“In some ways we got the idea that raising families was all instinct and intent, and we behave as if anyone could be an effective parent simply because he wanted to be, or because he just happened to go through the acts of conception and birth. This is the most complicated job in the world.”

As tough as parenting can be, it becomes even more difficult when our children are diagnosed with a chronic illness or disability. We go through a wide range of emotions including denial, anger, frustration, guilt, resentment, depression, and fear. All of these feeling are natural. After the initial shock and disbelief, parents may feel alone and helpless. It is an unbelievably stressful time – like nothing you have ever experienced before in their lives.

At this moment, when your child is first and foremost in your mind, parents must also learn how to cope with their own feelings and stressors. You will have days of wild emotional swings, with feelings of despair followed by moments of fulfillment. How you learn to take care of your own needs will determine how you are most able to effectively help your child. If you pinpoint the sources of stress and set up management strategies, you will be able to work through this inner turmoil while going through the process of building a relationship with your child.

In this article I will cover the following areas:

Internal Stressors
External Stressors
Physiological Stressors
Recognizing The Symptoms Of Stress
6 Strategies For Managing Stress

INTERNAL STRESSORS FOR THE PARENT

• Unrealistic expectations
  Parents’ expectations of themselves often become one of their biggest stressors when they discover their child has a chronic illness or disability. They feel as though their child’s success or failure depends exclusively on them. The parent may believe that the only way for the child to function is for the parent to give up on her own life and take responsibility for every aspect of the child’s life. By refusing to accept help from others, and by not letting the child take on some responsibilities themselves, parents subject themselves to additional stress and pressure.
• Worry about the future
  What does the future hold for my child? Will he be a productive and independent individual? Will the manner in which I raise him affect his final outcome and placement in life? These questions can haunt all parents, but they may seem especially pressing to those whose children aresick or disabled.
• Self-blame
  Parents may feel guilt associated with the disability or chronic illness, especially when it is caused by genetic predisposition or when present at birth. They wonder to what degree they are to blame for this illness and often shoulder blame and feelings of failure. When behavioral issues occur that parents do not approve of, they may be unable to discipline without feeling even more guilt.
• Confusion and pain if they do not attain a loving relationship with the child
  Some illnesses and disabilities are not conducive to warmth and closeness, and parents want so much to have this kind of relationship with their child. Depending on what condition the child has, it may be necessary to adjust parents’ expectations of how this relationship will be framed.
• Perception that other people think the parents are the cause of the problem
  This is really another expression of the self-blame previously mentioned. Some parents, either consciously or subconsciously, come to the belief that other people hold them responsible for their child’s illness. This is very rarely true, but parents may harbor these feelings.

 

EXTERNAL STRESSORS FOR THE PARENT

• Sibling resentment
  Brothers and sisters of the child with chronic disability or illness may feel neglected and angry that mom and dad spend more time with their ill sibling. They may later feel shame for having these feelings.
• Difficult behavior
  Certain types of illness or disability are characterized by behavior that is not always what parents would want to see in their child. When parents are unable to effectively discipline or correct this behavior, it may exacerbate and become chronic in nature.
• Financial burden
  Medical bills can quickly become too much to handle. Additional care and services for the child, doctor visits, and hospitalizations all add to what may be an already overburdened household budget.
• Conflict between parents on how to care for the child
  Some parents have differing ideas on how to handle and nurture the child in all aspects of his life. Some may even deny that a problem exists. It is a struggle for both as they try to understand and accept how their relationship is evolving because of the stresses of caregiving.
• Trying to find and obtain professional services appropriate for the child
  Who will be best suited to help with a child’s particular illness? By understanding their own abilities and limitations, parents will be much better able to determine when they need support.
• School placement
  Where will the child have the best chance of becoming educated and independent? What services are offered in these schools for development and growth? Finding a school with appropriate facilities and staff can be a difficult process.
• Educating other family members and outsiders about the child’s disability
  This education is crucial for others who may not understand exactly what the child is experiencing, or how to deal with the situation.

