Issue #28 – The Professional Weighs In

Posted on Posted in All Articles, Down Syndrome and Congenital Heart Defects

Ruchie Szlafrok-Orlansky, LCSW

As defined by the Merriam Webster dictionary, sibling rivalry is the “competition between brothers and sisters”. Upon hearing this phrase, we think of standard conflict between siblings that they experience while growing up. Who can run faster, who drew the best picture, who gets the best grades in school etc. The term sibling rivalry, when involving a sibling with special needs, is entirely different. Here we are referring to children who feel they are competing for their parents’ love, affection and most commonly, their time. So how do we navigate this challenge? Below please see some suggestions and responses to the letters that were submitted on this topic.

  1. Dear Mrs. R,
    Wow. Your letter was so heartfelt and eloquently written. Likening life and parenting to a puzzle is so spot on. We all do our best trying to fit all the pieces in the right place, in order to create the perfect picture. But for so many families, it feels almost impossible. Like the pieces they were given don’t fit, as if the manufacturer sent them the wrong pieces.It sounds like your children struggled a lot growing up with a sibling with Down syndrome in the home. It also sounds like you really did your best trying to juggle your family’s many needs. Hindsight is 20/20 and we can always look back at experiences and analyze them from our newer and enlightened perspective. But when we are in the moment, it is often difficult to know if we are doing the right thing and if the sacrifices we are making are worth it.

    You say in your letter “You can’t dry tears already cried”. While that is true, you can, however, give those tears meaning. You can explore those tears long after they’re gone. You can’t turn back the clock; you can’t change the way your children experienced their childhood and their brother with Down syndrome. But you can relate to your now adult children and explain to them what your reality was like. Open up their experience to another perspective that they are now old enough to understand. Having them hear how much you care for them, both now and then, can help them move forward. Although it might be painful, I would encourage you to explore your children’s feelings and validate them. Their feelings are valid, even if you did nothing wrong. Because this is not a question of right or wrong, rather an exploration of feelings and joining in together on a shared experience. And remember, although your children are grown, it is never too late to connect on something so important.

  1. Dear Mrs. H.,
    Your letter was filled with so much heart and emotion. The perspective you shared was so uplifting and positive. It breaks my heart to hear how people warned you that a child with Down syndrome can ruin a family. That must have been a painful thing to hear. It does, however, bring a phrase to mind. “The same boiling water that hardens the egg, softens the potato”. Although in life there are many things that are out of our control, the one thing that is usually in our control is how we respond. When put under pressure or stressful situations it is up to us to decide how to respond.It sounds to me like your resilience and positive attitude trickled down to your children who are able to be pillars of strength to those around them in similar situations. That is such a fantastic thing to hear; you must be very proud!
  1. Dear Mrs. R,
    Thank you for sharing your story. It makes a lot of sense that your children (based on the age they were when your child with Down syndrome was born), would react differently.These days, there are many great resources out there for siblings of children with special needs. But years ago, when your children were growing up, there were not as many resources available yet to support siblings. I remember years ago when I facilitated sibling support groups, the greatest outcome was that the children felt they were not alone, they found other kids who were experiencing what they were experiencing. That feeling of togetherness really takes away a lot of the feelings of isolation and shame. Although most agencies make groups for younger aged children, there are some groups that address adult siblings of individuals with special needs as well that I would encourage your family to explore.

    If I may suggest, in reference to your oldest son who has yet to come to terms with your child’s special needs, talk to him. Approach him and have a frank conversation about where he is holding in his process and what can be done to help him work toward acceptance. You say he was antagonistic and repulsed by your child with Down syndrome. While that may have been the case, it is important to remember that the primary emotion under anger is often fear. So, while your son was outwardly displaying anger and rejection, it is likely he was feeling sadness and fear. Fear of what others will think, fear of what effect this will have on his life, and more. If those feelings were repressed and never properly addressed or explored, they are still there. They do not just fade with time. Therefore, I encourage you to encourage him to work on these feelings and to seek guidance if needed.

    To the parents who have young children at home now in addition to a child with Down syndrome, my loving advice to you is to CONNECT. Reach out to different agencies to see if they provide any support for siblings (and parents as well!). Helping your children realize that there is no shame or secrecy in your situation is a great gift to give them. In addition, the knowledge that they are not alone, that it is not uncommon, is very powerful. Help them network and find those in similar situations to them. Also, talk to them about how they are doing and help them process. As long as you keep the dialogue open and they know talking about this isn’t taboo, they won’t feel isolated. Expression is key here, because silence is not golden.

    To summarize: no two children have the EXACT same experience, even if they are in the same family. The key to understanding sibling rivalry when there is a child with special needs is to validate and support. You can’t change your children’s reality and you can’t have them respond the way you would like. But you can help them name and identify their emotions, you can validate the challenges and help them recognize the beauty that is within their sibling. Because there is so much beauty, your children might just need a little help to discover it.