Parents may not realize that they can invite anyone they choose to planning meetings, including their other children. I often attended my brother, Dave’s, Individualized Education Plan (IEP) meetings. Siblings can often offer a different perspective and additional information when creating educational plans for their brothers and sisters. The majority of siblings often spend more time with one another than with anyone else. Across the lifespan, siblings influence each other in many ways that people are often not aware of. They can be the most foundational element of a child’s social life. While siblings can be a source of annoyance to one another, they are also each other’s first playmate, observer, teacher, and supporter. They serve as practice partners with social interactions and as emotional and behavioral models as well.
Sibling relationships are often the longest-lasting and strongest relationships in a person’s life. Siblings know each other very well and possibly in a different light than either parents or educators. While parents may be more protective and sometimes enabling of their child with a disability, siblings can be tougher and push them toward being more independent. Dave has quadriplegic cerebral palsy, uses a wheelchair for mobility and an Augmentative and Alternative Communication device (AAC) for communication. He has some limitations due to his disability including needing support with all daily living tasks. Growing up, our parents often believed that Dave would not be capable of completing many of these tasks. They asked me to assist him before he was even given the chance to try. I always encouraged him to try things before I stepped in to help him. Sometimes he struggled and became frustrated but more often than not, he would be able to complete the tasks I put to him, sometimes with support and sometimes not. At various planning meetings for Dave, I was able to share these types of experiences with the team, offering a different perspective than that of our parents.
Once individuals with disabilities move on from school and into adult life, the protections of IDEA are no longer available. There are some protections under the Americans with Disabilities Act (ADA) Section 504, but parents are no longer a mandated part of any planning teams. Whenever possible individuals with disabilities need to be able to advocate and make decisions for themselves. They may need supported decision-making partners and in fewer instances, guardians or powers of attorney (POA). When there are siblings, families often turn to them to fill these roles. Parents will often have conversations about life in the future for their child with a disability and quite frequently, siblings are an important part of the discussion. Because siblings are the longest-lasting and strongest relationships in a person’s life, it makes sense. They will likely be a part of the individual with a disability’s life longer than their parents.
Even if siblings do not take on the role of supported decision-making partner, guardian, or POA, they should be included in planning meetings for and with their sibling with a disability. My brother is now a grown man, married and living with his wife in another state but I am still involved in his life. Fortunately, he is able to make his own decisions, but he will still call me on occasion when he needs to talk through something. Parents should encourage their children to take an active role in their sibling with a disability’s life. Not all siblings are comfortable with or understand their brother’s or sister’s disability or what their needs might be. This can often occur because parents do not want to burden their children without disabilities or make them feel they need to take on any carer responsibilities. If parents do not explain to their other children about their sibling’s disability it can lead to those children feeling ignored because their parents are paying more attention to their sibling with a disability, but they do not understand why. With open communication and honesty, this dynamic can shift to one of understanding and acceptance as awareness of the disability increases, and their attitude and disposition can change to one of empathy and care.
In our family, we all pitched in to help with Dave when needed and we included him in everything we did. Decisions were made as a family. Our parents never wanted us to feel that we were required to help care for Dave. They wanted us to be friends with him, to play with him, to include him, to occasionally babysit, but not to be fully responsible for his day-to-day care, though we did participate in some caregiving. This fostered a good relationship between us all. Many siblings experience feelings of guilt and self-blame because either they do not feel that they are not doing enough to care for their sibling or because they are achieving at higher levels and in more arenas than their sibling. They may isolate and keep their feelings to themselves, not believing anyone will really understand. Much of these feelings stem from siblings not wanting to make a challenging situation even more challenging for anyone in the family.
Often young siblings do not realize that these feelings may stem from having a sibling with a disability. They may think that everyone feels this way and that they do not need support but as they age, and look back, they often think it would have been good to have someone to talk to about it early on. Parents should talk to their children about their sibling and their disability and what it may mean for the family. Also, seeking out others with children with disabilities can be helpful for siblings. Siblings can feel isolated because they have no real network of other siblings with a shared or similar experience. Meeting peers who also have siblings with disabilities can provide much-needed support and community. Many siblings think it would be great to meet other siblings so as not to feel so alone, and to know there are other siblings out there, with a shared life experience. Siblings can feel alone because most other families they know and encounter do not have an individual with a disability in their mix so they may think they have no one with whom to share their feelings.
Social support networks like SibNet (https://www.facebook.com/groups/SibNet/) or the Sibling Leadership Network (https://siblingleadership.org/) can prove to be central in helping siblings understand their own needs and to have their experiences validated. All too often, siblings keep their feelings inside because they do not want to cause stress or do not think others can relate. They may also be concerned about how their actions might impact the family or their sibling with a disability. By talking to others with a shared experience, siblings can begin to understand that their feelings are not a direct result of their sibling’s disability but rather due to the lack of support and understanding from others.
When a child with a disability becomes a member of a family, it is important to talk about it with everyone and to involve their siblings in planning for them. Siblings can offer an alternative perspective about life with a sibling with a disability and can provide valuable insight and information that parents may not be privy to. Also, this helps the siblings to understand their brother’s or sister’s needs and to know that, even if they require a bit more time and attention from the parents, it does not mean that the siblings without disabilities are less important or less deserving of time, attention, and love.
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