 

PHYSIOLOGICAL STRESSORS FOR THE PARENT

The physical demands of caring for a child can be tremendous, and this applies even more to those with sick or disabled children. Large amounts of energy are required on a day-to-day basis to care for a child with additional needs. Care providers need to take of themselves too.

1. Get a refreshing and restorative sleep each night
2. Take care to eat nutritive foods
3. Get daily exercise
4. Schedule time for relaxation, and a break from the demands of the household and children.

 

RECOGNIZING THE SYMPTOMS OF STRESS

In order to keep stress at a level that is helpful rather than harmful, parents may benefit from knowing the common symptoms of stress. Stress levels are different for everyone and can affect each person in different ways, but there are usually some similarities.

Stress can be detected through symptoms in the body, mind and mood, and behavior. If these symptoms are recognized and treated when they first begin, it can often prevent larger health problems from developing such as heart disease, adrenal fatigue, high blood pressure, gastritis, obesity, and depression. Stress can have real implications for our physical health, so it is important to catch it early.

Physical Signs of Stress

• Headaches
• Feelings of fatigue or low energy
• Muscle aches and pains, tense muscles
• Chest pain
• Sleep difficulties
• Frequent colds or infections
• Drop in sex drive
• Upset stomach, diarrhea, or constipation
• Teeth grinding

Mind and Mood

• Becoming irritated or angered easily
• Anxiety, worry
• Feelings of low self-esteem, worthlessness, inappropriate guilt
• Feeling overwhelmed
• Lack of motivation
• Sadness or depression
• Difficulty relaxing
• Inability to focus, indecisiveness
• Being pessimistic

Behavioral Signs of Stress

• Changes in appetite (over or under-eating)
• Tobacco use
• Increased use of alcohol or drugs
• Increased nail biting, fidgeting (nervousness)
• Avoiding responsibilities
• Social withdrawal

 

6 STRATEGIES FOR MANAGING STRESS

As a parent it is easy to feel overwhelmed by all of the responsibilities you shoulder, especially when you also work outside the home. You have job-related deadlines and stresses, along with the child-raising responsibilities and daily household obligations that must be accomplished. With the added accountability of caring for a child with a chronic illness, you are at an increased risk of parenting stress.

With these responsibilities will come a wide array of emotional responses . Some days you may feel like running away because everything is working against you. Other days will turn out to be quiet and rewarding with feelings of accomplishment. All emotions are natural and normal. Having realistic expectations will go a long way toward helping to cope with whatever life holds. Learning effective coping techniques will be beneficial to yourself and your child.

1. EDUCATION

First and foremost, education is a source of power. Read. Learn everything you possibly can about your child’s condition, its symptoms, and causes. Learn about the numbers that are affected with this illness or disability — it helps you to not feel so alone with this illness or disability. Keep in mind that not everything you read on the internet will be factual. Find books by authors who have dealt with the illness and use their information as a reference point. Ask your physician for referrals to counselors or psychologists who could offer you help. School staff may be able to give suggestions and guidance. Go to support groups where other parents can help assist you by sharing their experiences. The more you know, the less isolated and more empowered you will feel.

2. GET SOCIAL SUPPORT

Start with those closest to you and your child. Your family and friends are the ones who will cover your back and be there to support you. Share even the rough times with them. They are your mental health cohorts. By confiding in them, you will have an outlet, and they will feel a part of the living-giving process. They will help to bring “normal” back to the upheaval you have felt in your life throughout these recent events.

Check in your community for support groups. Church groups or community education classes may provide invaluable resources. Seek out specific networks of families throughout the country who have experienced similar situations. Many have regular meetings which may be close to where you live.

There are even blog groups and online support groups to help you deal with day-to-day difficulties and share the types of feelings you have. You don’t have to get dressed up or leave the house when you find a group that can feel your pain or frustration and show you a perspective that you might not have thought of.

