Special Needs Focus: The “Other” Sibling

Me and my brother in 1965

I often post pictures on Facebook about outings with my brother and so often I get the comment, “You’re such a good sister.” That comment makes me cringe, and until a few weeks ago, I wasn’t sure why it triggered such a negative feeling. I know people have nothing but good intentions when they say it and I will admit, there is a tiny part of me that needs that figurative “gold star.” After my last Facebook post, I had an epiphany. I dread the good sister remark because it brings up the very thing I craved my entire life. I wanted my parents to tell me I was a good sister, that all the sacrifices I made for my brother meant something to them. I desperately sought their praise and hungered to hear those words. With their deaths ten years ago, I had to find a way to accept I would never hear those longed-for assurances of approval.

I’m the older sister, and now guardian, to a brother with intellectual disabilities as well as a few physical challenges. When there is a child in the family with special needs, the family dynamics change. Any situation which involves one sibling requiring extra time, money, and attention drastically alters the course of life for all children in the family.

A sibling’s relationship is different than a parent’s, cousin’s, or a neighbor’s connection. A sibling relationship is unique and specific to the siblings of an individual with special needs. In the years since I became my brother’s guardian, my role has begun to blur over into parent territory, but I am also fully aware I will never fully comprehend my mother’s or father’s relationship with my brother, just as they could never fully understand my role.

The other children in a family with a child with special needs are referred to as a variety of titles: the “other” siblings, the “well” siblings, the “healthy” siblings, the “neurotypical” siblings, or a term I only recently heard, “glass children.” I watched a TED talk about “glass children” by Alicia Arenas, a Youtube video every parent of a child with special needs should watch, and felt immediate recognition as she described “glass children.” At first, I thought the term would define us as fragile and breakable, but instead it refers to the other siblings as “glass children” because we’re so often invisible.

As the speaker discussed her experiences growing up with a sibling with severe autism, I found myself relating to much of what she said. Although each person’s experience is different, there are often common threads when you grow up with a sibling who has needs which demand the lion’s share of the family resources. There is a finite amount of time, energy, and finances in families, and it only stands to reason that when one child needs so much, the other children must make do with what’s left. Parents, relatives, and friends focus on the child with special needs but look right through the “other” siblings.

I believe in almost all cases the parents are doing the best they can. My parents were good parents, and I know they loved me. They did the best with what they knew and the resources they had. I liken my parent’s strategy to being triage physicians. They had to deal with the child most severely in need first, and nine times out of ten, it was my brother with intellectual disabilities. That often left me, as the child closest in age, feeling invisible, bearing the weight of needing to always be the “good child,” and struggling to find my place in the family and later, the world. I often felt I had no identity separate from my brother and for many years into college and adulthood, I fought internal battles to separate myself. Who was I besides being David’s sister?

If you’re a parent of a child with special needs, what can you do to make sure your other children don’t become “glass children”? This list is not from an expert, but only suggestions from a 61-year-old “other” sibling, one who used to be a “glass child.” My parents did so many things right, but these are some things I wish had happened in my family.

1. Communicate– Talk with the “other” siblings about the child who has special needs. Discuss the limitations, the diagnosis, and what it means for the family. Keep lines of communication open and make sure they know they can always talk to you about their feelings regarding their sibling with special needs. Talk about the future and expectations. I urge you to watch the above-mentioned TED talk, “Glass Children,” with your adolescent or adult children. Parents, I warn you, you will probably not like hearing what she has to say but grab your box of Kleenex and watch it! It might be exactly what you need to gain some insight into your children’s world and also open the door to difficult conversations.
2. Check ins– Occasionally, have an emotional well-being check in with the “well” siblings. Don’t accept the response of “I’m fine” at face value. Even if it’s painful for you to hear as a parent, try to allow the “healthy” child the freedom to express any and all feelings they may have regarding being a sibling to someone with special needs. I felt an enormous pressure to create as little trouble as possible, to always present myself as “doing just fine” to the world even when my emotions were in turmoil.
3. Realistic Expectations– Are you expecting too much from your “other” children? Don’t pass off too many caregiving obligations to them. As part of the family, they can occasionally be expected to help with the sibling with special needs, just as they would with any sibling, but don’t make them a mini parent. There is often pressure felt to be the perfect child so the parents don’t have any additional worries. No one is perfect, and the drive to become perfect may eventually manifest in unhealthy ways.
4. Counseling– Some issues may be too sensitive and painful for a child to discuss with family. If at all possible, offer access to professional counseling. A safe place for a child to talk about their emotions, their questions, and their challenges.
5. Time– This is the resource most often in short supply in families with special needs children. It’s tough to find a few extra hours to spend one-on-one time with a child, but the investment will pay dividends for years. It doesn’t have to be much, go out for ice cream or for a walk. The purpose is to allow the “well” child to have undivided time and attention, to feel they are being truly seen by their parent. I can’t stress the value in listening to your child without any outside distractions at least once a week.
6. Plan for the future– I am so thankful my parents did not stick their head in the sand. They knew my brother’s care was way beyond the scope I could take on full time. As much as we’d like to believe parents will live forever, living in that land of denial will only make the transition after your death a nightmare for your child with special needs and your other children.

My relationship with my brother is a complicated one. It has colored my entire life, sometimes in cheery yellow colors and sometimes in dark, ominous shades. Being a sibling to a brother with intellectual disabilities shaped the way I see myself, my choice of careers, my selection of a life partner, and most definitely, the way I parented my children. Since my mother’s death ten years ago, I have been granted a slight peek into her life as a parent to a son with intellectual disabilities, and although I will never fully grasp her experience, I have come to accept she did the best she could with what she knew.

If you have a child with special needs, you’re probably already feeling overwhelmed and overburdened, but please remember the needs of the other children in the family. Don’t let your other children become “glass children”!

Me with my brother at Night to Shine in 2019

The first meeting of a group for adult siblings of people with special needs will be held March 9^th at Schusterman Benson Library, 3333 East 32^nd Place, Tulsa, Oklahoma 74135 from 6 until 7 p.m. We ask that only siblings attend. If you have any questions you may email me at dianekondos@yahoo.com

“This event is not affiliated in any way with the Tulsa City-County Library. The Library neither sponsors nor endorses this event, the speaker(s) or the organization.”