ABSTRACT
Raising a child with a disability or chronic illness presents many challenges that extend far beyond those of raising a typically developing child. Many parents and guardians feel intense urgency to try every possible intervention as early as possible in their child’s development. The pressure to obtain and maintain effective services can be overwhelming and exhausting. Appointments, evaluations, assessments, hospitalizations, interventions, medications, and treatments can fill every moment of every day. Many parents must leave the workforce or reduce their paid-work hours to meet the intense needs of their child. At the same time, however, the costs for therapies, medical equipment, and specialized activities can be exorbitant, so a financial bind often squeezes the family. Some families are living with unmanageable aggressive outbursts and violence from their children; others are facing terminal illness. These parents and guardians are exhausted and burned out. They may struggle with depression and anxiety. This chapter explores some of the specific stressors these families, provides information about government benefits and respite programs, and offers strategies readers can use to help lighten their load.
