Tag: epilepsy

3,128

We are almost as much a Lego family as a Marvel family, so when Lego releases a new Marvel set, it quickly finds its way into our house.

A 3,128-piece Lego Captain America Shield had been sitting in a box in the basement for a few weeks. One day, my son casually mentioned that he was working on it, and then, a few days later, he said he had finished. He brought us down to look at it, and it was amazing. He was so proud of himself for accomplishing such a marvelous (ha!) feat.

The next morning, I went to the basement to grab trash from work we had done. There were long metal rails supporting the old ceiling tiles that we took down, which I had bundled. I picked them up, and as I turned towards the door, I heard a crash behind me.

I turned and saw the Captain America shield that my son had spent days making and had completed just the day before knocked over, with pieces strewn across the floor.

My heart sank. I was devastated, thinking how devasted my son would be when he saw what happened.

I was going to head to work after taking out the trash, but I knew I couldn’t leave before attempting to put the set back together.

I collected the pieces and found the instructions, which were in a book that was about half an inch thick. I flipped open the pages, and it was at that moment that I realized I might be in trouble. The set was extremely complicated. I’m a pretty good engineer and skilled at figuring things out, but it took me some time to understand the construction. Square bricks making a round shape is not an intuitive concept.

It took me more than an hour to repair what I had done. Fortunately, the broken-off segments stayed intact, and the individual pieces were easy to identify and replace. But, in scanning the instructions, I had that feeling that I sometimes get when, for as much as my son struggles, he does something like this, and it blows my mind.

When I told my son what happened, I made a big deal about how impressed I was that he did the set all by himself. I told him how overwhelmed I was when I opened the instructions and tried to understand how the pieces fit together. Then I reminded myself of what he does when he believes he can do anything. Once I adopted that mindset, I was able to fix the shield.

He was proud of himself, not only for accomplishing the daunting task but also for inspiring me to believe that I could do anything. He doesn’t realize that he teaches me that every day by demonstrating it time and again.

Making the Invisisible Visible

One of the challenges of navigating the world as a special needs parent is finding the time to manage caregiving responsibilities while still maintaining a sense of self. In our family, no one knows this more than my wife.

Before we moved to Pennsylvania, my wife ran a successful musical theater school in Colorado. When the opportunity came up to relocate for my job, she was ready to start something somewhere new, so we jumped at the chance. Within six months of moving, however, our son was admitted to the hospital in status where he would spend the next few months.

Even after he was out of the hospital, there were continuing health and behavioral issues, as well as endless appointments. My wife became the primary caregiver so I could go to work, which meant she struggled to find time for herself and had no time to pursue her next opportunity.

Occasionally, my wife would try to start a small music class, but the unpredictability of our son’s condition made it impossible to maintain a routine. Classes became random private lessons, but it wasn’t what we hoped for her when we made the move.

Months became years. As the number of appointments declined, her focus shifted to fighting for the services he needed at school and finding other ways to help him reacclimate to the world. There weren’t fewer things to do as his medical condition stabilized; there were just different things to do.

Epilepsy is sometimes called an “invisible disability” because it doesn’t present external characteristics. Unless you spent time with our son, you wouldn’t know how his condition impacts his thinking, memory, or activities.

The same label extends to my wife and to many caregivers of children like our son. You wouldn’t know by looking at her what she gave up or the emotional and physical challenges she has had to endure caring for our son. She literally kept him alive, fought for his services, found the right doctors, and spoke up when she knew something wasn’t right. She gave of herself to give him the life he had when there were times we weren’t sure he would have a life at all.

I continue to be in awe of her. In addition to what she did for our son, she fights through her own health and emotional issues. In spite of that, she published a children’s book last year (it’s amazing, you should get a copy!) and joined a band (they’re amazing, you should see a show!).

I wanted to time this post for Mother’s Day to make the invisible visible and thank my wife for everything she has done for our son and family. I am also incredibly grateful not only for what she did for our son but for what she has done to help me be a better father, husband, and human.

Be Curious

Curiosity is one of my favorite character traits. I had a boss who would assign traits to different people to focus on when we interviewed candidates, and I always took curiosity.

One reason is that, for a role like mine, curiosity is an often overlooked characteristic that directly impacts whether someone will be successful or not. The other is that I am a curious person myself. One of my social media taglines is “endlessly curious,” which is why I am also taking a drawing class and French lessons.

I would ask questions in my interviews to elicit a person’s curiosity. What was the last thing you wanted to learn about? Why did you want to learn about it? What did you do to learn about it? What did you find out? Why was that the topic you shared? The best answer I received was from a candidate who had less experience than other candidates but was so passionately curious about the subject matter and asking the best questions that we ended up running over our time. He got the job.

It’s easier to be curious about a topic than about a person. Even a complicated topic is easier to understand than a complex person. It takes curiosity on our part and an openness to share on the other’s part. It takes willingness on both sides to be vulnerable, which can be terrifying. But the reward for being vulnerable and for being curious is a deeper understanding. It’s the difference between dismissing someone at first glance and building a connection. It’s the difference between being invisible and being seen.

There’s a great scene about being curious and the perils of not being curious from Ted Lasso where Ted plays darts with Rupert, the narcissistic ex-husband of Rebecca, his boss, friend, and the team’s manager.

Asking questions and being curious is the key to understanding our world. And it’s the key to us understanding each other. We don’t know what other people have going on in their lives, but we make judgments anyway.

I think about how this applies to my son and how people judge him without asking questions, without being curious about him, without knowing about him, without understanding who he is and what he endures every day to be a part of the world. They see someone who is different. An outsider. Without being curious, they will underestimate him. They won’t see his kindness, his bravery, or his heart. And that’s their loss. But it’s a good reminder for all of us.

Be curious, not judgemental.