Resentment and Finding Small Ways
We Invite siblings to share their stories and creating opportunities for them to connect with one another can be tremendously valuable in validating their experiences and helping them know that they are not alone. Online communities such as SibTeen, Sib20, and SibNet (all closed Facebook groups) are wonderfully warm, supportive spaces where adolescent and adult siblings can receive information, resources, and validation 24 hours a day, seven days a week. Sibshops are super-fun events that enable school-age brothers and sisters to talk about their experiences and play.
Be sure to also check out our Parenting Special Needs video too!!! (scroll down)
[1]Chelsea and Ben Armstrong
[2]
As a triplet, Chelsea Armstrong has never known life without her brothers, Ben and Cameron. As the sister of two individuals with special developmental and health concerns, Armstrong’s journey into the world of disability began at birth. Ben was born with hydrocephalus and brain injury. Cameron was diagnosed with Autism Spectrum Disorder as a teen.
[3]Now 22, Armstrong, a Registered Nurse at Yale New Haven Hospital in Connecticut, recalls some of the challenges of being the only typically developing child in a family for whom life revolved disability.
“I would say the majority of resentment came from double standards, and not receiving enough attention from my parents,” said Armstrong. “Growing up I always felt like I was on the back burner. Whether it was going on vacation, or just going to the grocery store with my parents, everything was always about my brothers’ needs. We could have plans to do one thing, but if one of my brothers’ health problems got in the way, my parents would drop everything they were doing for him.”
Armstrong’s experience is not uncommon. Many siblings of people with disabilities experience resentment, a challenging feeling to accept, manage and talk about. This is especially true for sibs, who often feel guilty about negative emotions they may feel toward their brothers and sisters.
“Acknowledging my feelings of resentment has been very difficult,” said Armstrong. “Resentment is not an easy topic to talk about. Growing up, I was always told I was the lucky one, and that I should be thankful I don’t have disabilities.”
Having a safe, supportive space to be heard and validated is essential for siblings to cope with resentment. By recognizing reasons for resentment and small, everyday ways to show support, parents, professionals, and others can make a big difference in the lives of siblings.
[4]Chelsea, Ben and Cameron Armstrong
What About Me?
In many families, resources, including parental time and attention, are invested heavily in the child with the disability. The rhythms of life – daily schedules, outings, vacations – are often set by the needs of that child. Siblings can feel invisible.
“As a child, I was resentful of my brother because of how we couldn’t do many things like ‘normal’ families, like going to the movie theaters because of his tantrums,” said Karree Lee, 20, from Oregon, whose brother Barry has autism.
“Times when my sister was unwell or hospitalized were very stressful for me, and I was often frightened, but my parents were unavailable,” said Abby Paige, 45, from New Brunswick, Canada, whose sister Kara has you can’t rely on your parents for care.”
[5]Sandi and Adam Guild
“I never felt special enough or important enough,” said Sandi Guild, 44, from Massachusetts, whose brother Adam has Down syndrome. “My brother’s needs came first, and because I was healthy and capable, I could take care of myself. I will never forget what it was like to be twelve years old and spend hours at a time alone in a hospital waiting room while my parents were with my brother in the ICU. No child should have to experience that.”
[6]Crystal Covington. and Jason Mendez
Some siblings say that they add to the isolation they feel from parents by shutting down, often to avoid adding to the perceived burden of their parents.
“Over time I stopped sharing details about life with my parents because I didn’t want to bother them and it’s not like they really cared,” said Kristina Chang, 31, from California, whose brother David has autism and neurofibromatosis.
[7]Karree Lee
It’s Not Fair
Unequal expectations and consequences for behavior and responsibility can also cause resentment, especially among children, for whom fairness is often a big deal.
“Tara would chase me and hit me and bite me all the time,” recalled Kira Volar, 50, from California, whose sister has developmental disabilities. “I was not allowed to hit back and she was not punished ever for her aggressive behavior. There were never any words of understanding and support spoken to me regarding what I was going through with Tara’s behavior.”
“I remember growing up, my dad was told that individuals with autism didn’t lie,” said Fatimat Shotande, 32, from Florida, whose brother Rashid has autism. “If my brother blamed me or one of my other siblings for something, my dad automatically believed him. I resented that he believed anything that came out of my brother’s mouth because I knew my brother would say what he needed to say in order to not get in trouble.”
