SUPPORTING SIBLINGS

Throughout their lives, brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future, and caregiving demands. Brothers and sisters also face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve.  – The Sibling Support Project 

I promised not to offer any parenting advice… but this is one exception, because siblings are too important to ignore. If you have more than one child, you know what it’s like to perform parental “triage”. Often, the child with special health, developmental, and/or mental health challenges gets the bulk of our attention, while siblings are left to (in some ways) fend for themselves. It doesn’t help that service providers tend not to focus on siblings either.

When my youngest son – the one I considered to be “flexible” – started showing signs of fray, a friend suggested I consult with a practitioner named Bridget Glenshaw, a LMHC and psychotherapist who runs sibling support groups as part of a holistic program at the Community Therapeutic Day School in Lexington, MA. I learned about the importance of validating my son’s experience and giving him his own special attention. Siblings need support so they can learn to express their complicated emotions in appropriate ways and develop into well-adjusted adults.

Research shows that the sibling experience is complex. Growing up as the typically developing sibling of a brother or sister with challenges can be a trying, confusing and sometimes lonely experience. But it can also cultivate tremendous compassion and understanding.

THE SIBLING EXPERIENCE: COMPLEX FEELINGS

The lives of most siblings are filled with fun, friendship, fights and rivalries, but siblings of children with mental health needs tend to experience a wider range of highs and lows. The following dynamics are common among these siblings, as described in the brochure “Supporting Siblings of Children with Mental Health Needs” (link below in Resources) written by Emily Rubin, Assistant Professor in Psychiatry at UMass Medical School:

Confusion

The unpredictable behavior and sometimes rapidly shifting moods of children with mental health needs can be very confusing to their siblings. Often the brother or sister is held to a different set of expectations and rules of discipline which may feel like a double standard.

Shame

Some brothers or sisters may have difficulty controlling their behavior at home, at school, and in the community. Siblings might feel embarrassed by this behavior, which can translate into reluctance to invite friends over or be seen in public together.

Independence

Accustomed to less parental attention, many siblings of children with special needs are more independent than their peers. Young siblings are often capable of tasks that typically exceed their age range, such as putting themselves to bed, completing homework without help, and preparing their own meals.

Competing for Attention

Children with mental health issues can require unusual amounts of attention, and some siblings resort to negative behaviors of their own in order to attract parental attention. Other siblings see how emotionally taxed their parents or guardians are, don’t want to add to the perceived burden, and end up keeping too many personal problems to themselves.

Anger and Resentment

It can feel unfair when the brother or sister is held to a different set of standards, or when siblings’ opportunities are curtailed due to the needs or demands of the brother or sister. Siblings can harbor great resentment over seemingly preferential treatment for their brother/sister.

Safety Concerns

Some siblings are subjected to physical and verbal aggression, witness alarming conflicts with caregivers, or see their brother or sister threaten to harm him or herself. A sibling’s concern for his/her own safety or the safety of family members can lead to generalized anxiety, sleep problems, impaired concentration in school, and many other issues.

Love/Hate Relationship

Since mental health issues often manifest sporadically, some siblings have periods where they get along well together, followed by bouts of intense dislike. The love/hate relationship can lead to feelings of guilt, worry and sadness.

HOW SIBLINGS ACCOMMODATE FOR THEIR SISTER OR BROTHER: ROLES & RISKS

Siblings learn to adjust and accommodate for their brother or sister’s struggles in their own ways – some more healthy than others. Some siblings internalize their pain and identify as the “easy” child in contrast to their challenging brother or sister, while others act out, seeking attention and approval.

Here are the most common roles siblings assume in the family and their associated risks:

The Caretaker

Role: Sometimes siblings assume caregiving responsibilities for their brother or sister who struggles.

Risk: The Caretaker might be extremely helpful to the parent, but if playing this role goes unnoticed and unacknowledged, or simply becomes expected by the family, the child might become overwhelmed and depleted, or resentful and angry.

The Parentified Child

Role: Sensing her/his parents are overloaded, some siblings assume adult responsibilities before they are developmentally ready to do so, acting as a parent to the parents.

Risk: A child is not equipped to take on the needs of the parents. The Parentified child is at risk for missing out on childhood. 

The Defender

Role: Some siblings might step into the role of defending their brother or sister, whether it’s from teasing or slights outside the family or frustration or anger inside the family.

Risk: The Defender may have mixed feelings as they overreact to hearing others say things they themselves might have thought but never dared express, or they may get into fights. The results can be emotionally and physically traumatic.

Note: Some siblings respond in the other extreme: avoidance, becoming distant and withdrawn from their brother or sister. 

The Overachiever

Role: This child feels a compulsion to accomplish what the brother or sister may not be able to do, such as getting good grades or excelling at a sport, in an effort to compensate.

Risk: The Overachiever assumes substantial pressure and can be devastated by any form of failure. 

The Mediator

Role: This is the child who always tries to settle a potentially upsetting situation, even if it means sacrificing something that they want.

Risk: This sibling can’t tolerate conflict or unease in the family, and might end up losing their own feelings, opinions, or point of view in the process.

WHAT IS CONSIDERED “WELL-ADJUSTED”?

According to Bridget and her colleague Olivia von Ferstel, a sibling who is well adjusted “makes choices that are true to how he or she feels, or at the very least can acknowledge the range of feelings that accompany his/her choices”. A resilient child can empathize with their brother or sister’s struggles, but can also separate from them to live their own lives.

