ADAM    STEWART   STORY
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“ I  AM  WHAT  I  AM “
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Adam Bibby was born on 12.7.84  at St  Mary  Hospital, Sidcup, Kent. He was diagnosed with Down Syndrome and had a small hole in the heart that healed up at the age of 6 months. His mum wanted a son very much and bought him many presents before he  was  born .

His mother was devorced  with 2 daughters and on the second day after the birth of Adam  she found out that he had Down  Syndrome.  After much soul searching she new she could not give Adam the love, care, and help that he would need as he went through life, so he was taken into foster care at the age of 2..3 days old. Although she felt she could not look after him herself she got a friend to go in everyday to look after him while he was in hospital ,after hospital he was put into foster care. in Sidcup.The family he lived with already had 2 children one girl and one boy and he soon became part of a wonderful family, who after his adoption became his Godparents..

Although his mother and her family did not feel they could see him again  they did give him all the presents that they had bought him and his mother made one request that when he was adopted the adopted family give her a Photo of him, which the family did..

Adam was put up for adoption and his details were put into the book “ Be My Parent “. There was no photo of Adam only a few sentences and this is what Greig and I saw when we went to social services in  Greenford  and looked at the “  Be My Parent “ book.

What we read made us decide to adopt Adam. We fostered Adam first at the age of 6 months and at 9 months we adopted him from a judge at the Brentford family court. It was one of the biggest day of our life especially for our 5  year old daughter “ Anne “, who loved her brother very much .

At this point I would like to explain the history leading up to the adoption of Adam.

Greig and I were married on the 7.1.77, on a sunny day in London, we were at the beginning of our married life with dreams and expectation for a wonderful life and a big family. Like all dreams it did not work out quite like that, I had two miscarriages in the first 18 months of our marriage and I was told that if I became pregnant again I would have to stay in hospital for the whole of my pregnancy, which I did and a year later I gave birth to my wonderful daughter , “ Anne “.

Two years later I became pregnant  again  and gave birth to another girl in May 1982, she was beautiful and we named her Sheena, but at birth she had to be rushed into the premature baby unit because she was under the weight of 5 pounds  and they thought I had made a mistake in how many weeks pregnant I was. I said I was 39 weeks. For the first 2 weeks we did not know what was happening  first it was this then it was that  many test were done and after the 2 weeks we were called into the doctors office and   told that our beautiful daughter had Edwards  Syndrome,   which is a chromosome  abnormality  Not only that but we were given a prognosis of 2 months of life for our little girl.

We found all of this difficult to believe and Greig and I dealt with it in different ways , I as a qualified nurse dealt with it clinically  and Greig   went into a bubble and felt that everything around him was not real..  We could have got on with our lives and left Sheena in hospital as she did not have long to live and was severely disabled, but what we did was get her baptised and at the age of 3 weeks we took her home because her weight was 5 lbs and we wanted her to be with the family who loved her until the day she died , which is what happened one week later.

At the age of 4 weeks not 2 months our darling daughter Sheena passed away very peacefully in her sleep at home. It was a very big  shock for all of us especially our little girl Annie as she wanted a sister so very much and she only had her for a week before she was taken back up to heaven.

After giving birth to a disabled child you are never the same people again , the stress of it all can either force you apart or strengthen your love ,for Greig and I it  strengthened our love and made us stronger for what the world had in store for us.

After Sheena died I became pregnant 3  more times and lost all my babies at 11…12 weeks. Before I lost the last baby we were told that because I had one chromosomal abnormality you can have another and I could have given birth to a child with  Down  Syndrome. We told the Dr that if the tests came back that we were having a Downs  child  we  would have that child but we did not have to make that choice.

It was about xmas time and Greig was off getting  presents  everywhere he went he met Downs children or adults. He came home and said do you know I think God is telling us something, how about adopting a disabled child a Downs Child.

I said that as I would be with that child 24 hours a day I would have to be sure that it was the right thing to do, as I would want to give that child the best care   and help that I could so that it could reach its full potential. I did a lot of soul searching and praying and one night I was sitting in the house and I thought what is the difference between having my own Downs child or adopting a Downs child and like a bolt of lightening I new adopting a Downs child was the right thing to do.

