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I have been coming to Talbot House for four years now, and my life has changed immensely because of it. I have acquired knowledge about the services I could access which I had no idea about before. My son Gary is 26 years old and my wife and I felt extremely alone before I was introduced to Talbot House, as we did not realise there was help out there. Since attending, I have made a great group of friends who can identify with me and truly understand where I am coming from, plus all the staff at Talbot House are great. I go to Talbot House at least twice a week, it has become a major part of my life and I try to give something back because they have given me so much. I was chosen as a volunteer to help out on a Wednesday, which was fantastic and made me feel really good. I also like to help out by doing the gardening and any odd jobs. Before coming to Talbot House I never had the opportunity to get away and have a break. They help me access grants for breaks away, and also organise weekend breaks and day trips, which are great. All I can say is Talbot House is a great place to be involved in.  Back to top  From mainstream to special schoolIn 1991 I had a child with Downs Syndrome; his name is Jason. I already had two children aged 5 years and 6 years in normal education, the thought of a “special” school for Jason never entered my head. Mainstream was considered the norm and anything other than that would not do. When Jason was two years old I went to the local school which my two older children attended and asked for Jason’s name to be put on the list for nursery care. The Headmaster would not accept Jason into his school because of his learning difficulties, leaving me hurt immensely. This resulted me in rebelling by taking my two older children from the school. I then went to another local mainstream school and applied for all my children to attend, they were all accepted. To make this easier I then moved address and Jason attended the local school nursery and my other two children went into the Infants/Junior side of the school. Things were going well and I was happy that Jason was learning, even though it was at a slower pace. Although he made many friends at the school, as he grew older Jason's learning difficulties became more apparent, which made him more aware that he was 'different'. His learning difficulties were not taken into account and he was not allowed to behave differently from his peers, which proved difficult for Jason. It was as if the school was saying that they accepted him as a pupil, but not one with learning difficulties. They expected him to leave his difficulties at the school gate, and this was becoming a problem. As Jason became older, I realised that this was as far as we could go with mainstream schooling because his school work was that of a reception age child. The gap between himself and his peers was enormous, and they were recognising that Jason was doing work for much younger children. I was concerned if Jason stayed within mainstream; • How would he deal with going from a small primary school to a school of two thousand students in secondary education? • How would he get around effectively? • How would he read daily timetables? • Would he be included on residential trips etc? • Would the same peers want to be around him? • Most importantly, Jason is vulnerable, what about his safety? • Would he be the one to get into trouble for others? • He would become different from the other students because his Mum would be accompanying him to school daily for all the terms and other school activities whilst he was there. Thankfully the school accepted my worries; he was to go to a “special” school for his remaining education. Jason is now 16 years old, it was not easy taking him from mainstream school to a special school because things were completely different for him. For example Jason had to get used to fellow pupils having fits and needing to be fed etc. Although it has been difficult, the main thing is he is safe and happy and is included in all school activities. He has many friends, some hopefully for life. Educationally he is encouraged, not pressured. So as Jason’s Mum, I am happy because he is happy. Back to top  Talbot House changed my lifeMy name is Helen although I am known better as Ellie. I first came to Talbot House 19 years ago. My Social Worker brought me down; at that time my daughter Toni was two years old and born with profound disabilities. I also had another daughter Kirsty, who was four years old. When I found out Toni was disabled, I was in a state of shock. I felt that there was nobody else going through or feeling what I was feeling. When I came to Talbot House it was the first time that someone asked me how I was. That was when the floodgates opened and I could not stop crying, because at the time I did not feel I was capable of dealing with someone with such profound disabilities. Over the next crucial five years the other parents allowed me to grieve the child I didn’t get and to learn to accept Toni as she was. I learnt everything there was to learn about the world of disabilities, Talbot House always offered me vital support, especially when going to the hospital, as I found these visits particularly scary. I also learnt to find time for Kirsty and importantly I also learnt to find time for myself. There were days at the beginning when I did not want to live, and yet today through the help and support of other parents I see my daughter as the beautiful young lady she is and the disabilities are secondary. Talbot House has taught me to be confident and passionate and this has moulded and changed my whole family, for the better. I am now employed by Talbot House and part of my job is going all over the country educating people, visiting schools and colleges passing on information. I am also on the team involved in training the professionals and hopefully giving back the love that was given to me by the parents over the years. There are still bad days, only now it does not take me as long to get off the floor. Back to top  Direct payments can help youToni was born with severe learning and physical disabilities and is now 21 years of age. For the first 17 years of having a child like Toni, life was very difficult at times for all our family, especially my oldest daughter Kirsty who did a lot of care work for her sister and also to help me around the