Chloe's Story Chloe is 15 years old and lives in Bristol with her mum Michele, stepdad Paul and younger sister Megan. Chloe has autism with complexities, anxiety, hyper-mobility syndrome and a duplicate chromosome that, as Michele explains, “Is rare, and affects around one in 64,000 people.” Due to the nature of the condition, and that it affects a smaller group of individuals, there are no clear answers as to how it will affect Chloe as she gets older. “I was told they were unaware of how it may affect her in the future.” Michele further explains that Chloe is experiencing increasing pain. “It’s more prominent as she grows. Her paediatrician has now referred her as they think Chloe may have Marfan Syndrome. This is by far the scariest diagnosis yet. We have no idea what the future holds for Chloe.” Marfan Syndrome is a genetic disorder of the body’s connective tissues. This group of tissues maintains the structure of the body and supports internal organs. “Family life is always very stressful. We have to stay one step ahead and predict how Chloe will react to situations.” Early life and the journey to diagnosis “I knew something wasn’t quite right as soon as Chloe was born. She hated to be held, and she would refuse to be breast fed. I had to feed her by sitting her in a bouncy chair whilst I held the bottle. She didn’t talk until she was four.” Michele tells us that Chloe would have meltdowns that would last hours. “It was impossible to comfort her as she hated to be touched – I had to stay at a near distance from her to make sure she wouldn’t hurt herself. She would eventually pass out through exhaustion.” When Chloe was three years old she was put into an assessment nursery. “After being watched by different specialists she was diagnosed with dyspraxia. She started at a mainstream primary school with a statement of educational needs. She had a one to one teaching assistant with her at all times, including lunchtimes. Despite the assessment and specialists I still wasn’t convinced she had the correct diagnosis. Finally, at the age of nine, she was diagnosed with autism with complexities.” Daily life for Chloe and her family “Anxiety rules Chloe’s life, which means routine is very important to her. We have to make sure the daily routine stays the same as much as it possibly can, even down to the meals we eat and the days we eat them. If, for any reason, routine has to be changed, then we have to warn Chloe as far ahead of time as we can.” Michele explains that Chloe needs to know the exact details of everything that is going to happen. “It takes a lot of planning and preparation.” This not only affects Michele and Paul, but it also affects Megan, Chloe’s younger sister. “Megan has grown up to be very understanding of Chloe. She knows how to calm and reassure her. In many ways, Megan has to act much older than she is and sometimes is like a mini-mum to Chloe. Due to Chloe’s anxiety there have been many day trips, family outings, things like that, where we have had to come home early. Megan has to accept that it happens and though she is disappointed, she never lets it show to Chloe.” Though routine can be easy to maintain at home, it can be impossible to predict out and about in public, and at school. It’s impossible to know what might happen even though we try to plan ahead as much as we can. "For example, public transport is impossible. If it doesn’t turn up at exactly the time it’s meant to, Chloe’s anxiety will increase and we have to take her home and help calm her down.” Education for Chloe Chloe currently attends a mainstream comprehensive school. “It has an attached 25 place resource base for autistic pupils. She is the only girl there. She attends mainstream classes but always has a one to one teaching assistant from the base with her. Chloe is also unable to travel safely by herself so she has transport provided by the council to and from school.” As Chloe is 15, she is in her final year at her mainstream school. “We are currently looking at college options for her. Unfortunately there doesn’t seem to be much post-16 provision for special needs in our area. It’s a very worrying time.” Support for Chloe and the family “We don’t have any close family so all the caring for Chloe is done by ourselves. We are lucky to have a play-scheme for disabled children that runs during school holidays. Each child is allocated so many days per year. We always make use of those days as it means I can spend a time with Megan where she can be with me one to one.” Michele tells us that Chloe loves the play-scheme. “We know she is safe and happy.” Chloe also attends a special needs youth group on Wednesday evenings. “Again, this gives Megan an evening alone with us and we know that Chloe