It was then that we started the process of adoption and from then we never looked back. Our social worker , “Amanda  Woolam” said that downs children were very quiet and you could put them in front of a TV and leave them. This was far from the   truth, Adam was not quiet and was always on the go.

Our first concern was how best we could  help our child achieve his potential, so we joined a local Downs group.and a charity called Contact a family. We received a lot of benefit from both groups as we were all parents of children with down syndrome, but what we found difficult  from the downs group was,  and other adoptive parents have said the same ,……  when a child is born you are looking for that perfect child when that child turns out to be disabled , then you are grieving for that perfect child also when that child dies you are mourning that childs death..

You have to go through the stages of grief and sometimes not everyone gets through those stages and they get stuck. We were lucky by the time we adopted Adam we had gone through the stages and was focussing on how best to help Adam . Also some of the parents thought we were do-gooders because we adopted Adam, so in the long run it was not beneficial .for us at that time. Although now as Adam is a man and part of the swimming fraternity all the parents from around the world  with down syndrome children who  are athletes have a bond of love and family that nothing can break.

One of Adams main problems was that he had hearing problems so he became a patient of Charing X  hospital . He became part of the child development centre and had access to everything that the centre had to offer….ie….

Hydrotherapy and physiotherapy
Speech therapy
Regular consultation for his eyes and ears

They were so good and over the years they have looked after Adams care and any emergency that came up.

We then looked at other way of helping Adam, these were 3 fold,……..

1. Portage
2. Makaton
3. Integration into Nursery and school

 

!)  Portage
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Portage is a home visiting education service for pre ..school children with special needs  It helps parents support their childrens learning.

I have lived in 3 boroughs over the UK  and each one was different with there facilities and support and providing  cash for the disabled. The London borough of Ealing was good in the main but to help our son ,Pauline had to go on a Portage course  to give him the support he needed .

2) Makaton
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Is a language program offering  a structural multi…modal approach using signs  and symbols for the teaching of communication of language and literacy  skills.

These skills are very important to a downs child , as they do have difficulty in speaking .  At the age of 18 months old Adam became very fustrated because he wanted to say something to us but could not tell us what he wanted. Once he started to use makaton he became a different child, by the time he was   5 years old he had a large vocabulary of makaton., but he only could speak 4 words.

 

1. Integration into Nursery and school.

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There were places for disabled children in council nurseries  and Adam managed to obtain one at the age of 2 years old in Greenford , Middlesex, we were really pleased because it was a mixed nursery so Adam could play  with children his own age with normal ability, but that is not what happened.

After a few months we found that Adam had deteriorated in his day to day activities  especially where potty training  was concerned. We found out that Adam had not been playing with 2 year olds but with babies. I had also asked them to put him on the toilet as he did not like potties but they refused my request so in the end I stopped him going full day and when I finished work at 12pm  I collected him and took him home. I also made sure that when he went to the nursery and left he was put on the toilet.

He started to pick up and was clean during the day by the age of 3years 6 months.

We believed that the best way forward for Adam was in mainstream education and as Catholic’s we wanted him to attend a faith school so we put his name down  at the local Catholic school. The biggest problem we faced was the local Authority , and we new we had a fight on our hands because at the time we were told there was no disabled children in main stream school and one set of parents had to move boroughs to get there children into mainstream school.

We were prepared for the fight and enlisted the help of Mps local counsellors and the Newspapers , in the end we won and Adam became a pupil at the St John Fisher school in Perivale . Greenford  , Middlesex..

We were told  by a counsellor , who is now  an MP in the government  that the only reason  Adam got into the school was because we fought so hard. Adam was there for 2 years and in 1989 we moved to the I.O.W., and that is another story.

 We all moved to the Ise. Of . Wight.  in 1989 and we lived there until 1992. This was the best borough we have ever lived in, the care and the help for the disabled is fantastic.

