Here are some articles about my daughter Valentina I posted on my previous blog.
My life with an autistic daughter, part 1
My life with an autistic daughter, part 1
We lived in
Italy when we adopted Valentina from a country in Eastern Europe. She
was a two year old, blond, tiny little girl when we met her. She was born with a cleft palate and heart problems.
She could hardly walk and couldn’t speak
at all. At the orphanage they told us
she might have hearing problems as well, but when they called her name aloud
she turned around. Our interpreter had
told us that other families from different European countries had already seen
her but nobody had adopted her. We did. We thought her problems could be easily fixed
in a good Italian hospital.
When she
arrived in Rome she had a medical check up and the doctors told us she was
underweight, but healthy. They scheduled
an operation in two months’ time, to close the gap in her mouth, and another
operation in six months for her heart problems. In the meantime they checked her hearing
because people with a cleft palate can have hearing impairments as well. The diagnosis was severe deafness. She had to wear hearing aids and start speech
therapy.
All right, I
thought: she is deaf. It didn’t seem to
be such a big problem. Deaf people can
have an absolutely normal life and communicate using sign language. I put her in the waiting list of several
Therapy Centres in Rome. One of them
called me shortly. They said they
preferred the language approach instead of sign language. They started to teach her sounds and words,
matching them with photos, pictures and toys. For example the therapist showed Valentina a
toy apple and said ‘apple’. Valentina
was supposed to say the word or at least repeat a sound. I was present during her therapy sessions: she
said nothing most of the time.
After a year
she uttered casual sounds from time to time and I started to think she couldn’t
match the words with the objects of the pictures. She couldn’t even call me mamma.
Whenever I
complained they told me she was improving.
“Deaf people
always behave like this,” they said, and what I should do was practise at home using
the same kind of approach.
Once one of
the therapists gave me a list of about 40 words we had to rehearse with her
during the Christmas holidays. We were
distraught. How could Vale do it if she
couldn’t utter even one whole word?
I asked
about sign language again but they said that that was not their approach.
At home
Valentina was very demanding and unsettled. I thought it was because she had lived in an
institution till she was two and she needed time to adapt to us.
We had three
other children who had welcomed her and had played with her from the first
moment they met. I still remember she
was crying desperately when we arrived home after a three-hour flight, but she
stopped crying as soon as she saw our children.
Love at first sight. She was so
small, with curly blond hair and blue eyes.
Her harelip was barely visible.
I soon
noticed that she didn’t play like other children with her toys and she wasn’t curious
about children’s books. She played in a
strange, different way, putting books on a line, piling them up and forming
patterns with her toys. Sometimes she
threw things around wildly and angrily for no reason at all.
I tried to
teach her to tidy up as I had done with my other children. But most of the time she refused all teaching
and rules. I thought she needed time.
At the
therapy centre they asked us to look for a neuropsychiatrist because they
hadn’t one. We found a good one and met
her regularly.
Two years
passed. I started to worry because Valentina wasn’t speaking yet and she seemed she didn’t
understand what I was saying either. Her
behaviour was still awful. She would suddenly run off in the street,
scream and lie down on the floor in shops, or follow strangers. At home she made a mess with all her things
and broke all her toys. She used to
bounce up and down our bed and spin around for hours. I couldn’t leave her alone for a minute in
case she broke something or hurt herself.
Valentina
went to school only in the morning and I had to take her to therapy three times
a week as well. I started to complain. But the more I complained the more people
blamed me. I mean everybody: relatives,
friends, teachers and therapists. They
said we had been wrong to take a fourth child, three were enough. And what did we expect from an adopted child? They all have problems sooner or later. After all there was nothing wrong with her,
they said, she was only deaf. What was
all the fuss about? She misbehaved
because she was spoiled and because she couldn’t speak yet, but she would speak
soon and everything would be fine.
I felt
empty, frustrated. What I was doing was
never enough. I was neglecting myself as
I had never done before, not even when my first and second children were little
and the third one was only a baby. But
they had followed me, learned from me, stuck to my rules. Valentina didn’t. Was there anything wrong with her?
