Respite or escapism...?

We all love our children. There is no doubt about that. But.
Yes there is a "but". No matter how lovely they are, how
well behaved, how difficult or challenged, we all as parents,
need to have a break.

For us with children with autism it is a major problem. Our
children will not stay home with a random friend or agency
babysitter. My daughter, for example, although high functioning,
would not let me go to a corner shop without her. I could only
leave home when she was well and truly asleep. At the time
I worked in the evenings and this had to count as my respite,
social life and a chance to talk to other people than my child
or partner. You can't really call it a "break". Different issues
and stress of a workplace still leaves one tired and emotionally
drained. We all need a rest. Peace. Quiet. "My time".

Parents of children with severe autism are mostly 24 hr
carers where the employment is simply impossible therefore
the "pretend" respite of having a job is not an option.

There come organisations like Cygnet Springside.
A organisation providing holiday, respite homes in the country
especially for people with autism from the age of 5 to 17.
The place is children friendly, safe and low stimulus. The
environment provides possibility of socialising, inclusion and
learning. Sounds great, but it's not free.

National Autistic Society is able to provide parents with
government funded respite services. There are a few options here.

Befriending scheme, where a family is introduced to a trained "friend".
The scheme provides a possibility for autistic person to go out within
their home town for a few hours a couple of times a week. Trip to a cinema,
park, or shopping.

There is also an option for short breaks respite, where with the help from
Social services a child or young adult will visit another family regularly.
This is a bit like "holiday foster parents".

NAS also run their own homes within UK.

Having a rest from daily stress, even the routine we have to maintain
for our loved autistic kids is very important.
I, personally didn't use any of these services. Why? For the first few years
of Cirwen's life my job was my respite and occasional trips to her grandmother.
Over there still I was the primary carer, but the change of scenery did wonders.

Later, when Cirwen became more socially aware, vocal and made her first
friend, came sleepovers. We went through trials, mistakes and dramas.
We were always on call in case my girl pulled a tantrum about something
the friend's mum couldn't help. There were times when the "sleepover" lasted
two hours. However, after a good number of trials, the other mum found her
way to deal with my daughter. The girls became best friends, and now us,
mums are best friends as well. She was wonderful. Cirwen was obsessed
with pink, she has to have her bedding in a certain way on the bed to fall
asleep etc. One day Cirwen came back telling me that there were not enough
pink pillow covers, so the other mum made one especially for her... The girls
are in different schools now, yet they still see and text each other frequently.

We were also lucky to have a very good friend, who stayed with us for several
months. During that time he bonded with both of our kids and they named him
uncle. He became now our babysitter. Obviously since we can arrange for
Cirwen to see her friends during the day or a sleepover, we still have her
3 year old brother to be taken care of. Although Little Dragon is not autistic,
he's a handful and hasn't got sleepover friends yet. So, my latest respite, is
something a lot of people would call escapism.

I found LARP. Live Action Role Play. My husband used to play a lot before
we had Cirwen, gave it up for many reasons, majorly the system became too
expensive. Recently, a friend mentioned a system which is almost free to play,
(apart from your personal kit) and off we went.

I loved it! Got a choice of class and race to play, dressed up as an elven mage,
given a latex dagger and off I went into the woods. Believe me, being someone
else in a fantasy world and being able to whack people without repercussions does
the job for me. Yes, the next day my bones and muscles are sore, but my head is
clear and I am ready for action in the real world. Apart from that, I found a new
hobby, which I found quite relaxing. I bought a sewing machine and started to make
costumes. I even got a few compliments :-)

So. Twice a month, on Sunday my dear husband and I pack our bag, take a packed
lunch and go to spend a day in the world of fantasy. Call me crazy, nerd, escapist,
it does the work for me. I have a chance to meet friends, spend the day outdoors,
exercise, and what's the most important give my anger and frustration an outlet by
fighting the monsters physically.

Of course it won't work for everybody. But my message is, even a day away from
our usual surroundings, or without our beloved kids can have a healing power.
Whether it is an evening in a hot bath, book and a face mask, a cinema trip, or
a day of running around a forest with a rubber sword hitting each other -
we all need a break. To stay strong, sane and ready to face the challenge of caring
for our kids (special needs or not).

International Autism Awareness Day

Dear friends, friends to be and random visitors,

Today is the big day for us parents and carers and our autistic children
and adults. Day when we can talk to spread the word of ups and downs
and ask for help and understanding. It is another day to take a chance
and break the stereotypes.