Adam thrived  , when he went there he could only speak 4 words. But with intensive speech therapy and one to one teaching  Adam was speaking well within 6 months and he dropped  his makaton. Also the disabled had there own consultant  who saw them frequently and often as an emergency. This was the case when Adam became ill with what we though was a  chest infection he was getting progressively worse ,we did not get much help from our GP so we rang the consultant made an appointment saw him the next morning and by the afternoon he was in hospital with pneumonia.

We had no problems with the local authorities and Adam went to the local catholic school. He joined the boys brigade and the cubs, but we did have problems with the cubs until we demonstrated  with a placard  at a boy scout gathering . Greig and I were on a mission ,We wanted to prove to the world that our children were part of  society and if you  gave them enough help care and education, they could then take their rightful  place in society. We now believe more than ever that with the right care training and education our children can achieve the same goals as the ordinary people. But how naive  we were then how young, over the years we have come to realize that our children can never be a full member of society . Because there are 3 things  stopping them from ever becoming part of society and they are…………..

FEAR

IGNORANCE

PREJUDICE   

So our mission now is to continue to educate our children but we have to make them survivors so that they can survive in the society that we have.

In 1992  Greig was promoted and we moved to Farnborough , Hampshire. It was the most   disastrous move we have ever made not only for ourselves but for all the family. The events of the 8 years we were living there will live with us for ever.

At first things went well and Adam entered the local Catholic school, with a wonderful  headmistress  . and  his education improved. He became an alter boy and joined the boys brigade, but this was not the case with the cubs. In our opinion we felt there was some discrimination. We wrote letters etc and after a long while they did allow him to join their weekly meetings.

His attendance did not go well as the venue of the meetings was where we allege Adam  was mentally and physically abused by staff …ie school premises  It was also the scene where he first developed his mental illness  POST  TRAUMATIC  SHOCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  so we had to withdraw him, but he still attended the boys brigade and loved it and did well.

Adam did so well that he managed to get a place in a  normal high school, we looked at 2 and we thought it was the best one as it turned out the move changed Adams life and future forever.

We felt that Hampshire county council was not a good council and before the event with Adam we had already been to a social services tribunal  about our daughter Lucy who also has down syndrome and won. So we feel they were not happy ,but it is only our opinion.

Before the incident Adam was a happy bright and contented child , with a very strong feeling towards right and wrong. Because after the incident  ,he asked me………

“  Mam when I am bad  I  get  told off those people hurt  me who tells them off  “

He started the high school and at first things were OK and we were happy , we even sent a letter to  the government watch dog that it was ok but  within 2 months we were having problems. We were giving him money for lunch but he was not getting it as it was being taken from him. We were told children . Then one day he came home and he had large scratch marks all over his body and he was terrified and he kept  saying Mam it was Penny and Margaret they hurt me and I asked who Penny and Margaret were and he said they were his helpers. During all the years that we fought the local authority Adam NEVER WAVERED IN WHO HURT HIM. He told everyone ie…..

1. police
2. social worker
3. doctors
4. nurses
5. teachers
6. tribunals

No one except the last 2 tribunals acknowledged this to be the truth only in private to Mrs Stewart and in notes they were taking in meetings with Adam and ourselves  but by the time we had the social services review  5 years later those notes were no more we allege.

We complained to the School and governors , but all we got from them was that , the reason why he had the scratches was because  school  girls jostled  him. The school governors would not investigate or the authority , Adam was disabled there was nothing more we could do at that time, but Adams distress and behaviour continued to deteriorate and he kept running away from his careers ,and Adam always stated the same thing that Penny and Margaret  had hurt  him.

It was then  that we decided that the whole incident should be investigated so we started pushing for an investigation by  the police, doctors , Education Authority and social services ,also we decided to send him to a special school because his learning had deteriorated, but it was the wrong thing to do, and the move caused my son much more hurt.

“ What we believed happened at the mainstream school was that one day Adam got tired and sat down which he did at home, but instead of  talking to him or handling him  appropriately they mishandled him and continued to do so the rest of the time he was at the school and this mishandling  continued at the special school we allege this but WE BELIEVE OUR SON “.

