Coping with stress for families and parents of children with disabilities

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When a child is diagnosed with disabilities, all of the attention is focused on helping the child. But parents also need assistance in coping with stress, their own feelings and frustrations.

Parents of children with disabilities had very elevated scores on the Parenting Stress Index, signifying that they perceived far more stress in their role as parents than did parents of children without disabilities. A model for teaching parents how to cope with the stress associated with raising children with disabilities was developed. The basic premise of the model is that by increasing coping skills, parents can reduce their own stress and can become effective mediators in reducing stress in their children.

The first step in the study was to ask parents to list specific stressors they associated with raising their children with disabilities. Some of the most frequently mentioned were: parent guilt; worry about the future; parents’ perception that other people think they may be the cause of the problem; difficult behavior of children with disabilities; feeling a need to protect their child; disagreement between parents about dealing with the child; disagreement between parents about the existence of a problem; increased financial burden; finding competent professional services; and sibling resentment of attention given the child with disabilities.

All of the stressors identified by parents in the initial study were compiled into a Disability Stress Index to be used with workshop participants. At the beginning of the workshop session, participants complete the index in order to identify their own specific stressors, and to determine if their stress is primarily internal, external, or physiological.

Internal Stress

Internal stress factors come from within the individual and include attitudes, perceptions, assumptions, and expectations. Expectations of parents about their child lie at the root of burnout. When expectations about parenting are not met, the first thought is What did I do wrong? Therefore, parents must learn how to develop realistic expectations and how to recognize when negative self-talk defeats effective coping. Parents should identify their own self-defeating assumptions and think of alternative messages. They must be kind to themselves, to accept themselves and their child as fallible, anal to boost their own self-confidence by noting and using personal strengths and talents.

Beliefs that Lead to Internal Stress

1. Giving 100% every day is what every parent is expected to do.
2. The success or failure of my children depends entirely on me.
3. I will never be bored as a parent.
4. I will be seen by society as a good and honorable person because of the effort I put into being a good parent.
5. I refuse to let anyone else care for or influence my children.
6. I should always deny my own needs for rest and recreation in order to help my children.
7. I should do everything for my children and not require that they take on the responsibilities that they are old enough to handle.
8. I should spend every possible moment with my children.
9. I should feel guilty if I need a break or want some attention for myself.
10. One role in my life can satisfy all my needs and can support all my dreams.
11. My children should appreciate everything I do for them.
12. My children must like me.
13. Other people must see me as a good parent, able to handle everything.

Coping with stress - Internal stressors

1. Renounce love, affection, and approval from children as needs-rather than bonuses.
2. Boost your own self-confidence.
3. See the positive side of stress.
4. Understand anger and use it constructively. Control anger by controlling wishes.
5. Practice positive thinking by daily affirmations. Repeat positive messages to yourself over and over.
6. Write them out and put them around the house.
7. Develop a support system by sharing honestly your feelings of frustration, anger, and concern.
8. Learn to tolerate change because children change often. You and the children both change moods and feelings.
9. Be able to live in the presence of imperfection.
10. Learn to catch yourself when you say negative statements to yourself and challenge them.
11. Develop the positive belief that you can control destiny. Be healthily selfish, free yourself from needing outside approval.

External Stress

External forces also impinge upon parents of children with disabilities. Neighbors, friends, and relatives don't understand why such a normal-acting child is having academic problems. Teachers frequently don’ t fully understand the ramifications of a child's problem. Parents are called upon by the school to help make decisions about the child's school program but often feel helpless as the child's advocate because of their own lack of understanding. Because external stressors are those that are situational, and often involve relationships with others, parents are encouraged to develop assertiveness skills. Problem-solving techniques, time management, and goal setting are helpful when dealing with stressors associated with raising children and running a household. Because coping with a child with disabilities is so emotionally draining, parents also are encouraged to develop intimacy skills and a support system.

External Stress Factors

1. Dealing with school about child's placement or program.
2. Coping with difficult child behaviors.
3. Educating neighbors and relatives about the child's problems.
4. Helping siblings understand the problems associated with disabilities.
5. Getting child in right school.
6. Helping child with homework.
7. Financial pressures.
8. Working with spouse on child management.
9. Carpools.

Coping with Stress - External Stressors

Analyze Problems Thoroughly

1. Describe the problem with a specific statement.
2. State how it could be worse and how it could be better.
3. Determine what is keeping it from getting better. Propose solutions for the things over which you have control.
4. Plan action.

Use Time Management

1. List priorities both short and long term.
2. Do a time use audit.
3. Compare time use with priority of goals.

Develop Assertiveness

1. Know your limits and be realistic about what you can accomplish. Say no to unreasonable demands.
2. Learn about your child's problems and needs so that you can be an active participant in meetings with school personnel and can offer suggestions to coaches, neighbors, and relatives.

Physiological Stress

The final type of stress is physiological stress. Parents of children with disabilities need to recognize that children with disabilities require exceptional amounts of energy. In order to replenish energy, parents need to be sure they get sufficient rest, eat well balanced meals, and exercise vigorously. During the workshop, parents learn meditation or relaxation techniques to use when they feel stressed, anxious, or fatigued.

Physiological Stressors

1. Diet
2. Exercise
3. Rest
4. Recreation

Strategies for Coping with Stress

Everyone knows what to do, but doesn't always do it

1. Make a plan and stick to it. Make sure you include all of the elements necessary for a healthy life.
2. Follow your physician's advice.
3. Team up with a spouse or friend for time off
4. Get your finances organized, money can be a huge stressor. If you aren’t the accounting type you can look into money management software that can help you get your families finances in order.
5. Use relaxation tapes or exercises to calm down after a hectic day.
6. Find a place of retreat (the bathroom or the car, for instance), and go there for cooling off when the tension is very great.
7. Make recreation and relaxation a priority, so that you have some time off during the week. Studies have shown that psycho-logically healthy families have less-than-perfect house keeping.
8. Hire out or trade off chores that are time consuming and distasteful. Sometimes it is well worth paying someone else to do those chores so that you have more time and energy to devote to yourself and your family.

Parenting children with disabilities presents special challenges. Professionals working with parents need to recognize the difficulty parents face when dealing not only with the child's everyday problems but also the associated social and emotional problems of school failure. Parents are eager to learn better coping strategies and parent groups can provide both skill training and emotional support for parents of children with disabilities.