The Monster

Last Sunday at church Luke was sitting on the floor in front of me playing with the various bulletins that he had collected, and he noticed a small purple stain on the carpet and began pawing at it as if he was trying to pick it up, and of course it didn’t budge. Persistent, he continued scratching at it for a little bit longer than I would have liked. Ike noticed and laughed saying it looked like a cat scratching in a litter box, but I wasn’t laughing. We are in the danger zone; that place where children with autism occupy sometimes seemingly normally and then boom, they’re gone. Luke is 16 months old and I know too many families who have watched their children unravel at this age. This was when Mark was spinning in circles, not talking, not engaging, obsessed with corners and doors. We were about to get Mark’s diagnosis at this age. I will never forget that grief stricken, sick feeling knowing what was coming. So as I watched Luke incessantly paw at the floor, I just prayed that this would not be a stim. The next few days I noticed that he was shaking his head back and forth. I know that head shake all too well. Toward the end of the week it became obvious that he had a cold. “He’s just shaking his head because of the fluid he feels”, I tell myself.

And then I wonder. Will this be one of the many little lies I have to explain away the behaviors that begin to emerge? Many times I have asked my mom “he’s OK, right?” And each time she assures me that Luke is different than Mark. He’s engaged, and responding to us. I breathe a little, but the worry still sits across my forehead. It was my mom who called it. She knew early on, and was very worried. I knew when she knew, but I wasn’t ready to face it. She was concerned when Mark would stare at ceiling fans for hours. He slept a lot. He didn’t look at our faces. All the things. She saw it all, and would gently share her concerns with me. And to push back I would tell myself and her these little one liners. I would say “boys develop slower than girls”, “I can’t compare him to Jillian” and “all kids are different”. The same things that the pediatrician kept telling me. So is that what I’m doing now, explaining away the warning signs?

When we decided that we would try for another baby our genetic counselor told us that the chances of having another child with a SCN2A mutation were 1%. Feeling confident with those odds, and thinking that lightening wouldn’t strike twice, we decided to grow our family. And six months later when we found out that we were pregnant, I felt sick, and not because of first trimester nausea. What if this baby had autism too? I know families with multiple children with autism. They do it. I can do it too. I have all of the resources. I know how to do this. We would get genetic testing right away. We would start speech, OT and PT when this baby was super tiny. I would take them to the chiropractor. No gluten, no dairy, no soy. I would get the insurance squared away sooner. I would do it better this time. We would catch it so early. The monster that I battle wouldn’t get one over on me. No, not this time. This time I was in control.

But then I would think, no I can’t. I can’t do this again. I can’t watch my baby miss milestone, after milestone, and see his peers bypass him. I can’t tell him to wave “bye bye” and watch as he blankly stares ahead motionless. Or tell him I love him, and not hear it back. I couldn’t have another person in my house that feels like a stranger. I can’t bear to deal with more detective work; trying to determine how he feels, or what he really wants during a meltdown. This one had to say mama. This one had to give hugs. My heart couldn’t take it again. So I prayed. And I worried. And I watched.

I did take him to the chiropractor, as well as Mark’s OT. We did tummy time like it was our job. I was all over the hearing loss. We did the ear tube surgery. I was on it and terrified. I downloaded an app called Kinedu that gives ideas for play and allows me to take developmental assessments on all areas of functioning to assess Luke’s cognitive, linguistic, social, physical and fine motor development. I would hide a hidden object to see if he searched for it. Check! I would make a motion with my hands and get him to imitate it. Check! Each month he was where he was supposed to be. And a little after a year, speech began to emerge, and it’s still coming along. Every time he holds up a banana to me and proudly says “nana!”, I can feel my shoulders relax a little, but then I see him hold his arms behind his back for a second too long, or make a facial grimace, and I wonder if I should video tape it.

I suppose I’m experiencing the reverberations of the trauma that we felt, and continue to feel as we walk through this journey with Mark. Those feelings of grief have eased over time, but they are still there and they appear when I least expect them to, and they do rob me of enjoying the wonderment of this phase with Luke.  I do celebrate each milestone with vigor, but I would be lying if I said that I didn’t also feel the tremendous relief mixed with sadness when I see him do things that Mark still struggles to do.

One day, I pray, Luke will bypass Mark’s stage of development. And maybe I will stop fearing the monster that took my first little boy, and let go of the worry that it will come back and snatch this one too.

Leave a Comment

Your email address will not be published. Required fields are marked *

Scroll to Top