I’ve never been one who took much stock in anniversaries. Before we got married my husband and I didn’t even have that yearly celebration of marking the time like other couples do, we were too busy eating dim sum and taking motorbike trips. These adventures were quickly replaced by a wedding, a sedan and two children in quick succession. Our wedding anniversary is now merely a good excuse for a couple of cocktails and a date night but not much more.
As epic as our wedding day was it didn’t change our lives like the day, a year ago, when our gruff but brilliant Paediatrician unceremoniously kicked my mother, toddler and newborn out of her office, an act which made me silently chuckle. Mum, slightly miffed, left the room. She asked me bluntly ‘What stage are you at? Do you need the what is autism spill or shall we talk about next steps?’ Surprisingly time didn’t stop then. It had skidded off to a parallel universe the week before when our son’s developmental assessment put him 12-18 months behind. Meanwhile my husband was on route, stuck in traffic and only just emerging from the void of denial. Mentally I yelled at myself to be present, took a deep breath and replied ‘Next steps’.
In that moment I gained a couple of labels; ‘autism mum’, a special needs mum. Really, I was just a twenty something desperately trying to keep her shit together after having two babies in as many years. Thanks to a contraceptive failure in the first instance and a month of clucky insanity in the second, which my husband in all his brilliance stupidly went along with, I was sitting across from the doctor tortured by two small humans with sleep deprivation, my boobs sore from too much milk and my head exploding from too much information, wondering how the hell I was meant to remember all these ‘next steps’. It seemed to involve too many people, a rainforest worth of paperwork and thousands of dollars and that was just the diagnosis.
It wasn’t like the diagnosis was a surprise. Our two year old was freaking bashing his head into concrete to the point of grazes. It wasn’t a tantrum, it was our placid little boy screaming for help and unable to find his voice. He was beautifully quirky but I had long since suspected there was more to it. I had been desperate to be wrong.
The questions and uncertainty about our first born had plagued me since he was still in a bassinet. Most which I kept to myself, and rehashed over and over in my head, always convincing myself I was over reacting, an over anxious first time mother.
Why couldn’t I settle him?
Why didn’t he see the baby in the mirror?
Why was he so different to the other babies?
Why did he stop talking?
There are always excuses if you go looking for them. Silent reflux. Two introverted parents, the kid was doomed to be a loner from the start. Pulling apart complex electronics is normal at two right? His Dad was a genius, Artyom was always going to be a little strange (actually he is and by the way they are really annoying people to argue with). We had moved interstate after his first birthday, of course he had regressed. I was quiet. I just needed to talk to him more.
The list was endless. But they were akin to the excuses I make to myself not to exercise or why that one extra takeaway won’t matter. It’s really a total avoidance of the real issue at hand, which in this case is a middle of the spectrum case of autism. Strangely enough I no longer feel unsettled. Nor do I get trapped by the questions in my head.
So our kids don’t go to playgroup or daycare instead we live within the vector of early intervention. Not so Artyom can appear as the world expects him to but to give him the tools to express himself and utilize the all the potential trapped in his head. Our family life is dictated around ABA therapy, group therapy, speech and psych. Don’t pity him. He loves almost every minute of it. Our feisty but easy going one year old, Theodore, happily comes along for the ride soaking in the lessons taught to his brother, though that doesn’t ease the guilt I feel that he’s missing playgroup.
We are doing the work now. Desperately trying to unlock the Artyom’s obvious brilliance and racing to stay ahead of the frustration and anxiety that come with being unable to understand the world and communicate your needs. We are trying to beat the cloud of autism as a family, the four of us marching towards a shadow of an enemy.
Over the year the feelings of overwhelm has settled and we are have fallen into a groove and solid routine, much to Artyom’s delight. There’s excitement and relief every time he says a new word, pride when he nails a skill and the occasional pangs of grief when I see another three year old confidently riding a scooter or some such normal activity when we spend weeks upon weeks trying to teach him how to play a simple game. But we laugh a lot, use a healthy dose of sarcasm on the tough days, hold each other up when necessary and love unconditionally.
It’s our first autism anniversary and while I’m not quite ready to celebrate this one I am cautiously optimistic. We are at the entrance to the freeway and the traffic doesn’t look too bad. I’m thankful for the strength of our family unit, our marriage and for living in a country where there is access to therapies and a very useful Medicare Safety Net. Actually we might just have one cocktail, some dim sum and give the middle finger to the autism cloud.
Image credit: http://www.mnn.com