Coping with Crisis and Handicap

1. Front Matter

   Pages i-xv

   PDF

2. The Child Dying in the Hospital

   • Genevieve V. Foley

   Pages 1-10

3. Care of the Dying Child at Home

   • Ida M. Martinson

   Pages 11-22

4. The Bereaved Parent

   • Harriet Sarnoff Schiff

   Pages 23-36

5. Where Was God?

   • Harold S. Kushner

   Pages 37-49

6. The Clergyman’s Role in Grief Counseling

   • Earl A. Grollman

   Pages 51-59

7. Care in Chronic Fatal Genetic Disease

   • Aubrey Milunsky

   Pages 61-77

8. Explaining Death to Children

   • Earl A. Grollman

   Pages 79-100

9. Coping with Suicide in the Family

   • J. William Worden

   Pages 101-111

10. Treating the Person Confronting Death

    • Ned H. Cassem

    Pages 113-159

11. Ethics and the Care of the Child with Terminal Illness

    • Robert M. Veatch

    Pages 161-175

12. Kids Are People Too, Sometimes

    • George J. Annas

    Pages 177-188

13. Coping with Handicap

    • John A. Carr

    Pages 189-204

14. Helping Parents Cope with a Profoundly Mentally Retarded Child

    • Mary S. Challela

    Pages 205-215

15. The Involvement of Siblings of Children with Handicaps

    • Allen C. Crocker

    Pages 217-228

16. Reaching Autistic Children

    • Walter P. Christian

    Pages 229-248

17. Coping with Sexuality and Sexual Vulnerability in Developmentally Disabled Individuals

    • Ludwik S. Szymanski

    Pages 249-267

18. A Little Bit of Awkward

    • Alan J. Brightman

    Pages 269-280

19. Teaching Teachers to Cope

    • Margaret A. O’Connor

    Pages 281-286

20. Coping Strategies of Children and Their Families

    • Sue S. Cahners

    Pages 287-297

For over 20 years I have accepted the challenge and had the privilege of caring for sick children, agonizing with their parents during periods of serious illness, which were sometimes fatal. Because of my particular interest in and concern about birth defects and genetic disease, many of these children had severe disabling handicaps, which were often genetic and included mental retardation. Hence care of these children and their families was often complicated by the presence of serious or profound genetic defects. The initial realization of the nature of the disorder invariably led to emotional . difficulties and inevitably later spawned chronic distress. For some children inexorable deterioration led to untimely deaths, while the parents agonized over their handi­ capped, chronically ill, or defective-but nevertheless loved---

• autism
• children
• counseling
• crisis
• nature

• Harvard Medical School, Boston, USA

  Aubrey Milunsky

• Eunice Kennedy Shriver Center, Boston, USA

  Aubrey Milunsky

• Massachusetts General Hospital, Boston, USA

  Aubrey Milunsky

Policies and ethics