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:
Monday, 11 October 2010
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!
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.
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."
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?
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?
Friday, 23 July 2010
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.
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.
Saturday, 17 July 2010
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...
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...
Friday, 25 June 2010
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.
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.
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