I don’t know why but today I keep thinking about how our journey began and how my knowledge of autism has changed over time.
I remember vividly picking up my little boy from his childminders, he would’ve been around 17 months old at the time . I was at the doorstep collecting him and he kept crawling off. The childminder was telling me how she couldn’t put her finger on something and was giving examples of some of his behaviours. She wanted a health visitor to go and observe him in her setting. I’d heard her throw around the ‘A word’ a few times so I asked….
“What are you trying to say? Do you think he is autistic?”
That was the first day I’d ever used that word about him.
It rolled off the tongue easily and I had no idea what it meant. Well not really. Back then, I imagined it meant my boy was geeky, that he would have a quirky way of lining everything up and that he would sail through school because obviously he would be super intelligent and have super mathematician skills etc. I imagined it would somehow make parenting easier because he was going to be uber clever.
I didn’t know then that by almost 5 years old, my boy would still be non-verbal, he wouldn’t be able to dress himself, he would be doubly incontinent and he would need to attend a specialist school as a mainstream school would be an horrendous experience for him. I had no clue that it would still be pot luck of he slept through the night and he would need medicine to allow his body to switch off and fall asleep. I had no grasp that he wouldn’t do all of the things that, as a parent I took for granted. For example, roll a ball back and forth to me, play dressing up, pretend shops, do a jigsaw and other such games that his peers were able to do. Autism didn’t mean that we couldn’t go to the park with friends or enjoy a picnic or take a leisurely walk out, did it? Doing exercises to help with sensory overload and to try and keep him grounded in the world were as alien to me as meeting ET.
I never knew that I wouldn’t be able to get a regular job, do regular things with regular people (at least not without constant eye rolls and judgment about my poor parenting).
On the flip side, I never knew that I would love my child so fiercely. That I would saviour every kiss and cuddle from him and that we would celebrate even the smallest of victories. I had no idea that I had such fight in me to get him access to all the services he needs and I didn’t know then that a boy 30 odd years my junior would be the person to make me a better, kinder and more compassionate person.
Back then, when those words rolled off my tongue I had absolutely no idea that if he was, and indeed is diagnosed autistic that it would impact every single decision we make. Just think about that for a minute. I’m fairly confident that some friends and family may think we add a cherry on top for special effect but we absolutely don’t. And we still have so much to learn.
Our autism is everything I never thought it would be, and more. It’s hard /it’s easy, it’s love /it’s hate. It’s unconditinal. Always.