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Autism awareness march in Edinburgh - 2008 |
On 28th of April, 16 year-old Tianze was at home, laying
down happily on the living room floor when the staff from Stratheden Hospital
in Fife came to ask him to go to hospital for one night. Tianze had to attend a
mental health tribunal next day but promised after tribunal, he can come back home
....Tianze said: "No, even one night, I don't wish to leave my home
...."
Then the staff said; "You have to go now! If you don't go I have to use
police."
Tianze still didn't wish to go ...
Then the staff left home to allow Tianze finish his lunch at home ...
Then they back again...
Tianze still didn't wish to go ..
Then they called police....
Tianze was removed to go to hospital in Fife, Scotland, by police on 28th of
April 2014.... And he hasn't been home since....
How SAD I am as a Mum..
After Tianze was removed home, my husband talked
with me, he said: “The birds in the tree was singing and asked where is Tianze
now? Where is Tianze now”?
My heart was sinking down as if it was a kind of
unlucky omen….
Did people really explore every alternative
before considering my son’s admission to hospital ---I feel NO. Fife council
didn't provide any home support plan and child support plan before hospital
because had they done so my son would not have been sectioned.
M. Hi Nina, welcome to warrior mums. Can you tell us about your younger days?
I was born in 1963 in the countryside of Hangzhou, which is a major
tourist city in East China, close to Shanghai. China was still very poor and
babies hungry. I didn't have milk when I was baby and was only able to drink some rice soup. When I was born, I live with my
mum and my grandparents, uncle and my aunt without my dad.
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My parents |
My mum was suffering and starving as well. The government forced my
mother to lose job when she was pregnant with me and after I was born, my mum was forced to go to
countryside to live with her mother and father in law and their family, while
my dad had a job some distance away from my grandparents family.
When I was 5 years-old, my dad worked very hard to move my mum and
myself and one of my brothers, who is 2 years older than me, to Jiaxing 150
miles away so we could all be together as a family. Jiaxing, is well known as
the 'hometown of silk and fish and
rice’, hence
it is a famous producer of textiles and woollens and one of the world's largest
exporters of leather goods.
I had lots of interests as a child. I enjoyed reading, writing, sports,
and loved swimming in the river in front of our house. I spent all summer
holidays swimming in the river and have lots of happy memories.
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Student at Beijing Normal University 1984 |
I graduated from Beijing Normal University in 1984. After I graduated
from the university which is a king university in China, I immediately began
teaching in university in Hangzhou China at the age of 21.
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MBA IN GERMANY 2002 |
I was very proud for my academic achievement.
I published my first book in 1986 when I was only 23 years old.
My book was republished in Hong kong in 1988.
The co-author of this book is a famous reformer and think tanker of previous Chinese president in 1980’s in China.
Since the 1989 TianAn Men students movement, my book has been forbidden
to put in book store in China.
I met my partner in Chinese New Year in my dad's home with introducing
from a friend. I was 30 years old and in China 30 is an old age for a woman, so
I was eager to marry and did so in 1993 just four months after we met.
In November 1997, my son was born same place as me in Hangzhou, China.
He was a small baby, only 2.5 kG. We called him Tianze, which means God bless.
At that time, Chinese government 's policy was only one child per
family so Tianze is an only child.
M. Maybe you would like to tell us what made you decide to come and live in the UK?
In 2004, our family immigrated to UK under the highly skilled migration
programme offered from UK government. The Highly Skilled Migrant Programme
(HSMP) was a scheme, which has now been phased out, that was designed to allow
highly skilled people to immigrate to the UK for work or self-employment It was
different from the standard UK work permit scheme in that applicants did not
need a specific job offer in the UK.
At first we lived in Tunbridge wells in Kent, with a Christian family
who kindly accepted us into their home for 3 months. The couple were in their
70s and we very much enjoyed our stay with them and Tianze was so happy and
presented no problems whatsoever.
He soon learned to speak English and adapted quite well. Early 2005 Tianze was diagnosed with
high functioning autism. I found a job in Scotland and our family left England
to start a new life with a home of our own.
Tianze did well in mainstream school considering English is his second language and he has autism. We settled down and made Scotland our home. In China because of the books I'd
written and my involvement in human rights, my passport had been taken away for
10 years. Now, here in Scotland, with my MBA degree I manage my own limited
company free from an oppressive country like China that will never affect my
son.
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Me and Jeremy Hunt |
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I feel I have achieved a lot in my life and strive to be the best that I can be. I'm a member of The Conservative Friends of the Chinese and often get invited to social events at Downing Street. Last year some friends and I had lunch with Jeremy Hunt and his lovely wife.
