Intellect

William is smart!

Kernicterus impacts the part of the brain called the Basal Ganglia which mostly impacts movement. We have always been told that his intellect is likely intact. His learning is delayed because he relies solely on memory but he has the ability to learn and he knows what’s up. So we approach our care for William with the idea that he understands everything – challenge accepted!

We take our time to explain and talk to him through routines and daily activities. I talk to him about the same things I talk to my girls about. I encourage understanding of feelings, likes and dislikes, patience and kindness, inclusivity and what’s going on in the world.

One of the most brutal parts of William’s diagnosis is that he is essentially trapped in his body. I can see when he’s trying to share something, I can see when he’s frustrated and can’t tell us why. I can see when he’s sad and I can see every other indicator of how he’s feeling.

I watch him meet new people and I can tell that he likes everyone. He’s my little golden retriever, social butterfly and chatty Cathy all wrapped up into a body that works against him.

It’s been a long road to understanding William’s abilities but one thing is certain – he absolutely, without a doubt knows exactly what’s going on.

He requires consistency so he can anticipate what’s coming and prepare for it just like any other kid. He thrives on social interaction and he loves conversation.

He has an amazing ability to build different relationships with the different people in his life and this takes emotional intelligence – this might just be William’s superpower.

His love for his daddy makes my heart swell. I swear he knows the sound of Bear’s truck coming home from work. He has a very special relationship with his dad and I think they keep each other grounded.

I watch him give his caregivers a run for their money with a cute little smirk on his face. I know when his meltdown is to get out of doing something he doesn’t feel like doing. And everyone who works with William quickly realizes that he’s a little boy with a whole lot going on. He’s funny, interested, eager to try new things and shows them daily how important they are in his world. He greets everyone slightly differently in the morning. He has established what he likes to do with each caregiver and they have all found their unique relationship with him – each unique and lovely in its own way and all led by Sir William.

Mimi Pie holds William accountable along with the rest of us. She’s the oldest and has a deep belief that William can do anything. She spends time figuring out his eye gaze with him and is our constant reminder not to treat him younger than he is – “mom, can you stop putting William in plaid pj’s to go out! He’s 11!” She’ often met with my eye rolls but deep down I know she’s right. I mean what was I thinking? So we have upgraded to cute sweat suits and I think William appreciated the shift.

As for the Beast, the middle child, she’s all about the fun. She’s the one he has wrapped around his little finger. She’s the one who will sneak him a taste of birthday cake, be the first to open his gifts for him at Christmas and will tickle and torment him till he can barely breathe because he’s laughing so hard. He knows exactly how to get her attention and she’s always game.

Discovering William’s strengths is a gift. He’s taught us that we can all learn new languages, we can all do better to read how people are feeling without speaking, we can all embrace differences and celebrate the beauty that comes from them and we all have the ability to make an impact on someone’s life.