Medical care is not enough to address the impact pediatric disabilities and illnesses have on caregivers and family members. These 8 Steps address lifestyle and environmental aspects of care (and self-care!) that are necessary to create a supportive environment for your entire family.
1. Make a Self-Care Plan
You must take care of yourself to effectively create an environment that supports your child, and to maintain a healthy home for your entire family. (This is not about ‘putting the oxygen mask on first” – you are flying
the plane!) Self-care is not a luxury, it’s a necessity
. It’s not easy to prioritize your own needs when there are so many others’, but this is an essential part of sustainable Work of Care.
Creating a self-care plan before you need one helps you make (and model) healthy choices. Proactively caring for your own needs will ensure you have the energy and spirit to care for your child and family, and helps prevent ‘burnout’ and ‘compassion fatigue’.
2. Build a Network of Support
The experience of caring for a child with a chronic illness or disability can be challenging. You will need people who can love and accept your child and family, and support you through this challenging time. (Hint: These may not always be the people you expect!) Families affected by pediatric illness or disability can experience social isolation, unhealthy stress, marital problems and and financial difficulties. These circumstances can affect even close relationships. Know whom you can count on for support.
3. Define Wellness
It is common in Western medicine to think of being “healthy” or “well” as the absence of illness – but for some children wellness may be simply be part of their journey. Define “health” on your own terms. It may be an improvement in social skills, attending school more often, or being able to participate in a team sport. Creating goals that represent milestones will help you appreciate important progress being made – even if your child may not be “cured”, they can be “well” in a way that is specific to their circumstances, priorities, and needs. Your definition of health may change as an illness, context or environment change, but make sure your doctor knows what is most important to you, your family, and your child.
4. Create a Supportive Environment for your Child and Family
Some children with chronic conditions can be extra-sensitive to pesticides, toxic chemicals, and mold, dust or other allergens. Make sure produce is washed thoroughly and purchase organic vegetables when they are affordable. Use non-toxic alternatives to clean your home, and avoid products containing harmful chemicals (this may include everything from cleaning or laundry supplies to house paint). Be aware that some personal care products may contain chemicals considered toxic or carcinogenic.
When a child has an illness or disability their body may represent chaos, confuse them at times, or feel beyond their sense of mastery or control. They may benefit from a home environment that is orderly, safe, and predictable. In our culture it is common to live more reactive, busy lives that may not encourage the rhythms that promote healing and well-being. Rituals, routines, simplicity and order will all help your child (and you!) relax amidst the challenges of an illness or disability in your family.
- Routines Assessment Worksheet (coming soon)
Family and Siblings
A child with an illness or disability is not the only one affected. Other family members, including siblings, experience multiple stressors related to having a child with a chronic illness or disability in their household. Time and family resources may be skewed toward the child with an illness. Social opportunities can be limited, and finances strained. Consider the specific needs of your other children, and how the presence of a sibling with a chronic illness or disability can affect their lives – both positively and negatively.
You, and your child, are the experts.
Physicians, nurse practitioners, teachers and other professionals are an important and useful resource to help you determine the best path to wellness, but parents and children need to be empowered to advocate for their own perspective, needs and priorities. Also, your needs and priorities may change – and that is okay.
Trust your gut, and work to collaborate with health and education professionals who may need some help understanding the nuances of your child’s illness or disability, and the specific needs of your child and your family.
6. Change your expectations
You and your child may not be able to maintain your current schedule of commitments and activities. A good rule at I time of crisis: At least 50% of your energy that was spent elsewhere needs to be redirected towards well-being. This includes attending to your own mental and physical health as you work hard to support your child and family’s.
Personal and professional goals may need to be put on hold temporarily. Family plans may need to be redesigned to accommodate flaring symptoms, or physical or psychological limitations. Try to make each day count in its own way – knowing that an accumulation of good days will keep you on track for when you and your family are ready to recommit to goals and plans that may have been put on hold.
7. Open your mind
For many children with disabilities or chronic illnesses, multiple areas of health and well-being need attention. Interventions such as massage, naturopathy, environmental medicine, yoga practice, meditation, tutoring, acupuncture, exercise, food choices, herbal medicines, and social skills support can help promote healing and well-being for you and your child. While a healthy skepticism is important, be open minded about non-medical interventions and lifestyle choices that could contribute to a positive outcome.
8. Adjust Your Lifestyle
A reduction in work hours, extracurricular activities, and travel or social plans may be necessary. Revise your lifestyle to allow for flexibility. Days off school, travel to doctor appointments, and time to rest, will all be more challenging if you are trying to ‘fit them in’ to your established routine. Remember, symptoms and circumstances may change on a day-to-day basis. You may not always be able to plan ahead, and will sometimes need to make last minute changes to your schedule.
Nutrition can be an essential part of creating an environment supportive of health wellness. This has helped many children with illnesses (such as chronic infections) and disabilities (including ADHD) control inflammation and symptoms. Multiple online resources are available for recipes and ideas about making changes to your family’s diet. It requires commitment, and planning ahead for special occasions and holidays, but it can be an important part of helping your child feel well.
It is challenging to manage medications, cook nutritional meals, make lifestyle changes, and educate yourself and others about your child’s experience and needs. You may need support in building the skills necessary to manage the many areas of life affected by pediatric illness and disability.
Some parents feel overwhelmed or like they are failing, when all they really need is some help learning skills like planning and time management.