Sunday, 16 July 2017

Living with Valentina: my life with an autistic daughter

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
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 on the waiting list of several Therapy Centres in Rome.  One of them called me shortly after.  They said they preferred the
language approach instead of sign language and 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 then 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 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.

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