My Mother’s dream was to come and visit us. Each day she would wrap a
parcel in preparation for the long journey so in April 2007, I flew to China to
accompany my parents to Scotland for a holiday. It was my mum's first flight;
she was 82 years old and my dad 83.
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My parents on a visit to Scotland from China |
My dad had flown once before to visit me in
Germany when I was studying there. They lived with us for half a year and Tianze
adored them both.
My mum passed away six months after returning to China. My dad is still there;
he is 90 years-old this year.
M. I understand Tianze did well at school until he reached the seniors, can you tell us what happened?
Tianze had one classroom assistant's support who followed Tianze all the
way through his primary school. He built a very good relationship with this
classroom assistant. She came to attend Tianze's birthday party every year
except this year when Tianze had to stay in hospital on his birthday.
But after this primary school, Tianze is in special unit in High school to
begin his senior education but cannot cope with the noises, especially the
school bell.
After
a few months his behaviour began to deteriorate. He was then sent to a local
special education school. After a settled year
in John Fergus (2011), his behaviour deteriorated in April 2012 following an
obsessive behaviour episode that happened in school. He began his destructive
behaviour at home and in school, for example
damaged his toys constantly, and did not sleep well, kept his eyes shut in school
all day long. He stopped
speaking and wrote everything down on paper. His doctor decided to prescribe Risperidone
in June 2012, to ease his behaviour issues. However his behaviour issues were
not totally addressed by the prescribed medicine. After summer holiday in
2012,Tianze refused to attend John Fergus school totally and was based at home. At last it
was decided that he
should attend a different school specifically designed to care for pupils with
Autism. This school, The New Struan, is located in Alloa, Clackmannanshire.
This school is an hour’s drive away from Tianze’s home and offers optional
boarding facilities from Monday’s to Friday’s, for the pupils who attended and at that
time it was 39 weeks provision boarding school .
M. Were
you happy Tianze was going to get the specialist care he needed?
I
was relieved but another new school was a lot for Tianze to cope with. He was
given a trial period in New Struan in December 2012, and during this period,
I drove Tianze to school and waited in school until he finished his school day,
and then transported him back home again. I did this for a month and then began
introducing him to one night’s sleep at the school a week and then two until he
was staying four nights a week and sleeping at home Friday, Saturday and
Sundays.
Tianze finally entered as a permanent boarder in May
2013 and experienced relatively settled period. He continued being treated with Risperidone until
October 2013, when it was found to have produced side effects revealed by blood
tests, that he had developed increased Prolactin. His consultant from Stratheden Hospital, instructed us to dispose of the Respiridone
immediately. At the time we did not realise the effect sudden medication withdrawal could have on Tianze.
The
next two weeks he received no medication and this period without medication
coincided with the October school holiday when our son was at home with us.
During this fortnight his behaviour deteriorated
dramatically and he began damaging his home; pulling the doors off their
hinges, breaking the dining room table and all the lamps because he did not want any lighting in the house. It was
as if we had a human made earthquake each day. We had no follow up support from
hospital to monitor his drug withdrawal or psychiatric nurse visit and we didn’t
know where to turn. One day in desperation we called 999 but still ended up
taking Tianze to the local A & E in our car. There was no emergency help
and no support from the
local authority, or from social work department and NHS. At
the hospital he was admitted for two days during which time he was given Diazepam
which sedated him.
Tianze’s
consultant then prescribed Aripiprazole which began to be given to him by the
end of October 2013 but it didn't seem to suit him. A helicopter crashed in Glasgow which then made Tianze anxious about helicopters and every time he heard a loud noise he imagined it was from the helicopter. The result of this stress led to serious behaviour issues and Tianze damaged his bedroom in the new Struan School. He then became a day pupil whilst waiting for his bedroom to be repaired, however, Fife Council did not want Tianze to return to the school. I drove my son to school and back every day which was a four hour journey as well as trying to run a business to keep a roof over our heads. Tianze continued as a day pupil until the Easter holidays when we were left with no home services.
Earlier In February 2014 he had damaged the
bedroom at Aberlour, a place he had used for respite (one weekend in every six) since 2012 Both Aberlour and the New Struan School decided
Tianze could no longer stay with them.
During this time period his behaviour was
continually a problem and he found it difficult to adjust to returning
home on daily basis again since he just adapted to having previously become a
weekly boarder at the New Struan School.. As
soon as he became agitated he requested we take him to Victoria A&E,
which resulted in his
being admitted to Victoria Hospital A&E several times during two
weeks Easter Holiday period in 2014. He was totally confused and looked upon this hospital as his new respite. During the final time
that this took place the doctors at the Victoria Hospital A&E department
decided to transfer him to Stratheden hospital in Fife which was on 13th April
2014. However they were unable to offer Tianze a formal assessment and treatment,
and returned him home on a “pass” regularly.
