If you don’t follow Special Books by Special Kids already on YouTube, Instagram or Facebook then you really need to as what Chris and his partner Alyssa produce on their channel is inspirational, life affirming stuff! Through December 2017 they are travelling the length and breadth of the UK interviewing families and individuals who have rare conditions to raise awareness and showcases the beauty in our diversity. Chris contacted us in November to ask if he could visit us while he was over here and as big fans of his work we were thrilled to agree.
The interview itself is fantastic and as I wasn’t in the room as Chris chatted with my boys it was emotional for me to watch it back and listen to what was said.
As part of the interview I show how Harrys eye easily pops out and is replaced and how simple it is to glue his prosthetic ear on. We chat about our hopes and fears for the future as well as the challenges linked to Harrys syndromes and the incredible ways in which Harry has shaped our family and us as a brother and mum. I definitely feel that we raised awareness about facial disfigurement (in Harrys case, Goldenhar syndrome) and showed the personality of my sunshine boy. The comments have been overwhelmingly positive and one of the main focuses of the support has been for Oliver. Thousands of people have watched the video now and are all commenting on what I have known for a long time – that Oliver, as his brothers friend and protector is simply amazing.
So often where families have a child with additional needs or a disability, people will applaud the strength of the parents in supporting them or compliment the child themselves on facing their challenges so bravely. Rarely are siblings recognised for the incredible part they play and the impact that having a SEND sibling (both positive and negative) can have on them is often never fully understood. He might be neurotypical but he still has very special needs, in the sense that they are different to other siblings but they’re not always addressed as quickly as his brothers (and sometimes, not at all which makes me sad even to acknowledge and admit) Wonder the Movie covers this really well and the journey of a SEND sibling is shown subtly yet beautifully. You can read my film review on the blog. Here are 5 reasons why I believe that Oliver is the super hero of our story.
He is incredibly patient and accepting.
Oliver has learnt that for a huge portion of the time, rightly or wrongly, he comes second. For no other reason than Harrys needs are immediate whereas Oliver’s can wait. Usually he’s dying to show me something on his phone, update me on events at school or share some essential life hack from YouTube but I am feeding, washing or supporting his brother. Conversations often happen while I am multi-tasking and we ‘chat’ over or around Harry as I make sure he isn’t wearing his lunch, putting the cutlery in the microwave or that he is cleaned properly after toileting etc so although the conversation happens, it’s not always with the focus and attention I would like to give unless we have some time together, just us. Recently I briefly nipped out of the bathroom to answer one of Oliver’s questions. When I returned, Harry had turned the hot tap on in the bath and was sitting in what would have rapidly turned into a boiling pot. I just can’t leave him.
Sometimes I can be away from home for days or even longer when Harry has his surgeries and I know that Oliver misses me terribly (as I do him) but he never ever complains. He never sulks. He just accepts that this is our life and that coming second never means he is loved less. It simply means that when you are part of a family like ours, we all have a vital role, none more or less important than the others but some more demanding on our time. Oliver never had the luxury of those natural egocentric years where the world revolved around him as a toddler. He has always had to share his world (being Harrys twin also means he never had time as a single baby with me either) but he loves his brother and so he never questions it. He simply accepts that this is our life.
He has amazing empathy and maturity
Some adults struggle to sympathise with others let alone empathise. The difference being sympathy is the feeling of compassion, sorrow or pity for someone else whereas empathy is the ability to step into someone’s shoes for a while and really know their journey. Oliver has this ability. He totally ‘gets’ the struggles that other children feel. Not necessarily as young carers like him but day to day with the ordinary challenges of being a pre-teen in the 21st century. His teacher told me about Oliver’s efforts to include everyone in practical lessons, even the new boy who people were struggling to accept due to his ‘quirky’ ways. Oliver understands inclusion and demonstrates it without even knowing it. Over the half term holiday, his friend’s parents gushed about what wonderful company and role model he was and I can guarantee that whenever I take him anywhere we have compliments about his conduct and manners. The make up ladies on Good Morning Britain said he was the loveliest boy they’d ever had on the show!
He is considerate and thoughtful. When he wanted to attend a martial arts class a few years ago, we had to take Harry along with us to the taster session. There, he saw a room full of baby toys which he kicked and screamed to get at for the duration of the class. By the time Oliver had finished, I was a hot sweaty mess and Harry was still protesting. We never went back on Oliver’s request. He said he hadn’t enjoyed the class anyway but a part of me wonders if he said that to avoid the trauma every week. He was putting me and Harry before himself, something that even many adults struggle to do and one of the reasons that I know he’ll make an amazing father in the future.
