Introduction
We are in the second half of our ten part series and from here on out the articles may seem more emotional since they speak upon the most personal and difficult aspects of raising a special-needs child. Perhaps you readers have noticed that while these articles have been touching upon the overall family aspects of raising special-needs children, Alicia (the mother) has been the one who has been opening up and doing the heavy lifting so to speak. The voice of the father, siblings and extended family have been absent.
This post delves into the profound experiences of fathers of kids with disabilities, shedding light on their unique challenges and triumphs. Jason, a devoted father, shares his touching story about helping to raise his daughter, Brooke. His story serves as an example of the broader experiences faced by many fathers in similar situations. Hopefully it will also make our readers think differently about them and understand them as people who face often “unspoken” challenges.
Through Jason’s story, we aim to highlight the struggles, resilience, commitment, and love that characterize the lives of these fathers. Whether you are a father walking a similar path, or just a person seeking to understand it better others better, we hope his words give you insight into their complicated lives.
Mr. Military Mom Time
The birth of Brooke was a moment of immense joy for Jason because she survived against the odds. She was a fighter and that brought him great pride. However, just a few days before her birth, Jason unexpectedly lost his job thrusting the family into financial insecurity. This left Jason grappling with the reality of not being able to provide for his family in the way he had always envisioned. Jason shares, “After the company I worked for went under, I did a few small construction jobs on the side for friends, and honestly I think a lot of it was ‘charity’ work because they knew we had two kids and Brooke had been born with health issues. I was grateful and would jump on any chance to make a little money, but it was 6 or 7 months before I could find a full-time job. So it was very stressful time for me.”
Once Alicia’s maternity leave ended she had to go back to work and Jason became the stay at home parent to two kids under two years old. He says, “So since Alicia had to go back to work, my immediate instinct was to just make life for her, when she was able to be home, as smooth as possible. I felt: at least I can control this one thing.” Before moving back to North Carolina, Jason was a civil engineer with the military. His father was also in the military so his entire life he was used to routine. For someone used to order, discipline, and a strict schedule, the chaotic yet rewarding world of parenting was quite the adjustment.
Being thrust into this challenging situation, Jason decided that running a household couldn’t be all that different from “running a tight ship” so to speak. He says, “I like routine—it’s my military background—so in my mind I just figured I would get a routine going for myself. I would get up early, really early and do cleaning and any laundry first. Then I would decide what was going to be for dinner so I would set on the crockpot or something. I had all of this done before the kids even got up. Then I would get them bathed, dressed and fed and it was still well before say 9:00 AM.” Alicia pipes in, “I was not joking when I told you that it was like a dream. He had things so organized, way better than I do, that when I came home it was just so nice to not have house stuff to worry about.”
Jason embraced caregiving with the same dedication and commitment he would have applied to any “real” job. Ultimately, this allowed Jason to develop a deeper bond with Brooke and understand her needs more intimately. It also highlighted the resilience and adaptability that fathers of special needs children often must exhibit—even if they like routine, you have to know that things will go awry. “But eventually I got stir crazy,” he says, “and also frustrated like I was letting my family down still or something. No one made me feel like that, everyone knew how bad the economy was (this was during the financial crisis of 2008). But I still felt that way so I was really happy to get a full time job again.”
Back to Work – New Beginnings
Jason first found work at a company doing commercial window installation. He recalls, “I would work as many hours as I could because we needed the money. But I was away from home a lot. That includes weeks at a time on far away or out of state jobs. I’d come home Saturday/Sunday and then have to leave again. It wasn’t all the time, but it was putting a strain on our marriage and I couldn’t help Alicia with anything” Likewise, Alicia was thrust into an almost single-mom situation having to handle the day and night shifts at home (and now without her Mr. Mom Maid!). She adds, “On one hand we were so thankful because as time went on and Brooke got worse, the bills got worse too. But I missed Jason and I missed having another adult in the house to carry the load.”
But God had other plans in mind for the family. Jason once again lost his job. He recalls, “I was let go from that job and in hindsight it was the biggest blessing it ever could have been. At the time I did not see it that way though.” However, a chance encounter at his local church became a pivotal moment in his life and his family’s future. A compassionate church member, Robert, aware of Jason’s situation, extended a lifeline in the form of an entry-level job opportunity in a new trade. “Robert came our old church and worked at Belt Power. He came up and said he had a job opportunity for me. I was very hesitant because I had done construction my whole life—that was my comfort zone, all I knew. I went down to look at the shop to see what I would be doing. I was interested and it seemed challenging and so I took the job thinking I would give it a chance and if it didn’t work out I would look for something else. Well, that was in 2010 and I have been there ever since.”
