Warrior Mum - Leo's Journey

Teenage son with severe autism sectioned in psychiatric unit.
#bringstephenhome

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STEPHEN ANDRADE-MARTINEZ Life Stories: from Skills for Care on Vimeo.

This week's Leo's Journey is introduced by warrior mum, Jo Worgan

 

It was an absolute honour when Michelle approached me to introduce this week’s warrior mum. I first had the great privilege of ‘meeting’ Leo on twitter. We instantly shared a bond as we both wanted change to happen with regards to bullying and online abuse aimed towards those individuals who are on the autistic spectrum, we both felt so passionately about this as we are both mothers to sons who are autistic.

Tom, my little boy, is now 6 and was diagnoses with Autistic Spectrum Disorder at age 3. However Tom’s early interventions and access to specialist autism provision has been dramatically different to the experiences of Leo’s son, Stephen. I was horrified to learn that Stephen was not placed into a specialist autism school until the age of 11 even though he is severely autistic and as Leo states in her story, as a result of this “he screamed and banged his head24 hours a day. It was nightmare” No child should have to go through this and nor should the family. How was this allowed to happen? Early intervention as we all know is key for our children who have autism and Stephen was not allowed this, through no fault of the family, they fought to get help and services put into place but like many other parents’ who have autistic children these basic rights were denied.

Leo at present is fighting to get her son placed into a specialist autism residential unit, at the moment he is in a psychiatric ward, hundreds of miles from home. He has been sectioned under the Mental Health Act but as Leo clearly states, this is wrong. Her son is autistic, not mentally ill. Her son is kept indoors, drugged up and is denied access to his family during visiting hours once a week if the staff deem that he is not ‘well enough’ to see them.

This situation is barbaric. Here is a young man who needs specialist autism intervention and professionals who know and understand him and instead he has been placed into a psychiatric unit were the staff have no knowledge or training around autism. This is unacceptable. Stephen’s basic human rights are not being met at all.

Leo’s story deeply affects me, although my son is much younger I worry about his future and how things will change when he becomes a young man. Will my voice no longer be heard just as Leo’s has been silenced? Will his human rights be disregarded? This frightens me tremendously.

Stephen is a happy and bright young man, full of energy and love. You only have to take a look at the photographs to see the special bond between him and Leo, this young man has so much to offer society and he should be enjoying life. Instead he has in essence been locked up and kept away from the rest of the world. Leo is not accepting this and neither should we. 
This is Leo's story.
 

"My son is so loving and caring. When he sees me arriving on the ward he has this amazing beautiful smile. Then, as I am about to go he changes, too sad and too upset. And it just breaks my heart that after years of struggling for specialist care and stability in Stephen’s life, that my son is living indefinitely on a psychiatric ward and nobody seems to care." 

I was born in Madeira, Portugal in March 1964 and have two brothers whom I adore. My childhood was somewhat dysfunctional. I had a mother who either did not care what was happening around her or because of my father’s violence was too afraid to do something about it.

I ran away from home when I was 16 and went to live with the most amazing and my most treasured woman in my life. The woman was my great aunt, whom I had loved since I was a small child. I then went to school and college and came to England when I was 19.  

One year later I had the news my father had committed suicide. 

At 23 I was married and at 27 I had my first child, Jamie. She was my world. When she was four I had my second child and my number one man. Stephen was born at 38 weeks, weighing ten and a half pounds; a normal delivery and he was very healthy. 

My son developed very well and was an extremely happy child. By the time he was 14 months he could say 24 words in 3 different languages: Portugese, English and Spanish. 

Stephen's baptism

By 17months, right after my son had the MMR, he became very very ill with a soaring temperature and convulsions. It went on like that for exactly 3 months. Doctors did nothing, and I knew immediately that the MMR had caused it. My son could no longer speak. He pointed at everything. He could no longer ride his mini bike, walk up the stairs or climb on to anything. He cried and cried, screamed non-stop 24/7. I would go to doctors, hospital, paediatrics, and nothing or no-one could help or do anything, 

It went on like that until Stephen was 3. He went to nursery for 2/3 hours but they were not able to cope with him and he was at home all of the time. The head of paediatrics would call me paranoid telling me to go home, that my child just being naughty and wanted attention. I knew my baby. And I knew that was not the case. But still no-one would listen.
 

