Growing Up as the Sibling of a Special Needs Child: Nathan and Brooke’s Story
Introduction: The Unique Bond Between Siblings
*Disclaimer: At the time of this writing, Nathan is seventeen years old, a minor. Therefore we ask our readers to be exceedingly respectful of his thoughts and words. Although he bravely decided to share some of his experience, he still deserves privacy on this matter.
Throughout the Bible there are numerous stories of siblings—stolen and lost birthrights, betrayal, and jealousy abound. From the first tumultuous and tragic ending between Cain and Abel to the final mention of Jesus’s own blood half-brothers who were worried about Jesus seeming like a crazy person. Moses relied on his brother Aaron because he was insecure about his speech, while Joseph’s brothers sold him into slavery out of jealousy. Those and many more of course are all found in the Old Testament. Yet one could argue that perhaps there is no sibling story in the Bible more controversial than the story of the Prodigal Son that Jesus shared in the New Testament.
For many people who have had strenuous relationships with their siblings and parents, that story is a source of anger, frustration, despair and confusion. Those siblings may feel slighted (whether justly or unjustly) by their parents’ seemingly favoritism of a more needy or more talented sibling. The Prodigal Son Parable should be a source of wisdom and happiness for siblings after studying the real message of remorse and redemption that it teaches. However, unfortunately it is often misunderstood and rather than bringing peace, just the mere mention of the term “Prodigal Son” causes some siblings to go into a fit of rage and become filled with a white hot anger. They immediately perceive some sort of injustice and unfairness and take that story as a personal slap in the face for being a responsible and dedicated child while their sibling can live their life filled with drama, excess and mistakes and yet still receive love from their parents. Perhaps in part that is because in our modern times, the term “Prodigal Son” has morphed into a catch-all, flippant term of derision, resentment and yes…jealousy. In a lot of people’s minds “Prodigal Son” is just another catchphrase on sibling rivalry such “my parent’s favorite child” or “the golden child”.
Now let’s be clear, in no way shape or form—let’s repeat that once more for extreme clarity—in NO way is this to insinuate a special-needs child is guilty of squandering their family’s fortune like in the Prodigal Son in the parable, nor do they have to come to their parents and ask for forgiveness. In fact the opposite is true, special-needs children are the most needy of all of society which we are called to protect with the greatest ferocity. However, we must acknowledge that if one sibling is disabled, by absolute and unavoidable necessity their continued battle against medical problems requires a disproportionate amount of parents’ time, money and attention. That does and will have an affect on the life of a healthy sibling.
A healthy sibling (often a child) is also in need of protection, attention and love. Whether the healthy child is younger or older than the special-needs sibling makes no difference in the typical spat between two children vying for their parents’ love and attention. Both children will be loved equally by the parents, but hands down the special-needs child is going to win in the attention arena. It’s a fact because they need it more; thus the burden falls on the healthy child. As parents you must realize that depending on the age of the healthy child and the way you have handled things, do they really understand the difference between love and attention?
Therefore, in this very difficult discussion the Cockerline family is opening up about their experience because the overarching theme and message of this series has been “You are not alone” and their family wants siblings of special needs family members (whether young or old) to know that applies to them as well. Parents, you will be forced to pay more attention to a special-needs child and conversely you will at some point miss out on portions of your other child’s (or children’s) life. In reading Nathan’s story perhaps you will be given the opportunity to minimize that affect in your own family, or if time has already passed maybe you will be able to open up a dialogue with your other children and begin to heal.
Who is Nathan?
Nathan is an extremely polite young man, but as an outsider, getting to really know him is a difficult task. Watching Nathan over the course of several months at church, group outings and smaller family get-togethers has been akin to being a wildlife biologist and observing from afar something in its natural habitat without infringing on its territory too much. It has been a fascinating study in behavior and body language that leaves one pondering questions such as “What makes him tick?” and “What is he thinking about in silence?” and quite often, “Where is he going now?”.