Adams mental condition was deteriorating and he was having severe flash backs, and as Pauline had suffered from Post Traumatic stress in the past she thought some of the symptoms Adam had was like hers. So we tried to get help from the medical and mental profession, they did not want to know because by this time ,social services had started a section 47 on us saying we or Pauline had caused Adams deterioration  and now it was a child abuse case.

Two weeks before this we were told by the headmistress of our daughters school that the local Authority were going to fabricate evidence and take our children from us They did not want the abuse from the 2 schools to come out and us to sue them, of course again we must say alleged.   

You cannot imagine how things were with us we had a child who was suffering and was becoming more and more disturbed,  we his parents who loved him most in the world was being accused of hurting him, Pauline was recovering  from her post traumatic stress and we had another Downs  Syndrome Child in the house with immune deficiency, which was life threatening. Also our daughter Anne had a lot of problems to but she was wonderful and was there for us .  Even after he went to the first special school. No one would do anything no one would believe us, we had a section 47 out against us who would believe us . It was wonderful to see the vultures circling  all in our direction. We got a  private  psychiatric report that we paid about £80 for, saying he had suffered post Traumatic stress, yet this report was ignored by all the official bodies.

We allege that the council new that Adam was abused   one of the social worker told me he had been abused by staff but we believe that they were worried that we would sue them so they tried so much to dampen things down , especially in Adams new school, we new things were happening at the school but we could not find out what all we were told was that Adam was a naughty boy. We went for a yearly review at the school between Pauline ,the head teacher and a representative from the education dept a Lady, ( This is the same lady 4 years later that attended the last tribunal and said to me and a representative from Mencap that I was a wonderful mother.)

Yet after that review  both the head teacher and the lady sent letters into social services, complaining about Pauline, now what we were told was going to happen was happening and a section 47 was commenced. I know now I should not have attended the meeting on my own but Greig   could not get time off work, and it was important to go to this meeting so that we could all work together for the good of the child my son Adam.  We really could not believe that an authority  would go to the allege lengths  that they did to protect certain people who worked for them .WHO PROTECTS THE CHILD??????????????????????????????????????????????????????????????????????

This was when our nightmare began. Pauline blames herself in a way because she was not strong enough at the time to fight these people she was recovering from post traumatic stress and other conditions and she could see her son suffering and no one cared.

It all came to a head one November day when we received a phone call from the school ,saying Adam had acted inappropriately  in the class by removing all his cloths. I sat Adam down and asked him why he had done this because it was not the right thing to do . He told me he was very very frightened  all the time that was why he was running away to get away from the people who hurt him so  he took his cloths of so they would have nothing to grab hold of when they ran after me.

I new it was time for Adam to get out of that school, they were labelling him unmanageable and they were not caring for his needs , We looked at other schools one in particularly but they rejected Adam, why we do not know but we have our suspicions.

We  made a life changing decision after Pauline  had a car accident coming from the school that we wanted Adam to go to., she broke her foot we were both very depressed and low . We were that low  we were ready to sigh the section 47 just to make the hell we were in go away, The social services wanted us to sign the section 47 they were promising us everything our backs were against the wall . But  aunty  Jen was right when she said,  when your back is against the wall there is no where else to go  but forward  fighting , she was given the B.E.M.. for her work in the war.

It would have been the easy way out to just  sigh the section 47  but we did not agree with what it contained because it did not contain the schools and staff that had abused Adam(alleged)and it seemed that they wanted to blame Pauline .

We new it was a hard road we were choosing   but to us it was the only chance we had to keep our family together and it was important to keep our family together. It was a good thing that we did not sign it  ,(because one of the   social worker who was investigating us  and  was against what social services were doing to us  suddenly  did not have a job we allege) She met  Greig one day in Aldershot and said  that if we had signed it our children would have been taken from us),. The realization of this made us fight harder.

