Category: parenting

My Apologies

Last spring, my son and I went to a baseball game with friends to celebrate their son’s birthday. We had a great time, mixing cheering for the home team with ballpark food and catching up. Our Phillies won in dramatic fashion in the bottom of the ninth inning, which the birthday boy thought was an amazing present from the team.

After the game, I texted to thank them for inviting us. As we chatted, our friend included an apology for his son’s relentlessness, which, during the game, I took as enthusiasm and excitement for the experience. Instinctively, I responded by telling him that he should never apologize for his son and assured him that we had fun and that it was a delight to be a part of his son’s special day.

I’ve been thinking about that interaction a lot since then.

We’re fortunate to have people in his life who know our son and appreciate him for who he is. These include the teachers at his school, for example, and the doctors, nurses, therapists, and other healthcare providers with whom we interact regularly. They see and accept him, and they don’t make him feel like he needs to apologize for being himself. It includes friends who have children with similar conditions and other friends who have taken the time to get to know him.

But how many times have I apologized for my son to the outside world, whether it’s his inability to know when to stop telling a joke, his impulsiveness, or his awkwardness? Where is the line between apologizing for an act and apologizing for a person? Is there even a line? What if you can’t separate the actions from the person or the condition?

I apologize when he doesn’t understand something other kids do, when he’s unaware of the world around him, or when he’s too tired to function. Even without the special circumstances, I feel like I’m the type of person who would apologize for him doing things or just being a kid because the expectations I often set are based on how I think he should be, what society expects him to be, or, also unfairly, what an adult is expected to do.

Whether it’s because he sees me do it or not, I have noticed that my son apologizes a lot, too. In some cases, it’s justified to apologize for an action that impacts a person around him. Other times, he’s apologizing for something he can’t control or a symptom of his condition, like his struggle with his memory or his attention. Those are the times when the apologies can bleed into his identity and how he feels about himself, which is what I am desperately trying to avoid.

Because we never want him to feel like he needs to apologize for who he is.

Ever.

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.