The Challenges, Lessons and Love of Growing up with a Sibling with a Disability

   

girl making cupcakes with her brother

In 1995, Claudia Evart founded Siblings Day after losing both of her siblings at a young age. She set up the Siblings Day Foundation (SDF) to establish a national day that follows along with the sentiments of Mother’s Day and Father’s Day, and acts as a celebration to honor all family relationships. Today, we focus on one special type of sibling relationship – that between a child with a disability and their brothers/sisters – and the resulting challenges, life lessons and parenting dynamics.

Challenges

Anyone who has a sibling knows it is a bond that is hard to replicate, but the experience of being a brother or sister of a child with a special need is even more distinct. However, along with that wonderful relationship can include some challenges that are difficult for these children to face.

  • Siblings of children with a disability have reported feeling the need to be perfect or well-behaved, which can lead to stress and a sense of inadequacy – as if they can’t express their feelings.
  • They may feel like their problems are minimized because their difficulties may seem small when compared to limited mobility, learning disabilities or even a chronic, life-threatening problem.
  • They are sometimes forced to grow up too quickly in order to be a support system for their parents and siblings.
  • They often experience anxiety, depression, feelings of neglect, anger, resentment, hostility, jealousy, or even embarrassment.

And yet, in conjunction with these struggles and challenges, siblings of children with disabilities grow up learning incredible lessons of hardships that many other children may not learn for years, or ever.

Life-Shaping Lessons

Childhood inequities teach siblings that everyone has different strengths and weaknesses. Not everyone will always win or succeed, but these lessons can make children more aware and prepare for the inevitable setbacks later in life. Being exposed, particularly at a young age, to diversity and challenges offers kids a wider understanding of personal struggles, and a greater appreciation for life. Siblings of children with disabilities:

  • Develop unmeasurable compassion and the awareness that people who are different are not “less than”
  • Recognize the necessity for self-control and patience in a household where one child might need a little more time and attention due to circumstances outside of anyone’s control
  • Become more loving, caring, less judgmental, less selfish, more independent, and more readily accepting of differences. They spread empathy and inclusiveness, despite difficulties and challenges
  • Grow up a hero – maybe the most rewarding aspect of being a sibling to a child with a disability. To many children with disabilities, their siblings are their protectors, their biggest supporters and their strongest advocates
  • May even be inspired to go into a helping profession later in life


This is the exact path Cassie P. took because of her brother with a disability. She explains,

“Will spent more time in the hospital than at home, so that meant that our parents did the same. For almost two years, my sister and I often got off the school bus and were unsurprised to find a neighbor or a relative in our driveway, because Will had been rushed to the hospital. We bounced between the homes of relatives and family friends. We often slept at the hospital on the weekends, because we saw our parents so rarely during the week. Will’s needs completely disrupted my family’s previously very predictable life.

His physical development wasn’t typical, which resulted in surgeries, which led to infections, which impacted his cognitive development.

He was endlessly poked and prodded. But being Will’s sister was also hard. Will needed a lot of my parents’ attention; they needed to be with him constantly to advocate for his care. Will’s life had a profound impact on my family, and on me.

Today, I work as a special education teacher. I serve students who have significant cognitive delays and intellectual disabilities, resulting in a range of needs.

It’s because of Will that I chose to become a special education teacher. It’s because of Will that I am a passionate advocate for people with disabilities.”


What Parents Can Do

Children are perceptive and even if they don’t always know exactly what’s going on, they can feel your stress and can certainly feel the weight of having a sibling who requires extra care.

  • Be open and have conversations, so that your child understands.
  • Don’t leave them in the dark to create their own ideas of what is happening.
  • Try to make special time with each child when possible and allow them to share their personal concerns, so they know that it is okay for them to struggle or have their own problems.
  • Don’t just tell your children that their siblings require more attention - explain to them why. It isn’t easy for a child to understand or to prioritize their own struggles and they shouldn’t have to. Being the sibling of a child with a disability can be tough, but it can also be incredibly rewarding.

Celebrating Siblings Day

All sibling relationships are unique, but the inimitable experience of growing up with a sibling with a disability is one that only the most fortunate can know. In the end, it’s all about loving and caring for your siblings, and remembering how lucky you are to have each other. Having a sibling is a truly awesome experience, that shouldn’t just be honored once a year, but every single day!

How is your family celebrating Siblings Day? Tell us all about it on our Facebook page.

 

Back to top