Fri, June 5, 2020

Sibling Relationships and
 Special Needs

If you are the parent of a child with special needs, these phrases may sound familiar:

Parent to child: “You’re not trying.”
Parent to parent: “It’s your fault.”
Sibling to parent: “It’s not fair.”
Parent to extended family members: “You just don’t understand.”

Children with special needs affect every family relationship: parent-child, marital/co-parenting, sibling, and extended family. Because children with ADHD, autism and other developmental disabilities demand more time and resources, a parent may unconsciously neglect, blame or expect too much from other family members.

In my work as a family therapist and director of Ackerman’s Children with Special Needs Project, I’ve seen how much the sibling relationship concerns the parents of children with special needs. It is the topic most often requested for parent workshops, and the issue central to many family therapy sessions.

The sibling relationship is the longest relationship your children will have; it takes on added significance when one child has challenges or cannot function independently as an adult. Your parenting practices and beliefs are informed by your experience growing up: What was your relationship like with your sibling(s)? How did your parents handle sibling rivalry? Do you expect your children to be best friends in spite of differences?

Like any other family relationship, growing up with a brother or sister with special needs has the potential to contribute to a child’s personal growth. But there are also challenges that may lead to confusion and family conflict. Many extra stressors come with raising a child with special needs: everyday tasks take more time, and there are additional decisions about school placement, services and medication. Parents must work harder to keep family life running smoothly.

The Challenge

Hard as they try, parents sometimes see they are neglecting or expecting too much from their typically developing children—or they realize the needs of a sibling are taking a backseat. These are the sorts of problems addressed in family therapy.

For example, one teacher recommended a family seek therapy because of her student’s mean behavior. The mother, whose other son with Down syndrome is a pure delight, realized her typically developing child was her greater concern. Another family requested therapy for their daughter because she is overly responsible for and protective of her little brother, who has cerebral palsy. The parents feel guilty, and are concerned that she is not acting like a child.

A more complex clinical example highlights the struggle when a family has more than one child with special needs. In this case, two pre-adolescent brothers have opposite needs. The older brother functions best with structure and routine; his over-responsivity to sensory stimulation makes him anxious and controlling. The other brother thrives on the unexpected; he is disorganized, talkative and seeks sensory experiences that overwhelm his brother with noise and movement. The parents tried to meet each child’s needs, but the intensity of sibling conflict disrupted family life and they decided to seek therapy.
I’ve also seen that siblings’ reactions to a brother or sister with a disability vary widely, and can change over time. As the moderator of a panel of adults who grew up with brothers or sisters with disabilities, I was struck by the range of reactions, from “my brother ruined my life” to “my brother has been my greatest gift.”

 

Three Siblings and Their Stories

These stories from the therapy room can help to illustrate the valuable lessons learned from families raising children with special needs:

Michael. A middle-aged physician, Michael grew up with an older brother who has a genetic disorder that affects vision and motor functioning. His brother functions like a 3rd-grader. His parents have culturally-informed beliefs that family members must take care of each other, so Michael took on the caretaker role. Because he did not want to outshine his brother, he was an underachiever in school—until he went to medical school. He then decided to abandon the caretaker role, and distanced himself from his brother. As much as he protests that his parents are held hostage to his brother’s needs, they refuse to plan for the future. He knows this means that, ultimately, it will be his responsibility. This causes him to want nothing to do with his brother. The result is unexpressed anger and guilt.  

Parental expectations and beliefs have an impact on sibling relationships. This can have a profound effect on the typically developing child. While it may have positive consequences (many siblings go into the helping professions), it can also be detrimental when caretaking is done at the expense of one’s own development. Some siblings are protective while others are embarrassed. Some children withdraw, underachieve or act out in order to gain attention. Others feel pressure to succeed and be the “good child” to reduce their parents’ burden.

Jason. Imagine sitting in family therapy with your son, who has ADHD and high-functioning autism, as he talks about his younger sister, who also has autism but is significantly delayed and much lower functioning. This is his response, when the therapist says, “I can see it might be unsatisfying to be with your sister”:

I kind of feel like with a lot of siblings there is a lot of responsibility and sacrifice and usually you get something out of it too—at least a companion. I just sort of feel like I can’t communicate with her, that one thing is gone. So now I kind of feel like my mom gave birth and I still don’t have a sibling. Instead of going from an only child to a child with a sibling, I went from an only child to an only child and then there is a burden. … I know she suffers and she struggles too. … I don’t know, does she realize that she can’t do what she wants for a reason?

She gets everything she wants—if we could all be like her we would.

Sibling reactions can be complex. It is perfectly reasonable to love your brother or sister and yet be resentful and angry. Ambivalent or mixed reactions are normal; parents should tolerate, and even encourage, expressions of both positive and negative feelings. Sometimes we get referrals because a child begins to mimic the aggressive or defiant behavior of the older sibling to get more attention or have his or her way. Anxiety and guilt are other reactions; siblings want equal time, but they want to protect their parents from additional stress. Also, let’s remember that parents may also have ambivalent feelings about their child with special needs, and that may induce guilt and lead to an excessive focus on one child.

Kathy. Kathy, 15 years old, came to therapy with her parents, who were concerned that she never talks about her 11-year-old brother, who has global developmental delay and intellectual disability. Kathy opened up: “I never thought of him as different when he was young, but when I was in middle school I started to spend less time with him. I pulled away because he can be aggressive. About two years ago I began to understand about disability and I can now explain it to my friends. Now I accept him with his disability; I have more perspective and I don’t get as angry.”