He was called back
for a mental health tribunal on 29th April (when police collected
him from home). Following the tribunal order that day at Stratheden in Fife,
Scotland, Tianze was admitted to Westlane Hospital in Middlesborough, England,
for assessment and for a medicinal adjustment purpose.
They told me that the assessment would
be 6-12 weeks time only, maximum is 12 weeks.
This hospital move was a big mistake
on our part. We trusted the doctors and thought they had our son’s welfare at
heart. We didn’t expect that my son could be stuck there for such a long
time because Scotland have no place to care for him. At that time we didn't have any knowledge about Section 3 in the Mental Health Act. His doctor once informed us in a meeting that in order to keep Tianze in hospital legally that they would have to section him. Sadly my poor son had been
there for seven months and we still didn’t have a care plan to bring him home!!!
M. Was there no possibility
of The New Struan taking Tianze back as a pupil?
New Struan School has now opened up to receive
pupils as borders for 52 weeks a year,
which means that they could offer Tianze provision at the New Struan School,
with a full Care Inspectorate for up to 52 weeks each year, and have sent us a
letter inviting us to consider this for Tianze. Since New Straun staff already know Tianze, and Tianze has already become used to the school, considering Tianze
has attended half a year to in becoming used to this school, then it is no
surprise that Tianze is looking forward to returning to this school as well. Tianze has written a
letter which was posted to the head teacher in the New Straun school to ask
when he can return to his former school, originally he wrote in June 2014 and again he wrote to her on 3rd August
2014 in
Westlane Hospital.
Unfortunately it seems that all Tianze’s needs were simply ignored by the
social workers in Fife. It was such shock for us to learn that the social work
department has refused Tianze to be considered for enrolement again at the New
Straun school, as revealed on the 16th in June in the “Case Review” meeting, held by
West Lane Hospital, when there was not any other Scottish special schools that
had confirmed willingness to offer our son a
place. Of course it all comes down to money and the social worker feels this
school is too expensive. The school wanted the council to pay for bedroom
repair and funding for additional provision of staff but they refused without
first discussing it with us.
If Fife had not refused Tianze’s
previous school (which I spent months helping him adjust into) Tianze could
have left Middlesborough hospital at the end of his 12 week assessment and
returned to his old school. There are no Scottish schools for Tianze. The local
authority approached another autism residential school in England. This school agreed
to accept Tianze, however they need to recruit additional staff to support him
and this takes time to reach an agreement.
Times has passed and now
there is a different rather drastic plan that is breaking my heart.
In October, the doctor in
Middlesbrough hospital admitted that because Tianze has stayed in an
inappropriate environment for longer than they expected (Scotland abandoning him
- my words not the doctors!)) Tianze mental health has deteriorated so much
that he can no longer go to a residential school and needs a hospital
environment with learning disability facility, which they do not have. How sad news for us!!
Before hospital, Tianze
didn’t have any self harming injury marks in his body, however after 6 months
hospital’s treatment, his arms and leg have seriously injury marks ….According
to mental health act, hospital is supposed to help the patient feel better and
they should receive treatment and recover, however they shouldn’t receive such
lack of care that further deteriorates their mental health….
M. Poor Tianze is very
homesick?
Yes, Tianze is a very
home oriented young man, maybe it is partially our culture! We are very much family
oriented culture. As Chinese family, we always live together !
As soon as Tianze
admitted into hospital in Middlesbrough, he began to count how many days he
could return back his home in Scotland. He wakes up at 4a.m. each day to ask a
nurse for a pen to cross one day off from his calendar to count his days back
to home …
He created a song by
himself called “Back home song” and he sing this song to me in our daily phone
calls. After 12 weeks pass and Tianze was still there at the end of visiting
time he he now started to ask us to bring his toys and his clothes back home. He
said since Tianze can’t be allowed back home, Tianze only can allow to let
Tianze’s belongs back home …..
How SAD we as parents
are!! We feel so powerless toward our son. We are just heart broken
My heart is bleeding to
see my son’s swollen blue arm….
Once my son asked for a pillow from home so he could have a familiar smell but it was refused by
hospital and that was the first time we witnessed Tianze self harming. We were so powerless and so sad to see him this way. My heart was bleeding to see my son's swollen blue arm.
