Tag: ADHD

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.

Actually, My Son Is Not “Fine”. But He Is Amazing.

I spoke with an administrator at my son’s school, talking about how the year was going so far, asking about how the replacement for his one-on-one was going, and just generally checking in. The administrator said that my son seemed to be doing “fine”.

“Actually, ” I said, “he’s not fine. He has epilepsy. Some mornings, he has seizures. Then we give him his anti-epileptic medicine and try to help him keep his attention focused long enough to get dressed for school. Luckily on most days now, he can stomach breakfast. The diet that he is on is really hard on him, but hey, it helps with his seizures. Then he walks or, on good days, rides his scooter a few blocks to school. We’re grateful that the short trip doesn’t tire him out as much as it used to when school first started. Then we drop him off in to a class that has 29 kids and hope that his one-on-one (when he had one) cares enough that day to help him focus on his class work and hopefully pay attention long enough to pick up what is being taught that day. He can’t follow more than one direction at a time, and it takes an enormous amount of energy to stay focused for that long. By mid-morning, his brain is already exhausted and his body starts to follow, but he makes it to lunch, where he usually just watches his classmates eat. Recess, though, is his favorite part of the day, where he can play with his classmates with whatever energy he has left, although I think he usually wills himself to fake having energy so that he can just be with other kids. Then he packs up, heads home, has a small snack before his body and mind give up and he has to take a nap, just so he can wake up and make it the rest of the day. That’s not what I call fine.”

The administrator was caught off guard by my rebuttal. “I just meant that academically he seems to be where he should be.”

“He’s doing well academically because after he wakes up from his nap, our nanny reads and works with him to help reinforce what we’re hoping he’s learning in class and missing from the afternoon sessions. By the time I get home from work, he’s usually exhausted mentally again, but we get to play while dinner is in the oven. Well, unless it’s our night to go to behavior therapy. After dinner, we pop him full of pills again, head to bed, and then repeat the process for the foreseeable future.”

I don’t blame the administrator. He only catches glimpses of my son throughout the day. With other disabilities, there might be some external indication that a child is different, but with epilepsy and its related complications, you may not catch the signs unless you have a reference, or spend enough time with a child, or happen to catch a seizure. But while I don’t blame him, I also wanted to dissuade him from thinking that my son was just another kid and, just because he wasn’t seizing at school, that he was “fine”.

“Fine”. “Fine” doesn’t reflect the struggle he has to keep control of his body. “Fine” doesn’t show the foggy side effects of his anti-seizure medicine that clouds his brain, or the complicated, restricted diet that sometimes turns his stomach. “Fine” doesn’t capture how hard he has to work to stay focused or follow direction or put things in sequential order. “Fine” doesn’t get the help he needs at school so that he can try to keep up with the kids that aren’t filled with brain-altering drugs or seizing every day. “Fine” doesn’t convey how difficult it is for my son to make it through the day.

And yet, he does.

No, my son is not “fine.” But he is amazing.