My
experience of disabled people was very limited: a few friends in wheelchairs,
some of my students affected by Down’s syndrome. There were no disabilities in my family or in
my husband’s family.
At the
hospital where she had had the operations they suggested she might have the Di
George syndrome or the CHARGE syndrome, but she had blood tests and they were
negative.
I read a few
books about deaf children and about Autism, a word that some people muttered
seeing Valentina because she had no eye contact and didn’t like to be touched.
I learned
that deaf children can be very unsettled before learning to communicate. What about sign language? “Why? She
can learn to speak,” the therapists told me. But she still wasn’t speaking at all after
three years of speech therapy.
The
information I read about the Autistic Spectrum Disorder fitted like a glove to
Valentina. I asked the doctors if she
was autistic. They said she wasn’t
autistic: she had only some autistic traits that were disappearing
quickly. Couldn’t I see how much she was
improving?
She had
improved but her ‘autistic traits’ hadn’t changed.
She was
still so demanding and challenging I felt I could cope with her less and less. I was confused and tired.
My husband
supported me and helped me as much as he could. He was angry too, because he saw there was
something wrong with Valentina but nobody was telling us what it was.
The other
children suffered from this situation as well. Sometimes they told friends and grandparents
we had no time for them because we were always with Valentina. They still helped us with her, playing with
her or catching her when she ran away. But they were children as well.
My life with
an autistic daughter, part 2
Valentina
started to attend mainstream nursery school when she was three. She was in a
small classroom with twenty other children and two teachers, one of them to
support her. They had big problems with
her. She was very unsettled and her
behaviour was dangerous for the other children.
I asked for
help from social services but they said there was no money. The neuropsychiatrist said she needed to play
with other children as much as possible. The therapy centre suggested we should employ
someone for her in the afternoon so she was never alone.
Four years
had passed. I felt exhausted. I stopped working. We paid someone to stay with her in the
afternoon so she could go to the playground, have a walk and go swimming. She also started sign language at school and
her communication skills improved a little.
But her behaviour didn’t change much.
Our questions
became more pressing. We wanted a
diagnosis. We needed it, to give a name
to the endless tiresome efforts we were enduring and to know what our future
was. But no one had an answer.
She was six
and the doctors and therapists hinted that maybe she was retarded because of
what she had suffered in the orphanage. But
they also said she could change, suddenly improve. And after all it wasn’t such a big deal.
Nasty
rumours also went around saying that maybe we abused her in some way and that’s
why she misbehaved and didn’t improve much.
We must be poor parents.
I saw no way
out, except abandoning her to an institution. But she was our daughter; we didn’t want to
give up on her.
Finding no
answers in Italy, I looked for them abroad.
I called the
British Embassy in Rome to ask information about the disability help schemes in
England. They sent me a booklet and I
could easily see it was much better than in Italy, though services could change
from area to area. Valentina might have some chance in England.
My last
attempt in Italy was to take contact with a special school for deaf children. Valentina had to pass a test and they sent us
a report a few months later. When I
asked if she could attend the school they said there was no place for her. They said she had a lot of behavioural issues
and they already had some children with problems.
It was
hopeless.
The therapy
centre she attended said Valentina needed more time and then she would improve,
without doubt. I still wonder what they
meant. They wrote a single-sheet report
in which they said she was retarded.
I and my
husband hadn’t got a minute for ourselves since she had arrived. One of us had to take care of Valentina all
the time: weekends, holidays, anniversaries. After five years we felt anxious, exhausted
and vulnerable. Our family was
crumbling.
We decided
it was time to move. The whole family
was at risk. We found out that Maths
teachers were needed in England. My
husband applied for the PGCE course at the University of Cumbria and gained a
place. We could keep our jobs in Italy
open, taking a year off. We decided to
move to Lancaster.
In June we
came for a week and handed in Valentina’s reports, translated in English, to
White Cross. In a few days they
suggested a Special School for deaf children in Preston and they said they
would organize the transport.
It was
another world.
