The Good, The Bad, and The Messy: Adventures in Raising a Special Needs Child
Introduction
We hope that everyone had an amazing holiday weekend full of celebrations with their families. Now, we are back sharing Brooke’s story as her the annual “Brooke’s Round Up” approaches just around the bend. After a quick “rest stop”, we continue on this road-trip through her life.
This post is named, “The Good, The Bad and The Messy” because raising a child with special needs is an experience that often deviates from traditional parenting narrative. Typical parents change diapers, but changing a catheter is a little more….unique. Likewise dinner time with baby-food and Cheerios doesn’t have the same complexities as a feeding tube. Therefore, in this this post, we’ll delve into not only the beautiful moments and extra challenges, but also the moments of hilarity that come with raising a special needs child.
While we will close this article with the fun times, first we must approach both the good and the bad. As we touched upon briefly before, when raising a child with special needs, moments of profound joy contrast with instances of overwhelming frustration or fear. Likewise, small victories seem Olympian in their nature. Milestones that might seem trivial to others become monumental achievements for special needs children and their families. “Baby’s First Steps” memories may be replaced by “Baby’s First Wheelchair”. Regardless, however, every achievement serves as a beacon of hope and sources of immense pride for those families. They inspire resilience and strength. Contrarily, minor setbacks can seem catastrophic as new parents of a special-needs child get used to the unique behaviors and medical needs of their loved one. New parents of a “normal” child may get frightened over a fever, but depending on the circumstances a fever in a special-needs child can be deadly.
Those differences are what make the journey of raising a special needs child so different because they are marked by unpredictability. One may have the map charted out, but detours, roadblocks and unplanned pit stops occur. Unexpected situations frequently arise that require quick thinking and immense patience from parents and caregivers. Parents and caregivers frequently find themselves navigating uncharted territories, learning, and adapting on the go. There is no medical school training; they learn from the school of hard knocks. Raising a special needs child teaches us that sometimes you have to “roll with the punches”, let things slide, accept imperfection, be willing to take chances and more often that not live on Faith.
However, many scenarios, while challenging, also present opportunities for personal growth and deeper familial bonds. There is a remarkable beauty and reward that comes from witnessing the unique progress not only the special-needs individual, but in the caregiver as well. It’s not always pretty; it’s not always fun; but special-needs children teach us to survive and thrive as best that we can. Furthermore, the ability to adapt and find humor in these moments becomes a vital coping mechanism, allowing families to persevere through difficult times. By sharing stories that encapsulate the good, the bad, and the messy, we hope to shed light on the incredible strength and joy that can be found in all families who have lived with and loved on special-needs children.
The Good: Sharing The Love
Once again we find ourselves interviewing Alicia in the kitchen of her parents’ house. There always seems to be a day or special occasion to celebrate and bring the family and friends together. Jason and Alicia’s character is most evident by their generous outpouring of love and an ability to create fun times. Today on another terribly hot and humid Carolina day, Alicia will be making homemade ice cream.
Raising a special needs child, like Brooke, brings a unique set of rewards and heartwarming moments that often go unnoticed in the hustle and bustle of everyday life. As aforementioned, Brooke not only had a brother she also had three male cousins who loved to dote on her. Alicia wanted the kids to understand from a young age that Brooke’s disability wasn’t something to be afraid of. Under her supervision, she would allow them to push Brooke’s vitamins and medicine into her TPN. Alicia recalls, “The boys would always be interested in how I took care of Brooke, as if everything was so fascinating. They thought it was just the coolest thing when I explained what her feeding line was and how it functioned. When I let them try it on their own for the first time, they felt so grown-up and were beaming with pride.” In the adjoining living room those same “boys”, now young men, are sitting around chatting as Alicia shouts out, “Some one of y’all got to go get me more ice.” They all jump up to volunteer because they want an excuse to go for a cruise to town. They are grown and strong now, and if Brooke was still around they would have picked her up and taken her along.
Alicia starts prepping other food as she continues to reminisce about happy memories with the boys. Brooke also had a “smart vest” which helped clear her lungs. It worked by gently squeezing and shaking her to break up some of her congestion. Alicia recalls, “She absolutely loved that thing and she would just shake and laugh. And her cousins loved watching her and so they would put it on too and it would shake them and she would laugh even harder. Soon enough all the kids would be laughing uncontrollably!” She shakes her head in happy reminiscing. Her cheeks are a rosy pink from laughter and her eyes are glistening.
The role of siblings and cousins in Brooke’s life was nothing short of extraordinary. Alicia notes, “They went above and beyond to ensure she felt loved and included in all family activities. They stood up for her and protected her in such a remarkable way. I know their interactions with Brooke made her feel cherished and loved because she recognized them and beamed when they were around. In a way, she also changed their lives for the better I think. To this day, all of those boys show very advanced levels of compassion, kindness and empathy. They are kind young men and I am so proud of them.”
