HOWDOWEMANAGE ASAFAMILY? Caregiving situations impact more than the main caregiver. The circumstances will impact every member of the family. Following are ideas you can think about as you consider your home environment and relationships between family members. Help the whole family see the child with a disability as another important member of the family. The child is not a disabled child, but a child with a disability. Even though having a child with a disability or a health problem is difficult, it is important to know that there are accomplishments to appreciate, opportunities to grow, and moments to laugh and enjoy. Try to lead as normal a life as possible. Try not to allow the sick child or the disease or disability to dominate all phases of family life. Your child who has a disability needs to be involved in family activities and to know that he or she has a responsibility for helping with such things as household chores to the degree they are able to do so. Talking things over regularly with all members of the family helps prevent the build-up of tensions and fears.
WHAT ARE SOME OF THE FEELINGS THAT PARENTS OF CHILDREN WITH DISABILITIES AND/OR HEALTH PROBLEMS EXPERIENCE? Parents of children with disabilities or who are chronically ill often experience periods of shock, disbelief, depression, and adjustment. These are all normal responses. You may be surprised at the range of feelings you may have – feelings that might seem abnormal under different circumstances, but are normal now. You
may feel: - Anger at yourself, at your spouse, at God, at doctors, or even at your child for what has happened to you and your family.
- Anger at your friends for their good fortune in having healthy children. - Guilt that you may be responsible in some way. - Anxiety and worry over specific events or the future in general. -
Grief over the loss of your child’s health or the differences in your expectations and reality.
- Helplessness that you could not prevent what happened and that so much of your child’s care may now be provided by others.
- Resentment because it “happened to me” or “to my child”. - Guilt over having any kind of fun or happiness. - Confusion about the information given to you by your doctors, teachers, or others.
- Chronic sorrow may be present to varying degrees and may increase greatly at important milestones in your child’s development.
You may feel so determined to manage well that you ignore your own needs for relief, fun and relaxation. At times, you may feel the desire to “run away” and escape your situation.
impact more than the main caregiver.
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