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
behaviour.
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"...
Ha!
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.
Showing posts with label coping. Show all posts
Showing posts with label coping. Show all posts
Tuesday, 9 November 2010
Monday, 26 October 2009
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...
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...
Sunday, 7 June 2009
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.
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.
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