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STEPHEN ANDRADE-MARTINEZ Life Stories: from Skills for Care on Vimeo.
Leo's Journey is introduced by warrior mum, Jo Worgan
This week's Leo's Journey is introduced by warrior mum, Jo Worgan
This is Leo's story.
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.
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,
|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?
Were the school able to offer any support strategies?
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?
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.
|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.
|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.
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?
How far is St Andrews from home?
Do the staff make you welcome?
What about visiting? Is it an open door policy? Allocated visiting hours or do you have to make an appointment to visit your son?
Tell me about the times you visit your son and are told you cannot see him?
Do you think some of the staff pass judgement on you?
How does it make you feel when you’re not allowed to see Stephen?
|A family visit to St Andrews|
Bring my son Stephen home & care for him in our community #bringstephenhome
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.
Please click link below to sign petition to bring Stephen home.
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STEPHEN ANDRADE-MARTINEZ Life Stories: from Skills for Care on Vimeo.