From an observational perspective, sometimes Nathan acts like a fox—slipping in and out of places quietly, always on the move. Yet, when he is around his friends and cousins he fits seamlessly into the wolf pack. Nathan is a witty and wry young man when he finally opens up—but he is supremely reserved and slow to trust. He is kind and gentle with children as he helps guide them around vacation bible school like a shepherd dog, but fiercely strong when rough-housing in the pool with his dad, Jason. Although Nathan is now taller than Jason, he still has a good bit of weight to put on before matching his dad, but Nathan is scrappy and determined and can pursue his prey to the point of exhaustion as a lion does.
Nathan has no plans to join the corporate world—currently he helps his grandfather in the electrical trade and in the future he wants to be a diesel mechanic. However, just in case he ever applies for a corporate job and is asked the ludicrous and despised question, “If you were an animal, what animal would you be?”, perhaps in our observations we have figured it out. Nathan is a chameleon. From Webster’s Dictionary, “Chameleon” comes to us, from Greek (chamaileōn) ,a combination of “chamai” (“on the ground”) and “leōn” (“lion”) – a tribute, perhaps, to the lizard’s fearsome aspect. It is the ability of the chameleon to change colors, however, that has led to the figurative use of “chameleon” for someone or something that is quick to change.” Nathan can blend in, fit in, jump in fiercely and also disappear.
Many outsiders may mistakenly label his initial guarded demeanor as merely “shy”. While they may also jump to conclusions and label him as just “a loner”, as one peels away the layers his true character emerges. He is not quiet—rather, he is pensive. His is not shy—he is cautiously reserved. Lastly, as you learn his story here, he is not a loner—he is a survivor. His life as the healthy sibling of a special-needs child fundamentally changed who he became as a young man—in amazing ways. Like a chameleon, he has many facets and depths of color to his character, and all of them are brilliant.
It’s Okay, Tell Your Story, Son.
Nathan arrives at his grandparent’s house where we have been sitting around the pool with his parents and grandparents. This quiet get together was to gather information from them for the next several articles before the entire extended family departed for a family vacation—a cruise. He pulls up in the same SUV that Alicia used to drive which was the scene of many messy changings for Brooke when she was still alive (See Part 5 of this story). Now however, Nathan has it modified—in a time honored tradition that surpasses generational gaps—as a young man, he works hard so he has money to customize his ride. He shouts “Hey” before walking inside. Nathan spent a significant part of his childhood at his grandparents house when his parents had to be away with Brooke for weeks at a time—either in the hospital or away for her experimental therapy treatments. So he feels just as much at home there as he does at his “real’ home—a topic we will discuss at more length next week.
After a few minutes he emerges with a plate of food, sits down confidently and begins talking to all the adults about his day. Notably, he is not reporting on his day for approval or to give a timeline to justify where he has been. He appears just to be talking to friends—it’s a very interesting dynamic between “son” and “parents”. In our last post Jason, his father, had just opened up for the first time about his experience as a father of a special needs child and Alicia and he both confronted some really tough conversations on problems spouses face. Initially in the evening Jason started out uncomfortable and unsure about what to say at all.
Maybe it is the comfort of the now dark night sky compared to the glaring sun before, or perhaps it’s the mutual camaraderie as we all squish our chairs closer together under the safety of the large umbrella to wait out the drizzling rain, but at this point Jason’s behavior has done a 180 degree turn and he appears to be excited to hear what his son has to say. More likely however, his ambition has come from the catharsis of finally letting go of what has been held onto for so long. Conversely, Nathan seems like he knows what he wants to say, but there is clear trepidation in his body language and facial expressions. It isn’t because he doesn’t know what to say, but how to say it because speaking truthfully about those things (the honest things) could be hurtful to his parents. After a few moments of reassurance that he won’t be judged and they really want to understand how he feels, Alicia (at this point an expert in answering tough, personal questions) and Jason tell Nathan, “You can say what you feel—it’s okay—tell your story, son.”
Still sensing a little uneasiness we start off with a general question: “Nathan, growing up with a special needs sibling, what about that experience do you think most impacted who you are today—your behavior, your personality?”. Nathan doesn’t skip a beat and immediately responds, “I am really good at entertaining myself. I had to learn how to have fun by myself. So I have a very wide and open imagination. I’m really good at talking to myself. I have whole long conversations in my head all the time.” Maybe that’s why he is often so pensive—he is a great conversationalist but for so long he essentially lived the life of an only child so he had to rely on his own imagination.
