I
am posting here below a full revised version of Living with Valentina and other pieces I wrote on my autistic
daughter in the past eight years. At the end I added some paragraphs to update
her present situation at Fullerton School near Doncaster.
We lived in Italy when we adopted Valentina from a
country in Eastern Europe. She was a two year old, blond, blue-eyed, tiny
little girl when we first met her. 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
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 on the waiting list of several Therapy Centres in Rome. One of them called me shortly after. They said they preferred the
After a year she uttered casual sounds from time to
time and I started to think she just couldn’t match the words with the objects
of the pictures. She couldn’t even call
me mamma.
Whenever I complained or voiced my concerns 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 even
utter a single word?
I asked about sign language again but they said that
it was not their approach.
At home Valentina was very demanding and unsettled. I thought it was because she had lived in an
institution until we adopter her and she needed time to adapt to such a
different environment.
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 like a little angel, her harelip was barely visible.
I soon noticed that she didn’t play with her toys like
other children and she wasn’t remotely interested in children’s books. She
played in a strange way, different from my other children, putting books in a
line, piling them up and forming patterns with her toys. Sometimes she threw things around wildly and
angrily for no apparent reason.
I tried to teach her to tidy up after herself, as I
had done with my other children. Most of the time she refused to learn rules in
general. I thought she just 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 was
already four and still wasn’t speaking, she seemed to not even understand what
I was saying either. Her behaviour was still
awful and she would suddenly run off into the road, scream, 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, from relatives and friends to teachers and even 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 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
constantly 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 helping us or 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.
Valentina had been attending mainstream nursery
school since three years old. She was in a small classroom with twenty other
children and two teachers, one of them there specifically 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 and 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 when 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 awful 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 enough 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 so 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 went to Lancaster 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. After a couple of 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. She started to point, use BSL
and pictures to communicate. She showed
a great visual memory I had never known about, which is typical of autistic
people. She could still be frustrated,
angry and unsettled but I knew why she was so and learned some good strategies
and distractions to cope with her.
Attending meetings for parents with autistic
children I became more and more aware of her problems and I could share my
experiences with them. I was not alone, not a unique case on the earth, but in
good company. At the FASD group they gave me all the information I needed to
apply for assessments and benefits.
We also attended the NDCS meetings in Lancaster
where Valentina could meet other deaf 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, have some time for ourselves and the other
children as well.
After a few years her behaviour deteriorated and she
became even more physically aggressive and totally unsettled. We asked for medication to calm her down a bit
and improve her concentration. At first
it worked very well: her awareness of what was around her and her sign language
improved greatly and she was calmer.
What I had experienced in Italy seemed all a
misunderstanding , we felt we had learned a lot from this experience and were
very grateful to all the people who helped our family to cope and live with
Valentina.
When she had to start secondary school we thought it
was a good idea to find one in Lancaster so she didn’t have to travel far away
every day, which unsettled her very much. We found the Loyne specialist school in Torrisholme,
which seemed the ideal place to support her and help her improve her skills.
Unfortunately they had a lot of problems with her.
She started to refuse the uniform, attacked the other children (mostly
vulnerable children with different disabilities but not severe autism) and was
very aggressive with the staff. After recurring and serious incidents they
finally decided to exclude her permanently.
The authorities found another school, Hillside
specialist school in Longridge and arranged the transport: a taxi only for her
(as she couldn’t cope with other children in the same vehicle) and two escorts,
as one was not enough. We realized that she was becoming even more demanding than
she had ever been before and her behaviour was deteriorating. In a way she was
a typical teenager: rebelling, stubborn, aggressive at time and self-harming.
But it was becoming hard to control her and stop her damaging property and
harming people.
An interesting side that developed during her
teenager years was her fashion mania. She was very much influenced by the
artistic and fashion trends prevalent in our family. She liked 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 didn’t wear any more.
In the past she had habitually worn several layers
of clothes, such as two or three skirts and tops at the same time, regardless
of weather. Now she mixed them in very inventive ways: she could wear a long
sleeveless dress with a woollen hat or a soft toy frog on her head and tights
for gloves. She zipped and wore two coats together or used tights as hats and
blankets or bed sheets as tops or skirts.
