This last month has been hell. Seriously, nothing short of hell. And it has nothing to do with the holidays.
However, like the true TV writer that I am, I’m going to have to leave you guessing until next month at least, as to why… I need to keep myself nice, get my ducks in a row and be 100% accountable. Either that, or just give in to the impulse and unleash the legal hounds of hell. I’m 50/50 at the moment.
Suffice to say, this un-nameable issue has really got me thinking about parenting in general, and special needs parenting in particular.
As far as I can gather, the issue we are dealing with right now, is due to people having no understanding of what it is to be a parent, and no interest in how having a child with special needs influences the way you parent.
Over the last month, I have observed people who carry none of our load, who walk none of the clinic and hospital corridors we walk, who do none of the 3am reading we do, who have not and can not read the signs of approaching shutdown day in and day out. I have seen these people assume an enormous level of knowledge and understanding about our lives. I have watched these people judge the decisions I make for him, as though I am making an ill-informed choice, as though I am making choices to try to irritate them.
Not for the first time in Billy’s life, I’ve been forced to face the fact that people who are not me, seriously think they know more about my kid than me.
There is one person on this planet who knows more about Billy than his Dad and I, and that is Billy. Beyond that, it’s all speculation and assumption.
I am reminded of the time on Welcome Back Carter, when one of the characters (I’m pretty sure it wasn’t John Travolta, beyond that, I’ve got nothing) said, ‘When you assume, you make an ‘ass’ out of ‘u’ and ‘me’.
So, set aside the normal parental high ground for a second. We all know the Mama and Dada lion feeling. We all know the chemical connection that makes us wake up a split second before our distressed child. We all know the bizarre force that makes us able to miss a couple of days sleep, when it’s not us that’s actually sick and unable to sleep.
Think of the things that define the special needs parenting experience from the garden variety style.
For us, those would be the sucker punches to the heart when your child finally hits a milestone that their same age peers got half a life ago. The pride in the ‘little things’ like holding a fork or a pencil semi-correctly, predicting the need for the toilet before there’s physical evidence, trying a new food or a new brand of a favoured food. The gut wrenching moments watching your child physically and mentally assaulted by everyday things like someone coughing, a baby crying or a rooster crowing. The struggle to accept that it is his choice to sit alone, far away from the crowd when all the other kids are inspired by each other’s energy.
Then there’s the hard stuff.
The endless doctor’s appointments. The therapy sessions. The assessments and their evil twins – the reports. The age equivalencies and percentiles. The strangers in your home and the stinky waiting rooms. The situation surfing, anticipating every possible sensory hazard. The moments where you realise you don’t know what to do.
Now, I know it’s not all doom and gloom. There are the moments of pure genius that come from the moments of ‘how in hell’s name will I get this catatonic seven year old out of the ball pit?’ There are the unbelievably wonderful co-passengers on the parental short bus. There are the truly inspirational parents of children without additional needs who just ‘get it’.
I truly believe this experience has made me a better human being, not just a better parent. I’m not sure it’s made me a better wife, though I’m thankful that Billy’s dad is a pretty wonderful partner in crime.
I’m not saying I’ve got nothing to learn. Not by any stretch of the imagination. But I am saying that what I have learned has value.
More than that, what we have learned, we had no choice about learning. We had to learn it. What we cope with, we have no choice about. We have to cope with it. What we say, we mean. We might not always be right, but we are working from a place of honesty, of compassion, of desperate hope.
Because we have no choice in the matter. We are parents, and we have children who need additional help to understand the world (and for the world to understand them). There was no moment when we were given the option to say ‘Nah, I don’t accept this. I’m off to Christmas in St Barts.’ We are parents, and we are proud to be trusted with the title.
Maybe, what I need to solve this situation, is a parent. I want my mother. Or a lawyer. Either one.
Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.