Stephen

Stephen with Mum and sister, Jamie

 When he was almost 7 the educational psychologist finally diagnosed Stephen with autism. He went to a special school but not one that specialised with autism. 

Stephen's Holy Communion

Jamie and Stephen

Were they able to meet Stephen’s needs?

They had no specialist training with autism and did not understand why he behaved the way he did. He screamed and banged his head 24 hours a day. It was a nightmare. He would not sleep for weeks and then suddenly when he became so tired he could hardly stand up, he would sleep during the day.  

His behaviours became worse and worse as time went by. When he was 11 we finally got him to an autistic school. But by this time he was becoming a teenager and stronger, he would hit us and would break everything in the house. 

Were the school able to offer any support strategies? 

School was brilliant at helping. We were lucky that he was in a classroom where his teacher was taking a PhD in autism. She would put in place some ways of coping strategies. But apart from the teacher we had no help for years and no support from social services.

Stephen travelled to and fro on school bus but that became impossible when he was 13 and we then had to drive him ourselves. It was a very dangerous situation as only one of us would drive him. One day he undid his seat belt and hit his father. His father lost control of the car and was very lucky no other cars were on the road. But his father had a head wound. After that incident the education department organised a taxi with an escort, but they would send a driver with no patience and one day Stephen had a meltdown in the car and the driver stopped the car and hit him. So I decided - no more. I began to travel with him on the school bus. 

When did the social services finally come your assistance?

I got pregnant with my little boy. I lost all my calm and went to the social services. I was so worn out and angry. At least they took some notice because we were offered one night a month at a respite home for moderately disabled people. By that time Stephen was fifteen and a half and that placement broke down. They could not cope with Stephen and eventually refused to take him. Stephen had two staff looking after him there and they could not cope. But I was alone with him at nights and two other children and they left me to it. So by the end of summer at almost 16, we sought legal advice and found a solicitor that specialised in children’s needs to look into Stephen's case.

Did they sit up and listen to you?
The solicitor wrote to Islington, got all the notes, but not much response to his enquiries. He wrote again, this time giving Islington 48 hours to respond, or he would go to a judge. He had the judge already in hand, but having received that letter, amazingly, it took Islington just a few hours to get their act together.

Stephen was given a place in a residential school for children with autism.

A tender moment with Jamie and Josh.

Tell us about Stephen and what he likes?
Stephen can't hold a conversation but he can make himself understood, when he wants to go to the park, to the shops, to the toilet, have a bath. He loves his bath in the morning and shower at night. If he does not have this routine what little sleep he normally has is disrupted.  

He loves horse riding, rock climbing, swimming and long walks and by long walks I mean for 2-3 hours.  

  

 

He loves music and dancing to it. Bruce Springsteen, American anthems, and jimiraqui are his favourites. But he loves karrang radio, Pop music, and most importantly he loves classical music. He can name any composer you put on without telling him who it is. 

He likes cartoons or video music on the TV.

Enjoying time with Jamie and Josh

He has all his favourite bedding from sheets to duvets to covers. He has his cuddly toys, Lion king, Bambi and pingu are his favourites. He loves his photos and wall poster. He has a photo with princess Ann and him in her helicopter, and posters and things from David Beckham and Cristiano Ronaldo. He met David Beckham many years ago, and to this day he remembers.  

He loves going to Heathrow and Gatwick to see the planes land. Loves trains and likes to go to a station and see them arrive and depart. He loves going to the sea side and going on boats. Obsessed with it.  

He loves his clothes. He prefers jeans and nice t'shirts and shirts if he's out. At home he likes sweatpants. He loves his trainers and any kind of boots and also his loafers.   

He’s very particular and loves to be clean. He’d NEVER have a beard. If he is dirty he will ask to change his clothes and wash his hair, Lol. He likes his favourite perfume; Calvin Kline.  

