Saturday, 17 April 2010

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).


  1. A very informative post Libertine, you have brought up a subject to which I had never given much thought.

    To me the role playing would be an excellent form of escape from all the cares and troubles of the outside world. I certainly don't think of you as a crazy nerd as I would love to try something similar.

    If we are to take care of others shouldn't we first take care of ourselves.

  2. Whatever works for you. All sounds good clean fun!

  3. A dedicated parent like you deserves all the fun and fantasy she can get.

  4. Having support systems can be the difference between surviving and thriving.

  5. I've never done LARP but I know quite a few people who do, there are connections between the LARP players and the Living History clubs that we're involved with. In a way the battles that our Living History groups do are a form of LARP, only our weapons aren't rubber ;-)

    I'd love to see pics of your costume if you're willing to share?

  6. Thank you all for understanding and reading :-)

    Mim, I'll try to do some pics, but it will take time as I am not so great with the camera lol