Sarah isn’t sure when or if she should tell her new boyfriend about her disabled brother. Mark feels guilty about his feelings, but he is sometimes ashamed of his sister - the way she spits and dribbles - and won’t invite his friends home. Samantha is sad. She loves her little sister but there’s been one dash to the hospital too many. It’s hard to see her parents in tears, hugging each other and receiving phone calls from worried relatives.
Do they love her this much? Meg has a younger brother and sister at our school, both profoundly disabled, and has always helped with their care.
These are the brothers and sisters of children with disabilities, and theirs can be an unusual childhood. I can only guess at what it’s like. I see them at school fetes and open days, which provide good opportunities for them to talk and share experiences. But what surprises me is how often they come to us as volunteers or on work experience. Many seem fascinated by their disabled siblings and are drawn in to this special world of feeds, physio, communication systems and behaviour charts. Some have even come back to work with us. You would think they’d had enough of disabled children - living with a child you always have to make allowances for, a child who may keep you up at night, destroy your possessions, take your parents’ attention - but they are often the members of staff who are most down to earth, non-sentimental and just get on with the job. They also see the funny side of disabled children and can laugh with a black humour that people less involved might find shocking.
It can be difficult, but it’s not all bad news. Having a disabled brother or sister can enhance lives, open up new friendships and help to develop maturity and skills that will be useful throughout their lives.
I don’t want to generalise; siblings of disabled children are individual people and not necessarily heroes, but they do seem to share a high level of maturity. I caught up with many of them at the autumn bring-and-buy and was filled with respect as I saw Sarah bringing her boyfriend to school and showing him around; Mark telling me he had done a presentation on autism at his secondary school, letting his classmates and teachers into what had been a private world; and Samantha, always struggling with the times she felt her parents favoured Tara, supporting them as they juggled manning a stall with caring for her little sister. As for Meg, she’s training to be a teacher now and wants to come back and work with us. Her insight and special skills mean she’ll be a valuable member of staff.
Maria Corby is deputy head of a special school for pupils with severe and multiple learning difficulties. She writes under a pseudonym
