Epilepsy Dad

We All Have Needs

We need joy as we need air.
We need love as we need water.
We need each other as we need the earth we share.
Maya Angelou

In psychology, Maslow’s Hierarchy of Needs depicts a five-tiered model of human needs: physiological, safety, love/belonging, esteem, and self-actualization. It’s often depicted as a pyramid with the idea that lower-level needs must be satisfied before higher-order needs can be fulfilled.

Growing up, my physiological needs were largely met. I had food, drink, and shelter. I was clothed with the finest sneakers from the grocery store and mismatched Underoos from Goodwill.

The next level, safety, is about order, predictability, and control. There wasn’t much of this in my childhood. I grew up in a different time, surrounded by a system that still believed in corporal punishment and people who were angry, frustrated, and mean. The lack of control, the fear of being punished, and the unpredictability of my environment made it impossible to feel safe.

If I was sad or scared and expressed my needs through crying, I never knew if I would be comforted, ignored, or told, “I’ll give you something to cry about.” The people around me couldn’t handle their feelings; mine were often too much, inconvenient, or wrong.

My safety level was never fully satisfied, so there was little hope for anything above that. My desire for love and belongingness conflicted with my need for safety, especially within my family. This is especially common with children and why people cling to abusive parents or partners. I had friends but never friendships, and giving and receiving love was confusing and dangerous.

Esteem is about the desire to be accepted and valued by others. It’s hard to feel worthy when you don’t feel like you belong, and it’s impossible to achieve self-actualization, the top level of needs, when you don’t believe you have any potential to become anything of significance.

Over the years, I tried many ways to make my needs important to have them met. I would put other’s needs above my own and do my best to satisfy them in hopes that they would do the same in return, but the people I surrounded myself with were only interested in having their needs met. If I did find someone willing to consider my needs, my programming reminded me that it was dangerous and that they wouldn’t be met anyway, so it would be better not to express them to avoid disappointment. I had a therapist who once told me that in a healthy relationship, there is room on the shelf for both persons’ needs, but I operated as if there was only room for one, and the needs on the shelf weren’t mine.

I’ve seen more and more how I interact with the world determines how my son interacts with the world. Whether it’s his desire to show his mother he loves her by heading straight to the flower section when we go to the grocery store or his unfortunate habit of not knowing when to stop a joke, I see what I do in him. I also know how the things that I don’t do but should do are absent from his behaviors.

I think about the example I am setting for my son. Even if he didn’t have special needs, I would want him to feel comfortable putting his needs out there and being surrounded by people who are willing and capable of meeting them. He deserves to know what a healthy relationship is and feel like an equal partner in these relationships rather than unworthy or afraid like I did. The reality is that he does have special needs, and he will be more dependent on others and will most likely be less able to navigate the world alone.

Change is hard, but there are so many ways in which our journey has already made me a better husband, better father, and better role model for my son. He already has the biggest heart and is sensitive to the needs of the people around him. I want to ensure he knows his needs are just as important and that he is worthy of having them met, too.

We All Need Help Sometimes

Growing up with a busy, single mother and a rebellious, angry sister, I was used to not having help when I needed it, even when I asked for it. Eventually, I learned to internalize my struggle and figure out a solution. Externally, I looked like a clever, self-sufficient boy. Internally, I questioned whether I could depend on anyone for help or whether I was worthy of being helped at all.

That early programming stayed with me all my life and served me. The truth was that I was a clever boy, and I could figure things out. Those skills helped me navigate my childhood and transition to adulthood and a successful career. I was low-maintenance, a quick learner, hard-working, and productive.

That’s not to say that I never had help. Throughout my life, I’ve had many good teachers, bosses, and friends who were generous with their guidance and assistance. But I rarely asked for it, and when it was freely given, it often made me feel uncomfortable and that there was something wrong with me because I couldn’t do it by myself. Receiving help made me feel ashamed. That shame motivated me to need less help in the future. That made me a better employee and resulted in more opportunities. I had it all figured out.

In the words of Marshall Goldsmith, ‘What got you here won’t get you there.”

In hindsight, the pseudo-reward cycle between shame and progress is neither healthy nor sustainable. No one can do everything and solve every problem, and that’s not a sign of weakness—it’s reality.

Nowhere was that more evident than when our son was first diagnosed with epilepsy. And I don’t mean medically. I could not have done what the doctors, nurses, therapists, and support staff did to keep our son alive and put him back together during the first few years.

There were other areas where I needed help, but rather than ask for it, I, again, internalized those needs. I needed to be strong and carry on. I could take care of my fears on my own. I could deal with the stress those years put on my marriage and still focus on my career. The more I realized I wasn’t doing any of those things, the more shame I felt and the more I turned inwards.

That cycle didn’t only affect me; internalizing it also distanced me from my family, especially from my wife. Not only was she dealing with everything I was, but she bore the brunt of the load and was the target of our son’s outbursts and anger. She also saw what was happening to me and was unable to help because I couldn’t let her.

That led to many hard years. When I finally sought help, it was almost too late. A family can only take so much before it crumbles.

That help came through therapy. That help came from an incredible wife and partner. That help is why our son and family are where we are today. It showed me that asking for help is not a weakness, that I am worthy of being helped, and that there are people who I can depend on for help.

It also helped me realize that people want to help. Being vulnerable and asking for and accepting help brings people closer. I’ve seen that in my relationship with my wife and hope to instill that behavior in our son. He’s going to need help as he navigates his life and I want him to know that asking for it is okay, that there are people who he can depend on to help, and that he is worthy of being helped.

Like every change, it’s a journey. I still have a lot of programming to unravel. I’m better at asking for and accepting help at home than in other environments, like work. But it feels like I am on the right path.

And

“And? And is just one word. How is that helpful?”
Monnerat, K. (2022). And. kettlepot press.

I had to look up how to do a proper book citation for the quote above. You may notice that the author’s last name looks familiar. Hint: it’s also my last name. That’s because the author is my wife, Kerri.

A few years ago, she published And, a book about feelings, friendship, grace, and permission to feel multiple, conflicting feelings all at once. The book won a BookFest Award in 2023 and received positive reviews and comments about the impact of the story and the powerful three-letter word.

As with many impactful books, And is drawn from the years of experience my wife had teaching children and her journey as the mother of a child with special needs. It’s also a word and idea we live by in our home that helps us navigate and have a common language for the complex and sometimes conflicting feelings we experience every day.

A very common example in our house is when my son is doing something, whether a school performance or a baseball game, and he is feeling nervous and excited. This situation comes up so often that my son, who likes to make up words, created the portmanteau “nervou-cited,” and we use that as shorthand for talking about his feelings in those situations.

We have had many conversations where someone will interject, “That’s an and.” We can be talking about a situation at work or the state of the world. The conversation can be about the dogs or our relationship with another person or family member. The reminder that we don’t need to force these experiences to have one emotion by dismissing the others is a truer representation of how we should be navigating the world and reduces the urge to focus only on the negative emotion or to try to force ourselves only to let ourselves feel the positive emotion.

The reality is that being a father is stressful and joyous. Being a special needs dad is scary and rewarding. A project at work is challenging and impactful. An upcoming presentation brings nervousness and excitement… nervou-citement.

By giving ourselves permission to feel multiple emotions at once, we can better navigate the complexities of life in a more honest, more effective way by dealing with everything we are feeling, not just the one emotion we think we should feel or the one that feels bigger.

In recognition that 1 in 26 people will develop epilepsy in their lifetime, get 26% off your order with the code EPILEPSYDADBLOG when you order directly from kettlepot press.