Last Tuesday my brother turned thirty and my family and I spent three nights in Lanzarote to celebrate. I don’t think I’ve ever properly blogged about my brother before. Like me, he has Norrie’s Disease (also known as Norrie Disease), which is a rare genetic condition that primarily affects the eyes. However, whilst I gradually lost my sight, my brother has congenital blindness accompanied with severe learning difficulties. I know we are all individuals, but I have never met anyone similar to my brother before. His additional needs are quite unique.
In some ways he is quite able, as he can walk and is continent. These are two abilities my family and I are very grateful for. However, his comprehension and communication skills are extremely limited. He definitely understands more than he can express though. For example, my brother is unable to tell you his feelings. He can’t say if he’s feeling happy, sad or is in pain. Yet, he knows the words for a million and one food types and remembers the words to songs. Although, his renditions aren’t always accurate. They are making me smile just thinking about them. He can count to ten sometimes likewise if you ask him his name, age or where he lives he may answer correctly. Mostly, he repeats what you say instead. When my brother was younger it was a miracle if he spoke at all and when his voice broke it obviously confused him and he was quiet for a long time afterwards. He makes noises that we know means he’s happy, but scares the public as he is loud with it. Generally, when my brother speaks now he shouts and when he shouts he repeats himself over and over again. This can be really challenging. In more recent years he has become a little aggressive both to himself and others. At his worst he has drawn blood and lashed out. I think the worst that has happened to me is being grabbed in a head lock, pinched, scratched, generally grabbed and tapped very hard. Personally, even though I can’t see the danger coming, I’m pretty good at getting my brother to release me or move swiftly far enough away so I’m out of arms length since he can’t see to get up and chase me. When we get reports back that he’s injured one of his carers, I often wonder how they let it happen to themselves since they are professionally trained. If I can wriggle my way out of harm, how are they getting chunks of their hair pulled out?!
My brother has high energy levels and requires little sleep. He stays up late entertaining himself in his bedroom by walking around feeling, smelling and throwing things. He knows his way around my parents house unaided and goes to the toilet if he needs it. Nevertheless, he sometimes goes for no particular reason and then needs to be sorted out afterwards. He can’t wash, dress or properly feed himself. If he eats by himself with his hands he will eat at a hundred miles an hour. He needs fulltime care, which is tough on my parents especially now they are getting older. He is a strong fully grown man.
He has an interesting relationship with Calvin. I hadn’t had Calvin long when my brother accidently trod on him one evening. Calvin yelped out in pain, but funnily enough always moves now whenever he sees my brother coming. I’ve tripped over and trampled on Calvin numerous times, but he never moves for me. Calvin and my brother both have toys. Yet Calvin knows not to touch my brother’s ones. If my brother picks up one of Calvin’s toys by mistake, Calvin goes and tells someone by looking from the toy to an adult. He never goes and retrieves it himself. If my brother is relaxing on the sofa, Calvin occasionally goes and plonks himself in front of my brother wanting him to stroke him. My brother doesn’t realise Calvin is there, so Calvin helpfully nudges him with his nose. Then my brother will stroke Calvin, tap him, pull his ears, which Calvin thinks is great then rolls on to his back then we have to tell Calvin off for exposing his bits. He’s lucky that they are still attached! My brother likes to have a quilt when he’s on the sofa. I’m not sure how or when this happened, but Calvin now also needs a quilt when my brother has his. Calvin will put his head on my lap, look over to my brother and keep repeating the action until he has a quilt too. I think Calvin reckons he’s my brother’s equal. They are both Pisces I suppose.
It frustrates me when professionals suggest my brother has autism. Yes he likes routine, but just as much as the next person. It’s not as if he has a meltdown if his routine is changed, such as having toast for breakfast instead of porridge. Yes he may have shouted for porridge for an hour, but ultimately any food will do. My brother also knows that he can’t get certain things on holiday necessarily like having a hot chocolate before bed. This doesn’t bother him in the slightest. In fact, my brother generally behaves better on holiday. He loves the sunshine and will be quite content with sunbathing. He enjoys listening to the waves and playing with the sand on the beach. Similarly, he enjoys going on the plane. The vibrations and sound are weirdly calming for him.
Other quirks of my brother’s are that he takes his top off and a shoe without warning. We could be out shopping and he will be walking and somehow kick a shoe off. This can be done without us realising. The funniest was last year when we went to Fuerteventura. We were late for check in. So my mum, brother and I went to check in whilst my dad parked the car. My dad met us at security about half an hour later brandishing my brother’s shoe that he happened to find at the entrance. We had no idea my brother had been walking around with only one shoe on and clearly despite the multitude of passengers nobody had thought to pick up his shoe at any point.
Unlike many families with disabled children, my parents never send my brother to respite care. This is because he is unable to tell us what it’s like and whether he’s being treated fairly. It is also because respite centres don’t really do any activities with those in their care. My parents said they’d feel guilty knowing that he’s in an unfamiliar environment with strangers not being engaged, which I totally understand. Yet there will come a point when they won’t be able to care for my brother all of the time and difficult decisions will have to be made.
Growing up with a sibling who has a disability more severe than your own is probably quite a rare experience. Usually having a big brother means you have someone to fight with when you’re younger and a protector when you’re older. In my case despite being the little sister I am the protector. I’m very vocal when it comes to organising my brother’s care and I’m aware that one day it will be my full responsibility. In lots of ways my brother is lucky. He has a loving family and does fun activities day in day out never having the stress of adult life. Though it must be incredibly frustrating for him not to be able to verbally complain or express his emotions. It’s great that he does laugh hysterically and smile broadly on a daily basis. In turn he cracks me up all of the time with his ways and even knows how to embarrass me in public when he exclaims ‘Selina’s crying’ every time he hears a baby scream. The perfect big brother.