There are events happening all over the world so keep your eyes opened.
UK residents can find the detailed information on National Autistic
Society website.

Remember my friends. Although your pennies will be most appreciated, it's
not essential. The aim of this day is to accept that autism exists. People touched
with autism are here and there is no cure. The least we can do is to make them
welcome in the society, accept and understand their difficulties, and appreciate
their gifts.

IGNORANCE HARMS

Wear blue today to show your support for people with Autism.
Thank you .

News flash: A six year old boy charged with felony

I have read this and cringed. I had to let the world know
about this ridiculous case.

Dallas. A six year old boy with autism has been placed
at school without needed aid and support. Having many
issues including behavioural, hypersensitivities and of
course communication, no wonder he found it frustrating
and could not conform to the "norm".

He was restrained. How?
A 200 lb man SAT ON HIM!!!

Result: the poor boy bit him. And now faces charges of felony...

This is a link to the Facebook group who are trying to petition
the authorities to drop the charges . Please join if you care:
HELP NOW for DALLAS Obanion

Valentines Day and tears...

I know what you are thinking. The same as me if
I read this title: " no one loves me... boo hoo!"
No. Actually, exactly opposite...

You see, this year, my husband, decided to order
flowers and a Valentine card from "a secret admirer"
for Cirwen. He thought she will like it and won't feel
a freak if she was to be the only one from her friends
without a card. I thought it was a really sweet idea.

The flowers came when we were all out, and were
picked up by a friend, who temporarily stays with us.
Cirwen found them and the card with simple "be my
Valentine" message in the kitchen.... and burst in
tears!

I, of course, sat her down and asked what was the matter.
She didn't want to be any one's Valentine, she doesn't want
to have a boyfriend and it felt "too grown up".
Cirwen was so upset by this, that in the end Daddy had
to confess to the whole idea. We explained that, it was
only to make her smile and to tell her that Daddy loves his
daughter.

So here we are. A seemingly innocent gesture turned into
a disaster. Cirwen often expresses her fear of growing up.
With this comes also a fear of the fact, that peers will
expect her to have a relationship. An idea of a boyfriend,
to her, means a lot of uncomfortable things: physical contact,
closeness, a threat to her personal space... Well, she is only
11 and I'm happy she is not looking for boyfriends, however
I really did not expect such a strong reaction...

Thankfully, she accepted the flowers, but the card went into the bin.

On a happier note

Not all lately is such in such a bad state.
There are good news..

Good news No.1
The Academy's Winter showcase was such a success,
that the governors fished out more funding for the
Spring showcase. This will be staged in the school's new
theatre, so the excitement is even higher! (this year
we expect the completion of the new school building).
Cirwen will again take part in the production of the
drama club.

Good news No.2
Cirwen's Learning Mentor has informed me, that she
has nominated my daughter for the Best Achiever Award.
This award is given between 13 of existing in UK Oasis
Academies. My heart grew, when the teacher said, that
she wants Cirwen to be nominated, because she has
improved academically, socially and emotionally in such
a short time despite her Autistic nature and despite the
bullying.

Whether she will be awarded that is another question,
and time will show. I however, am happy and proud
that she at least made it to the nomination.

International Conference

On 26th of March 2010, The International Autism Conference
will take place in Malta.

It's focus will be "New thinking in Autism". It will be attended
by professionals and charity activists, who will be able to discuss
the new policies and ideas of fighting for the well being of people
with Autism around the world.

Read more on:
http://www.autismmalta.org/#

Some trouble, some frustration

Here we go.

School started only 3 weeks ago with a few days off
because British can't work when it's snowing.

(but snow is not the subject here, nor the inability to
cope in winter)

We got two bullies down, two to go.

The school is very cooperative, although it takes time.
Cirwen has toughened up. She manages to ignore the
teasing comments every day, now.

The last two days I spend on the phone to school trying to
speak to someone. Due to Ofsted visit I managed to talk to
Cirwen's Learning Mentor yesterday. There I found, that
one of the girls has been expelled for bullying not only my
daughter.

Another hopelessly long process is filing for re-assessment
of Cirwen's needs. The SEN-co, is talking to relevant LEA
(Local Education Authority), who has to approve this motion.
Even the teacher sounded slightly frustrated, that after 3 months,
she still has no approval. There are two more children
on the autistic spectrum in need of that...

Well, as much as I felt disappointed for the lack of details, or action,
I could not blame the teacher. The system is as frustratingly
soulless to the professionals as to us parents.

sooo we're waiting, waiting, waiting... hoping...