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Recharging a person’s batteries is a necessary step of managing all of the obligations and activities for which parents of children with Cerebral Palsy are responsible. The hustle and bustle can take the wind out of the most energetic and dedicated parent, and for that reason, it’s necessary to know when to take a break.
Sometimes, parents have mixed feelings about taking me-time, but when they can set those feelings aside and relax, their children will realize several benefits. The most important is that a rested parent is better prepared to assist a child, manage a home and connect emotionally with family members, and others.
Wanted: A Moment of Rejuvenation
It’s something that many parents wish they could do, but can seldom schedule into their busy day – a set amount of time to relax, wind down, and reflect on their experiences. And yet, it’s something that every parent – and this is especially true for those that are parenting children with disabilities – should make a priority.
When a child needs additional assistance with tasks like moving from place to place, using utensils, playing games, and other activities that most children tackle once they reach a certain age, it means a near-constant demand on parents, depending on their situation.
Perhaps a parent is part of a couple, is single, has assistance from family, friends or home care workers, but all have something in common: Finding a way to sneak in some me-time feels like an obstacle that can never, or perhaps shouldn’t, be overcome.
Parents of disabled children already face challenges, and more than other parents, experience a heightened level of stress, according to several studies that examined the effects raising a child with special needs can have on parents, and the family as a whole.
Data collected for a 2008 study by Ha, Hong, Seltzer and Greenberg studied the longitudinal effects incurred by parents. The study determined that parents of children with disabilities exhibited higher levels of stress, as well as psychological and physical symptoms not experienced by the parents of children that don’t have a disability.
It’s easy to see why this occurs. Parents of children with disabilities have more duties to fit into a finite amount of time. They often must pull back on their work schedules; personal relationships with their spouse, other children, coworkers, friends and family. And, when a parent feels the need to take a moment for his or herself – they often feel guilty about taking time away. These feelings can, for the parent, make coping a challenge.
The good news is that it’s not only possible to take a break; it should be considered imperative. Taking time out for oneself does not mean a month-long trip to Maui – one needs to be realistic – but it can be as simple as taking 30 minutes to an hour a day to focus on individual needs and desires, including ones that exist outside of responsibilities to their child.
Taking a break can be a real game-changer not only for an overwhelmed parent’s well-being, bus also their child, who will receive attention from a re-engaged and fully-energized parent. In the meantime, the child establishes interaction with someone other than their parents; further developing their socialization skills.
Rest and relaxation
For parents of children with special needs, the sources of stress can be numerous, and formidable. The level and importance of caregiving (managing grand mal seizures or aspiration, for example) can cause a parent to feel they are “sacrificing” or “giving up” areas of their own wants and needs to meet the demands of caring for their child.
Chief among these stressors are physical constraints of time and energy, and how these dovetail with that parent’s expectations of their roles and level of responsibility towards protecting their child’s health and welfare.
When parents feel strongly that they are the only person with the capabilities to properly care for their child they can fall prey to the ‘Martyr Complex’ which is a condition spurred on by a perpetual feeling of self-sacrifice out of love or duty. Leaving the child in the care of a friend or family member becomes an unthinkable proposition.
Often times, these feelings are rooted in a parent’s concern for their child’s physical well-being and their own perception of their parental responsibility. This, especially when combined with the volume of day-to-day activities a parent undertakes on their family’s behalf, can lead to burnout – quickly.
Another counterproductive belief that plagues parents of special needs children is the contention that a parent must sideline their own needs in favor of their child’s, 100 percent of the time, without exception. Unhappiness and unfulfillment can be experienced, even unconsciously. When this occurs, relationships with spouses, other children, family and friends may suffer. This can lead to feelings of loneliness and isolation.
Striking the balance between realistic expectations and desired outcomes, and identifying a plan that will make room for breaks – big or small – go a long way to replace burnout.
Ideas for rejuvenation
The kind of breaks a parent should take will be heavily dependent on several factors, including the physical and cognitive capabilities of a child, the size of their family, whether or not a spouse or significant other is in the picture, the availability and affordability of alternate caregivers and the age of the child.
No matter what resources a parent may have at their disposal, he or she will need to use planning, goal setting and creativity to add breaks into their daily lives.
For short breaks, why not awake an hour earlier, or stay up and hour later, than the children? This gives a parent a daily opportunity to focus on their own needs; they may simply rest, take a long bath, have a cup of coffee or a glass of wine, or read a book? Or, it can be an opportunity to re-connect with hobbies, interests, or even a partner.
If a parent lives with a spouse, explaining in an honest and forthright fashion why a break is needed and how it will benefit family relationships may help all involved. Make a plan to take time away from the family, guilt-free. That could mean taking an exercise class, a college course, writing in a journal or blogging, taking a walk around the neighborhood, or having dinner regularly with a friend or loved one. Equally important, the parent must also allow for the same consideration for their partners.
Less frequently, parents may also avail themselves of various community resources, including support groups, parent groups and programs that allow them to connect with other parents and professionals in a relaxing environment where parents can be free to express how they feel.