is safe and having fun. As Chloe takes up so much of our time, Megan often has to step back and rarely gets time with us alone. Megan has never known any different but she looks forward to these days – we can go to busier places where we know Chloe wouldn’t be able to cope.” Michele also tells us that Megan suffers from separation anxiety. “She hates to be apart from me.” Chloe has recently begun taking medication. “Up until now I haven’t wanted to medicate Chloe as I thought that should be her choice to make. She chose to start taking sleeping medication a few months ago – due to her anxiety she has been having issues with settling down to sleep. She has also asked to start anxiety medication. We are waiting to meet with her paediatrician to discuss options.” Challenges for Chloe and her family Michele has suffered with depression since Chloe was born. “I was a single parent from day one, until I met Paul when Chloe was six. Parenthood was nothing like how I had imagined it and having a baby which rejected you every time you tried to bond or hold her was very difficult.” I’ve had to take medication and I also suffer from anxiety. Michele explains that due to Chloe’s condition, work can be challenging. “I work as a lunchtime supervisor at the local school. It’s impossible to find a job out of school hours as I need to be home to put Chloe on her transport on a morning and to collect her from her transport after school. During the school holidays, apart from a few days at play-scheme, I have no one else to watch Chloe. Paul is the only one able to work full-time.” The future for Chloe “Chloe is turning 16 next month and it can be very hard seeing her old primary school friends celebrating their birthdays and knowing that they are maturing, they are in relationships. Chloe is still mentally much younger than her age. She loves to play with dolls and watch children’s programmes. Sometimes I can’t help but compare her to others, but then I see her enjoying herself, in her own little world, and realise she’s happy and exactly who she’s meant to be. Megan is starting to outgrow children’s programmes like CBeebies, whilst Chloe is still very happy to sit and watch it.” “Chloe is unable to go anywhere alone, and is very vulnerable. She has either myself, Paul, a teaching assistant, or a care worker with her at all times. I can’t see that changing. Megan is already saying that she will care for Chloe when she’s older. I’ve never asked her about it but I think she realises that I worry about the future for Chloe, especially we are no longer around.” How we helped “I first heard about Family Fund a few years back. It was Chloe’s paediatrician who suggested we apply, and to be honest, I always thought there were many worse off families than us, so it wasn’t until this year that I put in an application.” Michele applied for a family break through Inspire, and put the grant towards a weekend away at Butlin’s. “I heard Family Fund could help with a grant that we could use to go to Butlin’s.” Michele tells us that Butlin’s is a place where Chloe can be herself. “We started visiting Butlin’s for day trips a couple of years ago. We quickly realised that it was Chloe’s happy place. She could totally be herself – she could join in with the younger children and no one took any notice. The red coats soon got to know us by our first names, and it became a place where Chloe and Megan could do things together, something that is usually impossible due to their age gap. Even though Chloe still loves soft-play activities, things like that, due to her age and also the fact that she is very tall (6-ft), it’s very rare that she’s actually allowed to join in. At Butlin’s, this is so different. The staff encourage Chloe to join in and praise her when she does.” Because Chloe needs routine, the fact that a lot of Butlin’s activities and shows are run to a timetable helps Chloe and reduces her anxiety. “Everything is timed and you receive a timetable as soon as you enter, which means Chloe knows exactly what is happening during the day. It’s amazing for her.” How it’s made a difference The cost of Butlin’s has meant that the family have been unable to go to for any longer than one day. Thanks to the grant, the family were able to go for a weekend. “We have just got back from a Halloween weekend there are we are so grateful for your help. Chloe didn’t have one meltdown and she smiled from start to finish. Megan and Chloe were able to bond and join in together, and Megan was also able to get some one on one time with me.” “Without the grant this wouldn’t have been possible for us. You have given us a stress free weekend that we will always remember. Thank you so much!” Find out more about applying to Family Fund.