ABSTRACT
Most parents and guardians with disabled children experience isolation. Friends, neighbors, and even extended family members are often uncomfortable around children with visible or invisible disabilities or chronic illnesses. That discomfort can manifest as judgment or fear and so parents and guardians—and their disabled children—frequently find themselves marginalized and left out of social opportunities. Further, many families with disabled children confront enormous obstacles simply to get out of the house, and all-consuming challenges as they try to help their child engage safely and successfully in activities. Some are known as “forever parents,” because their child will always need that intense degree of care. Parents like these often find they no longer have anything in common with peers whose kids are developing on typical trajectories. Even spouses and other co-parents may have vastly different perspectives on how best to raise a child with a disability. And so, parents and guardians lose friends and even the support of partners and extended family who simply cannot relate to their extraordinary circumstances. This chapter looks at the pain of isolation and offers various kinds of support.