We moved to
Lancaster in July 2007. In a few months
she had a Special Needs statement and in a year the assessment that said she
was autistic. I felt relieved. Her problems had a name and it was not my
fault.
At Royal
Cross Primary School in Preston they taught her to communicate with pictures:
PECS, something unknown in Italy. Her
communication skills improved greatly.
Now she points and uses BSL and pictures to communicate. She has a great visual memory I had never
known about, which is typical of autistic people. She can still be frustrated, angry and
unsettled but now I know why she is so and have learned some good strategies
and distractions to cope with her.
Attending
meetings for parents with autistic children I became aware we shared the same
experiences. I was not alone, a unique case on the earth, but in good company.
At the F.ASD group, which meets at the Cartmel centre in Morecambe once a
month, they gave me all the information I needed to apply for assessments and
benefits.
We also
attend the NDCS meetings in Lancaster where Valentina can meet other similar children
and have a bit of fun.
After two
years in Lancaster we had respite care once a week to help us cope with her and
have some time for ourselves and the other children as well.
Last year
her behaviour deteriorated and she became aggressive and totally unsettled. We asked for a medication to calm her down a
bit and improve her concentration. It is
working very well: her awareness of what is around her and her sign language
have improved greatly.
Next year
she is starting secondary school. We
found the Loyne specialist school in Lancaster the ideal place to support her
and help her improve her skills now that she is becoming a teenager.
What I had
experienced in Italy seems all a misunderstanding now that I have found the
solution to our problems. I have learned
a lot from this experience and I am very grateful to all the people who helped
our family to cope and live with Valentina.
Valentina’s fashion mania
My autistic daughter
Valentina is very much influenced by the artistic and fashion trends prevalent
in our family. She is a teenager now: she likes drawing and painting at school
and dressing up at home. I bought her clothes from charity shops and dug into
the family wardrobes and drawers looking for skirts, dresses and blouses we
don’t wear any more.
Some time ago she
habitually wore several layers of clothes, such as two or three skirts and tops
at the same time. Now she mixes them in very inventive ways: she can wear a
long sleeveless dress with a woollen hat or a soft toy frog on her head and
tights for gloves. She zips and wears two coats together or uses tights as hats
and blankets as tops or skirts.
She really enjoyed
Halloween last October, playing with lights and decorations, especially
pumpkins, and dressing up in Halloween costumes from mid October till
Christmas.
Unfortunately she also
rips a lot of them or changes the parts she doesn’t like by cutting them off
(e.g. she hates sleeves, ribbons, belts and buttons) or asks to sew them up
(e.g. she can’t stand cuts in skirts and dresses).
I took some photos
(here attached) and I look at them from time to time, enjoying her incredible,
unpredictable creativity.
A poem on
Valentina
Here is a pantoum I wrote when I moved to
Lancaster. The cathedral mentioned in the poem is St. Peter’s
cathedral in Lancaster.
She spins around
(for
my daughter)
the
spike of the cathedral cuts the blue sky
clean
pure walls build my house
let’s
wait and pray
I can
fly in the fresh air
clean
pure walls build my house
a
child running from one side to the other
I can
fly in the fresh air
your
words give me a reason to live
a
child running from one side to the other
her
screams pierce my ear
your
words give me a reason to live
calm
her down
her
screams pierce my ear
she’s
banging her head on the wall
calm
her down
let
your mind relax
she’s
banging her head on the wall
hold
her tight, she’ll stop
let
your mind relax
each
day has its troubles
hold
her tight, she’ll stop
raise
up and walk on
each
day has its troubles
her
small hand rests in mine
raise
up and walk on
comfortable
shoes are suggested
her
small hand rests in mine
it
will soften the hard climb
comfortable
shoes are suggested
she
is so moody
it
will soften the hard climb
never
mind about others
she
is so moody
you
will find a way for her
never
mind about others
they
will finally understand
you
will find a way for her
our
days are so thin
they
will finally understand
in
the boundless Universe
our
days are so thin
let’s
wait and pray for Him
in
the boundless Universe
the
spire of the cathedral dives into the blue sky
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