He looks through the glass doors of the dairy section and there are so many crates full of bags of milk. What is so interesting about all these bags of milk? It’s what lies behind them that is catching his eye. The boxes and pallets of dairy products piled in the cold storage area behind the milk.
Johnny always sees things that others don’t see at first glance. He lives in the details of things or the moment. Life is a kaleidoscope and he lives in the shades and hues of colours. Nothing is ever simple and easily explained with what he does, what he wants, and why he wants it. Why do people in his life that love him always try to simplify what he does as “well all kids do that” ?
Do they say it because they are trying to make us feel better? Do they say it because they want to believe that there are parts of him that are typical? Do they say it because they just do not understand yet what is different and why? We know they mean well.
When we started our learning curve about Autism we would find ourselves saying “don’t all kids do that in some way?” Now that we have our typically developing little girl we see how big the differences are in glaring black and white. We see what we missed and what Johnny missed in glaring technicolour. We also see how hard it has been for Johnny to do things that just come so easily for his sister.
We live with this everyday and we have accepted it so maybe that is why it is so jarring for us when we hear “well all kids do that.” We understand that Johnny is not and never will be “typical”. It is definitely not easy to reconcile this inside of you as a parent and it doesn’t mean we have given up on him but rather we see that he looks at the world very differently and by understanding that we feel that we can better help him. We have learned to follow his lead and watch his eyes and see what has captured his attention. Johnny finds beauty and joy watching the sunbeams suddenly illuminate our kitchen cupboards or watching the rain drops splash down into a puddle. He teaches us everyday what the meaning is behind “stop and smell the roses.”
What he is doing and will be able to do more every day is ADAPT and APPEAR typical. This is very different from “well all kids do that.” Johnny has worked so hard over the last 2 years to get where he is so maybe if he APPEARS to be acting typical then its a good thing. People are happy and eager to work with him because of his happy smile, his big heart and attitude. We just find that when he is at school or at family gatherings that people see what they want to see and are not looking deeper to see when moments are very hard for him. He LOOKS to be fine until he starts collecting every cup on the table and stacking them or wanting to open every napkin on the table and cover his cup with them. We know he is compensating for all the loud conversation at the table and trying very hard to not dash out of the room filled with happy relatives because the crying of one of his cousins is too loud and could unravel him at any moment. Johnny is APEARING to be sociable with a big smile on his face. What everyone does not notice that without us prompting him he is not saying anything to anyone and is only going after articles on the table.
Spontaneous social moments do happen that put a smiles on our faces and hope to our hearts. His cousin from Europe who he has only met that day starts to play peek a boo with him from across the table and laugh with him when he thought it was funny. This back and forth interaction with strong flirtatatious eye contact went on for awhile making others want to join in on their fun. Later Johnny is walking through the living room and walks behind her son who is sitting and playing Nintendo. He leans over the boy’s shoulder with a mischeivous smile watching the video game and clearly wants to play too. I offer to get him his iPad so they can sit together and this makes him happy. Johnny sits on the sofa and the boy sits beside him to watch because he doesn’t have an iPad. Johnny tolerates this. He continues to do some of his favourite Apps with another little boy right beside him sometimes helping him. Johnny doesn’t shift his body to block the interactions but continues to play. Does he offer to let the boy have a turn? No, that would be too much. All kids find it hard to share right? This is true but for kids on the spectrum, turn taking and sharing is a foreign land with lots of potential potholes. Will I get the toy back? He is taking too long doing his turn. Why is he taking so long with my toy and his turn? Why would I even want to let him have a turn? Should I just push him away or ask him to move? These are the kind of thoughts that could be swirling in Johnny’s mind as the boy sit beside him and observes. All of these social interactions APPEAR to be typical but for Johnny, this has taken lots of hard work to achieve and to do with seemingly effortless grace.
What do I want for him? Just like Johnny looks at everything in his world and sees so much detail I want the folks in his life to follow his lead and look past the surface of how he APPEARS to be acting and look deeper. It is only then that “everyone” in his life can truly help him.