A sibling whose responses are more compulsive and reactive to the needs of others is less healthy. When siblings accommodate themselves to their brother or sister’s dysfunctional behaviors, they learn an unhealthy model for building relationships in the future.  “Whether the sibling is responding to real or perceived demands, or filling a void in the family dynamic, it can take a toll on the sibling’s own health and development…these siblings are at risk for carrying an emotional burden of responsibility that often results in an experience of loss, isolation, depression, resentment, guilt and anxiety.”

5 WAYS TO SUPPORT SIBLINGS

Brothers and sisters need support so they can develop into well-adjusted and resilient adults. The following strategies are adapted from “Supporting Siblings of Children with Mental Health Needs”, along with input from Bridget Glenshaw.

This is what you can do to help them:

  1. Talk Openly

The most effective intervention is for parents or guardians to talk openly with siblings, acknowledging the challenging family life in age-appropriate language. Listen actively to the sibling, and validate his/her complaints (“I know it makes you really angry when your brother/sister does such-and-such”). This will let the sibling know that their concerns are important, and that you understand how difficult it is for them. Try not to blame the child with special needs, and remind siblings that everyone has something they struggle with. Help siblings figure out what to say to friends and relatives about the brother or sister’s issues.

> Insights from Adult Siblings:

“My parents let us know they loved us equally, valued each of our interests equally, were aware of the strain that dealing with disability caused, and tried to address it. Their efforts also let me know that they were open to hearing my views, questions, and problems.” 

“Young sibs don’t always have a voice. It brightens their world to know that they have been heard.” 

“We want to know that you know we are going through a tough time and that it is okay to have negative feelings about our sibling.”

  1. Encourage Siblings to Have Their Own Lives

Encourage siblings to develop interests, hobbies and friendships of their own. When possible, separate siblings so they get a break from one another; spending time apart can be refreshing for siblings and can lead to more positive interactions when they come back together.

> Insights from Adult Siblings:

“My parents let me know I mattered. They made me feel like I could pursue my dreams without feeling selfish.” 

“They really pushed me to have a separate life—whether it was sports or other extracurricular events. They wanted me to have time away from my brother to figure out who I am, and what I want.” 

“I knew my parents cared about me as an individual, and that made a big difference.”

  1. Try to Give Siblings One-on-One Time

Try to spend one-on-one time with siblings, even if it’s a simple activity like watching television together or walking around the neighborhood. Little rituals and traditions can help build bonds and provide emotional security for siblings too. Acknowledge a sibling’s strengths as an individual, as well as his or her contributions to the family.

> Insights from Adult Siblings:

“In sixth grade, (my mom) started lying in bed with me after putting my brother to bed and before going to bed herself. We would just talk about anything and everything, and those fifteen to thirty minutes of uninterrupted time with her every day put our relationship on the right track.” 

“My dad started a tradition when I was two. Every year on my half-birthday we had a daddy-daughter date. We would go to a fancy restaurant (white table cloths and candles required) and he wore his special tie. … I wish I would have had a similar tradition with my mom because it’s really important to get some alone time with parents.” 

“My mother used to put little notes in my lunch box.”

  1. Seek Out a Sibling Support Group or Individual Therapy

Give siblings the opportunity to express their feelings outside of the family in a safe and nurturing setting. Just as parents are relieved to meet other parents who “get it”, it can be liberating for siblings to talk with other kids who can relate to their experience. Sibling support groups led by trained facilitators create an atmosphere of understanding and acceptance. Getting together with peers who face similar issues gives siblings an opportunity to relax, laugh, process, and heal. The Sibling Support Project organizes community-based peer support programs called SibShops for just this purpose (see Resources). 

Sometimes the feelings siblings experience can be so intense or disruptive that they may need professional counseling to learn to cope. In situations where there is extreme physical and verbal aggression, some siblings begin to show symptoms of post-traumatic stress disorder. Ongoing support interventions for these siblings can help mitigate the onset of PTSD symptoms. Siblings need to understand that they are not responsible for their brother or sister’s mental health problems; it’s not their fault nor can they fix it.

> Insights from Adult Siblings:

 “Often, we feel alone because we have no one else to talk to about our feelings.” 

“I really appreciated when one of my parents, or even a family friend, took time to really focus on what was going on with me—just me—and my life.”

  1. Be a Model

Your perspective on, and response to, your child’s struggles will set the tone for brothers and sisters. If siblings see their parents modeling resilience by seeking support and information, having humor and hope, and taking care of themselves, they’ll learn to have healthy attitudes and behaviors as well.

Resources: 

Organization:

The Sibling Support Project is a national program dedicated to supporting siblings of people with special health, developmental and mental health concerns. They offer opportunities to connect with other siblings online and in person, as well as “Sibshops”, which are local peer support programs for school-age siblings. 

Notes:

Much of this article, including the “Sibling Experience” and “How to Support Siblings” advice, is adapted from an excellent brochure “Supporting Siblings of Children with Mental Health Needs”, written by my friend Emily Rubin and published online by the Massachusetts Developmental Disabilities Council.

“Insights from Adult Siblings” are responses from a survey conducted by The Sibling Support Project, which asked adult brothers and sisters how their parents, other family members and service providers let them know they cared.

“How Siblings Accommodate” is based on research findings of Bridget Glenshaw and Olivia von Ferstel as described in their book, Sibling Group Lends a Helping Hand.