Fatherhood and the special needs parent

Fatherhood for the special needs Dad

When I first found out that Shelly was pregnant with Hannah I was over the moon. Up to that point we had done everything we were “supposed to’; we finished school, had good jobs with benefits,we bought a house, and got married, it was a textbook approach to building a family. Some may say old fashioned, but in the way we were raised these items made sense not only for stability as a family but for stability as a married couple.

We didn’t jump right into having kids. When we were married in 2008, we had decided we wanted to enjoy each other, do a little bit of traveling, enjoy our early 20’s and grow as a couple. We wanted our foundation sound. Some in our communities would have given us a hard time about that decision. But honestly, it was for the best for us. We knew that there was potential for some complications for any child that we did have together. Shelly had a very good indication that she was a genetic carrier for a potentially lethal birth abnormality. And at very least our child might have similar struggles as Shelly had with her cleft lip and palate. So we waited.

About four years later, we were in a comfortable spot. Our careers were doing well, our homestead was…well “Homey” and I think we started seeing some of the people our age with kids, and that got that biological clock going for us. I think maybe for me, more than Shelly at that point. You can call it FOMO (fear of missing out) or jealousy. But I have always wanted kids. Shelly was very hesitant at first for the idea. I remember our conversation as we made the preparations to begin “trying” to have kids. She was worried about the potential for miscarriage, birth defects, etc. Very real, and very raw emotions. I just remember embracing her and making that promise as I’ve written many times in this blog “Whatever happens, we do this together.”

So very shortly after that Shelly found out she was expecting. As any new father I was overjoyed. Elated even. The typical fanfare ensued. Our families were excited.And we did the things newly expecting couples (at least 1st timers) do. We both got the “what to expect when you’re expecting books” I got the “dad” version. As I began reading, and maybe this was part of the schtick but it read like an instruction manual. Sure, it went over the basics, getting the home ready, how to support your wife through appointments, how to change diapers etc etc. But it really didn’t prepare you to be a partner and a parent. I guess that’s assumed knowledge, or because each couple and situation is so unique, a book cant possibly contain it all. Whatever the case, I took the best of that book, and the rest was just me trying to be a responsible father.

I have the privilege along with my wife to have grown up in “intact” families. Now, i’m not trying to be insensitive to those growing up in split homes, and through divorce. But there is something to be said about having that core family structure consistently as a kid. Sometimes marriages don’t work out, and that’s fine, but for our upbringing we didn’t have exposure to any other family dynamic. Which I think is what molded our attitudes around what parental responsibilities are.

My dad is a PHD Physicist who had worked in the military before joining the private sector, and my mother is a homemaker. Shelly’s parents had several jobs through her childhood, working for family businesses, banking, healthcare, retail etc. So even between us we had very different familiarity with what parents did. 

My dad was always gone first thing in the morning to late afternoon. Had dinner, watched TV, and went to bed. My mom did most of the “parenting” especially if my dad was “TDY” sometimes for a few months. My mom would take care of us kids, while juggling the schedules, appointments, homework, projects, and house upkeep. It was pretty stereotypical family and gender rules. Classic 1980s family. BUt one thing we didn’t do was go on any real vacations, never really experienced anything outside our household. Shelly on the other hand had parents that both worked and were always on the go, to keep their family going they had to put in the long hours and work the weekend art shows and long hauls in the truck. But they made time for family, they went on vacations, they took time for each other and went to every event and activity. So two very different upbringings. Little known fact I didn’t fly on an airplane until I was 25 years old…

My dad was very much the disciplinarian, it wasn’t a role he enjoyed. He never punished us for something we didn’t deserve (though at the time we felt we didn’t). He just wanted us to be responsible people growing up. To be better, to understand consequences for our actions. I always remember him saying (after I hit my brother, or did something incredibly stupid) “How does it feel? How do you like being picked on by someone bigger than you?” As a big brother I guess that level of empathy did sink in. I didn’t want to be the bully. Though years later my dad did pick up on the fact that I was only retaliating for my brother instigating me to be impulsive and wail on him…the lessons we learn in hindsight…

