Living a life with a sibling who has complex special needs can often be quite challenging. I’m currently in education, I have a job and I do everything I can to help take care of my sibling.
I was just three years old when my sister was born. At that age, I didn’t really understand that she was different, I didn’t understand that she wouldn’t be able to do the things that I could do such as walking and talking. It was only as I got older that I began to fully understand that she had disabilities and the extent of those disabilities.
Having a sibling that required round the clock care meant that I had to learn to be independent. I had to learn how to be able to do things for myself as my parents couldn’t always be there to help me.
Most children don’t have to learn how to be independent from a young age, but I did, and I believe that this made me stronger and seem more mature than most others my age throughout both my childhood and teenage years.
Through my years in education – primary school, secondary school and college – I have mainly kept my personal life private and only told people about my sister if I felt it was relevant or if they asked. My friends all know that my sister has disabilities. Most of them have met her and treat her like my family and I do, they don’t see her as someone with disabilities, they see her as a child enjoying life. I don’t tell any of my teachers about her unless I feel it is important, for example if she is ill and I feel this may affect my work.
In primary school, I opened up about my sister in year six. We were asked to pick a charity we wanted to raise money for and I suggested a charity that has helped me and my family throughout my sister’s life. I was asked to give a speech about this charity and what the charity meant to me. This is when most of my teachers and fellow pupils’ parents found out about my sister. Giving this speech gave me the confidence to speak up about my sister as I had never done this before.
In secondary school, again, I didn’t really tell anyone about my sister unless it was necessary. My parents got in contact with my form tutor and informed her about my sister in case I ever got upset in school if something happened to her. My head of year found out about my sister in year 10 when he asked if there was anything that may affect my exams that the examiners should know about. However, I didn’t really open up and talk about my sister as no one really asked me much about her.
Up until the age of eleven, every year I would go on a ‘Siblings Weekend’. Here, I would meet other children who were in the same or a similar situation to me (have a sibling with some form of disability). On these weekends we would learn what it’s like to be disabled through discussions and activities such as being blindfolded and being guided by someone. We would also occasionally discuss personal experiences as this helped us support one another. Attending these siblings weekends helped me as I knew there were people I could talk to and who would understand.
I’m now seventeen years old and studying for my A-levels at college. On top of this, I have a part-time job that I undertake at weekends and sometimes during the week, and I help out at home as much as I can. So my life can be pretty hectic at times. I try not to let this get to me and get on with my work to the best of my ability.
My sister loves school. She attends a special needs school that also provide respite for her for three nights every month. This gives my family and me the break that we need so that we can spend time together and do things we may not be able to do when my sister is at home.
Life with a sibling living with complex special needs: Yes, it can be hard at times – everyone in this situation would agree, and yes it sometimes takes over mine and my family’s lives. But no, I wouldn’t change my sister for the world. I love her just the way she is.