Living with Valentina

Here are some articles about my daughter Valentina I posted on my previous blog.

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