In the Dark
Many siblings describe the anxiety and anger that results from not having enough information about the disabilities and diagnoses of their brothers and sisters. While parents receive information from professionals, siblings typicallytypically rely on parents. Parents may hesitate to share information about their child’s diagnosis with siblings, because they don’t want to burden, confuse, or upset their typically developing children. However, as a result, siblings can feel isolated and confused.
“They never explained fully what was going with him, so I was in the dark,” recalled Chang, from California.
“I thought his behavior was intentional,” said Jennifer Kelly Campbell, 56, from New York, whose brother, Scott, has Intellectual and Developmental Disabilities. “It would have been helpful to know what his disability was, how it impacted his life, and how I could help him. My parents were not clear communicators about what was happening.”
“I resented the fact that I was never informed on my sister’s condition when anything went wrong,” recalled Katy Walsh, 28, from Dublin, Ireland, whose sister, Robyn, had spina bifida and hydrocephalus before she passed in 2005. “I was living it regardless, and I think that being included in conversations, no matter how hard, would have made it all a little easier to deal with. The unknown was the scariest part.”
Small Things Make a Big Difference
Understanding why siblings sometimes feel resentment is an important first step in helping them feel heard. Validating their feelings and making even small accommodations can make a world of difference. Carving out special time together, setting equal expectations, and being honest are effective signs of support.
A Little Validation Goes a Long Way
“My mother made time for just me,” recalled Crystal Covington, 40, from New York, whose brother, Jason, has autism. “There were some experiences that we had that were just for me. For example, she would take me to the ballet and then we would go out to eat. She also did her best to treat us as equal as possible. My brother and I had the same chores, the same rules to follow, etc. If my mother did make a mistake in how she treated us, she had no problem apologizing, and she made every effort not to repeat it.”
“When I was around 40, my mom acknowledged that I had been a co-parent with her,” recalled Paige, from Canada. “She said something like, ‘We did a really good job together.’ This felt like an acknowledgement that I was there the whole time, and I took part.”
Validation can also be powerful when it comes from other trusted adults, family members, professionals, and friends.
“One of my sister’s special education teachers took a special interest in my typically-developing sister and I in elementary school,” recalled Annie Treml, 42, from Wisconsin, whose sister is affectionately known as, Doobs, and has autism and Intellectual Disability. “Ms. Karen once took us out on a day trip without our sister. Just ‘us.’ And we felt so special. We went boating, on a picnic, and watched the water-skiers out at the lake. It is a very sacred memory.”
“My brother’s speech therapist had a really good relationship with my family,” recalled Shotande, in FL. “I remember his speech therapist acknowledging how I must feel and that this must be really difficult for me. That meant a lot to me. I felt like no one outside of my family could understand or see that I was struggling.”
“I remember a time when I was talking to one of my friend’s parents,” said Armstrong, from CT. “I told her about my situation, and brothers, and the first thing she did was ask about me, and how I am dealing with things. She acknowledged that I have a hard situation. That was the first time I ever felt heard.”
Sharing Stories and Building Community
Inviting siblings to share their stories and creating opportunities for them to connect with one another can be tremendously valuable in validating their experiences and helping them know that they are not alone.
“Whenever people with whom I’ve shared my story tell me that I’m strong, it feels wonderful,” said Lee, from OR. “I never really thought about it as strong, it was just my normal everyday life. Sharing my story about my special needs sibling has even led to another person coming out with their story, and that made me feel incredibly important to be able to inspire someone to do that.”
“Connecting with other siblings has helped tremendously and has created a safe place for me to talk about my feelings and know I am not alone,” said Armstrong, who admitted she still struggles to process the past and worries about the future. As for how parents can support their typically developing children, the nurse and triplet offered the following.
“My biggest piece of advice to parents who have children with special needs and typically developing children is to put yourself in your typically developing children’s shoes. Remember what it is like to be a typically developing child; the normal things that they go through that are also hard. Allow them to fail and share their unpleasant feelings. Reassure them that what they are feeling is normal. Spend alone time with them. Remember that they have needs, too, that are just as important.”
For more information about the Sibling Support Project and the resources we provide, please visit us at www.siblingsupport.org. [8]
Watch Now
In this video, I talk with siblings about their TRUE & REAL feelings about being a sibling to a brother
or sister with special needs
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This post originally appeared on our March/April 2021 Magazine [22]