Nathan continues on voluntarily, “Another thing. It was hard to have friends come over because well you know, I didn’t know where I was staying all the time. If Brooke was home and not at a hospital, you still didn’t know how she would be feeling so most of the time it was easier for me to just go to my friends house instead.” He continues on, “So yes, I was alone a lot. Being alone in your head, I grew up with the Xbox 360.” His Grandpa, Keith, tries to interject and say, “Well you were here with us, Nate.” Nate quickly retorts, “Yeah but you were at work 90% of the time and it was just me and…Grandma.” “Grandma” is Tonya, Alicia’s mom and she shoots Nate a glance and says sarcastically, “What do you mean ‘oh, well I was alone with Grandma?’” Everyone laughs and the tone has relaxed—finally the ice has been broken.
Next we ask Nate about being the older brother. This time Alicia makes the mistake of saying that Nathan was two years older than Brooke and he jumps in quickly to correct his mom and remind them no, he wasn’t two years older, he was just a year and a half older than Brooke. It’s a comical moment watching Alicia redo the math in her head, Jason pondering as well on their birth dates before they finally all admit that Nate was right. Again though, this is the interesting family dynamic that has been created. Nathan’s own parents thought he was older than he was; it’s a testament to how mature he is for his young age. At the same time it was a subtle but poignant moment that reaffirmed what Nathan first said: He spent a lot of his younger life in his own head. So he knows himself and knows his past more so than even his parents.
The subtle difference of mistaking his age by six months from an outside perspective wouldn’t be a big deal. But seemingly to Nathan it was—and it’s an indication that he is very aware of how old he was, how old Brooke was, and on a deeper note that he is keenly aware of the passing of time during his life with his sister in her brief life. When you lose a sibling at nine and a half years old, six months is consequential. Next Nathan blurts out something that is so brutally honest and it brings a moment of silence to the atmosphere. He says, “I was always felt like I was left out and excluded. I really felt like I was alone as a child. It wasn’t the truth. I know it wasn’t the truth. But, it was just that feeling…when you are 5 or 6 you can’t really make sense of why that is. You just don’t get it.”
That right there is the crux of the matter and the importance of listening to these siblings. If we look back several articles we can remember that Alicia once brought up the fact that in public children would generally be naturally inquisitive about Brooke in her wheelchair when they went out in public. However, the parents of those children made the situation uncomfortable because of their ignorance and fear. Children need to ask questions and to understand. As a parent of a special needs child, with everything else going on and all of the pressure you constantly face, how do you avoid making your healthy child feel alone?
The Challenge of Balancing Attention Between Siblings
When one child has special needs, the complexities of “normal” parenting multiply, making the task of balancing attention between siblings particularly demanding. So if there is one word that best encapsulates the childhood of the healthy sibling who has a special-needs sibling—it would be compromise. They have to compromise on every aspect of their lives. Compromise time, compromise attention, compromise their schedule, compromise their feelings. Often their lives is one of accommodation. Jason pipes in and says, “I mean it sounds horrible. But we missed so much stuff with Nathan. We missed half of the first part of his life. Billy (Alicia’s brother) even had to teach Nathan to swim. I wasn’t there for that. His own dad. I couldn’t do that for him.”
Nathan was only about three and a half years old before Brooke’s first real medical crises developed. From then on, there was never any certainty if he parents would be gone for long stretches of time for her care. In terms of attention and trying to clarify what he meant about feeling alone he recalls, “At first I just remember it being uncertain (Brooke’s condition) and I would go over to my grandparents or have babysitters. And after a while I got attention—too much attention. Of course I had lots of “attention” from other people, other family. But when you’re little you don’t want it from other people you want it from to your parents.”