This offer was more than just a job; it was a beacon of hope for Jason. It provided a much-needed financial relief and instilled a sense of pride and purpose. The role, though starting at the bottom rung, promised growth and learning opportunities that Jason embraced wholeheartedly. More importantly, even though they didn’t know it at the time—the company was run by some of the most kind-hearted people they’ve ever met. Jason remarks, “That company has bent over backwards for me—they knew Brooklyn and her health issues. When she got really sick and we had to be at the hospital honestly weeks at a time, even if I didn’t have PTO they still let me go and paid me. At one point I was 130-140 hours in the hole with PTO but they knew I would always work it off later. And if I got a phone call at work that Brooke was doing bad, it didn’t matter they said ‘Go’…No questions asked. You don’t find that in companies nowadays. They treated us like family. They would even allow Alicia and Brooke to stop by for lunch once a week when she wasn’t in the hospital.
Perhaps it was Brooke’s fighting spirit that gave him the motivation, but it was his own tenacity after that. Embracing this opportunity, Jason poured his energy into mastering his new trade. His diligence and commitment did not go unnoticed, and over time, he advanced within the company. This upward mobility brought financial stability, which in turn reduced the stress and anxiety that had once permeated the young couple’s life. That job offer and Jason’s willingness to take a chance on himself marked a turning point, transforming his family’s future. Jason adds, “I mean when we were at the hospital for weeks at a time, my boss would load up his mower and come over and mow our grass. I would always give him a hard time because he cut it so short. He put his mower on the lowest setting and just shaved the grass. I would see him and give him a hard time by saying, ‘What did you do to my lawn, man?’, but he knew…he knew how much that meant to me. After she passed away the company did a fundraiser and whatever my coworkers would donate the company matched 100%. They had offered us special insurcance even with pre-existing conditions so her funeral would be fully paid. But the money they donated helped us pay all of the outstanding bills after she had passed. So if there are days I don’t want to get up and go to work, I know what those people did for me and for my family. I would never let them down.”
Emotional Tolls and Protective Instincts
Being a father of a child with disabilities brings unique emotional challenges—the constant fear and panicked hospital runs are intense because life-and-death situations never become easy even if they do become routine. Jason, like many fathers of kids with disabilities, found himself grappling with the pressure to remain the pillar of strength as things around the family frequently seemed to be crumbling. Maybe it was his military background, or perhaps just the societal norm that men should be stoic and resilient, but Jason never told Alicia the stress he was under emotionally. He says, “Looking back now, being in my 40s, I just didn’t want to talk about it. And this is the first time that even Alicia is hearing this. I always felt like it was my job to make it seem like everything was OK. Was I upset? Of course, but I couldn’t let it show. Alicia was always very distraught about it and I would say, ‘no everything happens for a reason’. I really don’t let people know how stressful it was and how overwhelmed I felt at times.”
One can bottle up all of that pressure, but it has to be released somehow—and sometimes that way is an explosion. Fathers of kids with disabilities often experience an intensified sense of protectiveness towards their children. This heightened protective instinct is particularly pronounced when it comes to ensuring their child’s well-being when they feel as if people aren’t listening to them. Alicia and Jason begin to recall a time when Jason exploded in rage at a doctor who he believed wasn’t listening to them. He recalls, “I was sitting down on the couch (in the hospital room) and listening to everything but I didn’t understand all the medical terms. I had to ask Alicia usually because she had already learned so much and knew this whole new language basically of these medical words. This one doctor was so arrogant and really all he did was just sent residents and interns in. He wouldn’t come by and look at her himself. But Brooke was getting worse, her color, her breathing, everything…we knew it. So I see that doctor outside the room looking at her chart and he starts to walk away. I was getting “ready to go” (fight)…I couldn’t compartmentalize. I yelled out so loud, “How about you come lay eyes on her instead of walking away?” Alicia recalls she was terrified that Jason was going to attack the doctor and get thrown out of the hospital. She says, “I honestly thought security would come. I could see the red in his face and oh my word I was like, ‘Calm down, calm down because if you get thrown out they won’t let you come back and then you won’t be able to see Brooke’ It was a crazy few minutes. I am laughing now but oh I was not laughing then!” Ultimately, the family called a meeting with the head of the ICU and a hospital administrator to discuss the incident and the family was successful in their battle to get more attentive care from the attending physicians. Jason adds, “We were advocating for her because she can’t say ‘something is wrong’ for herself. I know other parents have had that happen to them as well. Looking back, with doctors, I think they see so many terrible things they can’t ever let themselves get emotional, but to parents like me they were seeming cold. But I made him come inside and see what was actually going on and I would do it again because Brooke needed someone to fight for her.”
That incident is a poignant illustration of the innate instinct of parents to go to great lengths for their special-needs child. Jason’s protectiveness was considerably amplified due to Brooke being so vulnerable. We hope this section of the story has underscored that acknowledging the emotional pressures fathers face is crucial. Fathers like Jason need to know that it is okay to seek support and express their emotions. Breaking the stigma around male “vulnerability” can help fathers of children with special needs navigate their emotions more healthily and effectively, which ultimately benefits not just themselves but their entire family. As Jason aptly puts it, “I would tell other fathers, you don’t have to hide all your emotions, if you don’t find ways to talk to people it will eat you up inside. You don’t have to be a manly man if something is eating you up. It doesn’t have to be your wife necessarily, but another guy friend. My coworkers were there for me. I just didn’t want Alicia to ever know I was upset. But maybe if I had talked to her more as well it would have made things so much easier.”