Importance of sharing your child
It’s important for parents to essentially share their child – let others in their family or circle of friends know what their child needs, and how to take care of them. This way, a parent will have confidence and trust in others that care for their child when needed. The child will have the gift of warm and supportive interaction with people outside of the immediate familial unit to help develop social skills and relationship bonds.
Doing so can help parents, particularly in emergency situations. If a parent is called away to an emergency with another child, in an unfortunate accident, or even hospitalized for an extensive period of time the child with special needs will have an existing bond and trust with others who are equally able to meet their needs. In the unfortunate situation where a parent unexpectedly dies, the child will be able to transition smoothly with other supportive individual’s that understand their needs and nuances.
One solution to the break conundrum is respite, or planned and organized time away from a child.
On the surface, that might not sound like a desirable solution. However, depending on where a family lives, the options for respite are plentiful – and provide opportunities for recreation and positive experiences for a child.
Respite can take many forms. It can be provided in-home or off-site, for temporary, emergency, casual or regularly scheduled periods. They also vary in the level of care provided, whether general sitting to extended skilled care programs.
Some respite programs, if they are extended, include utilizing skilled care facilities. Those typically are not suitable for casual breaks, but there are options that are designed to provide temporary relief in emergencies.
Respite care is typically provided by trained individuals or respite care agencies that specialize in recruiting, qualifying, training and managing a host of caregivers to meet varying degrees of care demands. Families can be matched with caregivers according to their child’s needs, and the caregiver’s qualifications and experience level.
In-home options include a caregiver who arrives at the home for a few hours to provide a parent the opportunity to accomplish other household duties, or leave the home entirely for appointments, shopping, or breaks.
In-home care can often be sought through social service agencies, charities or non-profit agencies, as well as home health agencies. State human services departments have daycare licensing services and can be a contact source for referral to licensed caregivers and care facilities.
Out-of-home respite options can be immensely helpful to parents and beneficial for children. Respite options that are outside of a child’s home include recreational programs, host family programs, and respite centers.
Recreational respite can take place in several settings, from nursing facilities to non-profit centers to camps for children. These programs are administered by trained individuals; the activities they provide typically include sports and arts.
Host family options are available when a trained volunteer or respite worker is licensed to take care of a child in their home for a pre-determined period of time. This can be an attractive option to parents because he or she will know that the person with whom their child will be staying is trained, licensed and capable to meet their child’s specific needs; some care for more than one child at a time.
Among the benefit for children includes the opportunity for recreations, the ability to socialize with young adults their own age with which they have something in common, and the option to take part in activities in unfamiliar surroundings that are independent from family members.
In the United States, there are respite programs in all states offered to parents of physically and cognitively disabled children. The scope of such programs, program requirement, and their cost varies widely. A parent’s ability to qualify for financial assistance for such programs also varies.
Respite opportunities vary from region to region, and country to country. Whether the programs are free of charge, billed on account, or pay as you go, differs. In some countries, nationalized medical programs cover respite services, but do not cover all options. In the United States, some private insurance covers certain respite services; Medicaid coverage may also provide for respite services in certain circumstances.
In the event that parents cannot identify any financial avenues to help pay for services, some social services agencies may offer sliding payment schedules based on income; some may be able to offer programs free of charge if the agency has identified funding to pay for the service.
It’s good for the whole family
Taking a break is not only something that parents should do for their own piece of mind; they should do it for their child.
By taking time out every so often, a parent has an ability to re-charge their batteries, and when that occurs, he or she will be confident that they are making the best decisions regarding their child and their family as a whole.
It’s something all parents need, and there’s no reason for a parent to feel guilty about taking time for his or herself. Everyone has limits, and it doesn’t help a child if a parent is overwhelmed, or irritated. This is especially true because children take in everything that surrounds them, and parents don’t want their child to believe he or she was a source of frustration.
The best sources for a break are the same ones that can be found in everyday life. The way that a parent can ensure that they take a break when needed is to share their child, with family members and friends. Allow family members to learn how to care for a child — these folks will likely be pleased to be able to spend one-on-one time with the child because it gives them the opportunity to know them better. Parents should remember that the people in their child’s immediate circle likely want to help, not be a detriment or a stranger.
Another idea is to join a peer or support group. This allows parents to discuss their hopes and fears with like-minded parents, and, provides valuable relationship-building opportunities that will create the potential for play-date arrangements and other get-togethers that serve as an opportunity to socialize for a child, and an opportunity to rest for a parent.
The extent which a parent with a special needs child needs rest and relaxation cannot be underestimated. The key for a parent to take a break without having negative feelings resides in their ability to realize they, and their needs and desires, are part of the bigger picture for the entire family.
Take a break today and feel real good about it!
A message can be verbal, or something that’s felt in the heart. What all messages have in common is that they can influence our perspectives for better or worse. Luckily, by gathering positive messages, the bad ones can be cast away.
- Accept Help
- Celebrate Your Child
- Dare to Dream
- Experience Magic
- Find and Foster Creativity
- Gain Perspective
- Get Your Mojo Back
- Keep the Family Together
- Let Go
- Love without Barriers
- Pat Yourself on the Back
- Plan Ahead
- Pursue Happiness
- Reinvent Normal
- Share Some Love
- Take a Break
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