Lone Tree in the Middle of a Lake

A lone tree in the middle of the lake. Different, out of place, lonely, obvious. Sometimes, this is how we feel.

I’ve been trying to write this post for days now. And struggling every single time I sit down to do so. The cursor blinking at me. Taunting me to type. But writing this post means feeling it again…and sometimes. I’m just tired of feeling it. Since Monday night, I’ve mostly excluded myself from general contact with others. With the exception of the gym. Because that place refuels me and makes me feel stronger. Sometimes, I’m just so damn tired of feeling and talking, talking and feeling. Sometimes, I just want to shut off my brain, close the blinds, turn on Netflix and cover myself with a blanket. Because anything more takes too much damn energy.

That pretty much sums up how I’ve felt this week.

Why? Really, it was nothing major. Yet, even the smaller things trigger the bigger things and then, well…my mind starts racing and sliding in a downward spiral. And then…I just get quiet.

So what happened? Monday night, the kid had a bad swim practice. And when I say ‘bad practice’, I don’t mean his swimming sucked, I mean this: lack of focus + boundless energy + new coach = Disaster

Let me break it down for you. It gets pretty tiresome explaining the intricacies of my son’s brain to new people in his life. And yet every time he has a new coach, teacher, leader, etc. – it is important to do this. Because you never know when his anxiety or mood could cause a break down or episode. And thus, it can be important for those responsible for the care of my son to have a more colored in picture of who he is. But in some ways, it might just be easier to let it go, not say a thing. Let them just work it out. But then I think that can be unfair as well. For both my son and the coach or teacher. Yet, at the same time, by mentioning his needs and brain differences (ADHD, Mood Disorder, etc.) I may be inviting additional scrutiny from those same coaches or teachers. Suddenly, my child becomes labeled and it feels like they expect him to mess up. They watch him, study him, keep their eye on him at all times. And then guess what, of course he gets caught doing something ‘wrong’ because eyes are on him at all times.

See the dilemma? I revisit and revaluate my approach on this every. single. time. it comes up. And nearly every time I second guess myself. Am I making the right choice? Am I doing enough to advocate for my son?

Typically, I don’t notify the new coach or teacher of his brain differences on moment one. Often, I give them some time to get to know my kid first. Then…I introduce myself, explain whose parent I am, watch for their facial reaction (it’s true, I do), and then launch into a Cliff Notes version of his history, medications, needs and potential triggers. It’s exhausting. Because you never know if this person will ‘get it’. You never know if they’ll be receptive and a good listener or if they’ll roll their eyes as you walk away and think of you as the helicopter parent that just needs to learn to LET GO. And far too often, I care way too much of what others think of me and of my son. I want them to see all that I see, in him.

I’m learning to let go, but it is hard. Especially when I know I am at times his PR firm, sometimes his voice and ALWAYS his advocate. It is my job, to ensure he gets what he needs, when he needs it. And I am teaching myself to care less and less if that means teachers and coaches think I’m hovering. Yet I understand the need for a good relationship with these leaders because they have my son’s heart in their hands, when I don’t. And thus begins the dance between advocating and communicating and getting in the way of them doing their job.

This past Monday night, a couple weeks into practice with this new coach, Noah was really struggling. By this time of night, some of his medication has worn off and his energy comes rushing back into his body, pushing on him like water against a dam. He does what he can to manage it, but by this time of day, it becomes nearly impossible to contain this force. What happens next? He moves. All the time, he moves. Some parts of his body, all parts of his body. He. Can’t. Be. Still. It is not uncommon for his brain to send the wrong signals and for each hemisphere to run at different speeds, thus causing a disconnect in attentive and focused behaviors. During swimming, when he is between sets and supposed to be resting at the wall and listening to his coach give tips, he is often seen turning in circles, running his hands through he water, bouncing his kick board up and down. To the eye of the coach, it looks like he isn’t listening at all. And sometimes, they’re right – he’s like any other kid, not paying attention. But often, he is listening, and doing so attentively, in his own way. His movement does not mean he isn’t listening. His lack of eye contact, stillness and silence does NOT mean he didn’t pay attention. And in fact, in most cases, this is helping his brain sort out the sensory input to prioritize and make sense of it all.