We sent Social Services a letter saying we were not going to sign the section 47 because it was not correct . We also told them that  we had been informed that the local authority were going to falsify evidence, so that the children would be taken into care. We told them that if they thought we had abused the children, they were quiet at liberty to take us to court , at which time we would bring the person who informed us about the threat to our children  into court and see who the Judge believed..

After that all our letters were asking questions like,” did  you do this “ or “ did you do that”, of course  our questions were never answered .but it was a start our backs were off the wall and we were coming out fighting. We still had a long way to go, we had three main priorities one was to get Adam away from the special school he was in because he was not benefiting from being there , they were not hearing his concerns or giving him help and we still to this day allege they were doing what the local Authority told them to do.

We requested another Tribunal  and Adam was moved to another Special  School  in , Hampshire. This was run by a wonderful headmaster, although we were suspicious  that he would do what the local Authority told him, but right from the start he said he would tell the truth as he saw it , good or bad for all parties and we believed him. He started a behaviour program for Adam and when things got tough for Adam he allowed Adam to come to his office to talk to him.

“He told us of one day ,Adam coming into his office and sitting down for about an hour, Adam never spoke to the head teacher he just sat there, after the hour was up he went back to his class happy. Adam felt safe and stopped trying to run away from his fear and his behaviour improved. It was wonderful what that head teacher achieved with Adam ,  which  the other 2 schools could not achieve

We then moved on to the other two priorities, which  were to find  Adam an independent  Psychiatrist away from Hampshire and to get his  Post Traumatic Stress included in his statement. Because it we could get it included in his statement then the local Authority could then not dismiss it or that he had a problem..
.

The psychiatric report that we had was a private report that we had paid for in Hampshire, but the doctor did not give Adam treatment and the Authority did not include it in his statement.

So we then found another national health consultant in Finsbury Park , London, who was not much help , ( remember we still had the section 47 being carried out and as we had not signed the 47, it  was still open) and how many professionals believe the parents. Adam did  tell them about the people who hurt him but we felt he was not being believed . They did there assessment and that was the end of the matter.

WE looked for another psychiatrist  and ended up at Great Ormond Street Hospital. We believe that God led us there because we found a wonderful Lady ,who for the first time believed Adam and wanted to work with him, so aiding his recovery.

Adam was put on medication, which saw an immediate improvement in his behaviour , he also visited the psychiatrist every few months alone and sometimes in a family group . A working partnership began between the school, psychiatrist and our family. This was the start of Adams recovery.

The psychiatrist did warn us that because Adams condition had been repressed for a long time and that he had not been given treatment , his recovery would take time and  he would get worse before  he got better.

We found out just what that meant a few months latter when Adam got the keys and opened the door to the house at 5am in the morning on a cold November day and with only his pyjamas on and shoes he walked to the train station 2 miles away and got onto a train bound for London. He was stopped at Guilford by the police and taken into their custody for not paying his fare.       

 Pauline had woken up at 6am and  found him missing  ,she was frantic and drove round  Farnborough  and Aldershot, calling at  Police stations along the way, no one new where he was. Then I got a phone call from my daughter who said the Guilford Police had been on the phone saying that they had arrested Adam  for none payment of fares. She said do not be silly Adam is only 14 years old with Down Syndrome and Post Traumatic Stress. She told them that her mother was on her way to pick him up.

With That they took him down to the canteen for drinks and biscuits, When Pauline arrived Adam was very cold and agitated, he said he had run away because he thought that Penny and Margaret, Mr Bevan  and Mr Jones were coming to get him and he had to get away   , that was why he had run away to  hide from them. To this day we still do not know how he had managed to walk 2 miles and get through the barrier and onto a train bound for London all in his pyjamas  no one had tried to stop him until the police had stopped him on the train.

After that  we had to hide the keys and keep changing hiding place so it would confuse Adam  as to where we had put them . It was a frightening time for all of us . But the school, us and the psychiatrist all worked together and little   by little Adam started to improve.

But it was  very difficult for Adam as he had to pass the schools where he alleges his assault took place,  every  day., causing quiet bad flash backs, with shakes to his body.  These did not improve until Adam came to live in Spain. Even now he does not have closure because the people who hurt him were NEVER1111 brought to Justice.