My dad wasn’t quick to use corporal punishment. But we had our fair share. We all knew “the belt” and his hand was usually the go to. Spanking was not taboo when I was growing up. Honestly, I couldn’t say a smack on the clothed butt wouldn’t do a lot of kids some good these days. Not to injure, or hurt, but to correct. But my dad wasn’t all about just the discipline, he really wanted us to succeed in life. He wanted the best for us. He was frustrated when we wouldn’t try, and he was proud when we succeeded. He still tells me to this day that out of all his kids, I was the one that grew up responsible. That he is proud of me, and that he knows I’m a good dad. God, I need those words more and more these days.

I think fatherhood is really just a translation of our upbringing and then adding a responsibility for a human life on top of all that. To quote from my favorite superhero movie Captain America “It amplifies everything that’s inside, so good becomes great; bad becomes worse”- Dr. Abraham Erskine. If you have love in your heart, and a deep moral system, fatherhood brings the best out. If you have an absence of love, or selfishness in your heart, it brings forward that frustration, that temper, that blame. Then add to that how you were brought up and how your father figure role modeled that behavior to you. We are a product of our environments. All things shaping who we are fathers are key for young boys to figure that part of themselves out. 

My upbringing with my dad, his supportive but disciplined approach, my involvement in the scouting program and my catholic faith, which honed my morals and my sense of duty. All these experiences and guide rails in life  just added up. Each skill builds on each other. I had never known a “power to abuse” I had been raised to be empathetic, I knew what it was like to be bullied, I knew the value of self-reliance. And through scouting I learned what selflessness and responsibility were. I knew what true inner strength meant, and how to use that for others, it was that duty, that resilience, the never quit mentality… Scouting made me a good leader, but my dad made me a good father. I’m thankful for my dad, for what he taught me, and continues to help teach me there is no replacement for that.

Also, for Father-in-laws. Don’t discount your position. When your daughter marries a man, you become a father figure to that young man too. And maybe, or maybe not he has had a role model and father figure. Oftentimes Father-in-laws can fill in some of the missing gaps. I knew that was the case for me and my FIL Jon. Jon and I aren’t just son-in-law and father-in-law, I regard him as one of my best friends. And while my dad and his parenting never can be replaced, Jon had worldly experience and a different take, that filled in a lot of missing pieces for me. There were some “come to Jesus talks” between us at times, and yeah he was a bit crass and hard on me as well, he doesn’t really put up with foolishness, and i’m a pretty foolish guy. But he gave a lot of unconditional love and respect to me. I think he knew what kind of guy I was. He has known me for the better part of 20 years. And that boating trip where I asked for his permission to ask Shelly to marry me (not my smartest plan) he could have easily thrown me overboard attached to the anchor. I’m thankful that day went very differently. He taught me how to enjoy the simple things. Fishing, boating, good food, and family togetherness. They took me on my first “vacation” and introduced me to the practice of eating a meal as a family. Formerly in my house we would just get called to come eat and then went and sat wherever. No real interaction. This was  a key learning for me and what I needed to learn about presence. I will be forever grateful to Jon, and the role model he continues to be for me. I have seen him laugh with me, cry with me, hold me up when I couldn’t. For that I am immensely grateful. He showed me what I had to be for Shelly. I just hope I do half as good a job as he does.

Fast forward, and now I’m a father. Nothing prepared me for it , no book, no blog, no family advice. When that life comes into the world your center of gravity changes. From the moment my daughter was born, I had a sense of duty and purpose. She was everything to me. Her and her mother, I had blinders to anything else. That’s how strong that pull is. Everyone knows that trope of the big burly dad, that turns into a blubbering mess for this daughter….well, minus the burly part I’m that dad. My daughter can reduce me to tears with just a smile, or a cry. They didn’t tell you that in the book. Good fathers cry for their kids, they aren’t “macho.” They are physically and emotionally strong, which also means being able to show emotion in a very real way.

