On his way…..
I can honestly say I have loved Touristo since the moment I found out I was pregnant with him. He was desperately wanted, and from the minute I saw those two lines saying he was on his way, my heart beat for him. The only thing I knew about him at that stage was that he was male and that he enjoyed listening to Brian McKnight. Nothing else mattered.
Nice to meet you
So after a lot of waiting and a rough pregnancy, it was time to meet our baby. The labour was very long, and by the end of it I was completely exhausted. Just when I thought I was about to pass out from fatigue, Touristo decided he would grace us with his presence. The moment the midwife gently laid him on my chest was the most beautiful thing I had ever experienced, and I remember sobbing “he’s perfect, he’s perfect, he’s perfect”, over and over. Now to be fair, nobody is perfect but he was just as he was meant to be. In hindsight though he was long and skinny, covered in vernix, his skin was a weird colour……but he was mine and just as he was meant to be. By this point I hadn’t slept in over 2 days and I still couldn’t sleep now because I was so enamoured.
I had just birthed my very much wanted child. He was perfectly healthy and he was mine. I had never felt love like that.
Right from the onset he had issues coping with the world from a sensory perspective. He needed to hear the steady rhythm of a heart beat to help him sleep. He needed to be swaddled to relax him, and loved touching and mouthing everything he could. But when these needs were met, he was the happiest, sweetest, gentlest baby on earth. It was like someone took all the extra happiness and light in the world and put it in this child, and this light shone out his big, saucer-like brown eyes.
As he grew older he continued to to be this most amazingly gentle, sweet boy. He also wanted to learn everything about the world around him all in one day. He was clearly very bright and inquisitive.
Eventually, we noticed differences in communication and other areas and sought out hearing tests, a speech assessment and a Paed. At this stage we were told he had a moderate speech delay. It wasn’t until a year later he was diagnosed with autism.
Touristo was diagnosed just after his third birthday. The Princess was only a few weeks old, and I remember having her in a baby sling during this appointment. The diagnostician delivered his diagnosis in a way that oozed sympathy, you know……the way you deliver really horrible news. Only, I didn’t think it was horrible. I had answers. Understanding what was going on for him allowed me to make adaptations so he could reach his greatest potential. Because of these answers I would also be able to make adaptations to my parenting that were more fair, helpful and respectful. I wasn’t a failure as a parent, I was just parenting the wrong way for him.
I initially sought refuge in parents’ forums where I was continually encouraged ‘to grieve for the life and child that I would never have’. I found this jarring. What the actual……? My son had not died, he was healthy and exactly as he was meant to be. He was still entirely that same person who nearly burst my heart open with joy the moment I met him. How could I ever, ever grieve someone so amazing? As for grieveing the life that I had planned out in my head …….as I said, the only thing I knew about him during pregnancy (which was when I fell in love with him) was that he was a boy who liked listening to Brian McKnight. Nothing else about him had been planned out beyond that, nor did anything else matter! You take life as it comes to you.
Back then I was a newbie to this world of severe autism and thought maybe I was the crazy one for feeling this way…….but I have now had a few years to mull over these thoughts and am now crystal clear. It is still something I could never do and here is the bullet point list why:
– why would I grieve someone so awesome. Grieving is for when something awful happens like a death….. nothing about Touristo is awful.
– his feelings! I imagined how I would feel growing up having a parent who was so devastated because of the way I am.
– the day he was diagnosed he was still the same awesome guy that I was so in love with the day he was born. I just had new information to help him.
– I am an aspie and know how it feels to be very different and not fit in, especially as a kid. I imagined what it would feel like having my mother grieving for the parenting experience she didn’t have. Kids pick up on that even if they have no words.
I think oftentimes the whole grieving thing is set up around the stage of diagnosis, and whether the diagnosis is presented as something terrible, neutral or good. Diagnosticians have amazing power to use this conversation to set parents up with a much more positive perspective on autism which is empowering for parents and can only lead to positive outcomes for the child.