Tianze wanted to come
home for Christmas. He was so looking forward to it, however I couldn't give him any
answers. For a boy who needed structure in his life, the monotony of living in a
hospital with two hours a day regimented visiting hours where we are searched
before we can see him; it is no life at all….
M. How do you travel to Middlesborough?
I drive from my home to local train station - 20 minutes and wait 10-15
minutes for the train.
Then it’s Kirkcaldy to Edinburgh then change trains
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Arriving in Middlesborough |
Edinburgh to Darlington then change trains
Darlington to Middlesbrough train station.
The hospital is one hours walk from the station - total from door to
door at least -7 hours.
I need to spend time booking train tickets. I need spend time booking
hotel - sometimes the hotel is fully booked. I walk from hotel to hospital as I
find driving all that way too stressful and my husband, who always accompanies
me, can’t drive.
The Council pay for travel expenses but not overnight accommodation,
which, all in all works out to be very expensive.
I used to drive from Scotland to Middlesborough, however I find it is stressful, I need to concern
road safety and time and lots! So finally I give up driving and choose the
train….
M. You
must feel very let down?
Yes, I feel my petition has upset the hospital
because the doctor said it made my son worse but actually it was the hospital,
full of noises; a totally inappropriate and restrictive environment for
autistic people that affected my son and not the petition.
Finally the doctor decided to move Tianze to
another hospital instead of the residential school that the Fife council had
proposed. The residential school was located in North West of England and after
many meetings and assessments in the hospital the school were prepared to
accept Tianze. I wonder whether my petition upset the doctor so much that he
actually played God when making decisions for my son. I really wasn’t aware of
this kind of power when I raised my petition. I had witnessed another similar
petition which gathered lots of support and so I thought a petition could help Tianze’s
awful situation. It is after all a free country, and campaigner’s rights should
be respected.
The Mental Health Officer (MHO) came to our home also to advise me to co-operate
with these professionals, since he has to collect all information from
professionals to write the suitability report. If all the professionals unite
together to comment I do not co-operate with them, then it will influence his
suitability report.
The latest decision in meeting at Middlesborough on 3rd of November 2014, the
doctor said he wishes to discharge my son into a hospital with LD units.
If Scotland doesn't have any then he needs to discharge him to St Andrews
in Northampton .
The Scottish local Fife CAMHS consultancy doctor also attended the
meeting, as did the social worker and my advocate. The Scottish CAMHS
consultancy doctor said currently there aren’t any hospitals in Scotland with
LD and CAMHS. She said she has contacted all hospitals in Scotland and they
can't accept Tianze. If it needs to setting, it may take times. It could be
months she said she will began to contact St Andrews on 19th of November.
Then the doctor said ideally we need to consider what is the right place
for my son as well as the family contact needs, however if they have to wait
months then it is too long. He will consider transferring my son to St,
Andrews, which could take just a few weeks time.....
I said the time it took to transfer Tianze to St Andrews is time that
could be spent setting up some kind of placement in Scotland and to concentrate
on the latter. We can wait.
I said I know of one Mum, Leo
Andrade, whose autistic son is in St Andrews and she is petitioning to have him
released from there as it provides no specific treatment for his autism.
I also said we would not be able
to visit on a weekly basis, which will further harming my son's mental health
removing him even further from his family and culture.
Finally the doctor said if
Scotland need to take him back, then it needs a plan and a schedule ...and
people need to come here to assess him.
Otherwise the doctor will choose
St Andrews, which is quicker if they have a bed.
However the doctor in
Middlesbrough said it is finally the Scotland's commissioner who needs to make
the decision.
However if Scotland can’t deliver
a plan to setting an NHS provision for my son this Month, then my son is likely
to be sent further South and further from home and that is what our family are strongly against!
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Sad birthday celebration earlier this month in Middlesborough |
When I first arrived in UK I feel very warm that this country accepted us as highly skilled immigrants. I'm personally also very well respected from high level politicians in Westminster.
However, I feel Fife council do not even think
I am qualified to look after my son and I feel I can't even have basic
human rights as a mum in this civilized country, which is huge disappointment and
made me so stressful with the pain and constant worry of losing my son! The reality is that I am
well educated in a King Normal university in China to teach, I am an author and
successful business woman.
My son's happiness is our happiness and I have to remind people that he is not totally incapacitated; he can speak, he can write and express his feelings that he wants to come back home and return to school. However, his voice isn't heard by professionals.
There were two ADI meetings (Adults with Incapacity) held by Fife local authority this year and each time they wish to control us by applying for their guardianship rather than provide a personalised care plan for my son!
A blanket incapacity is illegal and to deny a person's basic human rights through incapacity is also illegal.
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Last photo of Tianze at home in April 2014 |