Autumn 2018 Discover the difference that your support makes Issue 23 ReAcHiNG OuT How you re supporting children who are deafblind and their families You re helping Abigail explore Abigail joined Sense s Early Explorers group when she was just a baby. Now two years old, Abigail is a confident, happy explorer, learning more and more about the world around her. And thanks to you, Abigail has enjoyed many adventures on Sense Family Days out. Find out more inside Sense s Early Explorers group stimulates all of Abigail s senses. Lyndsey, Abigail s mum Abigail We know if we have problems, Sense is the only place we can go. Sylwia, Ambra s mum You re there for Ambra as she grows When Reaching Out last spoke to Ambra s mum, Sylwia, Ambra was four. Now she s approaching her 10th birthday and so much has happened. Ambra goes to school, she started walking independently last year and she s been enjoying Sense Family Days. Ambra Turn the page to find out about the difference you ve made INSIDE: Join us on a bear hunt...
What a difference you ve made to Ambra Reaching Out introduced you to Ambra five years ago. Since then, she has made many small steps forward, learning new skills and gaining confidence. In fact, only recently, Ambra has made literal steps by learning to walk. Ambra Ambra is deafblind as a result of having CHARGE syndrome. She also has learning difficulties and problems with balance, so you ll understand that every milestone that Ambra reaches is incredibly special. Learning to walk has given Ambra more independence. She loves to be outside, so this autumn Ambra will be able to feel the crunch of the leaves beneath her feet as she walks. Thank you for being with Ambra all the way. When Ambra first started at school, her Sense Children and Family Support Worker was able to give advice to the teachers on CHARGE and support Ambra s parents at school meetings. And as Ambra grows up, her mum Sylwia feels reassured to know that she can turn to Sense for support at each new stage of her development. It s not just Sense Specialists who are on hand to share tips and give advice though. The opportunity to meet and speak to other parents who have a child who is deafblind is very important to Sylwia. At Sense Family Days, Sylwia can chat to other parents about the challenges they face and celebrate the milestones their children have achieved. And for Ambra, Sense Family Days give her the chance to interact with our specialist sensory toys which help her make the most of the sight and hearing that she does have. Ambra loves the sensory room and the music sessions, feeling the vibration of the drums and the guitar. In the years to come, your support will help Ambra continue to take further steps forward towards each new milestone. Thank you! Ambra has started walking independently which has opened doors for her to explore things and learn more. She loves exploring textures which is why she really enjoys the sensory room at Sense, especially at Christmas time. Sylwia, Ambra s mum 170 could pay for a two-hour visit from a Children and Family Support Worker. Thanks to you, they can give vital advice to parents and specialist support to a child who is deafblind.
Come exploring with Abigail! Abigail Thanks to your support, two-year-old Abigail is discovering more about the world around her every day. Abigail is happiest when she s on her playmat, surrounded by sensory toys which light up and make sounds at the touch of a button her favourite is the disco ball! And it s wonderful for Abigail s mum, Lyndsey, to see her little girl playing and getting enjoyment from the sights and sounds in front of her. Especially when Lyndsey thinks back to when she first heard that Abigail had CHARGE, a genetic condition which can cause deafblindness. Abigail was diagnosed shortly after she was born. When she was finally discharged from hospital, Lyndsey wanted to take Abigail to a mainstream baby group, but because of her additional needs, was worried that her little girl might not get enough out of the sessions. Thankfully, she found out about Sense s new Early Explorers group in Liverpool. You have given Abigail a safe, exciting place to go, where she s free to explore. Each week at Early Explorers, Abigail s Children and Family Support Worker, Sue, introduces her to different sensory toys. Together, they discover which ones best help to stimulate Abigail s sight, hearing and sense of touch. And Lyndsey has now been able to get toys like bubble tubes and fibre optic lights for Abigail to enjoy at home. What s so special about Sense Family Days is that you are giving the whole family a chance to enjoy activities together, including Abigail s five-year-old sister, Megan. With your support, Abigail can continue exploring and making new discoveries each day. Thank you! It s a real privilege to see the progress children make. Every small step is celebrated and can make a difference to that child and their family. Sue Fawcett, Children and Family Support Worker Abigail s explorations have also continued outside of Early Explorers. At Sense Family Days she s experienced the thrill of a dry ski slope, stroked the animals at a farm, and enjoyed adventure at a soft play centre. 12 could pay for a kaleidoscope disco ball. The bright coloured revolving lights can help to stimulate the limited sight that a child who is deafblind may have.
