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?

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...

Coping with emotions

It's been busy still in my Bristolian world.
I have had a very fruitful, so far, meeting with
Cirwen's teachers.

They have expressed a lot of praises. Not only
problems. Cirwen has a very strong personality.
She knows who she is and what she wants. She
also does express her individuality in many ways.
One of the teachers pointed out that this usually
happens with children in years 9 -11, around the
age of 14 -16. In this way my girl appears more
mature. This is what they are drawn to. She may
be interesting but also intimidating, which leads
to friendship or teasing.

It is all understandable, however Cirwen has lost
the ability to judge the behaviour of others towards
her. Any kind of comment or question regarding
her looks or character, she sees as attack and the
act of bullying.

Her own behaviour became erratic. She goes to
school in a very defensive mood bordering paranoia.
She is unable to confront teasing in a calm, rational
manner. A lot of the times she bursts into tears and
leaves the classroom.

Teachers I spoke to admitted there were a few bullying
incidents which have been dealt with and taken very
seriously. Most of the time, however, these are the
cases of almost harmless remarks or bickering. Any
other person would be able to ignore or brush off such
things, yet Cirwen cannot.

Her need to be accepted, fear of confrontation, and
slowly degrading self confidence are overwhelming.
As any autistic person, she finds it difficult to cope
with strong emotions. At this point, she can't cope at
all. Tears appear in her eyes when I ask her to tidy
up her room as she is scared I will tell her off (where
there is no intention from me to do so). Instead of
anticipating something good, she anticipates the worst.

I do not know yet how we will deal with it. At the
moment, when we watch her programs I try to point
and discuss with Cirwen the characters' behaviour
in difficult situations. I'm looking for social stories
as well.

At school she will have a diary to write down her
experiences everyday. Once a week one of the
teachers will read it with her and try to help Cirwen
see the difference between serious bullying and
easy to deal with teasing. Since Cirwen's "specialty"
are words, this should be enjoyable, but also could
help her in making a better judgement of events.

I am still looking for advice and resources. It is
going to be a long journey and time consuming.
But I know we will find a way. We always do...

Secondary school

It is a hard time for everyone to change from
primary school to secondary. For someone
with autism it creates more fears and frustration.
As Cirwen is scared of changes and new things
in general she is very worried about the move.
On the other hand she also is looking forward
to it as she has been allocated a place in our
second choice of school which is the Visual and
Performance Arts Academy. On contrary to
common belief, she is very creative with
fantastic imagination and very good singing
voice. Maths and science is her weakness.

Unfortunately all her close friends will go to
different schools, therefore there is the issue
whether she will be able to make new friends.

I have had a meeting with the new school
SEN-Co (Special Education Needs Coordinator)
a couple of days ago. She was rather surprised
that Cirwen hasn't got the SEN Statement and
was never seen by the educational psychologist.
We had a good chat, where I clearly voiced my
concerns, Cirwen's weaknesses and strenghts,
and both mine and hers fears.

In conclusion, Cirwen will be able to visit the
Academy before the induction day on her own
later this month, to see the classes and facilities.
Then, in July there will be an induction day for
all newcomers, so we shall go and maybe meet
other children who will start with her.

From September Cirwen will be put on the School
Action Plus scheme, where she will be assessed by
the teachers and have some support in the weak
spots. She will be closely monitored, where the
SEN-Co mentioned possibility of applying for the
statement if needed.

There is an option of her being put into a small class
together with other children with learning difficulties.
This worried me a bit as I fear that it would put
an unnecessary label to her name and will make it more
difficult to interact with the rest of the children.

In the end it all seems positive and we will give it a go.
We'll see how it will work. If not, the only other
option is home schooling.

Education, education....

Education is immensly important for all
children, however those on the autistic spectrum
do need more help and different aproach to teaching.
Many autistic people are intelligent on the average
level or higher.

Those high functioning children with autistic spectrum
usually receive the Special Education Statement from
British Local Education Authority. This involves 2 years
of working to IEP - Individual Education Plan, psychological
assessment, educational psychologist's assessment, and
pediatrician's diagnosis. In Britain, children are diagnosed
rather late. Very rarely high functioning autism is recognised
in children below the age of three. Therefore, the statementing
process, starts usually in the nursery or reception class.

