I’m not crying while I’m waiting in line at JB Hi-Fi to buy the Five Seconds of Summer CD for Tyson because we’re surrounded by dozens of customers and retailers. But things would probably be different if we were here alone.
It’s been a tough ride with Tys. He’s gone through the long arduous autism assessment and had some developmental delays diagnosed and from about eighteen months has hardly slept through the night. He’s taken a long time to adapt socially to many situations including play dates ad kindergarten and has suffered hours, sometimes days, of irrational defiance and tears and frustration over the simplest things; sometimes over no discernible thing at all.
We’ve run a two-year long gauntlet of term-throwing specialists of varying levels of skill and effectiveness and while it’s led to some good outcomes here and there, it’s also added another layer to the worry pile; his young mind is developing and defining itself as we march in and out of new offices and clinics for more prodding and probing and interference.
Over the past two months we’ve adjusted his diet to heal an imbalance in his gut flora based on medical tests that point to ‘leaky gut syndrome’. There’s a good chance this will improve his happiness and correct his ‘distractibility’ and give him the chance to catch up on his areas of delay. But it’s hard long-term work. I’m sitting by him every meal time, spoon feeding, because he resists the foods often. I’m shopping at several different places, learning to cook everything from scratch, saying no to him so often it accumulates towards heart-break, and wondering if all the effort will make any difference anyway (are we making a big deal of nothing) and worrying, worrying, worrying.
There’s no way to avoid parental guilt in matters like this. After we returned home from the Psychologist’s office this week RM was thinking back on any antibiotics she may have taken while she was pregnant or breastfeeding.
Don’t be ridiculous, I told her, if we’re going to look for blame anywhere we should look at the person who’s been caring for him most often over the years. Maybe if I’d been better with his diet or spent more focused time with him.
Don’t be ridiculous, she told me.
At times I’ve lost my cool and reacted angrily and fallen into my own hours of despair, only to pick myself up, hug him, and get back into gear: cooking and researching diet, health and psychology, coaching him through his meltdowns, coaching myself to stay calm and consistent at the same time, consulting with his kinder teachers and speech therapists, taking to his bed in the middle of his sleep-disturbed nights.
Deep inside me, when the day’s going alright, I get this feeling that it’s going to be okay. Tyson’s just taking to the world a little differently than his brothers and the wheels will keep on turning until one day we’ll see him sitting in a classroom with his hand up, with a best friend or two in the playground and coming home with a reader diary covered in double ticks and smiley-face stickers.
But we can’t afford ourselves the luxury of that feeling. Tyson is just too important and we’re so desperate for him to be happy.
Lately we’ve been seeing more of his cheeky, playful nature and there have been more moments of controlled exuberance, and curious questions that you’d expect from a normal inquisitive five year old boy. Just yesterday morning he crawled into bed with RM and said, ‘I love you Mum’ and hugged her quietly for longer than we thought was possible.
Today, Tyson and I have walked through Northland Shopping Centre for an hour, searching through shops for products that any kid would find boring, and the whole time he’s been smiling, running behind me, running ahead, or just walking along holding my hand. Right now he’s standing by a stack of CD’s in JB Hi-Fi and I’m awe-struck as he takes a deep breath to manage his idleness – in and out, bored, but just chillin’.
I only become aware of the possibility of crying in JB Hi-Fi when he looks over and smiles to find me watching him.
I smile back and hold up his new CD and shuffle my feet a bit and to manage the emotional uproar I tell myself this is just a one off, an aberration, or the accidental exposure to some Ritalin mist and I’ve almost convinced myself that I can present dry eyes to the check-out chick until Tyson waves and wanders over to lean against my thigh, to offer me this brief reward well worth the five years of effort – just standing together. My arm over his shoulder.