Tag: parenting

Leading With Love

Sometimes I look at my son and I see a tall blade of grass, swaying in the breeze. His legs appears rooted on the ground, but his body moves and bends as if it is being pushed by an invisible force. Or a corn stalk that is too thin to support the ear that is is carrying, bobbing in no particular direction but down. It seems an exhausting tasks to constantly keep from falling over.

When he moves, I see a puppet whose strings sometimes get twisted. The extension of his limbs or the gate of his stride are not quite right, and he sometimes tumbles to the ground. We do our best to pull him up and untangle his knotted strings, but each time he falls, my heart aches.

I wonder if, when he does fall, when he’s lying on the ground, if that’s when he feels the most stable. Like in my younger days after I had too much to drink. When I wanted to lay on the bed and prayed for the world to stop spinning around me. My prayers were rarely answered, but at least I felt like there was nowhere further to fall. I could close my eyes and feel the world spread out below me and holding me so that my body could release all its tension. Only, he shouldn’t be old enough to know what that feels like.

When he falls to the ground, I get angy and frustrated and sad. I look at him as that blade of grass, or stalk of corn, or sailor, or puppet. I can’t help myself but wonder if he wants to stay down for an extra second to let his body not worry about balance. But when I do, when he looks at me, I worry that he will see those expressions on my face directed at him. That he’ll think that I am angry and frustrated at him, or that he’ll see me sad and think that it is because of him. It’s a heavy burden to think that you are the cause of such powerful emotions in another person. Of course, he’s not. My anger, my frustration, and my sadness are not because of him, but because of what is happening to him. But what else could he think when I look at him the way I do? He shouldn’t be old enough to know what that feels like, either.

The cruelest thing that epilepsy continues to do is to try to make my son feel less than he is. Less than an amazing boy. Less than the best son. Less than a gift. Less than a miracle. It feels as if it is using me to do its dirty work, to project those feelings on my son through my worry and frustration. I catch myself doing it, but usually after the message has been delivered. It’s a terrible feeling to worry about what your child thinks you think when you look at him. Because regardless of what is visible on the surface, hidden underneath is always love.

I wish my instict was to lead with love. I want so much for that to be what he sees when I’m looking at him instead of the temporary emotions caused by a symptom of his condition. I don’t want him to have to remember that I also love him, I want that to be where he goes first. Because the pain and sadness at what his condition is doing to him is amplified by that love. Because loving him is where I am, first and always.

May 16, 2017
How People On Reddit Talk About Epilepsy

As a technologist, I’m fascinated about how people use social media. It’s such a vast space but people find places where they can make connections around any number of topics. Social media has fostered revolutions, saved lives, but also taken them. It enables freedom of expression but also allows an unprecedented level of hatred. Like a hammer, social media is a tool, and it’s up to humanity to use it to build or to destroy.

I read an article that described a language analysis done on comments from Reddit. Reddit is a community website that aggregates content. It also allows members to share, rate, and discuss the content. I thought it would be interesting to see how people on Reddit talked about epilepsy.

Why does it matter?

If you’re reading this post, you may have been lead to it by Twitter, Facebook, or Medium. Maybe you subscribed to the blog. In any case, you are using technology and the Internet to consume information. And there is a lot of information out there…some good, some bad, some supportive, some not. These types of analyses aren’t perfect, but they can provide some interesting insights.

I’m old enough to be able to navigate these platforms and decide what to take and what to leave. While my son is not of Internet age yet, he will be soon. And he’ll be more likely to look to social media for support. The more I know about the different systems, the abler I’ll be to guide him as he explores them.

More generally, though, these types of analyses can be helpful to see what aspects of epilepsy people are talking about. Or, not talking enough about.

What data did I look at?

For this project, I grabbed comments from March 2017 that contained the word “epilepsy“. That gave me 3,046 comments out of about 79 million (0.0038%). Literally, a drop in the bucket, but enough for a simple analysis.

Number of comments by day in March 2017

Here is how the epilepsy-related comments were distributed throughout March.

The big spike on March 22 was partly due to a question in AskReddit. AskReddit is where posters ask and answer “questions that elicit thought-provoking discussions”. The spike was the result of responses to the question “What are you sick and tired of having to explain to people?.” I can imagine people living with epilepsy having an opinion on that question.

Which subreddits are the most active?

Next, I wanted to break down the comments by the group they were posted in. On Reddit, the groups are called “subreddits”. Those discussions helped the AskReddit subreddit lead the comment count for epilepsy-related posts. The subreddit dedicated to discussions about epilepsy came in second.

What adjectives do people use when they talk about epilepsy?

Besides looking at simple numbers, I wanted to analyze the comments themselves. I ran them through Google’s Natural Language (NLP) API to see what I could learn. NLP takes a sample of text and breaks it down into parts of speech and sentiment.

First, I looked at the parts of speech. Here are the top adjectives most used in conjunction with the word “epilepsy.”

What is the sentiment of the comments about epilepsy?

