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!!!