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

Monday, 11 October 2010

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:

Sunday, 10 October 2010

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!

Thursday, 7 October 2010

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.

Tuesday, 5 October 2010

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."

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?