Children understand more about their sibling’s disability as they mature and gain knowledge. There are many factors that influence the quality of sibling relationships. Typically, these include age, developmental level, gender, birth order and number of siblings. When a sibling has special needs, however, there are additional factors—the severity of the disability, behavior problems, temperament and sensory sensitivities of that child. During the early years, siblings may be playmates, but with time they may have less in common as the typically developing child outperforms a brother or sister. With maturity the sibling may understand more about disability, but new forces emerge, such as peer relationships, school activities and desire for more autonomy. As they near adulthood, siblings may begin to worry about the future, including the genetic predisposition for certain disabilities. Adult siblings often report that, as children, they were left out and didn’t feel included in conversations and services for their sibling. As parents age, additional responsibilities emerge even if there are residential and financial plans for the young adult with special needs.

 

Guidance for Parents

No one can deny that raising a child with special needs presents challenges for the typically developing sibling. But I have learned through my work with many families that parents can help their children develop a healthy sibling relationship.

Communicate. Listen carefully and acknowledge your child’s feelings, both positive and negative. Let him know you understand and it’s OK, because the most important thing is to be available and engage in conversation.  Storybooks, movies and unexpected interactions can become teachable moments to talk about differences and help your child become more reflective and knowledgeable.
Educate. Share information about disabilities and explain why you spend more time with the brother or sister with special needs. Use age-appropriate language and be specific: explain why you don’t help as much with homework, why you expect him to do more chores, or why you seem to pay much less attention to him. It is even more complicated when the sibling has an invisible disability, such as ADHD, ASD or LD and he appears “typical.” It may be difficult to give young children brain-based explanations for why a sibling struggles more and gets all the attention.

Visible disabilities, such as cochlear implants or unusual facial features, are much easier for parents and siblings to accept and appreciate. But when children appear typical, it is much harder for siblings and others to understand and explain disability—both challenging behavior and lagging skills. There is also more judgment and higher expectations for developmentally-appropriate achievement and social interactions. It is helpful to educate those around you so they understand the neurobiological basis of developmental disabilities. Sharing information with siblings will also increase their sense of family unity and connection to their disabled sibling.

Address individual needs. Each child is unique, with individual strengths and weaknesses. Remember to recognize each child’s efforts and intentions. Do not give your typically developing child too much caretaking responsibility. Have age-appropriate expectations and do not demand overly-responsible behavior. Because family life is often driven by the interests and capabilities of the child with special needs, normal family routines may be sacrificed. Make appropriate adaptations, but not at the expense of developmentally-appropriate routines for the typical sibling.  

Don’t label or compare. Don’t unintentionally label your children as the smart one, the problem one, the talented one. Don’t compare children to each other or to others: this is a trap that only leads to feelings of inadequacy. Over time, differences between the siblings become more obvious as one child outperforms the other, makes friends more easily, gets better grades, and seems to have an easier relationship with their parents.

 

Spend one-on-one time with each child. All children benefit from one-on-one time with each parent. Enjoy your time together and find joint activities to spark your child’s talents and desires. When children are more relaxed and get undivided attention, they are more comfortable sharing their feelings and concerns. One-on-one times create memories your child will cherish. Since there is so much focus on the sibling with special needs, this is an opportunity to make each child feel appreciated.

Create a safe environment. Sibling rivalry and sibling conflict are normal. Children learn about getting along with other people when they try to solve interpersonal problems. Give your children time to resolve conflict but intervene when the situation is unsafe or one child might hurt the other. It is important to protect your children; siblings who are impulsive and physically aggressive should be monitored and taught self-calming skills.

Take time for self-care and self-reflection. The more parents can take care of their own needs and have some perspective, the more they can be present and sensitive to each child’s needs. Taking time for oneself can lead to better coping and problem-solving skills, more flexibility and greater ability to respond rather than react. Self-care also strengthens a parent’s marital or co-parenting relationship.

Use Available Resources. There are a number of resources that can help your typically developing child better understand a sibling’s issues, and discuss feelings and concerns. One resource is a child or family therapist. Another excellent resource is sibling support groups which are offered through different agencies and programs. Being with other children who share similar issues can be very healing because it normalizes the child’s experience and creates an opportunity to express thoughts and feelings and feel understood.

Building Strength from Struggle

The sibling relationship serves as a template for other relationships—and reactions are varied. When a child with a disability becomes the focal point of family life, it is normal for siblings to have reactions. If parents work to diffuse stress and communicate openly, these responses can be positive.

The first step for parents is awareness of each child’s needs, followed by sensitivity, responsiveness, communication, positive parenting practices and the belief that family relationships impart important life lessons for each child.

Growing up with a brother or sister with special needs can be difficult for typically developing siblings, but it can also have benefits. It can help them develop empathy, a more inclusive worldview and important skills for success in life. It can also increase resilience—the ability of the individual and the family to overcome challenges.

Judy Grossman, DrPH, OTR is Associate Director of the Center for the Developing Child and Family at the Ackerman Institute for the Family, and Director of its Resilient Families: Children with Special Needs Project. She is also an Adjunct Associate Professor at New York University. Dr. Grossman maintains a private practice in couples and family therapy in New York City.

This article first appeared in the 2020 issue of the Parents League Review. Get the current issue of the Review free with a family membership. Or purchase it separately.