Thank you for supporting the whole family You may remember meeting Ernie in your last issue of Reaching Out. Five-yearold Ernie has Down s syndrome, limited hearing and blurred vision, which means that he needs lots of support from his family, including from his twin brother Ted. Ted & Ernie Having a sibling who is deafblind can put a strain on children like Ted. They may have to take on extra responsibilities and everyday family life will revolve around their brother or sister. It can also be hard to see mum or dad worried about their sibling, and children like Ted often feel anxious too. Your kindness and generosity extends to everyone in the family. At the Sibling Weekend, you gave Ted the chance to have a real break from the demands of life at home and meet friends who understand how challenging it can be when your brother or sister is deafblind. Over the course of the weekend, Ted had an amazing time and did so much! He came back beaming and full of confidence, and we could see some of the independent skills he d learned during his time away. Helen, Ted and Ernie s mum Over the weekend, Ted and the other children got to try so many activities, from painting to climbing to football. At home, days out and activities often have to be tailored to Ernie s needs. But on the Sibling Weekend, Ted could enjoy so many new adventures. Thanks to your kindness, Ted had such a special weekend and he was able to forget about looking out for his brother and just enjoy being with new friends. On a Sibling Weekend, children like Ted can meet others who have a brother or sister who is deafblind. They can enjoy sharing experiences and trying out new activities. 75 could help another child like Ted, enjoy a Sibling Weekend. You ll give them the chance to forget the worries and responsibilities that can come with having a brother or sister who is deafblind.
You can go on a bear hunt too... Books are one of the real delights of childhood. Yet for children who are deafblind, many wonderful stories can be inaccessible. With your support though, Sense s Sparkles group at the Hadley Family Centre is bringing special stories, like We re going on a Bear Hunt, to life! You may remember the Sense Hadley Family Centre from our Big Build campaign in 2013, when kind supporters like you helped us to complete this special place for families. At the centre, children can enjoy feeling the clay paw prints of the bear, the swishy swashy long grass, the splish splash of the river (complete with a spray of water), the rough tree bark in the wood and the fluffy snowballs. It s a sensory delight for children who are deafblind. And through their senses, they can follow the journey of the book and go on their very own bear hunt. Thank you for helping Sense to lift this story off the page and enable children who are deafblind to really experience it. 45 could buy a sensory book bag containing a big book version of a child s story and sensory goodies to help bring the story to life. My Turn to Learn - thanks for your support Sense s sister charity Sense International has been raising funds through their My Turn to Learn appeal to help transform the lives of children and adults with deafblindness in Bangladesh. The kindness and generosity of supporters who gave to this appeal helped us raise 521,000 including a 216,000 contribution in UK Aid Match funding from the Government. Currently, children who are deafblind in Bangladesh get few opportunities to learn vital communication and life skills. And this means they are more vulnerable, isolated and at greater risk of poverty. Sense International is now using their experience, built up over many years, to train specialist teachers in Bangladesh, as well as mainstream teachers so that children who are deafblind can learn both at home and at school. It means that a child who is deafblind can learn to communicate and be understood, giving them the chance of a much brighter future.
SuPpoRTeRs CoRnEr Thank you for sending children who are deafblind on a Sense Holiday We d like to say a great big thank you to the wonderful supporters who helped us raise an amazing 164,027 for our Holiday Appeal, meaning 93 children who are deafblind got the chance to have a sensory filled, action-packed week. Your kind gifts made our Sense Holidays happen. Because of you, we have been able to organise even more holidays than we did in 2017. This means that even more children have had the opportunity to spend time with their peers, take on exciting adventures and experience new environments away from home. It was wonderful to read your kind words on the postcards and share your messages with Holidaymakers and families. So many of you wished our Holidaymakers fun, happy and sunny holidays well the sun has certainly been shining this year! We can t wait to share with you the fun and friendships our holidaymakers have experienced this summer. A huge thank you from the Sense Holidays Team. Sian, Alanna, Amy, Deb and Ruth Thank you tel 0300 330 9257 text 0300 330 9252 supporterservices@sense.org.uk www.sense.org.uk/reachingout Sense, The National Deafblind and Rubella Association, 101 Pentonville Road, London, N1 9LG. Registered Charity No. 289868. Patron: Her Royal Highness The Princess Royal