How do you explain a Syndrome Without A Name to a three year old?

“Siblings have a lifelong need for information, they often experience social and emotional isolation, and have to cope with difficult situations…” 

A few days ago, something happened in our house that got me thinking about The Beep and her experience of having a sibling, her only sibling, with complex and undiagnosed disabilities. It was a typical sort of a weekend in the Mavis household – well, typical of our weekends of late, trying to fill the time while we are waiting to move house, everybody was mildly bored and irritable and it was raining outside, so we were cooped up, four humans, four cats, seeking out entertainment within the confines of someone else’s four walls (which, by the way, are desperately in need of redecorating. Can you tell I’m not a fan of renting?)

The Duplo was out. Snacks had been had. Some ridiculous Bollywood-esque electro-pop dad dancing had been done to The Bom Bom Song and Korea’s latest export, Gangnam Style, (not my choice, obviously). Bath time was approaching. Everybody was getting a little tired. Out of nowhere, The Beep flicked into dictator mode and all of a sudden if we failed to cooperate with her barking demands, we were branded poo-poo heads, silly pong pongs or boys with no dresses or earrings. Don’t you just love the way a three year old can hurl an insult? Having whipped her wrath around both parents and all four cats, she turned her attention to her brother.

“Baby Orange, you are stupid

And in a split second I was floored. Stuck fast between a searing hurt for my son who, let’s face it, is likely to have to brush off many such a slur during his lifetime, and a dawning realisation that the time is coming when we will have to start explaining to The Beep what’s different about Orange. She needs to be prepared for a future of dealing with other people saying just that about her brother. I desperately hope that they won’t and that he’ll be surrounded by love and affection everywhere he goes, but human beings just aren’t like that. He may or may not be conscious of the   cowardly vitriol aimed in his direction but I can be damned sure that his sister will be. I knew in that instant it was time to start arming her with the knowledge and ability to cope with other people’s discomfort about disability. Particularly learning disability, which Orange has in as yet unknown magnitude.

It is very hard to tell how much The Beep understands about her brother’s difficulties. Children are so perceptive, there is no doubt that she will have absorbed a great deal of our anxieties. From the age of two and a half, she accompanied me every week to private physiotherapy sessions for Orange, during which it became very obvious indeed that he was dealing with a great deal more than just the stiff neck we thought we were treating. She has come with her Dad to pick us up from hospital after Orange had surgery, and held his hand in A&E while his oxygen levels are checked. Just this very week, I have had to explain to her that yet another stranger was coming to the house to ‘help Orange learn to play/eat/sit/talk’ and that I needed her to be very good and quiet while they were here. She has sat in room after room while doctor after doctor, therapist after therapist, has asked me question after question about Orange’s development, disabilities, health and habits.

I am sure she must know, deep down, that most 18 month olds don’t need so much help to learn how to do basic things. And yet The Beep is so overwhelmingly positive about Orange. Yesterday, while eating a beef curry, he was doing a brilliant job of grabbing the spoon and shoving it into his little cake hole. We have been working on self-feeding for months. Whoops of joy, enthusiastic clapping and a cheerful ‘Well DONE Baby Orange, you’re doing SO WELL’ clamoured across the kitchen from where she stood, playing boats and pirates at the sink (read, flooding the kitchen…) The Beep has become a veritable Orange Cheer Leader.

But pretty soon, I am expecting her to ask me why her brother can’t do the things that her friend’s little brothers can do. It is crucial that we get the answers right. I don’t know yet what they are, and the fact that Orange remains undiagnosed, and could be a SWAN forever, makes that job just a little bit harder. How do you explain a Syndrome Without A Name to a three year old? Answers on a postcard please…




  1. lexilil 27/09/2012 / 10:23 am

    Brilliant post as always. Such a hard topic. We've always been honest with my daughter about all the tests and difficulties her brothers having, and trying to do that without confusing her is difficult. Now, age 12, she tends to describe him as “A bit disabled.” She's better at not having to feel that she has to explain him, or justify him, She's often embarrassed by him, but all sisters are embarrassed by their brothers sometimes aren't they? She did go through a really bad spell in primary school when she got so hurt by people picking on her brother and name-calling, it was a nightmare to see, and luckily the school were incredibly supportive in getting her through it (and getting the name calling to stop). It's a balancing act with siblings, letting them know how to support their sibling (the cheerleading is great) but also giving them space to be kids themselves and not feel their little brother is their responsibility. Good luck with it x x

  2. KARA 20/10/2012 / 7:12 am

    I have no idea how to answer this as I feel in a similar situation. Addy is not 17 mths. She since the day she has been born has spent most of her weeks at hospital apts. she even does a small session with G now in his SN per school. I am at a loss what to tell her. I am worried for what she may encounter in the future x

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