But to our common and neurotypical minds, his behavior seems that of someone who isn’t listening, doesn’t care and is poorly behaved. And often, this is exactly how he’s treated. This past Monday night, this was his experience. He wasn’t being still, quiet and subdued – like many of the other kids. He was moving, he was chatty, he was busy. And this was distracting to other kids. I heard his name numerous times from the coach that night, “Noah!” Over and over again. At one point, she exclaimed, “UGH!” and shook her head back and forth and walked away. In that moment, she gave up on him. And it hurt to watch. Do you know why? Because I’ve done it myself. More times than I could ever count. In the moment, I gave up. In exasperation, I gave up. I know his challenges, and yet, I gave up.

Later that night, after many of her attempts to redirect, state expectations and not seeing them met, she kicked him out. There were only ten minutes left of practice. But still. It hurt. I watched him grab his equipment back and push open the door to the locker room with frustration. She called him out. And I knew, he was already angry at himself and would quickly make the turn to guilt and self-contempt. My heart broke for him.

He showered and we walked quietly to the car. He was withdrawn and closed. As we drove home, I asked him about practice and what happened.

“I can’t help it Mom. I can’t. Nobody understands it. Nobody understands me. I can’t. I try and I try, but I can’t be still. I’m under a microscope all the time! Other kids move around and make noise too, but me…every where I go, ALL THE TIME, I’m under a microscope!” He collapsed into a ball in the back seat and cried the rest of the drive home.

What was I to say to this? There really wasn’t anything I could say to make it different, make it better. I opted on the truth. The messy, unfortunate and very real truth.

“Noah, this is going to be a battle for you for much of your life. You have more energy than most, your brain works differently than most. And that is hard for others to understand. You look capable in their eyes. You look like you should be able to be still and listen. And it is hard for people to understand you cannot control all of the impulses your brain sends the rest of your body. Unfortunately, that means they will always be looking at you. You are smiley and bright faced, you make noise and move a lot. All the things I absolutely love about you and all the magical things that make you, YOU. But that also means, you will draw more attention than other kids. And it means, when you do something a teacher or coach doesn’t want you to do, they will likely see it. Most of these times, they will see YOU doing it before they see the other kids doing it. And it sucks. There’s nothing else I can say to make it better. But know this, these very things are also your gifts and so it just means you might have to try that much harder for them to see these as your gifts instead of their nuisances. Many people do see these as your gifts, but some do not. All you can do is try.”

I held back tears. Can you imagine the energy he spends all day, trying to hold it together. Trying to be still, quiet and invisible. But it isn’t his nature to be invisible. He wants to matter, to be noticed. But his brain just doesn’t always send the right signals to do this in an appropriate way.

One of the hardest parts of all of this is to help others understand his disability, his difference. Because it is ‘invisible’ and brain based, our society often thinks someone like Noah should be mind over matter. Our society often things that if he just ‘tried a little harder’ he could better control himself and his body. But here’s the thing, asking him to be quiet and still is like asking someone on crutches to run a marathon. It’s damn near impossible.

And so this week, when we had to deal with these differences yet again, when we had to start over with a new person getting to know who Noah is. Well, I just felt depleted. Here we go again, I thought. I felt unprepared for the battle. Naked, without armor. Bruised and already beaten. He’s exhausted. I’m exhausted. Both of us tired of him being misunderstood.

We don’t give up. But some days, we just lay down our swords and rest. Some days, we just decide the fight in that precise moment isn’t worth it. Some days, silence fights the battle for us. Wielding the power of reflection for all of us. We’re learning, that we don’t have to engage in every, single conflict that comes our way. That some days, we just learn to be okay with being misunderstood, because we can save some energy for the next time.

It doesn’t mean it doesn’t hurt. But it means that we preserve ourselves. We rest our weary souls and restless hearts, and we learn to love ourselves more. Sometimes, we realize the battle isn’t worth fighting. Sometimes we realize the importance of backing away from it, putting our hands up, and surrendering. Because surrending to the understanding that other’s thoughts are not within our control gives us strength. It gives us courage. And we delight in our truth of being different. We celebrate being the lone tree in the middle of a lake.

And that, is a beautiful thing.