I talked about Strength a little bit, and I’ve had my fair share of practice in strength. The emotional and physical fortitude it takes to care for a special needs child is equivalent to the labors of Hercules. Each day is a challenge, filled with ups and downs. You learn to deal with disappointment and frustration every single day. This could be at nursing that calls out for the night, a sudden illness, a bad seizure day, a therapy set back, or a bad doctor appointment where you learn another complexity for your child’s condition. But we must endure through it. That takes strength. And in a partnership like my wife and I it means that when she can’t be strong I need to step up and be stronger. When Shelly is at 50% I give 150%. Hannah deserves that. I shared in a previous blog that in our last hospitalization some very traumatic events unfolded. I found myself slumped on the floor with my wife in my arms just sobbing, as doctors worked furiously to intubate Hannah. At that moment I felt strength like I’ve never felt before. Even with tears in my eyes I was steady, I was reassuring, I had an unseen hand on my shoulder steadying me so I could be that rock for Shelly. Operating under sleep deprivation is no joke either. For the first month home with Hannah on the ventilator we had no nursing care, so Shelly and I were her only caregivers and had to monitor her equipment 24/7. If she got a mucus plug, or had a disconnect and we missed it it would be fatal. So Shelly and I took shifts. Each night we would hand off to each other. Mind you this is at the height of my season at work during Christmas, so they were long hard days at work followed by long nights with Hannah. It was hard. We had to be strong. We persevered. Mindset is everything, we are strong for each other, we are strong for Hannah.

Fatherhood isn’t easy, it’s not a walk in the park and your kids aren’t just an accessory to your lifestyle. Kids change your lifestyle! And you can embrace that change and the journey it takes you on, or you can fight against it and try to keep your sense of self intact. That is a big thing to overcome. It is hard being selfless and giving up on things you enjoyed, or maybe the freedom you had. I know a lot of parents this applies to. But you can have a balance. You can still enjoy things that you once did, but include your family and children. Instead of viewing them as a burden, see it as an opportunity to try something new. But when the time comes, be ready to make that sacrifice play. Cancel the tee time to go to your son’s baseball game. Give up buying that new motorcycle so you can buy a wheelchair for your kid (No, I do not want a motorcycle). Another Marvel superhero quote  and fatherly advice “Let’s just say the greater good has rarely outweighed my own self-interest”- Howard Stark. Howard was telling his son Tony that a role model father is someone who is selfless not selfish, and that he was going to have a hard time being present for Tony. Be that dad, I’ve learned in my experience you have to be present in your family. 

Present looks different in any circumstance. You can be physically present at recitals, awards banquets, sporting events. Or you can be emotionally present, listening, empathizing, and helping your child. When you lack one of these, you can feel abandoned or alone as a child. For us in the special needs community that can be hard. We fall into “routine” we don’t have the same milestones, so it’s easy to check out, to disconnect. Find new ways to be present, be involved in therapies, go to every doctor appointment, it’s what they made sick time for. I love doing arts and crafts with Hannah, she holds brushes and markers, helps me do the large portions of any art work and I help with the finer motor skills parts that she cannot do alone. We have made some amazing memories together just making things for Shelly…Think we can start an art gallery! I also learned that as annoying as Shelly finds it, Hannah loves Marvel movies (totally my kid) So whenever mom goes out, we watch movies together just hanging out, Ill hold her hand and react with her to the scenes just to include her, its little, doesn’t take much time, but it is valuable.

So one of the biggest challenges for me as a father of a special needs child, is how do I gauge how I am parenting? Hannah is non-verbal, does not have appreciable comprehension, is globally delayed..so she can’t really behave in any way that I can “parent”. That was my mindset in the beginning…I was useless. I had all this Fatherly role modeling, and wisdom I was supposed to be imparting to my child…but I couldn’t do that. The big picture I was missing was that my job as a father isn’t to raise a “mini me” or the next president of the United States. My job and role as a father is to love unconditionally, give selflessly, and be strong to take care of my child through every trial and tribulation. That’s what a good Father is. A father makes sacrifices to see his children happy. A father shares in every joyful moment, and every heartbreak of their child crying with them. A father balances the mother, and is strong and supportive, and most of all a father is present.

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