Some time ago, I wrote an article about our children and what siblings mean to them across all phases of their growth and development. There is no question that today, Kendall has developed more quickly due to the presence and interaction that her siblings provide her on a daily basis. Some of the activity she’s displayed by mimicking her siblings is awesome and incredible; other displays not so much. But in the end, we can account for some of Kendall’s great achievements on behalf of her close buddies that she roams the halls with day in and day out.
But as Kendall gets older, there is another side of the story that unfolds. The sibling effect brings challenges from a parental point of view, playing a significant role on our other children. What was so wonderful to witness the first few years of her life, has posed a great challenge to us as parents; ultimately reflecting the development of our other kids. We are beginning to observe how other children’s lives are impacted with the everyday presence of a special needs child. Obviously, we’re not alone with this dilemma by being a parent of a WHS child. All parents of special needs children will face similar issues that we do at some point or another. Although we try our hardest to be awesome parents, we sometimes break down and need to really think hard about how our situation has changed our lives as a whole. The sibling effect can be great, but will at times, mirror a polar opposite effect from the negative side. We have recently thought quite a bit about what Kendall’s impact is from the perspective of our other children.
Our wolf-hirschhorn syndrome children need LOTS of attention in so many ways. Whether it’s medical needs, feedings, emotional breakdowns, potty time or discipline, the concentration of parental effort on our special children is at times taxing. We often ask ourselves “is it really fair to the other kids?” ALL kids want to be the center of attention, and with Kendall in the mix, we are hard-pressed to isolate collective focus on another child. What does this mean long-term to our other kids? What do WE miss out by being so collectively involved in the care and attention required by Kendall? It is a very difficult thing to swallow at times, with loads of guilt swirling around in our heads. Nobody ever said this was going to be easy…
A few weeks ago, we did something that we had never ever thought of doing in the past. On the way out to dinner on a Friday night, we dropped off Kendall at my mother’s house, spur of the moment, so we could spend isolated time with our 6 year old son and our 4 year old daughter. As of recent, Kendall has been a terror in the car, sitting next to Cailen, pulling her hair and constantly hitting her. In addition to terrorizing Cailen, she wants nothing to do with sitting in her seat – always wanting to “get out” and wander off getting into mischief. Being strapped into a car is the last thing she wants to do and will let you know it until the dying end, unless she gets what she wants. The persistence and determination of these kids is unreal at times! We quickly observed that our evening as a family was starting to get very stressful and to the point we were ready to turn around and forget the entire outing. But, in a moment, I called my mother and asked her to take Kendall, just for a few hours, so we could spend “normal” time with the other kids. As I write this, it appears to me that maybe this is a common activity that most families undertake, but it’s never crossed our minds in the past to do something without Kendall. Additionally, our support network for help with Kendall is quite limited, so we haven’t had the chance to really isolate time with the other kids without Kendall being in the picture. What we witnessed the evening without Kendall really opened our eyes.
Children know what’s going on and we sometimes underestimate the wisdom that they possess beyond their years. As soon as we dropped off Kendall, the dynamic of the evening completely changed. Our other children were in the clouds and seemed to be so much happier that the attention that Kendall would usually suck out of us was now channeled onto them. The battles for power between 3 kids, had vanished into thin air, leaving a happy two-some in the wake. The evening suddenly seemed odd for us. Our normal operation of always being in a heightened awareness mode and at all times pushing our attention span to the limits, seemed to disappear. The pressure and stress of always being attentive to Kendall had disintegrated for a short window of time, giving us a brief moment to stop and enjoy our other children. Yes, we felt guilty at times because Kendall is a big part of our family and it left a void with her not being at our side. But, it felt great to let the other children see what it’s like to be the center of our world…and they ate it up.
The sibling effect is a powerful thing, from both sides of the fence. As parents, we need to keep all views of the situation we’ve been dealt with into perspective. How is this syndrome playing into the lives of others? We know for a fact that our other kids will be different – more sensitive to special needs? Angry? Upset? More loving??? We really don’t know. Whatever the end result may be, we need to make sure that our non-whs kids get the opportunity to be all that they can be, without losing out on what could have been if our lives were different.
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Perfectly said and so true! Families with special needs children will always have their own “normal” dynamics and continually change that “normal” as thier lives evolve and grow. Kendall is truely blessed to you your family as you all are truely blessed to have Kendall!!
Thank you for sharing that Kevin. You’ve described something that I’m sure is in our future, and that I worry about from time to time. All kids need to feel special, and as such the guilt flows both ways. By being so honest and aware, you guys are confronting the challenges head on and as a result serving ALL of your kids in the process. In the end, all we can do is do our best and come from a place of love. I was really inspired by your words.
Kevin, thanks for taking the time to write such an open and honest account of family life with a special needs kid in the mix. It sounds like you and Cathy are doing an awesome job in striking just the right balance. We’re expecting number two in 10 weeks time and I’m sure we will be having these exact conversations in the not too distant future.
This is an interesting story. It sounds like a sibling thing but maybe there is more to it. Rochelle is an only child, but she grew up with a cousin who is 4 years younger. When Tyler was a preschooler the two of them did everything together. After that their needs and interests no longer overlapped. At that point I began to see Rochelle did not have the stamina to participate in all the activities most children enjoy. She would become very fussy. Soon I realized she needed more down time than most children. Maybe Kendall was telling you she didn’t want to go out for dinner, even though her siblings did. She may have been more than happy to do something more low key with her granny, while her siblings got some individual attention from their parents.
Thank you, Kevin. This is a part of the reality of living with special needs siblings that is too often sugar-coated and/or ignored– the fact that as much as our “typical” children benefit from having a sibling who is “different,” they also suffer somewhat, too. My son is going through this now. I see other siblings who are drawn to their special-needs siblings; however, my son seems to reject his sisters more than embrace them. I hope this will change one day, but I am already worried that he is feeling the impact of what we cannot do as a result of his sister’s condition– we cannot take trips easily, hit the beach for long afternoons, play at the park for hours on a sunny day, or even vacation at Disney World the same way we would if Kailyn didn’t have the syndrome. I know there will be people ready to jump at me and say “Sure you can,” but the fact is that these otherwise “typical” family outings/vacations must be planned, organized, and structured much differently when you have a child with specialized medical needs. Even planning becomes emotionally draining, because in my experience, we cancel out plans due to unplanned illness more than follow through– leading to further disappointment and resentment by the “typical” sibling. I, myself, don’t know how to balance the two without feeling guilty at the same time. It is a struggle I feel almost daily and, truth be told, wish I didn’t know so intimately.