3. DEALING WITH OTHER PEOPLE

Make a specific list of any outside problems that are stressing you out, including school placement, homework, educating those outside the immediate family about your child’s problems, even transportation to and from school and other related activities. Try to determine which things you have control over and what your ultimate goals would be. Even having them down in writing will give you a sense of control and time to analyze future actions. Determine what you can accomplish and learn how to say “no” when the item is not priority on your list. With short-term and long-term priorities, you will know how to make plans.

4. FINANCIAL SUPPORT

Chronic illnesses and disabilities tend to pull families apart for emotional reasons. They are also very draining on family budgets and resources because of the additional medical services, medications, counseling, and other money constraints that progressively grow over the lifetime of the disability. When researching the available financial help, parents can feel overwhelmed and worried. However, no matter where you live there are government programs and private programs available to help families. There are also other disabled children’s charities and even volunteer caregiver programs. Your physician or counselor in your community may be able to suggest what help is available.

5. CAREGIVER SUPPORT

Last, but certainly not least, you as the caregiver must give your child the gift of a healthy and confident parent. The only way to do that is to take care of yourself. Begin by making a schedule for you; that is, what you will eat today, what kind of exercise you will accomplish, and how many hours of stress-free sleep you will carve out just for you. Know your high and low energy times and work around those. You are your child’s advocate. You need to make sure you are ready for the job.

You will also need to find a small piece of time to call your own each day. Whether it is a 10-minute walk around the block or a phone call to your aunt, you need to have some “me time.” It is important to clear your mind or just fill it with something that requires little to no mental work. By being a little selfish with regard to this time alone, you will regain some energy and emotional perspective. It is also very important to have a list of respite service providers in your area that you can call to relieve you for a couple hours or a few days while you get away. This time away will make you a much better caregiver.

Make recreation and exercise a priority. The added endorphins will give you extra energy to deal with everyday problems and perhaps view them in a different light.

6. RECRUIT OTHERS IN THE FAMILY TO HELP

Having a child with a chronic disability, you know that time is a rare and special gift. Use it wisely. Share household tasks with everyone — ask them to pitch in, and the work will be accomplished quickly. You don’t have to do it all! Ask for help with cleaning, cooking, even shopping.

Set rules and boundaries in the household. The child with the disability needs to know his boundaries and limits as well. Without clearly defined expectations, children become dependent on others for everything. This tends to lower their self-esteem and encourage inappropriate social skills and poor behavior. Give them age-appropriate tasks, and they will develop a sense of accomplishment and pride.

Siblings can often have feelings of jealousy or anger, but their understanding of the illness and their coping strategies will change as they grow older. If they are involved as a family in caring for the chronically ill child and also are able to savor the sweet kindness experienced in helping that brother or sister, they may be more forgiving and understanding of his needs. By addressing any fears they may have whether spoken or unspoken, you may bring them closer together as siblings.

There is immense stress involved in parenting a chronically ill child. Spouses may also feel the effects of time constraints with constant caregiving. Your time together is important, but it often comes down to a matter of priorities. Your child needs you to be available for certain acute illnesses or hospitalizations, but you will need to get away occasionally to share time just with your spouse. Your child deserves both parents to be healthy and happy.

If you are able to tolerate changes, share feelings honestly, and live with imperfection, you will be able to cope with whatever comes your way. Understanding anger and trying to see the positive side of stress will go a long way in helping those around you do the same.

Good family communication and flexibility will help all family members to see every challenge as an opportunity to grow. You are all learning how to cope and find ways to accept your world as it is now. Try to enjoy life and focus on one thing at a time. Don’t take on more than you can handle. Each family member will find their own coping strategies and share them with the others. Revel in the glorious gifts of nature. Enjoy changing seasons and holidays with friends and family. Laugh, have fun, and make time for joy in your lives.