Some of you see Soren every couple months, some have met him once, but many of you have never actually met him. Thus I'm sure it's hard for you to imagine exactly what is "wrong" with Soren. Soren is a very handsome boy and does not look syndromic--an actual word to describe people who have visible syndromes. For example, we recognize people with Down's syndrome because they look syndromic. Thus, when people see Soren, they think he's a typical boy riding in a really heavy duty stroller.
But people ask me all the time, what can he do? Well, since his seizures have stopped, he can hold up his head. Up until about he was about 2 his head would flop back and forth like a newborn's. He is getting better trunk strength. This means that I can sit him on my lap and he will sit up, but I need to have my hands on his shoulders or his hips or he will fall over. I can't just plop him on the floor to play. Well, I could, but he'd fall over and smack his head. This would lead to crying, which is never good. When I put Soren down to play, it is generally in his vision box, laying flat on his back.
Soren can bring his hands to mid-line, meaning he can bring both hands together at the middle of his body. He can put his hands in his mouth. When he wants, he can laugh. But this is all about what Soren thinks is funny and can never be predicted. He will begin with giggles to himself. We will then try to tickle him and often he will guffaw happily. Wanting more, we'll tickle over and over. But soon, his personal joke is over and he is spent. No more laughing no matter how much we may want it.
Sometimes it's easier to tell people what he can't do. He can't roll over from his back to his belly or the other way around. I know this is taboo, but I leave Soren on the changing table and walk away knowing full well that he isn't going to roll off the table. I was at a birthday pool party and put Soren on a lounge chair and went to get some food. When I came back, some other mothers were hovering around him horrified at what I'd done. I shrugged it off. If he'd actually rolled off the lounge chair, I would have danced a frickin' jig.
If put on his belly, he won't use his arms to bring his head up. He won't draw his legs under his body. If I put him on his belly and position his arms and legs under him, Soren will wiggle until his is flat on his belly. Then he usually falls asleep. He doesn't hold on to toys and doesn't have any favorite toys to play with. He doesn't feed himself finger foods, he can't drink from a cup. When I go to the grocery store, I can't put him in the front basket sitting up, so I put down a blanket and place him in on his back. When he wakes up in the morning, he doesn't cry. He's either quiet or babbles to himself until we come to get him. He hates bearing weight on his legs. If I try to hold him up, he'll go all jelly-legs. So we have "stander" to put him into a standing position to work his muscles. He doesn't crawl, walk, or run.
He used to give kisses, which was the best. He would give big open-mouth fish kisses when we put a cheek up to him. But he doesn't do that any more. And while I know that he knows me, his dad, and his sister, if I were to say Soren's name, he wouldn't look at me. He doesn't dance to music. He doesn't smile responsively at us. He doesn't talk. Still, he knows what he wants. At the end of the day, he likes to unwind. We put him in bed and he babbles to himself about his day. Last night, his dad came home after Soren was put to bed. Soren's talking got louder and louder until Aaron got him up. Soren calmed down once he was in Aaron's arms. And then Soren chatted some more to Aaron until he was finally ready to settle down to sleep.
So this is what I mean when I say that Soren is behind developmentally. He is on his own schedule. We hope that someday he'll talk, walk, and run. But, honestly, we have no idea if he will. We keep waiting for the day a connection is made--when the switch in his head is flipped to on and everything changes. Still, it may not. That's a fact we have to face every day. And we remind ourselves that miracles can happen and we just have to be patient and happy for any little step forward that we get.