Next, I wanted to add the sentiment piece. The NLP looked at each comment and to try to infer if it represented a positive or negative sentiment. “I won’t let epilepsy get me down” is an example of a positive sentiment. “I have epilepsy and am depressed” expresses a negative sentiment. I wondered if the adjectives used changed depending on the sentiment of the comment, and they did.

For comments characterized as positive, words like “good”, “great”, and “best” were included.

For negative comments, “bad”, different”, and “severe” made the list.

I also wanted to look at the sentiment across the different groups. The chart below shows the average sentiment of the epilepsy-related comments by subreddit.

Again, a positive score reflects an overall positive sentiment of the comments. Interestingly, the big negative score on the chart is for the subreddit “KotakuInAction.” The group relates to the “GamerGate” controversy and other gaming and Internet issues. The thread that contained the epilepsy comments related to the Eichenwald case. That was where a journalist with epilepsy was sent a seizure-inducing twitter message.

What else do people talk about when they talk about epilepsy?

Finally, Google’s algorithm also provides other topics (entities) that are discussed in text. Here are the most common entities mentioned in conjunction with epilepsy on Reddit.

Let’s look at January through March…

Since the data was available, I ran a few of the reports for the first three months of 2017, as well, to see if anything changed.

First, here are the number of comments for January through March.

I also wanted to see how different the entities report was over the three months. There was a lot of overlap from the March chart, showing that conversations about those entities are likely normal.

Finally, I also looked at the occurrences of specific references to a handful of positive and negative terms that often come up when speaking about epilepsy.

Looking at the two charts, clearly, references to medication, side effects, and depression were often discussed in the comments on Reddit.

What’s next?

This project was a first look at using natural language processing techniques to analyze social media posts about epilepsy. There are a number of applications for such technology, and it will be interesting to explore more sites and using different algorithms and techniques. If you have any thoughts or suggestions on other ways to look at the data, please leave a comment below.

If you’re interested in doing your own analysis, you can find the source code and other information on my GitHub page. A shout-out to Sara Robinson for her article, which was a guide and huge inspiration.

May 2, 2017
Part Of The Team

Spring is here, which means it’s time to hang up the skates and grab the bat and glove. This year, my son moved up from teeball, which I coached last year, to baseball. Since I’m not coaching this year, it meant having another conversation about epilepsy.

I still get nervous introducing people to my son’s condition. I try to strike the right balance between “he has a serious medical condition” and “everything is going to be fine.” It’s hard. Too much information can overwhelm even the most altruistic volunteer. But I’m not doing my job unless I am honest about all the potential challenges.

There are times when I wish that I could not say anything. I could hope for the best and let my son take part in an activity without a caveat. After all, he’s not likely to seize. And there are plenty of kids on the team that have a hard time listening or focusing. He could blend in.

That would be easier. The coaches wouldn’t have to be scared. I wouldn’t have to worry about him being treated differently. I wouldn’t have to face the reality of our situation. I wouldn’t have to make epilepsy a part of everything that we do.

But, the fact is, it is a part of everything we do. And it’s my job as a parent to do what is best for my son. I want to keep him safe but I also want him to enjoy the experience. The only way to do that is to have an open communication channel with the people in his life. We were told early on that we, the doctors, nurses, teachers, aides, babysitters…we are all a part of my son’s team. And like any good team, everyone needs to be informed so they can play their part.

When we talked to his coaches, they thanked us for telling them, then they asked what they could do to help. That night, they reached out to us again to let us know that they were happy he was on the team. To the father of a child with epilepsy, the best way to show that they were part of our team was to make him a part of theirs. They had done that with one phone call, and they continue to do it at every practice.

As anxious as I get about doing it, the more we have the conversation, the better we get at it. The better we get at it, the better people respond to it. And the better people respond to it, the less anxious I will hopefully be the next time. Which is good. Because it’s a conversation that isn’t going away.

April 25, 2017
Facing Things Head On

My son feels the need…the need for speed. Ever since our last trip to an amusement park (which ended with two missing teeth), he has asked to go back. So, on spring break, we surprised him with a visit to Busch Gardens.

For the hour-long car ride, we kept our destination our secret. But as we pulled near the parking lot, the tell-tale blue track of a roller coaster poked above the trees. His excitement filled the car. As we drove around the parking lot that bordered the park, all he talked about was riding a roller coaster. He wanted to go back on the one that had claimed his two front teeth last time. Calling it out was more because it was one of two “big boy” roller coaster that he was tall enough to ride. But I liked to think he wanted revenge.

Unfortunately for my son, his date with his nemesis would have to wait. Grandma had bought us tickets for a special safari. The disappointment was clearly visible on my son’s face, but we still had a great time. As soon as we waved goodbye to our guide and collected our things, though, he led the way to his date with destiny.

The last time we rode this roller coaster was my son’s first time on a big one. It includes an unexpected acceleration right out of the gate that launches the cars into the sky. My son’s face hit the harness, leaving him bloody and toothless. But otherwise, he seemed to enjoy it and he even rode another roller coaster later in the day.