Her parents dog, Harley, is scraping at the front door wanting to be let in to the cool air conditioning. This prompts Alicia to mention of the most unexpected sources of joy and assistance they had with Brooke—their family pet. Alicia recalls, “This dog did not have any specialized training; it wasn’t a “service dog”. But somehow it learned, on its own, when Brooke was having a seizure. It would run up to us barking to alert us that something was wrong; it was amazing.” Other times the dog just wanted to provide Brooke comfort and companionship. Whether it was gentle nudge to encourage her to be alert or a quiet presence beside her during difficult times, the dog was an indispensable part of Brooke’s support system.
These few anecdotes illuminate how family bonds are strengthened through shared experiences and mutual support. In her short time, the challenges she faced also helped the family as a whole to grow and be witness to the power of love. As we will discuss next, the journey of raising a special needs child will be filled with hard times, but it is also full of instances of pure joy. This unfettered and unconditional love enriches the lives of everyone involved. Let us not forget that.
The Bad: Facing Social Stigma
Unfortunately, navigating the “real world” and being out in public with a special needs child often entails encountering ignorance and stigma. This stigma is often rooted in a lack of awareness and understanding about special needs conditions—it breeds irrational fears and misconceptions. Often times the worst perpetrators of this are not children but rather adults. Alicia recalls, “People,not just children who were naturally interested, but adults would stare at Brooke when I was in the grocery store. I would catch them out of the corner of my eye and in the beginning I felt so self-conscious or uncomfortable. Like, I’m sorry my child is different than yours, but my love isn’t different; I think she’s unique and wonderful just like you feel about your kids.”
Alicia has moved on to prepping vegetables for the dinner. She has a combination all-in-one mandolin and dicer. As she delves further into opening up, perhaps this wasn’t the best time to ask her. Her rosy cheeks have turned to red and her brow has furrowed. The slices become more aggressive. Yet we pushed on and asked her to explain in more detail. Alicia shared, ““Unfortunately there were some parents that were just adamant that their kids not get close to Brooke. On one hand, some parents were just scared that it would bother us that their kids were asking questions. The children, with all their innocence, just wanted to know why Brooke was in a chair. You know me, you know I will talk to anybody. We always explained to them that God just made Brooklyn a little differently and so she needed a chair to walk instead of her legs because unfortunately they weren’t working. The children always understood when we would take the time to explain it to them, but the parents would act all nervous. However, there were also another group of parents that never really said anything—but I know what it was. It’s as if they felt that if their kid got too close, they could “catch” whatever Brooke had. It’s so irrational; it’s so crazy. I’d be lying if I said it doesn’t still make me just a tiny bit angry thinking about those times. But in a way, I guess it’s understandable. I mean we as parents want to protect our kids. They didn’t know any better, they hadn’t had an experience in their family with someone who was special-needs. It definitely wasn’t easy when I encountered those types of people, but eventually I learned just to ignore them.” The methodical rhythm of the mandolin provided an outlet to power through. At the conclusion, every tomato in the house had been sliced—hundreds of slices when a few dozen would have sufficed.
Many parents with a special needs child share similar experiences of nervousness and avoidance from other parents and community members. These reactions can manifest in various ways, from awkward silences and sidelong glances to outright avoidance and exclusion from social activities. However, if you are reading this and have experienced something similar with your loved one, please know that you are not alone. Unfortunately, the social stigma around special needs individuals still persists, which reveals a broader societal issue where avoidance is the easier route rather than taking time to converse and learn. The challenge lies not just in educating other children (who, again, are usually very receptive), but also in addressing the preconceptions held by adults, who play a crucial role in influencing their children’s perceptions and behaviors.
Alicia adds, “I’m hopeful that this outreach can tell other parents, ‘Oh yes we had those moments too and they’re hard but they are going to happen and so it’s about letting go of anger and just moving on. And sometimes you will meet someone who is just so kind and will hug and love your kid in public—that’s what Brooke’s Round Up is all about. That’s the greater conversation about why we started this event so long ago. That first hayride with Brooke before she passed away, to see the fear from other people when her machine was beeping from her laughter, until they realized she was having the time of her life—that change in their understanding is just as much a part of why we do this event. It took a long time to realize that it’s not just about a day for the children—it’s a family thing and that includes the parents because my gosh I was one of them.”
When you attend Brooke’s Round Up you will notice that no one is scared of your child and no one judges your child. It is an atmosphere of love and acceptance. And also, if you need ten minutes of alone time to walk around and get a little peace and quiet—we have people who will care and love for your child just like you do. And if you, reader, happened upon this article at some other time—let this be a reminder to be kind and loving and make the extra effort to hug and welcome special-needs people and their families. It means more than you know.
The Messy: Navigating Mishaps and Mistakes
When raising a special needs child, messy situations and mistakes are an inevitable part of the journey. These moments, bring a unique blend of panic and humor that can provide valuable lessons in adaptability and resilience. The family’s messy experiences with Brooke highlight how even the best-laid plans can go awry, and that maintaining a positive attitude and laughing at the mess is a lot more helpful for your sanity than getting angry. It’s a joy to write this part of the story because recalling the “Good Times” was nice, recalling the “Bad Times” was painful, but recalling the “Messy Times” is a lot of fun. Alicia’s demeanor changes too when recalling them. She is back to smiling and the the vegetable carnage has stopped.