The same for his underwear; if Carers give him pants that aren’t Calvin kline, he says "No! No Stephen." Lol. And they have to be boxers. 

He sure sounds like a boy with a big personality. How wonderful that he settled in the school. 
 
 It was an autism residential placement in Barnham, Norfolk. At last we felt Stephen was in the right setting. He loved it there. He had all that open countryside and forest to go walking for hours. He loves the freedom of being outdoors in the fresh air. However, he'd been there for two years when he nearly died from a serious head wound; a self injury that none of the staff witnessed happening. 
I got a phone call at about one in the morning from the school. They said my son was in hospital and I needed to get there as soon as I could. The neurosurgeon was waiting to consult with me over Stephen's medical treatment. When I arrived the surgeon began to explain that Stephen had a very large haematoma and was close to putting pressure on his brain. He said they would have to drill a hole in his head and drain the blood out, and although dangerous, without the op, his condition would deteriorate further. He said it was a very simple procedure - but it did not turn out quite like that. 
Post operation, my son was very ill and still bleeding heavily.  The surgeon decided he needed to repeat the procedure and drill into Stephen's skull again. And again, twice more, then Stephen kept loosing blood. The hospital decided to call in a new doctor who arranged another scan and saw the bleeding was coming from much deeper under Stephen's skull. So one more op, and drilled deeper in, and that's when my son lost 3 pints of blood, and was very very ill in intensive care for two months. After that he went back to his residential school. 

Were you happy for Stephen to return to the school?

Yes. On the whole the carers at the school were amazing: I loved those guys and my son was normally very well cared for. They were like an extended family and adored Stephen. Sadly 10 months after returning to school the managers told us they could no longer keep Stephen. They admitted their school was not the place for Stephen's complex needs. They gave me two weeks to find somewhere else for my son to live. We were heartbroken.

Social Services told us that the best place to put my son would be at St. Andrews. We were assured at the time that it was an autism unit. We were also told medications would be stopped, he'd be given a special diet, psychological intervention and therapy would be put in place.

Needless to say none of this happened.

How far is St Andrews from home?

It’s in Northampton so it’s about 80 miles. We go on the M1 and it takes an hour and a half to two hours, depending on traffic.  

Do the staff make you welcome?

Well they are quite friendly. There's one or two who sort of make me feel guilty for Stephen's behaviour, but generally they are nice people. The trouble is they have no knowledge of how autism and behaviours work, so in other words they are not trained in autism, and certainly not on severe autism. 

What about visiting? Is it an open door policy? Allocated visiting hours or do you have to make an appointment to visit your son?

It's a 2 hour visit by appointment. However, we have never spent the two hours with Stephen. We arrive and are made to wait sometimes 30 to 40 minutes. And the appointment is on a Sunday 2 to 4. 

Tell me about the times you visit your son and are told you cannot see him?

We arrive and I go in to the hospital reception and the person on reception calls through to the ward. Then, I am put on the phone and told by a member of staff that visiting will not be possible, the reason being is that Stephen is having a not so good a day. 

Are you able to challenge that decision?

There have been times when we have been told visiting is not possible but a member of staff agrees for me to just go upstairs and say hello, and as soon as my son sets eyes on me he breaks into a run towards me with open arms and the most beautiful smile.

There are occasion when I am allowed to see him for 10 minutes and I get there, and he is a zombie, catatonic, with so much medication. And no one tells me what medication he's on or shows me any notes. Again, it's a hospital policy not to share that information.

Do you think some of the staff pass judgement on you?

Usually we are turned away by the same member of staff. He is the one who makes me feel guilty; that it's all my fault my son is having a meltdown. He offers me no explanation as to why I can't see him.

Have you complained about Stephen’s rights to see his family being violated?

Their policy for Stephen is the same as the others patients. It’s a psychiatric hospital and Stephen was admitted under Section 3 of the Mental Health Act. If Stephen is not so happy, no matter if it's mild, they, the staff, follow the Mental Health Act policy and this is what needs to be lifted. One member of staff that I like did go to managers and say the act is unfair on Stephen, because Stephen is not mentally ill, he is autistic and therefore the Act 3 should not apply, but no can do, they refuse to budge. And no matter how insistent I am to see my baby, they still say no. 