Alicia enters the conversation and explains how they always tried to make Nathan understand what was happening if Brooke got a new machine or device, “Nathan was such a smart and helpful kid—I told you about how him and his cousins all were interested in helping us with Brooke’s medical needs. But Nathan of course being her brother he was so, so good. If Brooke needed oxygen he knew how to turn it on. He could help us get medicines when we were changing them.” As a healthy sibling, your parents want to explain to you the situation of what is happening to your special-needs sibling so that you are not afraid or unprepared if a crisis occurs. However, that “attention” is not a substitute for the one-on-one time you most likely crave. All of this is anecdotal of course, since no one here is a medical professional giving anyone advice. But common sense and really listening to people leads one to ponder: “Can what parents view as a way to keep their healthy child included in the conversation also be interpreted by the child as asking for them to have joint responsibility?” If so, could that be part of what changes the parent-child dynamic? After all, these healthy children are given partnership in care so it wouldn’t be odd for them to consider their mom and dad partners rather than parents in some ways.
On a softer note of sibling love, Alicia recalls, “The crazy thing is that Brooke would not sleep through the night, but when Nathan was there. We actually burned out our Madagascar DVD out because they watched it so much.” That is such a lovely reminder that these siblings are still just that—siblings. They are friends that share a unique bond, an unspoken love.
Lessons in Compassion, Kindness, and Strength
That same maturity and responsibility that the healthy siblings demonstrate also can extend to the greater community. Growing up with a special needs sibling often fosters traits such as compassion, kindness, and strength. A healthy sibling may be subject to teasing or cruelty from people at school. Jason recalls, “There were a few times he would come home and say something that another kid had said at school. I mean it’s normal its just kids being kids—if they don’t grow up around that they just poke fun and don’t understand the impact of what they are saying. One time Nathan was in middle school and he broke up with his little ‘girl friend’ because of something she said about another disabled kid.” Later on in elementary school Nathan participated in a “buddy system” program where they were paired with a special-needs student. Nathan recalls, “Yep I liked that. I like to think I was a great buddy. None of the other “normal” kids had nearly as much experience as me so I just helped my partner out—tried to just treat them like a normal person.”
Perhaps the most incredible story on this topic of Compassion is Nathan’s experience with a fellow classmate who after Brooke passed away also lost his sibling. He recalls, “One thing that made me remember Brooke’s passing. I remember my friend “Z” (we have edited his name to protect his privacy) when his brother passed away from cancer I knew what he was going through. More than other kids because I had gone through that myself. So my experience really helped me being a friend to him. Mostly I knew what not to do or say. Because it was stuff I know I didn’t want to hear or have people do. So I had my mom start making him breakfast sandwiches I’d bring to school. It might not make sense to others, but I knew that would help him.”
That same compassion that Nathan demonstrated to his friend Z would have a greater impact on the whole family that anyone could imagine. Nathan’s maturity and sensitivity to the needs of others was noticed by his parents. So when Nathan approached his parents about a friend of his with greater needs, they were listening. They discovered that what Nathan was asking was more than just breakfast sandwiches…
The Healing Power of New Connections: Adopting Nathan’s Friend Jonathan
In church there are two boys always sitting in the second row from the front right next to one another. From the back, they dress similar, they have similar heights and builds, and natural blonde hair peaks out of the bottoms of their baseball caps. The only noticeable difference is one always wears their cap backwards and the other facing front. When they stand next to one another with their light complexion, bright eyes and truly compatible demeanor you would instantly think they were brothers. They are now—but they weren’t always.
After Brooke passed away, Nathan was struggling with a loss. Alicia recalls, “It had a bigger effect on him than we even recognized at first. I could see him retreat even further and further into himself. So much of his childhood was revolved around her—that’s just how it was. But she was his sister no matter what and he lost that—he lost his friend. We were dealing with loss of a child—everyone was dealing with loss—and there was a void. And I don’t know how God worked this all out but He did because He sent us something to rebuild our family. Not replace Brooke ever I mean, but help us grow and heal.”
Many years later, in a lovely twist of Divine intervention, pensive and thoughtful Nathan found himself in a conversation with a slightly older kid at church named Jonathan. At this point Jason and Alicia were leading up the youth program there and Nathan and Jonathan quickly became friends. Jonathan was in a transitory point of his life and likewise was looking for a deeper connection with people in the community. For years, Nathan was the one who had been planting the seed in his parent’s mind that the family should foster or adopt another child. Miraculously they were able to do that with Jonathan. After a few years the family understood that these two young men had a unique camaraderie and were meant to be brothers. At first he lived with them for a few years, but now he has officially been adopted as their son and Nathan’s brother.. Nathan recalls, “We’ve known Jonathan a long time. It’s like he’s been in my life for most of our life. It feels like he filled that void. I don’t feel like he’s older than me—like I was the older brother to Brooke and I felt that. With Johnny though it’s just a sibling thing where we both look after one another the same.”
