Let me begin by saying that this isn’t a pity party. The purpose of disclosing such a private and honest chapter is to one – mentally regurgitate what I’ve kept secret for no logical reason and two – lend some awareness to those who would otherwise be oblivious to the challenges that unfold behind closed doors. Of course, this is only a minute snapshot of my story.
The one-sided meltdown
When you grow up with a brother who is autistic, everything is one-sided. Conversations, fights, you name it. I don’t recall my parents sitting me down to explain the meaning of autism. I only remember being granted the honorary ‘big sister’ title, despite the 8 year age gap. Looking back, this was probably a sober attempt to inspire resilience and justify the Judge Judy calls they made on a daily basis. It was my brother’s way or an emotionally exhausting meltdown, so naturally, all actions were geared at avoiding the latter.
The harrowing transition from naivety to awareness took a mental toll on me. The only conclusion I can draw from this chapter is that naivety can be a blessing in disguise and awareness, a bittersweet gift from hell. As a child, going to a restaurant and asking for a corner table so that we could shield my brother from the gawking eyes of the public – a situation that could easily spark a tantrum – was by my definition, normal. And why would I question that? I had zero reason to. After all, normality is relative and I didn’t know any different.
When you grow up, questions and concerns start to accumulate. At least, that’s my story. The thought of being appointed my brother’s future guardian triggered an unsettling degree of anxiety. This wasn’t something prompted by my parents, it was just my brain whipping up a series of previously suppressed emotions. Needless to say, this was not what you would categorise as a typical concern troubling the general teenage population. As you can predict, my sense of normality had faded rapidly at this point and I had lost touch with the resilient ‘big sister’ character my parents had manifested.
There are several moments that I want to erase from my memory completely. This one tops the list. Allow me to set the scene – I’m in year 8 or 9 and I walk into a conversation, a friend of mine is sharing an amusing story pulled from the local grapevine – something about a crazy person stripping naked and urinating in the library. Unbeknownst to them was the fact that the crazy person in question was my brother. That was hard to come back from. Even though this statement doesn’t apply now, it pains me to admit that I was embarrassed and ashamed.
A series of fortunate events
For the sake of our long term sanity, we’ve always had to clutch onto anything resembling a silver lining. We’ve been practicing for years and my parents especially, excel in this department. Growing up, they would always urge me to take comfort in the fact that we weren’t living the worst case scenario. Our case managers and carers – many of whom are close family friends – till this day, add credit to this claim. My family and I have met so many generous souls over the years – people we wouldn’t have otherwise met if it was not for my brother’s circumstances. I don’t need to look far to restore my faith in humanity.
My brother has a roaring sense of humour and a personality that outshines most – something he reserves for those he deems trustworthy. Lucky for us, his comical side emerges more often than his tantrums these days. Being able to see a stark improvement in his temperament and abilities is a victory like none other. These are the key milestones that keep us going.
The most fortunate, life-defining event of all is one I witness daily – my parents undying strength and love. The sacrifices they’ve made and continue to make each day cannot be counted or described. The patience and resilience they display is un-freaking-real. I have to believe that my internal strength stems from the obstacles we’ve crossed as a family. I have to believe that without it, I wouldn’t be the empathetic, ambitious, go getter I am today. Maybe, without it, I would be more inclined to settle.
What a girl wants
I want to renounce my ‘big sis’ title and cash in my dollars for a genuine sibling bond. The truth is, I crave the sibling connection that most people take for granted – to the point that I catch myself feeling envious of others – not in a you don’t deserve that, just in a I want that kind of way. You would think that with over two decades of practicing patience, I would be on par with the Dalai Lama. Nope. Still working on it. The truth is that I still find it challenging to spend quality time with my brother, and that scares me shitless. It’s one of those forever work in progress things. Taking on board the legendary advice of the British Government, I’ve got to keep calm and carry on.