home. Juggling life was difficult at times as it was not always easy taking Toni to places where the family wanted to go, as she would often get very agitated and felt insecure in busy places. There were also times when Kirsty would want to go to places without taking her sister and would just want me and her to go, but I could not leave Toni alone. It was also impossible for me to go out with friends without Toni, as there was no one to take care of Toni whilst we went out. I was sometimes very tired after getting up early to get Toni and myself ready before I went to work. I would often leave for work feeling guilty as Toni had been rushed so that I would not be late for work. I realised that Toni could only have a safe life if myself of Kirsty was there to take her out. I felt that this unfair to Toni and that she deserved a life of her own and friends of her own just like Kirsty had done for herself. She needed independence. One day my mind was made up for me, I went to lift Toni up and a pain shot through my back leaving me unable to move for a week. Social services sent in some carers to help me with Toni as Kirsty was at work. That was it; I liked having a bit of help and wanted more. I applied for Direct Payments and the first person I employed was her sister Kirsty, I felt this was only fair as Kirsty had worked for 17 years for nothing. Also Kirsty was the person who knew Toni best and who Toni enjoyed being with the most. When I got used to employing personal carers I applied for I.L.F (Independent Living Funds). I then employed new staff to work alongside Kirsty. I took Toni out of the day centre she attended as I did not feel the service they offered was suited to her. Toni now has a life of her own; going out doing things a young lady should be doing and not having to wait for me, as I knew she did not always want to be with me either. I have watched my girl blossom into a beautiful young lady having the time of her life. I have also got my life back and can do things on my own in my own time. I am no longer tired when I get to work, as carers now get Toni up, washed and dressed ready for the day’s activities. Importantly, Kirsty gets a wage for doing things with her sister she loves doing. And Toni? WELL SHE IS HAVING A BALL!!!!!!! Back to top  Arriving in the UKThis section is just a little information on my experiences of arriving in the UK. For anyone that has come from another country I am sure they will definitely agree with me when I say it is a truly overwhelming and daunting experience, especially if you have a child with learning disabilities. My son has autism. When we arrived it was very hard to find any information on services available for a child with special needs. The one thing I thought would never be a problem was getting into school, how wrong I was! It was the hardest thing ever; each school I rang said they could not see us without a referral-where was the referral supposed to come from? The doctors could not give any guidance on this-I tried social services but sadly that did not help either. I had requested a social worker but did not know that there were social workers that dealt with special needs and so the one I had assigned to me was too busy to visit me and assess my needs. Eventually I met a lady from Connexions and she told me about Parent Partnership and Talbot House. By now we had been here for six months and my son was still not in school. Finally we were given one day a week at school, it was a start but far from ideal, by now I watched helplessly as he regressed, began self harming and withdrew more and more each day. I managed to visit Talbot House and was truly overwhelmed by the friendliness and genuine concern of everyone I met. This gave me strength and the courage to go on. After another month of not letting go and truly fighting for what I believed was right my son was accepted into school full time. Talbot House advised me of benefits that I was entitled to, for instance working tax credits; I was working full time but had no idea that such a thing was available. A year later I was employed by Talbot House and the real changes began to happen as I then became aware of exactly what was out there. Talbot House also managed to organise a social worker which made a huge difference to improving Sacha’s life. It is not easy for someone to arrive in the UK, as you do not know where to go, it can be a very hard and lonely road. All I can say is you are not alone, please contact us at Talbot House. Back to top  Feeling Alone During my pregnancy I had a strong feeling that something was not quite right. This was my third pregnancy, so I had some experience and this one just did not feel the same. The doctors that I saw kept on saying that the baby had a round head - but what did that mean? All babies have a round head! They sent me for more scans and repeated the statement that the baby had a round head. They didn’t explain that this was an indicator of something wrong, and I certainly didn’t think that a baby having a round head was an abnormality. No explanation was given to me at all. My pregnancy proceeded and I had a normal delivery, but everything then became very abnormal and didn’t follow the usual pattern that I was expecting and had experienced when my other two children had been born. My baby was wrapped up tightly and had most of his face covered with the blanket. When I looked at him, his face appeared too big and swollen for a new born baby. One thing was for sure - this was not the baby I was expecting and I didn’t want this baby that had been handed to me. Needless to say I was very distressed. The response of the staff at this point was to leave the delivery room; they just didn’t seem to know what to do with me. I felt totally deserted, no-one came and talked to me about my worries and fears, no-one gave me the support I needed. Because I was so distressed at how my baby looked and because I was adamant that I wasn’t having this particular baby, they agreed he should go to the special care baby unit. That was the baby taken care of, what were they going to do with me? I refused to go on the main ward, where I already knew some of the Mums - hadn’t we been having chats not so long ago about what we would be having? They were alright, they had their babies, and their babies were fine. Mine wasn’t. I was put in a side ward. Emotionally, I was in a bad state. I felt so guilty, why me, why my baby? I was