When asked how Jonathan helped shape his character now as a young man, Nathan responds, “Without Johnny I would have stayed in that lone, independent phase. I wouldn’t have gotten into sports—I’d probably be out of shape like you Dad.” Everyone laughs, but don’t take that comment too lightly, the lion side of Nathan might still be scheming how to beat his dad easier in the pool. Nathan continues, “But Johnny got me in football, he gave me someone to talk to. I spent so much time not feeling like I wanted to talk to anyone, but he came and I had someone. I know he thinks that my family did a lot for him but…he should know what he did for me. He’s my brother.”
When Jason and Alicia decided to adopt Nathan’s friend, Jonathan, he brought the family a beautiful gift—the ability to love someone else and be loved once again in return.
Conclusion: The Resilience of Siblings of Special Needs Children
As we finish up our conversation with Nathan on his experience, once again (twice in one night), Jason and Alicia have faced topics that previously were unspoken. As parents of a special-needs child with other “normal” children at one point you will come to terms with the consequences of their upbringing. It fundamentally changes the power dynamic of the family and it changes your healthy child’s life. You have asked a child to be strong and independent and now that they are—you must honor the person that they have become. Nathan sums it up the best when he comments on what his transition was like as “an only child” after Brooke passed away. He says, “I know when Brooke passed, then they had to mourn which I understand. So they did that for a while, but after a while they were trying to move on little and get back to being my parent. Well, I was more used to being independent because when I went to my grandparents 90% of the time I didn’t have rules. So you get used to doing whatever you like. But then your parents come and start telling you to do things and you think wait a minute, it wasn’t like this before.”
Luckily Nathan had a great extended support system and he was raised around people who loved and cared for him, instilling great values and morals. He didn’t rebel or turn to dangerous habits, but that is a risk if you are not speaking to your children. When asked in hindsight if he has anything he would say to parents who have a similar situation as his parents did, Nathan says, “I know you need to be 24/7 paying attention to your special needs kids. I get that. But for your other kids, you can’t always forget them. And sometimes they might turn out to be people that just want to just be alone. Or, they can come off as rude because they could be guarded. I’m not like that, but I was quiet for a long time. I’d say speak to them, really just talk… but listen more.”
The advice he gives to other siblings is a little more succinct, but I suspect since the experience is so unique that they will understand his statement better than any of us else could. To them he says, “I would say to another sibling—it’s just…hard for what your parents are going through. Basically, like you and I would know better than taking a fork to an outlet but your special needs sibling wouldn’t. So that’s that.”
We’ve now come to the end so let’s look back at the prodigal son story. When there’s a family raising a special-needs child, who really is the Prodigal Son? Who is the one who may feel remorse over lost years and comes back seeking reconciliation? I think we now know. It’s not the special-needs child themselves of course. It’s not the healthy child—they also are blameless. In a massive twist of roles, that leaves us with only one shocking option—it is the parents. The greatest, most beautiful part of that Parable is that the party who realizes the missed opportunities with his family, came back wanted to set things right. It was only after confronting what had transpired that he was welcomed back with open and loving arms. On that note, Jason says it best, “Now we almost are over-spoiling them (Nathan and Jonathan), we can over-do it because we want to make up for lost time, lost memories. In reality if your kid knows you love them, you don’t need to. But there is…I guess a deep rooted feeling of guilt that I haven’t maybe acknowledged until now.” Nathan quips back, “Yeah you can over do it. I don’t need that much attention.” But randomly he says, “Hey mom, has my new hat come yet? I need it before the cruise!” So I supposed Nathan still needs his parents for something after all. And whether that little chameleon will admit it or not, it’s likely more than just to track online deliveries. After all, he will always be their son even because of the dynamics they are also friends.