While much attention is paid to the person living with ALS and their adult family member/caregivers, children are often voiceless, despite experiencing much of the same shock, sadness, caregiving, and grief as adults. Over the years, Dr. Kavanaugh has met with school personnel asking for guidance, manuals, and education on how to talk about and support children and adolescents living with and caring for a person living with ALS. These professionals recognized the limited information and the need to receive guidance in order to lessen the potential social isolation felt by kids in families with ALS — particularly in terms of how these issues affect school performance and attendance. This guide was created to address the needs of school staff and personnel working with children impacted by ALS.
Older youth/young adult guide, ages 19-25. This book takes a more serious tone, again following several young adults as they manage their own lives with the care needed for their loved one with ALS, school and relationships.
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Choose your own adventure guide, middle school youth, ages 13-18. This book follows the stories of three youth, providing options for how they talked to people, who they talked to, and what was the outcome.