Neverland

Early in the morning, my son had a seizure. As his body tensed and contorted, his lungs expelled air through his vocal chords. The sound it made traveled between the open door of our rooms and woke me up.

I pulled off my covers and made my way into his room. He had sat up, but he was already making his way back on to his pillow. Standing at the head of his bed, I reached my hand through the slats and stroked the top of his head. I whispered to him that he was going to be okay and that he should go back to sleep. He eventually did, so I returned to bed.

I checked the clock. There might have been enough time for me to fall back to sleep, but it was also close to the time that I needed to wake up. While I pondered what to do, I stared at the screen of our monitor. My son was asleep, with a blanket draped over him and his two fingers that he still sucks in his mouth.

My restless, exhausted brain started to drift. Someday, I thought, he’s going to grow up. Instead of the sound of a child, I will hear the deeper sound of a young man echoing through the hall. I shuddered at the eventuality and gave up on the idea of going back to sleep.

I started to think about what else was going to change but stopped myself. I see the boy on the monitor and can’t think of him being anything else. If I knew where Neverland was, I would take him there so that he would never have to grow up.

In Neverland, he could stay the boy who sleeps in our bed when he is sad or afraid. The boy who sits on my lap when he needs to be held. The boy who looks at the world with wonder and compassion. The boy who doesn’t feel the pressure of the adult world. The boy we can shield from how ugly that world can be.

I want to keep him at this age because it’s only going to get harder for him. He’s going to start questioning his value and his worth. His gentle soul and open, hopeful, dreaming nature will be tested, as will his belief in magic and possibility. I don’t want him to ever doubt that he can fly because the moment he does, he will cease to be able to do it.

I know that instead of wishing for him to not grow up, my responsibility is in preparing him for the world. Instead of trying to keep him young forever, my job is to help him grow in a way that encourages the magic inside him. Instead of losing it, it will be what helps him believe that he will always be able to fly. But I thought we would have more time before the real world penetrated our existence. Maybe I thought it would never happen.

When Peter invites Wendy to forget everything and join him to live in Neverland and to never grow up, Wendy answers “Never is an awfully long time.”

I stared at the monitor and thought that “never” was not nearly long enough.

Being Seen and Unseen

My son is becoming more aware of how he feels. He’s becoming more aware of how other people see him. He’s making that connection and noticing that he’s different from other kids.

A few weeks ago, he met with his neuropsychologist and she asked him about school. He told her that he wanted the kids to look at him. He wanted to be seen. My heart broke for him. This is the age when kids start to develop friendships that go beyond an activity or beyond school. And he felt invisible.

It’s been hard for him to make those connections. In part, it’s because second grade has been tough on him mentally and physically. There have been days where he has been too tired to make it to school or stay for the full day. It’s hard to build friendships when you aren’t there. It’s harder to insert yourself into relationships that have already been established.

But there are emotional challenges that make it hard, too. He does feel different from his classmates and he doesn’t quite know how to interact with them. He doesn’t always see the line between funny and inappropriate. Even if he did, he has a hard time regulating those actions.

He is also socially behind the other kids because he was so sick and spent a lot of his time with us or in the hospital. He wasn’t going on play dates. He didn’t go to a lot of birthday parties. He didn’t have those opportunities to learn how to interact with his peers. It’s like trying to compete in a race when all the other participants had a head start. None of them are going to slow down to let you catch up, and they’re too far ahead for you to even know where the course is.

The result is that he doesn’t feel like he has a place there, or that anyone cares that he is there. School must be a very lonely place for him, but we keep pushing him to go, thinking it will get better.

Now, we’re seeing those feelings come in to play outside of school now, too. The other day, we were at the pool with friends and another group came in that included kids from my son’s class. My son got quiet and covered himself with his towel. He whispered that he only wanted to be seen at school.

At first, I thought it was because there was a history with one of the kids from that group. But I also wondered if my son was trying to separate school from the outside world. It was as if he didn’t want the feelings from school to bleed into his safe, private world at home.

I want my son to have friends, and to feel special and important. I don’t want him to feel like an outcast. Sometimes, that desire for him to fit in causes me to overreact when he is trying to be funny but crosses a line. Instead of gently guiding him to a different behavior, I say things in a way that I worry make him feel shame. Not intentionally, and not with any words that are meant to convey that message. But my frustration with the world comes out sounding like I’m frustrated with him.

It’s one thing to have the kids at school reacting the way they do. It’s another to have his parents response the same way. My son is walking around and having everyone tell him what he is doing is wrong. We aren’t seeing him or, if we are, we’re telling him it’s wrong. I’d want to run and hide, too.

I can’t control the rest of the world or how it responds to him. I can teach him the best I can how to live in it. To get him the support and services that he needs. To do what I can to structure his life the best way we know how with where he is today, knowing that will change. To help him develop a strong sense of self, but to be aware and present enough to know when that fails him. Because trying to force everything and not being aware of where he is will do more damage than the world can do to him.

But I can be more aware of how I am responding to my son and the situation. I can control my own actions and respond with loving kindness to where my son is at any moment. The last thing I want to do is to take away the one safe place that he has. I want his home to be a place where he is seen, truly seen, for who he is.

And I want him to know that who he is is amazing.

An Uphill Battle

A few weeks ago, my son’s science teacher e-mailed a video to the parents of his class. In the video, the students were blowing through straws to move a paper ball around the table to show the power of air. The camera panned across the room showing groups of kids performing their experiment.

I watched the video, eager to see my son. When his table finally came in to view, I could see his classmates doing the experiment. But my son was off his chair, standing and facing the wrong direction. The camera caught his aide helping him turn around and back into his seat before it moved on to the next table. I didn’t see it, but I am sure he said he was sorry to his aide and then tried again. Because that’s what he always does.

My son is always surrounded by people who are there to help him. Whether it’s because of ADHD or side effects of his medication, he struggles to regulate his attention and emotions. The excitement of his crowded classroom is too much. Being left alone is too much. Trying to sequence events or remember the steps to a math problem is too much. Everything we ask him to do is a slippery slope down a path where someone has to be there to catch him.

The worst part is that he seems to be more aware of it as he gets older. The look on his face when his aide guided him back into his chair was one of realization. He knew that he wasn’t doing what he should be doing. We see that look a lot…like he’s disappointing the world around him as much as he’s disappointing himself. He walks around apologizing all the time, and it breaks my heart.

I can’t imagine what that is like for him. Always being watched. Constantly being told that whatever you’re doing is something you shouldn’t be doing. And feeling like it’s out of your control.

This isn’t one of those posts where I have an answer. We’re getting help for him and as a family to try to figure it out. We’re surrounding ourselves with people who will help him succeed. We are trying to help him build confidence and treat his condition as a condition and not a reflection of his value as a human being. We’re trying to boost his confidence and find ways to make him feel as special as he is. Having to do that for my son is hard and it makes me sad. It’s an uphill battle. But I would do it all day, every day, if that is what he needed.

Because there is nothing more important.