Over the years, Elsa and I have talked about her brother’s disabilities and what it means for him, her and us however, I have never thought that she really saw it as a big deal as to her this is just normal life. I feel awfully guilty when I think about all the things that Elsa isn’t going to be able to do as effortlessly as some of her friends. For example, playdates. As I’ve said before, I have generally avoided inviting her friends over as it’s often incredibly stressful with Jude around. He wants to join in, Elsa doesn’t want him to and then he has a tantrum. Or, he doesn’t want to join in but decides to go off on one of his crazy moments and keeps irritating her and her friend by taking things out of her room, running around and shouting, repeating silly noises to get their attention, poking and hitting them, etc.
Here is Elsa.
I thought it would be interesting to hear straight from the horses mouth so to speak, how she feels about her brother. I have written exactly what she said so don’t start assuming my English has deteriorated…
What do you like best about Jude? “That he (*sits silently for a while and then whispers that this is very hard!*) plays with me sometimes. I like that he’s crazy and does funny things.”
What frustrates you about Jude? “He annoys me by making silly noises and he makes words up like Elsa nee Elsa, Elsa nee Elsa, over and over again. He takes stuff from my room sometimes, once he took all my lego and I’d spent ages making it. It was the fire engine and I found a few of the front bits on his bed.”
How do you feel when he has tantrums? “Bored, because there’s no one to play with because you’re always having to sort Jude out. So yeah, just bored.”
Me: Does it upset you? “It doesn’t really bother me that much, I’m used to it now.”
What do you think he’ll do when he’s a grown up? “He’ll be a clown in a circus! He’ll probably live with someone, he might have a few pets because he really likes animals. He’ll probably have a king sized bed. He might learn to play an instrument as he really likes music.”
What sort of job do you think Jude could do when he’s older? “Apart from being in the circus, perhaps he could do a job like selling cars if he gets a bit more clever when he’s older. He could work in an aquarium because he really likes fish but he’d have to remember to feed them and clean them out. Maybe we can get him a fish tank and some fish so he can practise looking after them.”
What games do you like playing with Jude? “Hide and seek but he cheats by looking. We used to play jumping games onto the bean bag and make a slide and slide down it off the bed but we can’t now as he won’t let me in his room.”
I really worry about Elsa and try my hardest to maintain as normal a life as possible for her. This is really only possible with the help of my parents who often take Elsa out to events or just have her round their house for a few hours. Her and my mum bake cakes together, make things or just chill out and play in the garden. This summer they’re going to Paris for a couple of nights together and I’m so jealous!
I was considering getting Elsa in contact with other children that have a disabled sibling so have registered with Carers in Herts (www.carersinherts.org.uk) as I know they have a good Young Carers section. I’ll be looking out for other networks but may also speak to some of the parents at Jude’s school, see if we can make some sort of sibling network ourselves. It might be nice for them to get together sometimes and have a social event or just a play in the park; it may also reflect on the parents and create a bit of a support network as I really think this would enhance the school experience for the extended families involved.
I have found another charity that I want to get Elsa in touch with that is entirely for siblings of disabled children and adults – this is their link if you fancy a look http://www.sibs.org.uk There are lots of interesting sections on the websites and I’m going to spend some time going through them with her this week.
Does anyone have any stories or information about siblings of disabled children? I’d love to hear from you. A x