Short Breaks have made a world of difference Despite all his problems and challenging behaviour, Melanie Curtis believes that her son Jenson, 15, is one of the lucky ones, because he has access to the short breaks respite care at NEAS Newton Aycliffe. Jenson lives at home in Spennymoor with mum, Melanie, older brother Callum and the dog Jett, and, although his dad doesn’t live with the family, he visits every day. At the beginning of June 2016, Jenson began using the short breaks facility at Aycliffe, which has made a huge difference to the family, and gives them the chance to recharge their batteries. Not only that, but it has meant that Jenson has made lots of new friends and tried lots of new activities. Things have been difficult for Melanie since Jenson was born, with an early misdiagnosis of colic at four months, and medical professionals not believing her when she insisted that there was something wrong with her baby. “I was always at the doctors’ with Jenson,” explains Melanie, “but because they weren’t seeing what I was seeing at home, I was labelled as an over-anxious mother.” “From Jenson being a couple of weeks old, I knew that things weren’t right, but I felt like no-one would listen.” Melanie was taking Jenson to the doctor’s surgery nearly every day, but the finger was being squarely pointed at her as having the problem. One doctor blamed the fact that she was run down, another that she was feeding Jenson wrong. Because Melanie had had severe post-natal depression after older brother Callum was born, another doctor told her it was this again, and she was offered counselling. “Jenson was showing symptoms that, now, I can see were part of his illness. At about the same time every afternoon, he would just stare off into space, which were his absence seizures. Or he would giggle for no reason. “ “The misdiagnosis of colic was because he would pull his arms and legs in and scream – which could go on for hours. It was actually a sign that he was having spasms.” Luckily, on one of the visits to the surgery, Melanie saw a different doctor who immediately referred Jenson to the hospital where he was seen and diagnosed by a consultant as having West syndrome – a very rare type of epilepsy typified by infantile spasms of the kind that Jenson was displaying. “It was such a relief that someone believed me at last,” recalls Melanie, “but it was a shame that we had to go through all of that.” Once Jenson was on the correct medication, things improved dramatically. However, his prognosis was not very good. “I was told that his disabilities were very complex and that Jenson would probably never sit up, and never walk,” says Melanie. “But he did, and, in this way, he is much luckier than some of the children with his condition who can’t feed orally, and might have hundreds of seizures a day” Jenson was well enough to start in mainstream nursery, and at four-years-old, moved on to a very supportive special needs nursery, and on to a special needs primary school and secondary school. Four years ago, Jenson had a lot of assessments that discovered that, developmentally he was only nine-months-old. At that time Jenson was accessing two respite services and additional support in the family home and it became clear that he was not getting the right support to meet his particular needs. Due to the specially trained staff and facilities, Aycliffe Short Beaks were able to offer Jenson a full wrap-around service for his care outside of school hours. Since starting at Aycliffe, Melanie says that the change in Jenson is unbelievable. He is a lot calmer and his personality is coming out a lot more. He is not getting anxious because of the irregularity of his routine and he is a lot more confident. “The staff are so understanding of his needs – even on a bad day.” says Melanie, “They speak very positively about him, and say he is full of mischief.” The move to Aycliffe has had an impact on the whole family. I can’t explain how much better it is for all of us. Aycliffe offers holiday respite for Jenson, as well as overnight care on weekends, which allows both the family and Jenson the chance to have a break. Although he can’t speak, Jenson enjoys many of the activities whilst he has been on short breaks at Aycliffe. With help and encouragement from the staff, he has tried lots of things that he would never before have attempted, such as trampolining, and a visit to Light Water Valley to try the funfair rides. He has discovered a love of classical music which he listens to at home and it helps him to feel relaxed and happy, and gives his mum time to get on with her jobs. One big milestone that has made life much easier for everyone, is his ability now to get up and down stairs on his own. Previously, mum or dad would have to carry him, but, with the encouragement of the short breaks staff, Jenson can manage the stairs, and practically runs up them in his excitement to get to his short break stay. I get frustrated when I think about what Jenson has to go through, and, while it is very hard, it is also very rewarding. Every achievement is so satisfying. Jenson will also get frustrated by not being able to do something, but, with the patience and help of the staff, it will suddenly click. Melanie says that she tries not to think about the future, but knows that NEAS will always be there to support them. She also tries not to think about how different things might have been for Jenson if they had known about the Aycliffe facility years ago. Encompassing everything from after school support, holiday clubs and weekend activities to overnight and even week-long stays in the purpose-built centre, NEAS Short Breaks service provides bespoke support for children, young people across the North East of England. A chance to have a break, both for the parents and for the children - the young people have fun, make friends, learn new skills and develop independence. Find out more information about Children's Short Breaks Or come and meet the team at our Open Evening on 18th July, 4-7pm and visit our North East Centre for Autism.