Tuesday, 26 April 2011

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.

Thursday, 7 April 2011

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...

Thursday, 31 March 2011

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.

Wednesday, 30 March 2011

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!!!

Tuesday, 9 November 2010

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

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"...

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.

Monday, 18 October 2010

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....

Tuesday, 12 October 2010


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

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