Easter brings good news

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.

Do I cope...? How?

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

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....

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

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

Autism Service Dogs Part 1 -- Meet my guest

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....

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

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 ?....

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?

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 -

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:

Coping with emotions

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

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

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

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

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

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

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

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

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

It's a jungle out there...

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

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

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

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

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

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

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

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

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

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

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

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

Back on track

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

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

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

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

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

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

... And the fall

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

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

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

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

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

Success!

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

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

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

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

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

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

Busy, nervous and excited

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

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

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

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

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

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

Social skills

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

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

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

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

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

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

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

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

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

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

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

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

Hypersensitivity

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

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

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

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

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

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

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

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

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

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

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

Time

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

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

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

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

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

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

Induction - Day one

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

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

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

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

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

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

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

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

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