He constantly demonstrates understanding and forgiveness
There have been countless times when we have gone out as a trio and had to return home early because Harry simply couldn’t cope and had a melt down (not a tantrum, they are not the same thing) As Harrys 11th birthday treat we took him, Oliver and my partners children to Thomas Land, Drayton Manor Park. While on one of the rides, I noticed Harry had his arm around Oliver and was hugging him close. Only he wasn’t hugging him. He was punching him in the head. I couldn’t get to them as the ride continued and Oliver was sobbing in frustration and anger by the time he got off. He never hit Harry back. He simply came to fall into my arms and say how hard it was to love a boy who hit him so much. But moments later they were holding hands and walking around the park again. Oliver knew that Harrys punches weren’t a sign that he didn’t like him as it would be if anyone else did it. He knew that this was Harrys over excited expression of affection and though it didn’t make it right, it made sense to Oliver and in no time Harry was forgiven. Time and time again we have returned early or not gone out at all. I’m not saying that Oliver doesn’t find that hard and I worry sometimes that a simmering resentment is being buried within him, only to corrode his happiness but he assures me that he understands and I always make sure we talk through anything that happens. On that note…
He communicates well
One thing Oliver and I can do incredibly well is talk. We are both incessant chatter boxes and from a very early age I encouraged Oliver to recognise a variety of emotions. As such, he has incredible emotional intelligence and is very aware of his own feelings and those of others. Everyone we meet comment on the quality and confidence of his conversations and his eloquence in talking about life with Harry on the interview with Special Books by Special Kids was raved about by the viewers.
He will talk openly with me about his feelings, worries and fears. We discuss strategies to deal with the stares, whispers and questions that we get when we are out and about and self-reflect on what went well and what we could have done better when there has been a situation with Harry. In many ways he talks like a grown up and I have to remind myself that he is still a child so that I don’t unfairly burden him with the responsibilities of adulthood but I love that he speaks so freely with me and can express himself so well. You will never hear me dismissing his concerns or telling him to ‘man up’ when it comes to sharing his emotions because I really do believe that good communication is the key to positive mental health and I want my big boy (3 minutes older really does matter when you’re a twin) to know that his voice is always valid and valued.
He’s incredibly protective
Without doubt Oliver is Harrys most fierce protector. When they were much younger, Oliver didn’t notice the grimaced faces and pointing fingers but as the boys got older and he saw, it used to enrage him. He has asked for permission more than once to punch children who are being mean to his brother and although my head said “Sure son, go for it” at times, I tried to explain why it was more important to educate people than simply punish them for a lack of understanding (and basic manners).
When Harry had his big reconstruction surgeries, Oliver cried that he didn’t want his brother hurt and he still has a real fear (not without good cause but that’s another blog) that Harry will escape from the house and run off so he’s constantly checking the doors to put his mind at rest that the house is secure and his brother is safe.
Oliver talks about what he will do with his life, travelling and having a family of his own one day. But he always reassures me that he’ll be here for Harry. He tells me that looking out for his brother is something that he wants to do as much as feels that he should. I hope that’s true as I am sure that even the most heartfelt of intentions is influenced by some essence of responsibility.
For all of these reasons and more, Oliver is the hero of our story. He has grown up with a brother who has never been a friend or play mate for him as for about the first 8 years of his life Harry functioned in isolation, preferring his own company and only just tolerating other children in his personal space. I cant imagine how lonely Oliver must have felt at times. The days when he wanted a brother to play with, to moan at or laugh with, to even fall out and make up with – all the things I dreamed they would do while I carried them. Although I may not have the life I expected, I have two boys I could have never dreamed of. Harry with his purity of soul, my sunshine boy who radiates love (and mischief) and Oliver, who is wiser and braver than his years, who accepts that our life is different to that of his friends but embraces it regardless.
He shows me every day what love means and on the days when I question myself as a mother when I feel like I’m getting it all wrong, I only have to look at him to know how much I have got right. In the interview we did with Chris, my 12 year old son explained it better than I’ve ever heard from an adult. He said “Love is an action. It’s not something you say, its something you do” My boy may not have to perform the action of putting on his cape but he is a super hero in my eyes and I am beyond proud to be his Mum.