Cirwen started to see the pediatrician at the age of four and
the diagnosis of Autistic Spectrum Disorder was given at the
age of four and a half. This was half way through the reception
class term, so only then the EIP could be started.

At the time the focus was put on her speech development,
social skills, numeracy and literacy. Due to the fact that
she could put three words together as a sentence, it was
a challenge. By this time I gave up speaking Polish as her
autistic mind needed things to be called always by the same
word (even now when she goes to her Nanny who refers
to the piece of the bedding as "duvet" Cirwen doesn't know
what she's talking about as at home we call it a "quilt").
The targets were mostly met, and as long as there was a
progress the school was happy.

Cirwen has made contact with children and even made
a friend. The girl lived in the same building as us and
we walked to and from school together, which made it
even easier to tighten their friendship.

After a year of exercising the IEPs, speech therapy
and occupational therapy, The school SEN-Co (Special
Education Needs Coordinator) announced to me, that
Cirwen is doing very well and because her social skills
are almost typical, she still is not three years
behind her peers in literacy (she learned to read very
quickly), and there are no behavioural problems -
the school will be refused the SEN Statement from
LEA. However, Cirwen was still kept on school
records as a special needs child and benefited from
extra numeracy, literacy lessons, speech and
occupational therapy.

Some time later, I made an appointment with SEN-Co
again. Cirwen always failed on her spelling tests. Not
even one word out of ten was right. Until I had a good
look at one of the sheets she brought from school...
There were ten words, spelled perfectly but.. all of
them were written backwards! god instead of dog,
even esuoh instead of house! I asked if Cirwen might
be also dyslexic, but again without further tests, I was
told "noo, it's just a fase..! If it is it's a long one, as
Cirwen still writes a lot of letters backwards!

And so, we help her at home as much we can, as much
she can take. There are days when she comes back home
at four o'clock in the afternoon and doesn't even want
to talk about anything. Just wants to eat and relax with
her games or music. You can see she needs to be alone.

Now we are facing transition to a secondary school.
She is positive about it, although I silently am scared
for her. Will she fit in, will she adjust to new building,
people and routines? Will the kids eat her alive on
the very first day? I shall write more in my next post
what was said on my meeting with the new SEN-Co.

Exams - stress, frustration and fear

Education is incredibly important for all the
children whether they are typical or with
special needs. Finding the right school is
never a stress free task.

The school Cirwen attends is the best in the area
and she loves going there. I have always been
very grateful for loads of support, help and
understanding she has there. Cirwen never was
offered the Special Education Needs Statement
as for this a child has to have developmental
delay in 3 areas (academic, social and physical) and
it should be on the level of 3 years behind their
peers.

While autism is a "learning difficulty" itself, it
still has to be assessed separately. Cirwen's ability
to socialise, lack of behavioural challenges and
mild physical problems were not enough to grant her
the statement.

Despite of this the school used their funding for speech
and language therapy, occupational therapy and
additional literacy and numeracy lessons. However
Cirwen is not a genius, she also is not thick. Due
to limited materials and training of teachers her
academic performance in maths is rather poor. As
many autistic people, Cirwen is a visual learner and
a "doer". Theory of maths goes past her ears and she
cannot comprehend either the question or the verbal
explanation. She gets very frustrated in class as
despite asking questions often it still is difficult to
understand what she is supposed to do.

This week is the SATs week. The nightmare for
Cirwen, who knows that this time she will not be
allowed to ask questions during the exam. Today
is science. She went to school happily, but on the
way she expressed her fear that she might not
understand the questions. My answer to that was,
"Don't worry, you are not failing or passing this test.
Do your best and read carefully. You are bright
so I know you'll figure it out - just don't panic."
She seemed reassured and brightened up and
skipped for the rest of the way.

She was worried the most about the maths test.
It was to our great relief to have found out, that
due to her attainment in maths and the stress
levels it would cause, Cirwen will not sit the test.
She will be assessed by the teacher on the base
of her day to day work. Again I am grateful to
the school teachers involved for this decision.

Cirwen will sit English tomorrow and on Wednesday.
Hopefully, she will do well. I am sure, she will try
her best and both her Dad and me will do what it
takes to help her relax afterwards.