Warrior Mum - Nina Ni's Journey

A16 year-old son with autism sectioned in hospital hundreds of miles from home.

Just imagine you apply to live in the UK under the Highly Skilled Migration Programme.

And just as you imagined, the UK affords you a decent life with good prospects.

And just imagine your son develops autism and in his teens presents challenging behaviour and at times is unmanageable.

And then on top of all that just imagine that they send your teenage son 200 miles away to a locked hospital ward where his mental health deteriorated so much that he began to self- harm and develop bed sores..

You can’t imagine it, can you?

It’s unimaginable isn't it?

Or it used to be.. 

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.

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. 

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. 

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. 

Me and Jeremy Hunt 

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. 

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 29^th 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 3^rd 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 16^th  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

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 3^rd 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! 

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.

Last photo of Tianze at home in April 2014

November 15th 2014

                      We are suffering day and night ..

We just visited my son this evening, however visit with my son is less than one hour again.

During our visit, Tianze asked us to write a calendar from since he was admitted in the ward from 6th of May and count how many weeks he has been in the hospital. 
It is 28 weeks! 
He asked us when he could return home...we can't answer his questions.....when his mood is lower, he always try to pick something from what people say, anything anybody says could upset him. He began to complain his stay has been too long. He grew very agitated and started to bite himself again...then the staff pulled him back to his ward and terminated our visit. 

His right arm is swollen and blue .....his left arm is  less swollen, however it is still blue; his leg still has deep red injury mark there. We had a meeting with local authority this week on 11th of November. The local authority would like to apply for guardianship toward my son to further remove our rights. We already feel so powerless and now they want to completely silence our voices.

My son is suffering day and night and waits daily for news of returning home to Scotland. We too are suffering day and night. It is our home, we are a family and should have basic rights to a family life. Since Tianze has been in this hospital, he's never had one visit home, not even a few hours.

I read in the newspaper that people tried to bring the prisoners' children into jail to spend weekends with their Mum or Dad. That means even prisoners family life rights need to be respected, however my son is just autistic and has no rights at all....

From the hospital door I walked slowly and heavily toward my hotel room. I saw two sides of street lights that flash on the grey sky as if it is a big cross on the heaven......I pray for God ...Jesus ....you are powerful, we trust you, when can you help us end our suffering  ........Please save our children!!

  

M. Nina, it's been an honour interviewing you even though your story is very sad. I hope the powers that be in Fife accept responsibility for Tianze's care and put together an appropriate care package which will allow him to return home to family life, as is his right, and to acknowledge and respect his culture with his parents.  

 

Bring my autistic son, Tianze, back home to Scotland.

Petitioning Chef Executive of Fife Council Mr.Steve Grimmond and 6 others

This petition will be delivered to:

Chef Executive of Fife Council

Mr.Steve Grimmond

social work

Mr.Steve Caven

Doctor

Dr.Cakrabarti

Minister for Public Health in Scotland

Mr.Michael Matheson MSP

Consultant Child and Adolescent Psychiatrist

Dr.Jan Esparon

First Minister of Scotland

Nicola Sturgeon

First Minister of Scotland

Nicola Sturgeon

nina ni

Glenrothes ,fife, United Kingdom

My 17 years old son Tianze has autism, a learning disability and sometimes behaviour issues.
We live in Fife, Scotland with Tianze together happily for ten years but in May 2014 Tianze was moved to a hospital in Middlesbrough, England to make assessment. It was only supposed to be for maximum 12 week assessment but he is still there. It has now been over 27 weeks. Since there is no residential placement in Scotland ready for him, then after finishing the assessment in August, he stuck in hospital.

Every week we have to travel more than 200 miles to see my son in England. It is 12-14 hours journey for a two hour supervised visit. It is not only exhausting but also financially difficult. We are a British Chinese family in Scotland, family life is central to our culture. My son misses home so much. He loves music, so he has written a song called "Back Home" that he sings everyday to me. Every time, when we finsih this two hours visit , we have to good bye, it is always heart broke for both of us.
He wakes up in earlier morning at 4 AM to cross one day off from the calendar and counting the days back home daily. Now he asks us bring his toys, his cloths back home in Scotland in each of our visiting time since himself can't return back home. It is just so heart breaking.
When Tianze is stressed, his behaviour can deteriorate and since he has been away from home his self-harming has gotten worse. Currently his two arms plus one leg are full of his self injury marks while before hospital there is no any injury marks in his body.
The Government promised people with autism would be given the best possible care in their communities. Instead Tianze has been severely let down by the institutions who are supposed to be helping us and he needs to be back with his family where he belongs.
We want the same for Tianze. Please help bring my son home for Christmas.
Thank you so much to the many thousands of people who have supported my petition so far.


12,650 signatures so far.
Please sign

Petition to bring my autistic son, Tianze, back home to Scotland



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