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.

I should know that, shouldn't I?

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

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

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?

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....

Tweetathon

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

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

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

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:

More praise for Cirwen!

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!

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

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...?

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

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 .