Next we needed to get a Tribunal so we could get  Adams Post Traumatic Stress into his statement, this was achieved just before Adams 16th birthday.

At this time I must tell you of the support and help that we did get other than the above. This came from Mencap, (southern division), they were wonderful and supported us through the years and even attended the last Tribunal. They had an open mind and believed us and I want to say a “BIG  THANK  YOU” to them for every thing they did.  .

We cannot say the same about other charities although the one in Portsmouth had helped us during the early years but when the 47 was started, it was different. We wrote them a letter explaining our story but who would believe parents against the  Local Authority  so we stopped going to them.

The charity that we feel really  did not help was “ The Down Syndrome Association “ in London, We belonged to the local Hampshire group and a Down Syndrome  childs father was the chairman. Before the 47 he was ok but after the 47 he did not want to know .

There was an incident when  my friend Pat from the I.O.W. who also had a down Syndrome daughter told me of a meeting of all the down Syndrome families in the south. I could not understand why I was not sent the information and I asked my friend to get 2 tickets for her and myself. I felt I had to warn parents of what had happened to us and I rang the chairman up and because of that conversation I felt I would not be welcome at this meeting so I did not go after that I NEVER bothered with the Down  Syndrome Association again I only speak of London and the south.

We understand why these people think the why they did , we were being accused of abuse by a big authority, so they must be right and we must be wrong. It is a sad indictment of our times that you are guilty before being proved innocent not the other way round..

Since joining Down Syndrome Ireland we have been looked after very well and they really care about our children and their families..

“ THANK YOU DOWN SYNDROME IRELAND”

We would also like to thank our wonderful friend Pat Smith ,Steve , Marie, and Lee,  from the IOW and  Trica and family and all our friends and families that never gave up on us all through the bad times. It is through these times when you know who your friends are.

Because we did not sign the 47 we did not get any help or respite care for the children, we expected this because we did not comply with there orders but it was very hard at times, especially when you had 2 ill children.

In the last year we were in the UK before we moved to Spain  we had 2 Tribunals one was an educational tribunal and the second was Social Services. The first was the educational Tribunal……………………………….

On the day of the Tribunal we were representing  ourselves  with support from Mencap and an independent witness , Adams Headmaster. The Tribunal was being chaired by 3 officials I think one of them was a lawyer.

Part of our evidence was 2 psychiatric reports, the private one that was done 3 years previously and the new one done by Adams psychiatrist from Great  Ormond Street. Both said that Adam had suffered Post Traumatic Stress and one of the questions the panel asked Hampshire Education  was why did you not include this first report into his statement or give help to this child when he needed it, There question went unanswered , the Education Dept had nothing to say.

Adams Headmaster was true to his word and told the Tribunal exactly how he saw things, it just so happens that the things he saw were pro Adam and not pro the education authority . Because of his testimony and the 2 psychiatric reports, especially the one from Great Ormond Street Hospital Adam won his Tribunal and his Post Traumatic Stress was entered into his Statement of Special Needs. It did not change anything with the Local Authority, we still did not get anything but now the whole world could see that Adam had suffered a mental trauma and they could no longer try to hide it or push the evidence under the carpet.

There is a sad note to this  and that is the school that Adam attended with the wonderful headmaster is no more and the Headmaster is no longer in Education but he has moved on to bigger and better things, God Bless him.

 

I have already told you about what the Lady from the Education  Authority said to us after the Tribunal but what  we and Mencap could not understand was if she thought Pauline was such a good mother why did she send the letter to social services  4 years before condemning  Pauline  which started the section 47, ensuring the nightmare that we found ourselves in.

We then had the second Tribunal which was the Social Services Tribunal.  It was very informal and it was held in the Social Services Dept in Aldershot , Hampshire. We had asked for this Tribunal  3-4 years before but we believe and allege that they were putting it off  but we believe that after our success  with  the other Tribunal they could no longer do that.