This time, I expected him to have a much better experience because he was older and a more seasoned rider. That was not to be the case. After the initial speed burst, he was audibly questioning why he made this “bad choice”. I held my hand across his chest as best I could to comfort him (and try to keep his new teeth in place). After another dip and a barrel roll, he said he didn’t feel good. I could see the end of the ride coming up and hoped he could keep his breakfast from coming out. Fortunately, we made it. The ride stopped, the harness lifted, and he carefully climbed out of the car. For the next 30 minutes, he continued to question his life choices. Eventually, he decided that he needed to be “maybe 20” before he tried again.

I felt terrible. Partly because, when we stopped to see our picture from the ride, I laughed. A lot. Also partly because we bought a copy of the picture. And also because I posted it online. And now because I’m including it in this post.

But I also felt bad because my son was genuinely disappointed in himself because he got scared. Not because he has epilepsy, which has often been a source of frustration. Not because of his meds or because of how many seizures he had. But because he was a normal kid that bit off more than he could chew.

Over the past few years, my son’s condition has limited aspects of his life. It’s easier to blame epilepsy when things go wrong. It’s more convenient to have a culprit. But we taught him to listen to his body, to be brave, and that he doesn’t need to do anything that he doesn’t want to. That guidance has served him well, and he’s one of the bravest kids I know. It’s helped during those long hospital stays with relentless testing and needle pricks. It turns out those lessons we taught him are the same he will rely on when things don’t work out.

After a long afternoon playing games and riding the kid’s coaster, my son looked at me with a serious look. He took a deep breath, stood in front of me and told me that he wanted to go back on the big roller coaster.

My first instinct was to protect him. I didn’t want him to have to put on another brave face and will himself through one more thing. He does it at the doctor. He does it when his body is exhausted but he wants to play or feel normal. I told him that he didn’t have to and that we could ride it next time. But he was determined.

We walked back over to the where our day began. Without hesitation, my son walked past the height check and made his way up the tunnel towards the line. He was meeting this challenge the same way he had faced those presented by his epilepsy.

Head on.

April 18, 2017
Doing The Best I Can

As parents, we have to figure out what lessons we want to teach our children. The balance of our “when I have my own kids, I will/will not” promises are finally called due. We get to decide what to keep from our own childhoods and what to throw away. But knowing what to keep isn’t always clear and, worse, it can be terrifying. It involves shifting perspective enough to question some fundamental truths.

When I was growing up, I never thought anything I did was good enough. I took little joy from what I achieved because there was always someone who did it first, faster, or better. There was always room to grow. Accomplishments were expected but rarely celebrated. Humility was a virtue and pride was a sin. These messages became the foundation for how I felt about myself and how I lived my life.

It wasn’t always obvious to me that this part of my philosophy wasn’t something that I wanted to pass on to my son. After all, I turned out okay. I am humble and grounded. I’ve had amazing experiences. I have a good job and the best family. Knowing that there is always someone better means striving to work harder, to learn more, and to do better. It made me a perpetual student and a life-long learner.

This spirit of growth and learning is one that I want my son to have. But before he started having seizures, I wouldn’t have thought to teach him that lesson in a different way.

I remember sitting by his bedside in the hospital. The dark room was lit only by the light coming from the EEG monitor that showed constant, wild activity. His body had gone toxic from a bad reaction to one of the medicines we hoped would stop his seizures. It didn’t. The seizures raged on, and the toxicity left my son immobile, ataxic, and unable to form thoughts or words. I felt helpless. I was afraid. I prayed. This lowest of points stretched on for days.

When he could start to form words again, it was the most amazing thing I had ever seen, and we cheered. When he could hold his frail body up by himself, we cheered. When we left the hospital, even though our boy was not quite himself, it was another cause for celebration. With each milestone he passed, we cheered. If he stumbled, we acknowledged how hard he was working. There was no “but”. “But, you used to be able to do it better.” “But, those other kids are faster.” For the first time in my life, I saw what it meant to work hard and to do your best and for that to be enough. “That was great, buddy. You worked so hard to do that. I’m proud of you.” Full stop.

I hate epilepsy. I hate what it does to my son. But I would hate myself if I didn’t learn the lessons that this experience is teaching me. I don’t want to raise a child that always gets a trophy. But I also don’t want to raise a kid that thinks there is a trophy for everything and that he never gets one. I want him to be proud of doing the best that he can. That should be a good feeling, not one that should lead to shame. Epilepsy showed me how dark things can be, and these moments of grateful hope and joy can shed a little bit of light.

It turns out that this approach has led to my son working hard and liking to learn new things. Except he feels good about where he is. He is also braver than I ever was, willing to try new things outside of his comfort zone. He’s also a good sport and as grounded as any 7-year-old should be. Those qualities that I had hoped to pass on to him are there. Except his motivation isn’t based on feeling less than everyone else. His motivation is based on being the best him that he can be and being able to feel joy in that.

Before you feel bad for the other little boy in this story, this experience has taught me the same lesson. In celebrating my son’s accomplishments, I’m starting to acknowledge my own, too. Just a little. But I’m doing the best I can.

March 21, 2017