The first particularly memorable mishap occurred when Brooke’s feeding tube was first inserted and the nurse was showing Alicia what she would have to do. Alicia beams when recalling, “So I feel real nervous plugging in this tube but at the same time I wanted to act confident and seem like: ‘I handle all this…I got this….I’m tough…this ain’t no problem…I got your back Brooke’. So I put the tube in and am feeling a little accomplished and proud of myself when all of a sudden, bright pink liquid shot ALL over me—and I do mean everywhere—in my face, on my clothes, in my hair…everywhere. The nurse just laughed and said, ‘You forgot to clamp it! Don’t worry I let everyone make that mistake because I know they won’t make it twice!’ And she was absolutely right…sure enough I never forgot the clamp again! And where I work now, I let other people make that same mistake because it is a lesson you only need to have ONCE. Each time too, I remember my moment and I remember Brooke and it really makes me smile.”
That wasn’t to say there weren’t more mishaps with the feeding tube—in fact it was a fairly consistent source of manic merriment and mayhem. One time during family photos at the beach, Brooke’s Uncle Billy was holding her for pictures and a situation “popped up” (or “out” rather). Alicia walks into the living room of her parent’s house to point to a particular photo. Her mom and dad have framed photos of the family all over the place—commemorating milestones and special occasions. Alicia shows us a beautiful photo of the whole family at the beach, Brooke’s favorite place, and comments, “So here we are standing on the beach and it was around the time that families really got into the trend of coordinating outfits to make the family photo look nice,” (keep in mind readers, this is the pre-Instagram era which was more like a DIY Sears family photo-op), “Poor Billy he’s holding Brooke and all of a sudden he was terribly wet—his whole shirt was ruined. He thought that Brooke had wet herself but her feeding tube port button had fallen out and she was leaking “belly juice”! I don’t know if it was good news or bad news to him at that point. Like, what would be less terrible! He is like the shyest, kindest guy and that look on his face I will never ever forget it!” I spot Alicia looking down at the picture, quiet and serene for a just moment. I ask her about when the photo was taken—it’s a beautiful photo. She says, “Well this was right before, but I wish it had been taken afterwards because then the smiles would have been more genuine. When I look at this picture—that’s how I remember the day. Real laughter, real smiles—nothing staged.”
Poor Billy was also involved in another one of the greatest hits (or more aptly…misses) of the feeding tube. Alicia recalls, “So Billy is with me and I’m getting Brooke out of her car-seat. I was probably just talking as usual and got distracted and when I lifted her out, that feeding tube got caught on the seat-belt and popped right out. Billy had an absolute look of panic on his face and said, ‘What are we going to do now?!’ I mean his face was, oh goodness I can’t even describe how terrified he looked. And I looked him right in the eye and said, ‘Well we’re gonna wash it out and stick it back in there because these babies cost $500 and insurance only gives us two a year!’ And we did just that—and Brooke was good to go.”
Feeling really ambitious and open she continues on, “You want to hear honesty? You know the car that Nathan drives now? Well numerous times I had to change Brooke’s catheter in the back that SUV. I’ll admit it, because I want to be 100% totally honest and tell other parents ‘You are not alone’. There were spills, there were messes and I’m going to say it, I often found bags of pee I had forgotten back there. I did. I’m not ashamed, other parents going through that shouldn’t be ashamed. It happens—it really does. When I think back of how stressed I would get over things in the beginning, well after a while you just accept what happens and move on. Nothing good will come out of stressing about it”. The front door slams; the boys have returned with the ice—once again they came through for their Aunt Alicia.
We hope these stories illustrated that mishaps and messes (which will happen in the most inconvenient of times) can be navigated with humor and adaptability. Some of Brooke’s messes and how her family reacted to them serve as a reminder that flexibility, a positive outlook and not taking things too seriously are essential when caring for a special needs child. By embracing the messy and unpredictable aspects of life, families can find strength and joy in the midst of challenges. We’ve learned that the messiest of times can create the most cherished memories.
Conclusion: Embracing the Journey
Raising a special needs child is an intricate journey, replete with good, bad, and messy moments. Embracing each of those moments, no matter how difficult, with faith in God and His plan is essential. Every mishap offers a lesson—every struggle a chance for growth. Each experience, whether it is filled with joy or laden with challenges, provides an opportunity not only to learn but also to love. It’s how we react to the circumstances in front of us that determines how we will remember those trials. Genuine love, caring, and generosity is paramount. Jason pops into the kitchen, “Alicia, I’m done on the grill; when are you ready?” She responds, “I’m good to go darlin’. Let’s do it.” Dinner is ready and everyone is exciting to eat. I stand to go outside and join the family, but briefly I look over at the living room when a final thought arises: “Will you live your life in the staged photo—or rather, in the moment after?” I say after. So in Alicia’s words, “Let’s do it.”