would take on the form of an animal as
a disguise. Her naked beauty in the full moon light seen by the mortal
eye was a sacrilege. Those who saw her hunting in her true form were
struck with her arrow and joined the spirits of the woods.

For the fans of World of Warcraft - the choice of this name for our
daughter has nothing to do with this game!

Draco - The constellation in the northern sky, also the smallest star
in this group. Meaning: little dragon.

According to one of the legends, all dragons turn into a star in this
constellation after they die. Draco was the last and youngest dragon
to join the sky.

For the fans of Harry Potter - the choice of this name has nothing to
do with Draco Malfoy! (although I'm waiting to be called to school
and be told he had a fight with Harry... bets I won't keep my face
straight?)

World Autism Awareness Day - 2 April 2009

2009-04-01T14:33:00.000-05:00

The purpose for this day is to raise
autism awareness within communities
and especially governments all over the
world.

It is time for the local and global authorities to
recognise Autism in total of it's spectrum as
distinct from other conditions.

Due to the fact that the needs of autistic adults
and children are often not understood, they
suffer negligence and inappropriate social care.

According to the National Autistic Society, the
research suggests that autism costs UK £27.5
billion a year. This could be greatly reduced if
correct support was in place.

We need the local authorities to initiate urgent
planning, dedicated resources, and policy
development.

Look out for events in your communities which
will be happening today.

Copy and add the badge to your blog for today
and STAND UP FOR AUTISM.

Please watch the video. I don't ask for your
money - that's someone else's responsibility.
I am asking for your understanding.

Do you have "an autistic bone" in you?

2009-03-31T17:24:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

The Black Baloon - Review

2009-03-28T08:16:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

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

Andy Warhol - the famous eccentric

2009-03-25T05:26:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

Mother's Day

2009-03-22T19:18:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

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

What a beautiful day!

2009-03-19T14:13:00.001-05:00

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

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

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

Live Write Dream

Paint Brush

jennn's blog

A Modern Housewife's Hints & Tips

Pwn Star

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

Read and enjoy

How Goth culture helped my autistic girl

2009-03-18T09:24:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

About a girl who didn't like love

2009-03-16T09:33:00.000-05:00

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

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

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

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

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

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

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

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

Autism - Myth and Reality

2009-03-12T16:53:00.000-05:00

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

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

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

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

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

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

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

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

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

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

-They can't build relationships
Well, again it all depends on personality,
severity of communication problems etc.,
however I do know some who are happily married
with children.  Remember that some so called
"normal", (although I prefer the term "typical"),
people stay single or face relationships
difficulties.
 
-You can cure autism
If you think that you can rewire the brain like
they did in your house, you're in the science-fiction
area at the moment.  Autism is a lifelong neurological
condition.  All you can do is teach your child social
skills, help them understand people's behaviour
and the reason for it, and hope they will manage
when you die.