concerned about my other two children, what if the children in the playground at school called them names and gave them a hard time because they had a brother who looked different. I felt that the baby would be a burden and that as a family we wouldn’t be able to get on with our lives. I even thought of fostering for the baby. My emotions were all over the place. At this time, I didn’t know I was going through a grieving process and that these feelings were quite normal. The nursing staff had their job to do, and that was to get me to bond with this baby. Unfortunately their words didn’t help that process. They told me they didn’t know what was wrong with me, that I had a lovely baby. When that didn't work they changed tack and told me to get upstairs to the baby unit and feed my baby. Still no-one was addressing my feelings of loss and I returned home and left the baby in hospital. The doctors had taken blood samples and were waiting for the results before they could tell us what the matter with our baby was. I kept on asking if the baby had Downs Syndrome, but no-one could tell me until we had the test results back. Whilst at home my emotions continued on a roller coaster. My partner kept on telling me that the baby looked totally different to how he looked at the time of birth, but I was still carrying that first image with me. I decided that I had to check things out for myself and five days after giving birth, I went to see my baby. This baby that I went to see was a different baby to the one I had given birth to - he looked different. His head wasn’t swollen (it hadn’t been explained that this was a temporary situation as a result of excess fluid in my womb). I dressed him and counted his fingers and toes, everything was there, and he was lovely. I wanted to take him home. The diagnosis of Downs Syndrome was also given five days after Jason’s birth. No professional sat down with us and explained what this would mean for us all; they just said in passing that they had got the test results back. Getting the diagnosis didn’t upset me, it merely confirmed what I had guessed, and somehow put our minds at rest. Bringing Jason home wasn’t the end of the story, just the beginning of a different one. I still struggled with how I imagined other people would perceive him. I knew it was only me who had the problem; Jason’s father totally accepted the baby and did all the traditional things that Dad’s do, like wetting the baby’s head. However, I crossed the road to avoid meeting people in case they would want to look in the pram, and I wrapped him up as I thought people would be shocked when they saw him. I didn’t tell anyone I still had these fears, when professionals visited I just put on my ‘mask’ and pretended that all was well. There was no handbook about how I should feel and what I should do. I was so afraid I wasn’t doing a good job. There were so many professionals visiting the home, I thought their advice was law, and I had to follow it, no matter how tired I was. Everyone concentrated on the baby, I felt that no-one was concerned about my needs, and I desperately wanted to meet another Mum in the same situation as myself. When Jason was one year old we had a huge birthday party for him, something we hadn’t done for our other children. We invited all the neighbours, family friends, anyone we could think of who was remotely connected to us. We had clowns, a disco, a bouncy castle - it was completely over the top, but I didn’t realise it at the time. It was as if I was saying 'this is my child, I love him, I’m proud of him, and he’s not going to be hidden away anymore'. I also wanted Jason to know that his Mum was proud of him and that he could rely on me to look after him. It was a major milestone for me. When I think of it now I realise it was out of guilt because of how I felt after his birth. I still hadn’t met any other Mums, despite me gazing in baby prams to see if I could find a baby that looked like Jason! Finally, I saw a child who was obviously disabled; I followed the Mum and spoke with her about Jason and my feelings. She was a great source of help and encouragement to me; I could identify with her and felt less isolated. I wasn’t the only mother in this situation; there were now two of us! Around this time, whilst listening to the local radio station one night, the lady who was being interviewed said “If you have a child who has learning difficulties, come down to the Peter Pan Centre” (now known as Talbot House, Manchester). I went down the next day with the children. The worker asked how I was and when I started to explain about Jason, she interrupted me and said, “No. I want to know how YOU are”. I dissolved in tears, because up to that point no-one had ever asked me that question. She identified me as a person who has needs. Meeting with other parents helped me enormously, they gave me advice and strength to carry on, and I believe that I would not be where I am today if it wasn’t for the centre. It has enabled me to see people get on with their lives and still be positive about their future. I am still involved with centre and am now a member of staff there, giving support to other parents. Back to top Hi my name is Ann and I care for my son Simon who is 23 years old. I came to Talbot House for the first time 17 years ago. I was in Homeless Families with my son who was six years old at the time. This was the lowest point in my life, nothing was going right, Simon was impossible to deal with and I was totally lost. A lady at Homeless Families contacted Bernie Wood and told her about my situation. One day Bernie knocked on the door and introduced herself, I then went down to the centre. At this time, I was determined the only way out was to put Simon in care and end my life. I really could not see any way out. On arriving at the centre and meeting everyone I could not believe what was happening. For the first time ever, someone was there for me. They rightly pointed out that the services were taking care of Simon. For the first time, it was OK for me to spend time away from Simon and have quality time for me in the form of pampering services and weekends away. Talbot House helped me to access the benefits I was entitled to and helped me to sort out my housing. The most amazing thing was that nothing was ever treated as trivial. Talbot House saved my life and kept my family together. Back to top |
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