My Words for Other Parents on the First Anniversary of My Son's Autism Diagnosis
To the parents in the waiting room,
I’ve seen you.
I recognize you.
I was you a year ago. With that worried, shell-shocked expression on my face. Wondering what the future held for my child. I can see your fears like they are a shadow next to you. They whisper into your ear ramblings about mainstream school, lifelong care, what would happen once you were gone.
As I sit watching you I desperately want to tell you, it will be OK. You will work it out. It’s our first anniversary of our son’s autism diagnosis, and things look so different now. Personally, I’ve never been one who took much stock in anniversaries, but on this one I will have a cocktail. It’s worth celebrating.
Our world was rocked too a year ago, when our gruff but brilliant pediatrician unceremoniously kicked my mother, toddler and newborn out of her office. She asked me bluntly, “What stage are you at? Do you need the ‘What is autism’ spiel 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 to 18 months behind. Meanwhile my husband was en route, stuck in traffic and only just emerging from the void of denial.
Are you ready for the next steps? You don’t have to be yet. Nothing will change if you give yourself time to absorb it. In fact, you may make better decisions if you do. Give yourself time to remember your child is still there. Nothing has really changed. They were born this way, a beautiful, funny ball of energy.
We gain a couple of labels in that appointment: a special needs parent, the parent of a child with autism. Don’t worry, none of us really know what we are doing yet. I was just a 20-something desperately trying to keep it together after having two babies in as many years. I sat across from the doctor at the mercy of 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’s worth of paperwork and thousands of dollars — and that was just the diagnosis. But we got through it and so will you.
It wasn’t like the diagnosis was a surprise. I very much doubt it will surprise you either. Neither of us ended up in this office without having some serious questions to ask. In our case, our 2-year-old was 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. I’m sure our stories are similar.
I wonder how long you have known? The questions and uncertainty about our firstborn had plagued me since he was still in a bassinet. I kept this to myself and rehashed over and over in my head, always convincing myself I was overreacting, an over-anxious first-time mother. I wonder if you are plagued with the same self-doubt? Or are you blessed with more confidence than I was? I hope so.
There can always be excuses if you go looking for them. I found so many. Silent reflux. Two introverted parents. Pulling apart complex electronics is normal at 2 right? His dad was a genius. I was quiet. I just needed to talk to him more. But sooner or later we had to stop making the excuses, didn’t we? I promise you will accept it, and you can begin to see the beauty of looking at the world through your child’s eyes. It is so different. It is so fabulous.
I know your head may be spinning and the nights can be long. But those feelings settle. Yes, there are important decisions to make. Applied behavior analysis (ABA) or floor time? Both? Those words may not mean anything to you right now, but they will. Arm yourself with as much information as you can find, then trust your instincts and you will make the right decisions.
Living within the vacuum of early intervention can be all-consuming. One of the most poignant lessons I have learned is all this is not so my son Artyom can appear as the world expects him to, but to give him the tools to express himself and utilize all the potential within him. Our routine of ABA therapy, group therapy, speech and psych works for Artyom. You may find therapy is really great fun. Our youngest, Theodore, comes along for the ride, soaking in the lessons taught to his brother.
You can find yourself in a race to stay ahead of the frustration and anxiety that come with being unable to understand the world and communicate your needs. Hold onto your loved ones, face the challenges together. It can be easy for it to tear you apart, but keep talking and understand you may be at different points in the journey, but remember it’s a similar journey.
Over the year the feelings of overwhelm have settled, and we 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 sadness when I see another 3-year-old confidently riding a scooter or some other activity when Artyom spends weeks learning a 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 anniversary, and while I’m not quite ready to celebrate this one, I am cautiously optimistic. Please take this year one day at a time and think about it when it’s over. You might find things look radically different. We are at the entrance to the freeway and the traffic doesn’t look too bad; it was bumper to bumper this time last year.
You will find your feet again, and that precious child playing on the floor will be OK, because they have you.
The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.