We believe the panel was made up of very experience people , the lead we believe was high up in Social Services  we told them about the section 47 but they seemed confused on how it was undertaken , we now believe and allege  that it was not carried out the way they were usually carried out. Unfortunately we cannot prove this.

We mentioned a certain phone conversation with the social worker , where she read a report saying Adam was mistreated by staff at a school but at the Tribunal it could not be found… WHY?

At the end of the Tribunal the Panel decided that there may have been some abuse at the school and the Social Services had to investigate. What they did was ring the school and say did you abuse this child , the school said no and nothing else was done. NO  SECTION  47.

Where was the justice for ADAM????????????????????????????????????????????.

Because my daughter had immune deficiency it was important that we move to a hot climate, because her life expectancy and quality of life was not good in the UK so we moved to Spain.

But we will never feel safe again anywhere. The hell that Adam and his family went through could happen to anyone who bucks the system. Because these authorities have all the power to do what they like. We need changes to the family courts, open access and real protection for the children and there families.

 But we believe this will never happen and our children will continue to suffer until pressure is put onto the Governments all round the world. to make changes.

We moved  to Spain in 2000 and it was the best move we made in our lives . Lucys health improved and she settled down at school and Adam, went to a disabled college settled down and never looked back.. Both children can read and write and speak Spanish fluently all because of the dedication of there teachers.

The flashbacks were less for Adam because he no longer lived in the area where his Post Traumatic Stress had started, although in certain situations he was very nervous
Eg…. If he went out for a meal, he would spent a lot of time in the toilets, and he did not like change or the cold , this would trigger a flashback and his hands would shake and he would try to get away from his fears. Over time he improved.

He has also gained some independence and goes down to the local bar each week to play pool,

Adam took up swimming and it became  his life, as he said…..

“ Mam when I am in the water I am like everybody else”.

Adam has always been competitive and he knows he has down syndrome and is not happy with that fact and he is always striving to do better and reach goals and  he does just that.

He joined a swimming club in Pilar Horadadad, which is about 2 hours from Alicante and he did well in the ordinary federation and, special needs …. FEDDI.

He also took part in international and World Championships and won gold,silver and bronze medals around the world.

He was on top of the world until he had a sports accident in October 2006. We had an Xray done and it showed that he had a partial dislocated knee and  the Drs were going to leave him like that for months until he saw a consultant . We were worried about the damage and pain he would have walking around like that for months and the impact it would have on his swimming.

So we took him to the emergency dept and told them we were not moving until they put his knee back in place, which they did. But  the accident had taken its toll and although he got better physically he did not get better mentally and in October 2007 he had a relapse of his Post Traumatic Stress so now not only did he have old flashbacks but new ones as well.

In the acute stages of Adams illness his flashbacks and fears were so severe that  he again tried to get away from them by climbing on a roof. We were lucky because we had a friend who helped us to get a psychiatrist the next day. He was given medication and this supported him through the acute stage.

But when we first saw his present psychiatrist , things did not go to well because she asked him why did he want to kill himself, Adam was not to happy with that he told her he was trying to get away from the people at the school who had hurt him and he did not care where he was going. All he cared about was getting away. Afterwards he new it was wrong and he could have hurt himself  and this frightened him but in the acute stage nothing mattered.

Adam was very despondent and depressed  and did not want to go swimming again, yet it was his life .So therefore it was important for us to motivate him. He wanted to go to the world  championships  in 2008 and he though he could do this without training . We told him if he did not train then he did not go.

We reduced his stress  and changed his time table and after a few months he started to improve. When he gained self confidence after he started winning medals again. Nothing is plain sailing and he had a set back  when his medication started to interfere with his swimming and he again became depressed .So we had to adjust his medication and  his  swimming improved..

Adam  had a little understanding about his condition so that it was important that we helped him to empower himself. It took Adam a long time to get to understand and to cope with his illness, but  he did it. One of the things he did  when he  did not feel well was to go into his bedroom and talk to his fears and thoughts and after a time he came out and said he was back and he was.