She enjoyed Halloween very much, playing with lights
and decorations, especially pumpkins, and dressing up in Halloween costumes
from mid October till Christmas.
Unfortunately she also ripped a lot of them or
changed the parts she didn’t like by cutting them off (e.g. she hated sleeves,
ribbons, belts and buttons), only to ask to sew them on again after a while.
Sadly her behaviour kept deteriorating both at school,
at respite care and at home and was excluded from a few respite care centres
for one reason or the other. For a long period we didn’t have respite care,
which added to the stress. We spent more and more time at home with her as it
was too dangerous and unmanageable to plan any outings; the rare occasions we
did, it always ended with some incident or more stress.
We asked for more help again but nothing definite
was provided. Specialized day school and, when possible, respite care (one
night per week and a weekend every seven weeks) was all they could do. We asked
for a residential placement as we couldn’t manage with her aggressive behaviour
anymore and in the future it would get worse and worse, therefore thinking it
would be the best option for her. Nothing happened.
In the meantime she was assessed by CAMHS and they
said she had no mental problems, only sensory problems so no medication was
added to what she already took. Her behaviour deteriorated further, at school
she had incident after incident, attacking staff and pupils, serious
self-harming and ripping her clothes. They locked her in a room in her worse
moments (we gave permission for it as we saw there wasn’t any other way). At
home she had a similar behaviour and I didn’t know what to do, especially being
alone with her most of the time and not being able to handle her. She did a lot
of damages to the house and hit herself repeatedly. She had bruises all over
her body even on her face as she aggressively punched herself.
Everything became impossible with her. We carried on
in a constant emergency balance, hoping that nothing serious or irreversible
would happen.
In August 2014 I commuted from Lancaster to Woking
for my new job at an international school. It was a fulfilling and rewarding
job I thoroughly enjoyed. We asked for a residential placement again in Lancashire
as I was away three days a week. After several months they finally said they
couldn’t do it and gave her two respite care nights per week. We barely
survived and Valentina had very bad moments. The school asked for emergency
meetings and for more meds, but the people responsible for it had no solution.
We miraculously managed to end the school year and
moved to Surrey. Here the assessment was quick and efficient. They gave us 52 weeks
residential school and placed her in a temporary five days a week respite care,
which gave us time and energy to work full time during the week. In the
meantime they looked for the residential placement. It was heaven compared to
what we had in Lancashire (and it was heaven in Lancashire compared to what we
had gone through in Italy). In November the respite care became full time
(seven days a week) so we could completely relax in the weekend and at
Christmas we could fly to Italy to spend time with family and friends, which
would have been impossible with Valentina as moving to unfamiliar environments
unsettles her.
This was definitely a big change in my life; my
career soared compared to what I used to do in Lancashire (a few hours of
Italian tutoring in adult education and private lessons). I started a proper
job, highly satisfying both from an intellectual and a financial point of view
(which is not to be overlooked as two of my children were at university). The
reason why I could achieve all this was because my family supported me (above
all my husband), especially in taking care of my autistic daughter Valentina
when I was away.
Having five days a week without Valentina changed my
life completely. Finally I could dedicate time to my career and plan to widen
my horizons. Also all my other children were away: my eldest one graduated and
now lives and works in Leeds, my second studies at Edinburgh University, my
third one started Physics at Oxford University. My job as a full time mum had
ended; I was going to have much more time for myself, which was definitely a
new phase of my life. This hasn’t happened since I got married and had my first
child twenty-four years ago.
The full time respite care facility where Valentina
spent eight months was a fifteen minute drive from our house, Ruth House in
Mayford Green. This was a temporary placement till they found a proper
residential school. We went to see her regularly, at least twice a week.
She had an apartment and two members of staff with
her day and night. We realized she was happier and more settled in a place
where she had stable routines and could arrange the space around her in the way
she liked. The staff were exceptional, they were flexible enough to meet her
needs and firm enough to give her rules and routines she was comfortable with and
needed in order to stay safe. They also had great fun with her at times when
she arranged her clothes in a fashionable and unique way, or mixed olive oil
and ketchup with everything (even grapes and ice cream), or when she spread her
favourite food (e.g. salami) on faces and shoes as an alternative to cream
therapy, and even when she flipped her faeces around, giggling defiantly. They
missed her when she left.