The journey of fathers with special-needs children is marked by a constant vigilance—always watchful, on-guard, protective. Yet keeping all of their emotions to themselves it is a ticking time bomb that causes not just shouting matches but marital pressure as well…..
Becoming a Better Spouse and Father
The daily demands of caring for a child with disabilities require a level of teamwork and communication that can either strengthen the marital bond or break it entirely. Jason and Alicia had to navigate complex emotional highs and lows, advocate fiercely for their child’s needs, and find joy in small victories. Thankful with support and faith, Jason and Alicia’s marriage survived, but it’s not uncommon that the pressure of raising a special-needs child is too much for a couple to handle and their marriage implodes. When asked about this, Jason answers with honesty, “A lot of times going through Brooke the stress of everything, maybe our personalities. There were fights. And I would say things that came out wrong. A lot of marriages fail just in general, but I’m one that likes to argue and get it over with and move on. But there is all the added stresses with a disabled kid. It’s SO much and it runs through your head constantly. Also, you never get that couple time. You just don’t get time alone, even a night away. We relied so much on help from others that it felt selfish even thinking about asking if we could ask for time alone.”
Jason and Alicia have gone through the storm and came out to sunnier times. This shared journey has fostered a deeper love and mutual respect between them. Today, they face challenges with a united front because for them they’ve gotten through the toughest of times. For Jason, the challenges he faced in parenting his daughter with disabilities have ultimately shaped him into a more empathetic and resilient individual. His military strictness has somewhat relaxed and he tries to go with the flow as best he can. He comments, “But if I could tell other couples, please talk to one another, pray together so you can stay together. In the long run, whatever your fighting about, it doesn’t even matter. It is totally out of your control, but we know how stressful it is. We get it.” Alicia gleefully chimes in, “Love is always a choice! I always say that.” So couples, please make the choice to talk, to love to stick together—you can do it.
Brooke’s Round Up
With Brooke’s Round Up approaching, we wanted to see if Jason had any special memories or words he would like to share. He responded first with a lovely and heartwarming story about the very first Brooke’s Round Up that occurred just months after Brooke had passed away. It was on that day that he was helping with the horse-riding event and he encountered a special-needs child named Caitlin. He recalls, “Brookes Round Up is a very special thing because I even get teary eyed thinking about it.” We pause for a moment to give him time. He continues on, “Not to be selfish but that event does so much for me. I don’t know how to express it, but it means probably just as much to me as the kids or the other families. That first year there was this girl, Caitlin and I was lifting her up on a horse. And I got up there too, because we ride with the kids that need extra support. And I held her…And to me it was just like holding my Brooklyn. And after a while I had to go stand behind the barn and I lost it. I mean I just broke down. Tears streaming. Sobbing because…well she made the same noises as Brooke did, you know what I mean? It was like I had Brooke back in that moment. Or maybe it was a way for her to come back in a way so I could let go? I was just…it changed me.”
Jason’s journey as one of the dedicated fathers of a child with disabilities has been profoundly influenced by his unwavering faith in God. This spiritual foundation provided him with a sense of purpose and resilience, allowing his to fight for his family, fight for his marriage, and fight for his future. When asked if he speaks to other dads at the event or has words of wisdom to offer he says, “I don’t have to open up to anyone in particular or say something to a dad at Brooke’s Round Up – its this nod I give…the disabled child dad nod,” everyone laughs at that, “Dads, I give you the nod because I know where you’re at. I want parents to know you’re not the only one going through that situation. You do struggle—and this event and these posts are to let other families know they are not alone. Everything is in God’s control—not saying it’s going to be any easier. It’s not. But He will take care of it.”
In conclusion, men rely on expressing love to their fellow man in a different way. They usually won’t say it outright; in fact its easier to joke than admit their feelings or vulnerabilities. For men—it’s actions, not words and non-verbal communication takes precedence. As they become close-knit the handshakes get firmer and the “nods” replace casual pleasantries. So women, be kind to them and ask them how they are feeling—because they might need someone to ask. Male readers, be kind to your brothers in this world because they need your support—you need each other’s support. Be a man of action and give that nod; because remember, when tough times come a man might not say “I love you”, but they’ll show up with a lawnmower and cut your grass when they know you can’t do it yourself.
***After speaking with Jason, Nathan arrived. (His story will be told next week.) He sat down to answer a few questions. A smart and sensitive young man, he started to respond—choosing his words carefully. Suddenly his parents could sense his trepidation. Jason put his hand on Alicia’s and they assured him almost in unison with phrases such as, “You can say what you feel—it’s okay—tell your story, son.” For the first time Alicia had insight into what Jason had been feeling; and for the first time they both were ready to honestly talk to their son.