This did not always work and at  times he needed his medication .but sometimes it was not always given. When he was in a group situation even though information to that effect was given on paper. Adam was not given his medication . This was true when Adam went to the World Swimming Championships in 2008 he was part of a large group and his stress level was very high so much so that during his first race he had a stress attack in the water  and nearly drowned . When he came out of the water he did not recognise me until I touched his arm. When he said  “ Oh Mam I am bad”.

After being in the group for a week he came back to us   very disorientated  and confused  and he had to take his medication 3 times a day for 2 weeks when he normally took it  twice in two weeks.

When he saw his psychiatrist in January 2009 she said that stress had caused the problem and he could no longer join a large group and needed one to one care.

This incident again affected his swimming because he thought that the reason he collapsed in the water was because he was going fast, so he stopped going fast in the water  .

It did not matter  what we or his psychiatrist said he did not believe us. So we had to go back to basics and start again working with him. It took time and patience until he realized that it was stress that had caused his collapsed and it was then that he started his road to recovery.

A few months later he received his First Aid Certificate and then his second certificate 
For ( first aid in the work place). And 4 medals at the European Championships in May 2009 . a first in Swansea and 3 gold medals in Reading in June  2009.

Adams condition will never be plain sailing each day is different and it only takes a change in situations  to affect his Post  Traumatic Stress and his stress levels. This happened on 4.8.09 when we came down stairs at 7 am and found Adam GONE. There had been no warning the night before that he was not well he just  opened the front door in his fear and had left home.

Friends found him  4 miles away carrying a heavy bag and  walking to nowhere. He was agitated when he came home and after we gave him his medication we asked him why he left the house he said that he had woken from a very bad dream which saw him as an old man dying in bed as he did not want that to happen he decided to go walking ,( he could not die an old man in bed if he was walking). Also he did not want to end up on the roof again because he new that was wrong ,He new it was silly to leave the house  but when his fear takes over nothing else matters.

Now he is on medication until he himself can again empower himself to get well. Before the incident Adam was ok and showed no signs that anything was wrong. Also he had been so well of late we had let our guard down and with these patients you cannot do that. We realized that  Adam had a change in his routine he was on holiday from his college and he loves going there and being with all  his friends this made him unsettled and that is why he did what he did

We learnt a valuable lesson in future when changes occur to Adam we will give him his medication , this will calm him down enough so that he will be able to understand the change.     

Adam is now upset that we are withdrawing his independence but as  we said to him you have to earn it again and by your actions you have let yourself down not us. Adam will bounce back he wants to succeed he wants his independence and  with Gods help he will get it He is a achiever a survivor. As long as he has the people who love him and have faith in him and know there will be ups and downs in his life.

Through the years we have given him love and tough love to get him through his battles  Adam did not and will never give up on himself and we should  never give up on him.

We believe that people with Down Syndrome can have another illness such as mental illness and these should be recognizes as 2 separate illnesses and treated as such .

We should have higher awareness of the plight of these children and links between parents, professionals and carers should be forged. Also we believe that re education is needed especially in a group situation, where help and information is on hand  for all to see. To this end please sign our petition at the end of this letter thank you.

What does this tell us of Adam and his future……….

We know that Adam  will never be the bright outgoing , vivacious 10  year old boy that he was before the Post Traumatic  Stress, but he has emerged a stronger ,better and more caring person because he had the right care , help and love when he needed it. His future is bright and positive he has conquered his fears and stresses on the main to become the survivor that he is.

 

HE IS ADAM STEWART A MAN WITH DOWN SYNDROME AND A SURVIVOR AS ADAM SAYS……..

 

                                    “I AM WHAT I AM”

                                    “PLEASE TAKE ME AS I AM”

 

 

                                                       END.    

 

 

          SIGNED

 

                     PAULINE     STEWART.

 

 

 

 

                                          PETITION
…………………………………………………….
TO SEPARATE DOWM SYNDROME AND OTHER ILLNESSES
HIGHER AWARENESS OF THE 2 AND LINKS AND EDUCATION
TO IMPROVE THE HEALTH AND MENTAL WELLNESS OF THESE
PEOPLE.