It wasn’t easy to find a residential school for my
daughter because of her challenging, aggressive behaviour and her habit of
stripping her clothes. None of the schools in Surrey or nearby accepted her,
but after a few months the Hesley Group, based near Doncaster, said yes.
Members of staff visited her several times, observing her for days, then in
April 2016 the transition was arranged. It took about two weeks to move her
from one place to the other with members of staff from Ruth House assisting her
in Doncaster. Finally she had a permanent place to stay and we could go and see
her in her new home.
We have kept visiting her every 3-4 weeks, more
often during holidays. We have also the
chance to spend the night there as they have accommodation for visiting
families at school and, if we stay for the weekend, they offer a great full
English breakfast in the school canteen. We found her more and more settled
every time we went. At first she seemed unwilling to attend school, as she had
been out of school for months when she was at Ruth house, but then she was
happy about it and her communication (mainly BSL, PECS and Makaton) has
definitely improved. At school they have sensory rooms, a gym, a canteen, a
computer room adapted to her needs. We visited the school with her, she looked
proud and happy to show us what she did and where she lived. She also showed us
the houses where her friends live and where she had previously had a party.
They adapted the house to her needs as well, nailing
the table and her bed to the floor, buying special plastic chairs filled with
sand so she can’t throw them to the staff and getting rid of the furniture or
colours she didn’t like. They also built a bungalow for her as they realized
she was uncomfortable in a two storey building. Her eating habits improved, she
accepts a wider range of food and has proper meals instead of grazing the whole
day as she used to.
The school is in a village so she can go out in the
community, to the hairdresser, to the restaurant or cafe and go shopping, of
course, one of her favourite activities. We went shopping with her once; she
absolutely wanted a pair of tiny snow boots so she tried them several times but
realized they didn’t possibly fit, finally she opted for a number of DVDs she
carefully selected.
At Halloween she had a treasure hunt at school and
managed to collect all the pieces of a skeleton scattered around the place and
assemble it. For Christmas there was the assembly, the party and Santa’s
grotto. She enjoyed most of them and looked happy and settled in the school
community. We also went to the restaurant with her before Christmas with some
members of the staff. She went to the toilet to change her clothes several
times but on the whole was settled. The members of staff who take care of her
have long shifts (from 7 in the morning till 9 in the evening, then there is
the night shift) so she doesn’t change too many people in a day, which used to
unsettle her. They are very dedicated to her and know her very well now. In fact,
they have also become family to her.
We would like to see her more often but living so
far and working full time makes it very hard. We think she is happy where she
is and, being 17, she needs her own space like our other children. We miss her
sometimes despite her challenging and unpredictable behaviour, she is an
essential part of our family and we wouldn’t be who we are without her.
We had a wonderful weekend before Easter with
Valentina, the whole family met there, my eldest son with his fiancée from
Leeds and the other two, the other daughter and the other son, back from uni.
The weather was gorgeous so we spent all the time in the garden playing with
her and having fun altogether. Valentina was overjoyed, relaxed and delighted
by having so many people around her. When we finally left, she was clearly sad
but accepted it. We promised to take her a scooter next time, I showed her some
pictures on my smart phone and she cheekily pointed at the real one, the motor
scooter, but we made it clear that we would go for a simple manual three-wheel
scooter.
Before summer she moved in her new house, a bungalow
they built just for her, a cosy two-room house with under floor heating (so she
isn’t tempted to dismantle the radiators), very spare furniture and decor and
special blinds. She has a nice garden around and direct access to the school
playground from her back garden. She still loves creating and wearing funky
outfits and from time to time she can still be unsettled. Her core team knows
how to deal with her problems and she looks very accustomed to them and to the
whole environment of Fullerton now. A year has passed since she moved there and
I can see how much she has improved from living in a place where they meet her
needs and know her patterns. Being a normal family, we could have never tended
to her in the way they are doing now, and it would have inevitably burned us
out. She is a special young lady after all.
