5 Things Special Needs Siblings Want You to Know

Source: Gustavo Fring / Pexels

Growing up alongside someone with a disability or chronic medical condition is a unique experience – and an increasingly common one. Approximately one in five families have at least one child with a disability, and the childhood disability rate is increasing, according to reports by the U.S. Census Bureau. The presence of a disability (visible or invisible) affects everyone in the family system. Yet, the impacts are often overlooked or minimized for typical siblings.

Through my work as an author and journalist (and my personal experience as a sibling), I’ve encountered hundreds of special needs siblings, ranging from children to adults. In almost every conversation I have with other siblings, a few common themes and challenges emerge. Whether you’re a parent, educator, medical provider, mental health professional, or caregiver, here are some hard truths that typical siblings want you to understand:

1. Siblings need to feel special too

Special needs siblings are often called “glass children,” because parents and caregivers tend to see right through them. The adults are so consumed with the demands of caring for the child who has a disability that the siblings become invisible. Over time, the typical sibling learns to mute or dismiss their own needs as unimportant. Yet, fundamental needs for love and attention don’t just disappear.

Every child needs the undivided attention of safe adults regularly. Validating the needs of everyone in the family and making space for special needs siblings to express those needs helps the development of healthy relationships in adulthood.

2. They want to be siblings, not caregivers

Often, typical siblings are asked to help with caregiving and household duties to take some of the pressure off their overburdened parents. And while many siblings are eager to assist, remember that they are still children and deserve to be treated as such.

Typical siblings don't want to be parentified or saddled with responsibilities that are beyond what's appropriate or what they’re capable of and willing to do. They also might need reminding that it’s okay to have boundaries and to say no to tasks that they don’t feel ready to take on.

3. They feel conflicting emotions

Having a sibling with disabilities can spark feelings of deep love, joy, admiration, and protectiveness. But the experience may also evoke anger, resentment, rivalry, and fear. All these emotions are normal, and siblings want the freedom to express the full spectrum of feelings they may have.

Enlisting the support of a skilled therapist may help siblings work through painful emotions. There are also support groups and organizations such as the Sibling Leadership Network, which provides safe spaces for typical siblings to be honest about their experiences and validate one another.

4. Survivor guilt and vicarious trauma are common

Watching your sibling undergo painful medical procedures, worrying about their safety and wellbeing, or witnessing them endure discrimination or bullying can lead to feelings of helplessness and, often, survivor’s guilt. Many siblings report ongoing anxiety and stress as a result.

Typical siblings want parents and caregivers to be aware of this and to talk openly about the things they see and experience. In some cases, it may be helpful to consult a child psychologist or family therapist to help siblings process any unresolved trauma.

5. Siblings need long-term care plans

Many adult siblings I talk with are concerned about what might happen to their high needs sibling when their parents are no longer able to care for them. Yet, many parents are reluctant to create a long-term care plan or discuss end-of-life issues.

Sitting down with a social worker, attorney, or a care planning advocate is one of the best ways you can support everyone in the household. You can discuss issues such as: guardianship, group homes or independent living options, medical directives, power of attorney, health insurance or Medicare/Medicaid options, disability or social security payments, and more. It may feel uncomfortable to talk about these topics, but it’s much better to do so before a crisis arises. For siblings especially, having a plan can ease anxiety and help them to understand what their role will be long-term. Not to mention, having a care strategy (preferably in writing) is in the best interest of the person living with the disability.