For brothers and sisters of disabled children and adults

Transcription

1 For brothers and sisters of disabled children and adults Information for children and young people who have a brother or sister who is disabled, has special educational needs or a serious long-term condition.

2 You re not the only one Siblings like you Sibling is another word for brother or sister. There are lots of young people growing up with a disabled brother or sister. We call these young people SIBLINGS. The good and bad Growing up with a disabled brother or sister, there are good times and difficult times. It s like this in all families, even without disability. Sometimes siblings like being with their brother or sister; sometimes they really don t. This is normal. It is normal to sometimes feel caring and protective and sometimes to feel fed up and irritated with your brother or sister. IT WOULD BE GOOD IF... It s nice to know that you are not the only one with a sib with special needs. 2 Chat to other siblings on

3 Time with your parent Time with your parent Ask your parent to spend some special time with you each day. This could be when your brother or sister has gone to bed. I f your brother or sister gets looked after by other people, ask your parent if you can do something special together then; swimming, shopping, going to the café. Tell your parent you want him or her to watch you in the school concert or sports day or other event. Send your parent a message about what you would like him or her to do like the one below. MESSAGE FROM SIBLINGS TO PARENTS Do little things each day that make us feel loved a hug, a chat together, help with homework, playing a game, having a snack together. PARENTS PLEASE READ <<<<THIS PART Listen when we say how we feel. We want you to let us know you have heard the feelings in our words. Don t try to give a reason or find a solution we just want a chance to offload our feelings. I m glad my brothers are like they are, otherwise they wouldn t be them and my life would be different 3

4 Understanding disability Not enough information Some disabilities or illnesses can be very hard to understand. You know the name of it, but not really know how it affects things like talking, walking or behaving. Sometimes parents try to protect siblings from getting too much information as they think it will upset them. Most siblings say they prefer to know the truth and find out from a parent, even if it is upsetting, rather than being told things by people at school. Siblings can feel that everyone else knows what s going on, except them. HOW TO GET INFORMATION Write down a list of all the things you want to know about the disability and ask your parent to explain things to you. Go on the internet with your parent and get more information together. Not all information on the internet will be exactly right about your brother or sister. Ask a doctor or nurse who sees your brother or sister to give you accurate information. If you have a very ill brother or sister and you are worried he or she will die, then tell your parent you are worried and that you need to talk about it.? Do you know that you can t catch a disability like you do a cold or flu?? 4

5 Your feelings Proud able to learn sign What to do with worries Talk to your parent or someone you trust. Worries get smaller when you talk about them or write them down. Keep a journal or diary and write down the things you are worried about. Put your worries in a box - written on slips of paper. Ask a parent to read them and talk to you about them later in the day. If you are worried about what will happen in the future, ask your parent to make a plan for the future and to include you in the discussions. GUILT BUSTING It is healthy to do things that you enjoy. It is good to have friends and activities outside your family. If you have fun and enjoy your life, you will be happier when you are with your brother or sister happy people are fun to be with. You deserve praise for your achievements. Make sure to tell your parent about things you do well at school or at clubs. It is normal to get annoyed with a brother or sister at times everyone does! Angry Happy Jealous sister getting lots Excited siblings Embarrassed brother Fed up Sad Pleased at In the future, I wonder what is going to happen to her Guilty Worried about the future 5

6 Difficult situations Stuff getting damaged If your brother or sister damages things, ask your parent to find you a safe place to put your special things in the garage, in a locked box or desk, in the loft, or at a relative s house. People staring This can be really embarrassing. People stare when they see someone different. Some things you can do are: Get cards to hand to people to explain your brother or sister s disability; ignore the staring and think about all the nice things going on instead; ask if you can stay at home sometimes. Having friends back Having friends come back to your house can be difficult. Talk to them about your brother or sister before they come and tell them how they can get on with him or her. Ask your parent to look after your brother or sister, so you can have some time on your own with your friends. Being bullied Siblings and their disabled brothers and sisters can get picked on or bullied because their family is different. If this is happening tell your parent or teacher at once. Getting hurt Some disabled children with a learning disability have really difficult behaviour. If you get hit, bitten, hair pulled, or hurt in any other way, tell your parent or teacher. Ask a social worker or nurse who visits your family for help to make it stop. Sometimes I get quite embarrassed when my friends come to our house. 6

7 Enjoying time with your brother or sister PICK A FUN ACTIVITY TO DO TOGETHER Create special memories If you have a brother or sister who has a short time to live, as well as feeling very sad you will want to have enough time together. Ask your parent to help you both do something special together. Get someone to take lots of photos and film clips of you together. Write a diary, make a scrapbook or a memory box, and fill it with writing, pictures, and things that will remind you of your brother or sister. I like to see people talking to my brother, he cannot talk but it makes him laugh. I am not too keen on the people who stare because that s rude and a bit mean. I love my brother very much 7

8 More information and help YoungSibs Service YoungSibs is a free service for siblings of disabled children in the UK where you can: Get information about disability, dealing with feelings and family life, and tips for coping with difficult situations on the YoungSibs website Chat to other young siblings and share your feelings, experiences and ideas on our safe moderated YoungSibs forum Get help from the YoungSibs team with sibling issues at home and at school. Other useful contacts ChildLine For help and advice about any problem including bullying Tel Young Carers service For help and advice if you are doing a lot to help care for and look after your brother or sister How to contact Sibs Website: info@sibs.org.uk Tel Address: Meadowfield, Oxenhope, West Yorkshire, BD22 9JD 8 Registered charity no Limited company no