Siblings of Medically Complex Kids

November is still caregiver month, and sometimes we forget how much care the siblings of medically complex kids provide. Having a child with special needs changes the family dynamic. Now one individual needs the attention of someone constantly, instead of attention being spread around evenly. This can be a confusing and emotional time for the siblings of medically complex kids. Keeping open lines of communication for your child to voice any concerns and feelings about their sibling is always a good way to ease anxieties and jealousies. Other ways you can help:

  • Prepare the sibling for any medical equipment in the home by showing them what it is, and explaining to them how it works and how it helps.
  • Maintain connections between siblings.
  • Bring siblings to the hospital; if visits are not possible, have them stay in touch by telephone.
  • Send home pictures, art work and audiovisuals. Keep them involved.
  • Remember this impacts the entire family unit.

Some families are fortunate enough to have multiple caregivers. In these situations, setting aside one on one quality time for each of your children is a priceless opportunity. Take a quick trip together to Target, the library, or ice cream.

Other ways to provide normalcy for the sibling of a special needs child are:

  • Involve them in an activity that’s all their own.
  • Find a sibling support group. This lets them interact with other siblings of special need kids, something other people their age may not be able to understand.
  • Provide resources for your child to read, and become involved in their siblings care at their own pace.
  • Expect the typical sibling rivalry, let them be siblings.

Having a sibling with special needs often leads to amazing qualities in a child like empathy, patience, kindness, compassion, and acceptance. These are priceless life-long traits. The healthy child will be processing emotions many at once, and sometimes may act out from being overwhelmed by their feelings, or the situation. They will still experience jealousy, fear for their sibling, anger, pressure, or guilt. All of these things are normal in any child, and are certainly going to be experienced by a sibling of a special needs child.

Recommended books on parenting siblings of kids with special needs

  • It Isn’t Fair! Edited by Stanley D. Klein and Maxwell J. Schleifer
  • Living with a Brother or Sister with Special Needs: A Book for Siblings, by Donald Meyer and Patricia Vadasy.
  • Brothers and Sisters: A Special Part of Exceptional Families, by Thomas Powell and Peggy Gallagher.
  • Siblings Without Rivalry, by Adele Faber and Elaine Mazlish.

Books for kids about special siblings?

  • We’ll Paint the Octopus Red – by Stephanie Stuve-Bodeen
    Ages 3-7. 
  • Ben, King of the River, by David Gifaldi.
    Ages 5-8. 
  • My Brother, Matthew, by Mary Thompson
    Ages 4-11. 
  • Way to Go, Alex!, by Robin Pulver.
    Ages 4-8. 
  • Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, edited by Donald J. Meyer For ages 7 and up. 
  • Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, by Brian Skotko & Susan Levine.
  • My Brother Otto – Meg Ruby, illustrated by Elisa Pallmer Ages 3-5

The following is an excerpt from an article on The Mighty. It’s a love letter to the sibling of a child with special needs. “But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what’s truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend. ” Rock on.

Sources include:

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