My Journey As A Young Carer

 

November 11, 2015. The diagnosis results from Achieving For Children came through to our inbox. What we discovered was not just surprising, but life-changing. At only two years of age, my brother was diagnosed with severe Autism. Now at the outset, this may not seem like a colossal setback. After all, we now know 1 in 100 people are diagnosed with ASD and that we should become more acceptable of people with disabilities. However, this day saw what was once a peaceful and close family almost collapse. My hopes of experiencing  the love and affection of a younger brother would be washed away.

At the time, I will admit, I had very little knowledge about the situation, but for all I knew, I was back to being that lonely child. Not having what you desire most is painful, but having something you desire but can never use is even worse.

It seemed as if everything could only go downhill from there. Not only had my idea of the life ahead for me seem restricted and isolated, but we were also in great uncertainty as to what the future would hold for my brother. In a world that seldom tolerates even the most minor mistakes, it appeared as though my brother wouldn’t in the slightest way be cared for.

We will all, sometime in our lives, experience adversity and predicament. Be it big or small, long term or short term, mental or physical, we know that there are some parts of our destiny that we cannot control. The pain we feel as a result of this is not merely the pain of the issue itself, but rather the idea of not being able to solve it and more importantly, our own view of the situation. Any dilemma we face is only as severe as we make it. 

After many months and perhaps almost years of the depression we as a family endured, we knew it had to come to a stop. We knew that time would not stop for us to wallow in our emotions. We knew that that the only way to go was forward. We stopped being in our problem: we started being with it.

Often, we tend to tie our quandaries to our identity and destiny. We tend to feel as if they control us and that we have no other choice but to succumb to where it takes us. The only way to escape this emotion is not by changing the problem, but changing where we stand with our problem. If we are in our problems, we will continue to be with it for the rest of our lives. If we decide to step out of it and learn to be with it, we will eventually realise that they are not problems with our lives, but rather an event or reality that is coexisting alongside it.

Fast forward 7 years. My brother is still the same non-verbal, severely autistic child. We are still the same people that were once shaken by an email and letter. We are still the same people that once feared our future prospects as a result of the condition we are still in. Even after all this time, we continue to face the meltdowns and sleepless nights, the sacrifices and stresses, the conflict and overwhelm.

By stepping out of what we initially conceived as a lifelong predicament, we now understand that there is nothing special about special needs. To us, it’s simply a neurological variation that results in both restricted and enhanced behaviours. The bursts of anxiety or uncontrollable laughter or constant unintelligible demands are now what make us love him more and more as the days go by. The love he gives us is immense and unconditional, be it implicit or explicit. Through the small things he does and the small requests, I have now found my place as a brother and guardian. I am no longer that lonely child I once was. His volatility makes every new day both a challenge and an adventure.

It makes me proud to be a young carer, and whilst I still fear what the future holds for me and my brother, I now realise that I can face it with the strength built from my previous problems. When they do come into my life, I can step out of it and  be with it.