Today when I picked Jillian up from the bus stop I overheard one of her friends excitedly talking about the pencil that she had received at school, and then she asked her mom if she could sharpen it. I then watched as another little boy headed inside asking for his iPad. I watched so closely because they are both Mark’s age.
Over the holiday break we had friends over who have a little girl that is five. She came to play with Jillian even though she is in kindergarten, just like Mark. She brought Jillian a lotion and an ornament she made for her. I looked at the label and noticed the small scribbled handwritten “lavender” placed on a crooked label. They quickly retreated to Jillian’s room for hours putting together a new Lego set. I watched and listened intently as she talked to Jillian, always imagining.
You’d think that by having an older, neurotypical child I wouldn’t be so captivated by what five year olds are into, but I am. I want to understand and feel the weight of what we’re missing. I want to face the full magnitude of the developmental delay. I want to look into the mouth of the monster, and so I watch, and sometimes I ask my friends what their kids are into or what they’re doing. I like to torture myself, and I’m not totally sure why.
But this afternoon, in a different torturous way, I decided to go to that forbidden place that special needs parent sometimes venture. We know it will be painful when we reenter reality but we go anyway. We go to feel that relief, be it fake, that we feel when we imagine our child without the grip of autism.
I started to think about what it would be like to be able to pick Mark up from the same bus stop with his sister. I imagined him racing Jillian to the car to see who could get to me the fastest. Would they get into the car fighting? Would they be competing for my attention? Would he be asking to play games on an iPad? Would he want me to sharpen a new pencil? What toys would he want to talk to me about? Would it be Pokemon? Would he want to make slime? When we got home, would I fuss at him about leaving his shoes and backpack in the entry way?
He would surely use the bathroom by himself. He would get a snack from the pantry, even if I had to open a package. He would find the remote and turn the TV on without help.
The forbidden thoughts give me a small jolt of excitement about the possibility that things could be different and then it’s followed by the remembrance of our sobering reality and truth that our circumstances remain.
As I drove Jillian home, and she was quiet in the backseat, I continued my autismless fantasy. I imagined Mark eventually retreating to his room with an iPad. And I imagined myself following him, and then cuddling in his bed, attempting to tickle out information about his day. I would soak him up in all of his expressive goodness. But then I stopped, and I thought, but would I? Would I do what I think I would? Would I savor every word he spoke if he was never touched by autism? If we didn’t have to fight for every syllable and utterance? Would it even occur to me to look at the miracle that is normal cognitive function?
And so I began to think about how other families without autism look at their children. Do they celebrate every word their child speaks? Do they love them with this fierce, protective love like I do? Does parenting a child with autism make us love deeper and harder? Does it make us savor the things that most wouldn’t give a second thought?
The one thing I do know is that when I really look at Mark, it makes me go to this place where my eyes fill with tears and my heart feels like it’s going to burst. I watch him as he peacefully, and silently, flips the pages of his new Lego Architect book. I watch him as he carefully places his new traffic signs in precarious positions. With the same intense curiosity that I feel when I watch other children without autism, I observe and pay attention to the details of him. I watch his hands carefully hover over each page as he anxiously anticipates flipping the next. I watch as he rolls his tongue from one side of his mouth to the other, deep in thought and focused on the objects he is manipulating. He has a purposeful gracefulness that mixes with nervous energy and it just captivates me.
So as much as I hate autism, and consider it a nightmare realized, perhaps I should be thankful for the gift of loving someone with such deep, raw adoration, and for being able to see children with an intense curiosity that makes me love mine even more.