So you’re not turned away from visiting Stephen for the sake of your own safety?

No not at all. My son is loving and caring and when he sees me arriving on the ward he has this amazing beautiful smile. Then as I am about to go he changes, too sad and too upset. And it just breaks my heart that after years of struggling for specialist care and stability in Stephen’s life, that he is living indefinitely on a psychiatric ward and nobody seems to care. 

How does it make you feel when you’re not allowed to see Stephen?

I leave all the things I brought for Stephen at reception and off I go with my heart breaking. I am so happy on my way to visit but come back in bits. I know my son, and I feel he thinks I abandoned him.  

A family visit to St Andrews

Finally, what would you like to see happen, not only to improve the quality of Stephen's life but also to give the whole family peace of mind?   

Well, at the moment Stephen's social life is non-existent.

He was put in a self-harming ward, not an autism specialist unit. It also turns out that they do not have an autism unit for over 14s, so he was placed with drug addicts, alcoholics. There are no late teens in his ward. All individuals on the ward are aged over 25 to late 40. Stephen is locked up 24:7. If my son is not having a good day or is unsettled they won't take him out into the grounds, this is a huge space which Stephen would love. He goes for weeks and months without going outside into the grounds. For the past 15 months he has not been taken out into the community.

So I would like for my son to have freedom and to have a fulfilling life; to go out in to the community and be able to cope with social situations. To be near his family and one day perhaps even come back and live at home, where he is very much missed and loved. I would love to see my son sit at the dinner table, where I still sometimes absentmindedly set his plate. I want my son back..

Petitioning Manager LD Sue Powell and 2 others

This petition will be delivered to:

Manager LD

Sue Powell

Nhs islington

Director of services

Simon Galczynski

 

Bring my son Stephen home & care for him in our community #bringstephenhome

Leo Andrade

London, United Kingdom

My son Stephen is 19 years old. I love him to bits but right now I am desperately worried for him.
He has autism and finds it hard to communicate. For over a year now he has been living in a unit at St Andrew’s Hospital, Northampton, which is 80 miles from our home in London.
He has learning difficulties but he is being kept under the mental health act at a psychiatric unit, with patients much older and with a range of different conditions.
He has the sweetest smile but since he has been there I haven’t seen it once. It's not the right place for him - even his consultant agrees he should not be on the mental health register and should be moved somewhere more suitable.
We have to travel miles each weekend to see him and sometimes we only see him for a few minutes, sometimes we travel all the way to see him, only to be told that we are not allowed a visit. And other times he has been put on so many drugs he just falls asleep. It's is heartbreaking to have to leave Stephen there. He is covered in bruises and has gashes all over his head from where he has hit himself from being anxious.
Right now the local authority is reviewing where to place Stephen. They want to move him to another hospital in Colchester but that won't solve anything.
We want Stephen to have a better quality of life; to be able to spend time outdoors, to be around his family more often. Ideally we want Stephen to live with us as a family with the support of carers. He should also be taken off the the mental health register, so he has more freedom for how he lives his life.
Other families who have loved ones with autism have successfully fought to have them live in homes with specialist carers near loved ones. And the Government made promises that people with autism and other learning difficulties should be cared for in their communities with the help of their families but this promise is being broken for Stephen.
Stephen is being let down by the institutions that are meant to be caring for him - locked up in a hospital and lost to a system that wants to tick boxes instead of care for my son.
Stephen deserves to be allowed to live a life in safe place with carers who understand his needs and surrounded by people that love him.
Please sign my petition and help my family but most of all help my son.

Letter to

Manager LD Sue Powell

Nhs islington

Director of services Simon Galczynski

I'm calling for NHS islington & islington Social services to bring my son closer to our family home, not have him hundreds of miles away!

Please click link below to sign petition to bring Stephen home. 

#BringStephenHome 


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STEPHEN ANDRADE-MARTINEZ Life Stories: from Skills for Care on Vimeo.


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