Six years ago, I was a relatively new autism parent. To be honest, I still felt like a new parent, navigating my way around a world full of vomit, shit and soft play when Joseph’s diagnosis was handed to us like a shit sandwich.
I have a friend who writes about the use of language and terminology when delivering news of a disability to parents. Some of us are half expecting an autism diagnosis by the time it’s finally delivered and it hardly comes as a shock, but it’s funny the words you cling on to. I knew very little about autism and had only one vision in my head. I had a child who wasn’t speaking and wasn’t toilet trained and I couldn’t see beyond that.
I didn’t realise that autism came in so many shapes and sizes and at that stage (and even at this stage) it’s difficult to predict what the future held. My logical brain needed answers, mainly in the shape of why he was autistic and how autism would affect his day to day life.
Far from immersing myself in a sea of knowledge that was available on the internet, I backed away from it because I wasn’t ready to handle it. I feared the future, not through lack of understanding but because I honestly didn’t know what the future would hold for Joseph. Even now, I wonder whether he’ll ever have a girlfriend, a qualification, or a job because that’s what society appears to measure success by.
I decided very quickly that the word autism wouldn’t be a reason for Joseph to not achieve something, no matter how small the achievement was. I didn’t want to be that parent who said, “he can’t do that, because he’s autistic.” I knew we would need to make allowances in certain situations but I wanted him to have every opportunity available for him to not just survive in a somewhat chaotic world, but to thrive. For him to be happy and to have parents who understood his challenges, but helped him overcome them.
Joseph wasn’t the only one to face challenges. I faced them almost daily, trying to acquire patience (if only it could be purchased at the supermarket!), fill in mountains of paperwork to get Joseph the support he was entitled to and learn more about the ‘system’ (fuck the system is what I have learnt).
The best piece of advice I was ever gifted, was to to pick my battles. Some fights are worth every bit of energy and others you simply have to let go. I don’t have the time or energy to get into a squabble about every little thing that goes wrong. I need to conserve my energy for the bigger issues, whether that be fighting the system or gently negotiating with Joseph himself.
There are days that I have been sad and angry and know there will be more of those days to come. I’m not angry at Joseph, I’m angry at the system, the fight and sometimes the world. Some would say that being angry isn’t constructive and won’t help either of us in the long run and they may be right but I’m a strong advocate for speaking up and releasing some of those feelings. I hate the fact that so many parents are pressured by social media to say that life is great, when sometimes the bottom line is it sucks no matter what you’re dealing with.
There are days when my smile stretches from ear to ear, knowing that Joseph has made progress. Whether that be with his speech or language, his social interaction or the fact he’s been a shining star in a stage performance (not genetic).
I have every bit of faith in Joseph. I am in awe of his fighting spirit and his humour because I know it’s entirely genetic. I admire his bubbly cheeky personality that always manages to charm anyone who he meets.
I may not ever know what the end game will be but I know that he is happy and he is thriving.
He has an army behind him and he has me by his side.
He will be everything he was destined to be and more.