Against Time

My son losing his front tooth has been a more significant milestone for me than his turning 6 this month. I can see the gap in his teeth. It is a visual reminder of his years with us, of my years as his mother.

As he sits at the laptop, engrossed in a computer game, his little sister finds ways to include herself in his activity. She unplugs the cord, nothing happens, the lap top just reverts to its battery. She tries in vain to reach for the keys, but he is perched on the couch she can't climb yet. She glances at me and gives me a goofy smile. She picks an "imaginary" piece of fluff from the carpet and walks up to me with an expression of disgust that she must have picked up from me every time I catch her with something gross. She hands me the "imaginary fluff" and says "ishkh" with the same disgusted look and a twinkle in her eyes.

At 14 months she understands most of my instructions and participates in all the games I play with her and laughs at all the funny faces I pull and silly sounds I make. She has a few words and babbles complete with tone, prosody, facial expressions and non-verbal gestures constantly. When I am talking to her or playing a game with her she takes the responsibility to repair any broken patterns, to continue the exchange and repeats it from memory when we are in a similar pattern again later in the day or week. She waves at random strangers and says hi, she follows me around the house with her shoes asking to go bye bye, pointing  to the front door, often barking (because the neighbours have a dog that barks every time we step outside). She generalizes pictures from books to real life and to other similar pictures in other books. She has preferences, she makes choices, she engages us constantly. She has taken charge of her development and we are facilitators. It all happened naturally without any interventions. She was born doing it. She is a source of near constant joy.

So when I look at my son and his missing tooth I cannot help but grieve all the experiences he has missed out on in his 6 years. I see all the little joys of normal childhood that he will  never experience.

No one but the parent of the child with special needs knows this loss. As with any loss, we know to be patient, to advocate, to keep going with whatever courage or determination we have been blessed with, to be positive and proud. We are grateful for people's encouragement, kind words, pats on the back and prayers. None of it however takes away from the ever increasing isolation of my son from his "neurotypical peers". It does not decrease his challenge and struggle. And as his parents it does not take away from the heartbreak of being witnesses to this inevitability. Time does not heal this process. Time only serves as a reminder of it.

We are part of a large community of such parents, yet we are all alone. We have families and friends, but they are like disconnected tourists. We have pathological emotional connections with professionals we pay to work with our son, because they are the only ones who truly understand and therefore value him.

Time keeps slipping through my clenched fists and now my son is 6 and what has passed can never come back. Time is trickier in his case because no matter how far he tries to go, he is never far enough. Time will always beat him.