The Safety Sleeper

Supporting Siblings of Disabled or Medically Complex Children

Supporting Siblings of Disabled or Medically Complex Children

Original article written by Gus Gear on March 2, 2021

Gus Gear’s mission to improve the safety and quality of life for those facing medical challenges began more than a decade ago by its founder and CEO, Sarah Palya, in response to the ongoing medical journey of Gus, her son. Learn more about Sarah and Gus Gear here.

When we discuss children who are diagnosed with medically complex conditions,

we often reflect on and consider the effect it has on the child’s parents’ lives. But parents are not the only ones whose lives are irrevocably altered by a complex diagnosis or disability. Siblings in these situations often feel an acute sense of stress and confusion. They may even feel like they aren’t getting the attention they crave, or experience guilt, asking themselves, “Why not me?”

Difficult feelings may present themselves through anxiety, depression, anger, or shame. Ultimately, the management and resolution of these difficult feelings falls to the parents. While difficult, it is possible to create an environment built on trust, transparency, and support that helps every child in the family feel seen, heard, and loved. 

Be Aware of the Signs

First, keep an eye out for the warning signs that could indicate your child is craving extra attention. Some common concerning behaviors include:

  • Being withdrawn
  • Losing interest in friends or regular activities
  • Doing poorly in school
  • Pushing themselves too hard
  • Rebelling and acting out

Join a Program or Network

There are a number of organizations dedicated to supporting the families of children with medically complex health conditions — offering good opportunities for siblings to get together with other siblings who understand some of those complex emotions they’re experiencing. In this setting, they can connect and talk in a way that feels organic instead of forced. As parents, we mean well, but we’re not always the person our child needs to open up to. 

Some good organizations include:

 

Carve Out Special Time with Each of Your Kids

It can be hard to find time for one-on-one activities amidst everyday duties and medical cares, but it’s worth the hard work of scheduling and prioritization. Remember, you don’t need to drive yourself crazy coming up with some never-before-seen activity. Special time can be a simple conversation apart from everyone else or even a trip together to the grocery store. What you’re doing isn’t nearly as important as the memories you’re making. Remember, good memories come from good feelings. 

 

Enroll Them in an Activity that is Theirs Alone

It’s beneficial to get siblings involved in an activity that is all their own. Having that space, ability to create boundaries, and ownership over something helps them build confidence and independence. It also helps them build an identity separate from all the medical stuff. 

If it’s an activity like soccer or some kind of sport, it can be positive to bring your medically complex child to watch games. It’s an excellent way for them to show support and bond while maintaining boundaries. If they can’t attend, consider filming the game/match/performance to show them later. 

 

Ask for Help!

If you’re concerned and need advice, don’t ever hesitate to ask your child’s pediatrician. They can help put you in touch with a qualified psychologist, family therapist, or support group. Ultimately, part of supporting your child — in addition to helping them build personal resilience — is to help them create a network of friends, family, and professionals who can help them navigate difficult feelings and situations. 

 

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Thanks to our friends at Gus Gear for writing this awesome article! Caring for and supporting sibling of disabled or medically complex children begins with awareness and education. Learn more about Gus Gear and their lines of products - including the Central Line VestOstomy Pouch CoverG-Tube Wrap, and Line Covers - visit their website!

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