Wednesday, 22 April 2009

Taming the chaos

My life rarely was organised. I am an opportunist, so my plans
don't go further than next week. Usually what I have planned
doesn't happen, because I found something more exciting to do...
or the plan couldn't be executed due to the unforeseen obstacles.

My decision to go to Great Britain to study was taken within
a week. The plan was to obtain qualifications I needed to proceed
with my interpreting career. Well, I met my now husband and the
plan went to the bin. No regrets. We have planned to get married,
but the date was always unclear. After ten years and two children
it took news of my father's visit and three weeks later my dad
arrived to my wedding.

For my daughter it would not work at all. As an autistic, she is
looking for patterns. They make life predictable and safe. She
does not like radical changes. The unknown for her is dangerous
and even terrifying. Although she was unhappy in hour previous
flat, we took a good few weeks to prepare her to move to a new
house. She was six by then. In order to make it as easy for her
as possible, we explained that the new house will have only one
neighbour next door, which meant there won't be so much noise
at night. It would have a huge garden, where she may find fairies
and play safely in summer. We took her to view the house although
it was a school day, so that she could see what it looks like, see her
new bedroom and the garden. We moved within the vicinity of her
school, so she didn't lose her only friend. We came back several
times to see the house before we had the keys in our hands, just
to help Cirwen to get used to the idea of moving. In the end we
moved 3 days before Christmas and it was great. Cirwen slept
through the night and bloomed.

In spring she complained, that she couldn't sleep in the morning
because... the birds were too loud!!
(It was a nice change after the drunken rows disturbing her in our old place)

Up till Cirwen was about four years old I had to carry her around
almost everywhere. There were places close to where we lived,
were she was happy walking, but as soon as we left the familiar,
she was up in my arms. Only when she was three and a half, I
complained that she becomes a bit too heavy for me to carry. Her
answer to that was
"Please mummy, I don't know where we're
It didn't matter that I told her we were going to town
to have ice-cream. The problem was she didn't remember the
way and was scared she will get lost. Obviously this fear was
stronger when we went on holidays and she didn't recognise
anything at all.

This kind of disorientation and fear relates to everyday life as well.
There are routines and rituals Cirwen lives by and cannot be
missed. If they are, she withdraws, gets confused, unhappy;
earlier it was a tantrum. Every morning I wake her up with
the same phrase, and remind her of what she has to do next.
Not that she doesn't know she has to keep personal hygiene -
she likes to hear it. It's reassuring. She eats her breakfast
and then she watches her favourite program on TV before
going to school. It's kids news. Even the way we get dressed
and leave is pretty much the same.

When she is back from school, she tells me what happened;
always starting the sentence:
"Well, I came to the classroom
and said hello to Miss and my friends..."

The activities later are varied now as she is more flexible and
has more interests. The bed time however, again has a routine.
I still tell her when to get ready for bed and then I used to read
her a story, now she is older and she reads a book on her own.
She still sometimes asks me to read with her. This is how difficult
it can be to change the ritual. I do tuck her in with a little "girly"
conversation. I have to make sure her quilt and pillows are on the
bed exactly as she likes.

This is the most difficult thing to do when we are away from home,
as she can't sleep for a few nights due to the fact that the bedding is
not the same.

Now Cirwen is eleven now and I am trying to teach her
independence, by giving her little chores in her bedroom.
Although she opens the wardrobe and drawers to get dressed
everyday or watches me doing it, she can't remember where they
go. In order to help her to be able to tidy up her clothes and toys,
I labeled all the shelves and drawers. Now she doesn't need my
physical help to keep her room in order.

The lack of short term memory is very typical for autistic people.
The order,the pattern, making notes and labelling is very important
to lead a comfortable, happy life. A lot of autistic adults never
leave their parent's home as they can't face independent life.
Of course there are many who make it on their own, but this
again depends on the support from parents, social services etc.

I hope, that my Cirwen will be able to live on her own one day.
As much as I am scared almost to death for her, I'll do what I can
to teach her to live full, independent life.

I have to say, thanks to my autistic daughter I have learned
to better organise my own life. Well, to a certain point.
I still keep my little bit of chaos for myself.


  1. What a really cool post!! I too have a goal of teaching my daughter how to live independently by the time she is of that she can make that choice for herself. And like scares the lights right out of me. I mean, I will totally panic on her first date...and she already says she wants to learn to drive!! I am not sure I am ready for all those avenues...but I know I have to prepare her just the same. AND it all scares me to death. Just one day at a time...right?
    LOL. It was just wonderful to read this...I don't feel like I am the Lone Ranger anymore! Cheers!! Jenn

  2. Nope, not half-life.
    I'll give you a clue: cake.
    The 10 hours spread over two days but still thats 5 hours a day.

  3. This is a great post!!!! I found it very comforting .... I wouldn't know how to explain it though. Maybe it was the routine?? I am not sure. But it seems wonderful that when you are scared, you can crawl up into your mommy's arms until you get there ....
    You have given me allot to think about today, thank you!

  4. Very interesting post. This is something about which I know so very little and it's insightful to read about it. I imagine it must be very important to keep that little bit of chaos close to you.

  5. I too found this post very interesting. I am learning so much about autism, a subject that I knew very little about before.
    Thank you for taking the time to teach us.
    Oh, and always keep that little bit of chaos close to you, it is so important.

  6. Hi! I have a colleague with a son who also has autism. And I want to give you both a big hug and say you're wonderful wonderful parents! God Bless!

  7. Great post. It is good to hear the victories on a very complicated relationship. It seems as if parents with kids that have autism have this ability to see beauty in everything and love without conditions. When most people get around people with special needs they take on the teacher role but I have found through my work in health care they have a way of teaching you lessons that you have had a lot of trouble learning on your own.

    I've worked with a couple of kids with autism before and its an experience I will treasure for the rest of my life. Thank you for this post it brings back a lot of memories.

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