Tuesday, 9 November 2010

Do I cope...? How?

This is a question a lot of parents of children with Autism ask.
A lot of parents with children neurologically typical ask me.
How do you deal with it?

I am sure having a high functioning autistic child is different,
than a non verbal, severely affected one, but it doesn't
mean it's much easier.

As I wrote somewhere before, when the diagnosis was pronounced,
it was not a surprise. With that however, came an emotional storm.
Is it my fault? What it really means? What can I do? What the future
will be? Can I do it? I was scared but in the same time relieved I had
a definition to base my parenting on. I went into frenzy of searching
for books, groups, chat rooms, charities... and believe me, back in 2002
there weren't as many.

I learned from books and talking to parents on the National Autistic
Society meetings. These meetings made me realise I was not alone.
Books gave me knowledge and more professional insight into the
condition as well as the field to compare and understand my daughter's

I have and I am still learning while my girl is growing up. Different age,
different problems, different ways to cope for both of us.

All parents need patience, I think parents like me need more of it. People
with autism have no common sense. While you expect from a 12 year old
to intuitively know how to buy a bus ticket, what to do when the bus is late,
etc, you can't expect this from a 12 year old with autism.
Each time, you have to explain in simple, clear sentences what to do.

Believe me it's not so easy. There are moments when I loose it and boil
inside thinking " you are 12! You should know that! When I was your
age..." Well, I take a deep breath or two. Sometimes it takes a cigarette
(yes I know I shouldn't...it's not an advice for others to follow) and start
explaining. Again. I've learned I am allowed to get frustrated.
I am not perfect and I am allowed negative emotions. It's natural and
important to know this! Although I am doing my best not to show them
while talking to my girl as this scares her. I also do take pleasure in the fact
that having to interact, bring up an autistic child forces me to think "out
of the box". Many traditional parenting methods just don't work with
someone who suffers from hypersensitivities, communication impairment,
thinks literally and doesn't like physical closeness too much.

So, I wait for the moment of solitude. When I can rant, cry and scream.
Or blog. Or chat to my husband and just let it go. He gives me his very
laid back attitude and stays always positive. He's my rock.

While dealing with autism, I have to deal with "THE SYSTEM". That
is where my coping skills are needed the most. "THE SYSTEM" are:
the school, the department for work and pensions, the LEA, the medical
authorities and services.

High functioning Autism doesn't have to be crippling. It's the ignorance
and inadequate support system that cripple our children.

If you read my previous posts, you will understand what I am going
through right now. The issue of finding the paediatrics service is still
unresolved. I was told by someone from Children Services how "strange
it was that a 12 year old is not under constant care of a paediatrician"...

During last month I was ( maybe still am) very near to a nervous
breakdown. I am at the point where all resources are exhausted and
the only thing I can do is to wait. The task I hate with a vengeance.
Waiting means to me helplessness, passivity, wondering why the
postman is so late and just not knowing.

So in this passive meantime, I have to keep myself occupied with
something else. Here go my books, but often I can't detach my thoughts
and loose myself in the fantasy world. So I rant here. Blog!
My husband is a bit bored of the topic, so I write on forums and twitter.
I sew. I sew costumes for my friends and myself for the larping. And
I do go to Live Action Role Play where I can physically beat people up
and fuse my frustration.( Playing a grumpy dwarf does help with this.)
What else, I try to take one day at a time, deal with everyday problems
as they come and NOT think of the future. NO LONG TERM PLANS.
That's my motto, as I don't know how things will develop, I don't want
to be disappointed.

Don't forget, I have to think of the well being of my 4 year old typical
son too. He also needs me as much as his sister.

Do I cope? I think I do... How? Mainly by knowing that if I crack, no
one will pick up the pieces but myself. I'll have my husband's helping
hand but if I fall into depression it will be up to me to crawl back up.
I feel too lazy to deal with that as well. So - I stay here. On the surface.


  1. I know I haven't been by your blog for awhile but your always in my thoughts. Even 2002 seems to be the dark ages for really getting services and understanding Autism. I too am a run out for a "ciggarette" kinda girl and I make no apologizes either. We do what we do to get through the day, and I feel you do it well. Some day's we are lucky to be able to stay on the surface. To me that is a true warrior. Because to slip under would be so easy.

  2. Thank you, I am doing what I can not slip. There are better times than now. I am usually very positive and try to treat Cirwen as any other child. I can laught at her mishaos too. The system however, is the cause of negativity and stress. That's what brings me down the most.

  3. Nie zrozumialam nic. Ale spoko, spoko, zaraz slownik wezme.
    Zapraszam Ciociu do siebie, nowe posty, kilka zdjęć i w ogóle. Pozdrawiamy Was mocno. Always look on the bright side of life :)

  4. I take it you are still having problems with the system. I do hope something turns up soon.

    I ran across something just recently and thought of you and Cirwen. Have you read any of Dr. Temple Grandin's books? She is a remarkable and inspiring woman, her website is at http://templegrandin.com/

  5. Hi Libertine, I know you have probably been very busy but I wanted to stop by and say hello. I have been thinking about you.