Parenting is hard, but it is a skill that is often assumed to naturally exist in parents. Virginia Satir, one of the first social workers in the area of family therapy, used these words:
“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 children are diagnosed with a chronic illness or disability. Parents 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 they have ever experienced before in their lives.
At this moment, when the child is first and foremost in their minds, parents must also learn how to cope with their own feelings and stressors. They will have days of wild emotional swings, with feelings of despair followed by moments of fulfillment. How they learn to take care of their own needs will determine how they are most able to effectively help their child. If they pinpoint the sources of stress and set up management strategies, they will be able to work through this inner turmoil while going through the process of building a relationship with their child.
- 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.
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.
- 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.
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. Specifically, parents should remember to:
- Get a refreshing and restorative sleep each night
- Take care to eat nutritive foods
- Get daily exercise
- Schedule time for relaxation, and a break from the demands of the household and children.
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 physical health, so it is important to catch it early.
Physical Signs of Stress
- 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
Parents can easily become overwhelmed by all of the responsibilities they shoulder, especially when they also work outside the home. They 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, they are at an increased risk of parenting stress.
With these responsibilities comes a wide array of emotional responses . Some days parents may feel like running away because everything is working against them. 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 both the parents and the child.
First and foremost, education is a source of power. Parents should learn everything they possibly can about their child’s condition, its symptoms, and causes. Simply learning about the numbers that are affected with this illness or disability will help parents to not feel so alone. They should also keep in mind that not everything on the internet will be factual, and find books by authors who have dealt with the illness. They can ask a physician for referrals to counselors or psychologists who could offer help. School staff may be able to give suggestions and guidance. Another good idea is to go to support groups where other parents can help by sharing their experiences. The more parents know, the less isolated and more empowered they will feel.
2. Get social support
The best social support starts with those closest to the parents and their child. Family and friends are the ones most likely to offer support. By confiding in them, parents will have an outlet, and these family members will feel a part of the living-giving process. They will help to bring “normal” back to the upheaval parents have felt in their life throughout these recent events.
Parents should check in their community for support groups. Church groups or community education classes may provide invaluable resources. There are specific networks of families throughout the country who have experienced similar situations. Many have regular meetings which may be close to the family home.
There are even blog groups and online support groups to offer assistance with day-to-day difficulties and share the types of feelings that all parents in these situations experience. These days, parents don’t need to get dressed up or leave the house to find a group that can share the pain or frustration and show a new perspective.
3. Dealing with other people
To lighten the emotional load, parents can start by making a specific list of problems that are stressing them out, including school placement, homework, educating those outside the immediate family about the child’s problems, transportation to and from school and other related activities. Then, they can determine which things they have control over and what their ultimate goals would be. Even having them down in writing will give a sense of control and time to analyze future actions. They should determine what can realistically be accomplished, and learn how to say “no” when the item is not a priority on their list. With short-term and long-term priorities, they will know how to make more suitable 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 they 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. Physicians or counselors in the community may be able to suggest what help is available.
5. Caregiver support
Last, but certainly not least, the caregiver must give the child the gift of a healthy and confident parent. The only way for parents to do that is to take care of themselves. Parents can begin by making a schedule for themselves; that is, what they will eat today, what kind of exercise they will accomplish, and how many hours of stress-free sleep they will carve out for themselves. It helps to know their high and low energy times and work around those. Parents are a child’s most important advocate. They need to make sure they are ready for the job.
Parents also need to find a small piece of time to call their own each day. Whether it is a 10-minute walk around the block or a phone call to an aunt, they need to have some “me time.” It is important to clear the mind or occasionally just fill it with something that requires little to no mental work. By being a little selfish with regard to this time alone, parents will regain some energy and emotional perspective. It is also very important to have a list of respite service providers in the area that parents can call to relieve them for a couple hours or a few days while they get away. This time away can make an individual a much better caregiver.
Parents should make recreation and exercise a priority. The added endorphins will give extra energy to deal with everyday problems and perhaps view them in a different light.
6. Recruit others in the family to help
Parents who have a child with a chronic disability know that time is a rare and special gift. They should use it wisely, for example by sharing household tasks with everyone in the household. Parents, especially moms, don’t have to do it all! They should ask for help with cleaning, cooking, even shopping.
It is important to 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, parents 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. Parents’ time together is important, but it often comes down to a matter of priorities. The child needs its parents to be available for certain acute illnesses or hospitalizations, but they need to get away together occasionally too. The child deserves both parents to be healthy and happy.
If they are able to tolerate changes, share feelings honestly, and live with imperfection, parents will be able to cope with whatever comes their way. Understanding anger and trying to see the positive side of stress will go a long way in helping those around them do the same.
Good family communication and flexibility will help all family members to see every challenge as an opportunity to grow. The entire family needs to learn how to cope together, and find ways to accept the world as it is now. Families should try to enjoy life, focus on one thing at a time, and not take on more than they can handle. Each family member will find their own coping strategies and share them with the others. Parents and children should 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 their lives.