A bad day with darling boy, something happend this afternoon and he became utterly uncontrollable. As his parents we have been under immense pressure this past fortnight, living at the whims of other people, money, work, weather, whatever it’s not important. What is important is how we dealt with it. That is to say not very well at all. But it’s created a need to try and process it so I can hopefully get some sleep before work in the morning.
When you’re handed a diagnosis of a young child, sometimes a baby in our case a toddler it can be overwhelming, daunting, frightening and a host other negative emotions but really if you’re taking about an autism diagnosis not much changes to begin with.
Sure a lot of things make sense, you begin to understand why, you have a reason or an excuse for so much, but other than a series of meetings if your child is under 2 there’s not an earth shattering change to your life. They still need to be fed, and have their nappy changed, you play and teach and put them to bed and hope to all things they’ll actually sleep much like any other kid their age.
The insidious nature of darling boys variation of autism means it takes a while before it dawns on you, the enormity of life as you know it. When they’re 3 and off to preschool and lining up the crayons while their teacher aide tries in vain to get acknowledgement. When they’re 4 and the goal for the year is to touch a piece of fruit at snack time. When they’re 5 and supposed to start school but you’re waiting for funding applications. When they’re 6 and still pointing to everything they want because there’s no language yet, When they’re 7 and you’re wondering if they’ll ever be toilet trained and what are you going to do when they no longer fit the cheap nappies. When they’re 8 and they’ve never been to a birthday party and have no idea what Christmas is. When they’re 9 and still watching Bob the builder and Thomas the tank engine. When they’re 10 and you can’t remember the last time you had a night to yourself because they no longer sleep. when they’re 11 and refuse to wear clothes around the house. Gradually year after year it’s reenforced, but still the enormity of life to come doesn’t quite sink in.
As he gets older the gap between him and his peers grows and we begin to really feel the massive weight that is raising a boy like Boo. Or nights like tonight when the last thing we had time and energy to deal with was him, being…him. We needed a nice quiet calm happy self involved child that was perfectly content to watch little red tractor on 4 different screens at once so we could prepare for a house inspection in the morning. What we got was a screaming, out of control, hyper-manic, over-demanding, rage monster that smashed through the bathroom wall we had fixed only hours before. Because the dog touched him.
We needed someone to, take him for a few hours or somewhere to send him just to get the jobs done, if only he could have gone to a friends house or hung out with an Uncle or Aunt or Grandparent even. Kids his age are going to the movies or the swimming pool by themselves. That gap is right there, it’s in our face screaming. Your kid isn’t like other kids. Seeing, watching, hearing. Your kid is different
There’s no time for bitterness, and no point. Sadness yes, but envy, jealousy? No. I don’t know what shape life is forming into, I can’t quite make it out I’m too busy sculpting it.I can guess how it will look, but life has a habit of changing the game before you even see it coming. Sometimes good, sometimes bad, but it’s never what you plan for it to be.
But we’ll ride it together, darling boy and us.