By Karla Imossi
Five years ago, I gave birth to my beautiful son Lawrence. Never in a million years would I have thought that parenthood would be the single most important role any human would ever play in the life of another. But let’s be honest, no one ever prepares you for parenthood. No one ever tells you the real struggles of being a mum. The overwhelming feeling of suddenly having a human being under your care. The helpless fear of not knowing what to do when your baby has been crying for three hours straight.
But now let’s be really honest, no one ever prepares you for raising a child on the spectrum. I wish I had known five years ago that autism means different, not less. I wish I’d known that no label would change our little Lawrence, and I wish I’d known that everything was going to be OKAY, that although there will be really hard days, it’s not always going to be like that. Those good days will come, and when they do, they will be the most magical.
Lawrence was diagnosed with Autism Spectrum Disorder when he was two years old because we pushed for his diagnosis. In fact, his diagnosis then was ‘suspected autism’ because he was too young to be officially diagnosed. At the time, many people asked me why it was so important to me to have him diagnosed when it was ‘just a label?’ For me it was never a label, it was a diagnosis. It meant finding every possible means of help to start Lawrence on early intervention. It meant jumping on board a journey we never asked to embark on.
But let’s be honest, no one ever prepares you for parenthood.
Our major struggle with Lawrence has been coping with his anxiety. Lawrence started to self-harm at the age of one. I do not think there is anything worse than watching your baby suffer and not being able to do anything about it. When we asked for advice, we were told it was a phase that will soon pass because many children head banged, and we held on to that hope until he was diagnosed. Four years on and Lawrence still self-harms. Why? Lawrence might not speak, might not tell me he loves me, might not hug and kiss me as much as I would like him too, but he feels. He perhaps feels more than any neurotypical person does, which is the reason he struggles to keep these emotions balanced.
Therapy and routine is what helps him manage his anxiety. It is what helps him strive and live a happy life, just like everyone else. I like to think of it like the human body. Routine is like your heart; you need it to breathe, you need it to feel, you need it to survive. Therapy is like your brain; you need it to help you breathe, help you feel and help you survive on your own. You might be able to live without therapy, although you will not excel, but you definitely cannot live without routine. When both these things are taken away from you, the world comes crushing down. Not just any world, but the world you have no control over, the world that was made without you in mind and that you have no choice but to survive in. This was lockdown.
Our home, which we all consider as our ‘safe haven’, became our worst enemy. When you have been through a traumatising experience inside a place you consider safe, it is very hard to bring it back to its original state. Every corner reminds you of a heart-breaking episode. Our escape was the outdoors so that we could transform our home back to its original safe environment. But the outdoors was the outside world Lawrence so feared. He was stuck in the middle of an endless tunnel, that he could see nothing but pure darkness.
our ‘safe haven’, became our worst enemy.
So how does he cope? He does not. Autism is not something that goes away but instead an ongoing learning process on an endless roller coaster to a destination called ‘the unknown’. Lawrence is really good at masking his anxiety (known as social masking) and can appear to be fine. I often get told by his school that he has had a good day, but what that means to me is that it will be a nightmare as soon as we get home. This part right here is what can make autism so lonely. That people do not see the real struggle and it is a war fought mostly behind closed doors. This is the reason we raise awareness and acceptance but above all, this is our mission, to help Lawrence be in control in a world he has no control over.
Pick up next month’s copy for part two of Karla’s contribution.