3 Mindset Shifts to Build Resiliency
During my years as a hospital-based child life specialist in the United States, I provided psychosocial care to hospitalized children and their families. Essentially, my job was to use child development along with stress and coping theories to predict potential stressors for the child. After making a quick assessment based on developmental age, diagnosis, family strengths and support, previous experiences, etc. I’d work my child life magic to help shift any perception of threat the child might be experiencing so that they would feel less anxious and more in control. Under these circumstances, kids of all ages could take an active role in their own medical care, allowing them to thrive physically, emotionally, and developmentally. I was part of a team of health care professionals who were dedicated to treating the whole child within the context of their family culture.
When I became an expat and then a parent, the empowered patient advocate in me was quickly silenced by an awkward language barrier. The differences in the local hospital pediatrics culture and patient-care practices were disorienting.
I felt helpless in preparing my child for painful or frightening procedures because I was not informed and didn’t have the language skills to inquire or clarify. Based on my thousands of previous child-centered hospital experiences, I made assumptions that set us all up for failure.
For example, I assumed my preschooler would be prepared, given numbing spray, and distracted while the doctor attempted to push a nostril-sized tube with a camera on the tip into his sinuses. When he struggled and cried, she gave up immediately and said it would be impossible to do complete the procedure. Had I had some information ahead of time, I could have helped him. I could have helped her. Had we be able to work together, all three of us would have benefited.
I felt like a failure as a parent and a child life specialist.
As my language skills improved, so did my confidence in dealing independently with medical issues. However, minor medical events like allergy testing and ENT (ear, nose, throat) procedures got me thinking about parents like you who are globetrotting with a child with a serious medical condition. You are juggling languages, diverse medical systems, prescriptions and medical equipment, education programs, and varying philosophies about treatment protocols.
Right when you've got it figured it, your family receives a new assignment. It can feel like the rug is being pulled out from under you again and again; that's not even taking into consideration the needs of the other children, your marriage, and the usual adjustments that need to be made with a move.
So Much to Consider
From country-to-country, the diversity in beliefs around your role as the parent of a child with special health needs can be confusing. Are you part of the care team with valuable insight and information, or are you expected to act as the silent and obedient recipient of medical "truth"?
You may have school and social issues to address, not to mention your child’s emotional and developmental well-being as they deal with all the usual transitions that come with a new assignment. As a family, the mental and emotional flexibility you all must develop in order to adapt and thrive may seem impossible.
You are looking for continuity, consistency, and a high quality plan of care that makes sense. You want your whole child to be recognized, for their physical and emotional treatment to be personal and aligned with your family’s beliefs and values.
How do you manage all this when crossing cultures?
What happens when you begin your journey in a culture that views you as a vital part of their multidisciplinary team, but the next culture marginalizes your contributions?
What decisions should you make when the medical team in one country believes it has the “right” solutions, but doctors in the next country have a different set of “right” answers?
How do you make sound decisions when you receive contradicting advice and input from medical personnel?
Mindset and Action: You've Got This!
There may be as many answers to these questions as there are families abroad navigating healthcare. And still, there are specific things you can do and a mindset you can nurture that will help build the kind of resilience that not only gets you through it, but makes you (and your family) more engaged, confident, and courageous than ever before.
Much of the advice below comes from parents who have been where you are. Globally mobile families are hardy and resourceful and this is only the tip of the iceberg! If you have specific tips to add that have worked for you, please contact me and I'll get the word out!
RESILIENCE MINDSET SHIFT #1
FROM “FOLLOWER” to “TEAM LEADER”
You are the subject matter expert on your child and the constant in your child’s treatment. Knowing their coping style and how to support them, being proactive, and thinking of yourself as your child’s health care coordinator or multidisciplinary team leader will shift you out of helplessness into a more active, empowered state.
From the start, if possible, ask your child’s physicians to write in your child’s medical records in English, to avoid having to have them officially translated every time you move to a new country.
Before you move, ask your child's doctor to help you with referrals for your next destination. If your doctor is unable to help, ask around in online expat groups. There are others like you!!
At the same time you ask your current medical provider for referrals, you can also request the release of your child's medical records. Carry the originals with you on the plane and have copies made for the new medical personnel. Consider uploading the most important records to cloud storage platforms like Microsoft Drive, Google Drive, iCloud, or the super secure Spider Oak.
Be open to the idea of “interviewing” several doctors before deciding which one fits, and though it seems obvious, choose medical providers with whom you can communicate easily. If this is not an option, organize for translation assistance. Some hospitals or health districts provide liaison services that help with translation, but be prepared to coordinate your own translation. You may have to pay someone, or simply identify someone you know who would be willing to be available virtually or via speaker phone at the time of your appointment.
If you're new at this, educate yourself to the best of your ability. Check out a variety of national websites related to your child’s condition. Look for (or build) a network of parents that make you feel hopeful and supported. Find a mentor who’s parented through the same medical condition.
STRESS and COPING STYLES
Pay special attention to how your child copes best under stress and what triggers a stress response.
Is she someone who likes to have all the details way in advance or likes to practice first? Or, have you noticed he is a "worrier", someone who copes better with less information and time to think? ( Not sure? Let's explore this together.)
Why is this important? Because you are your child's main information filter. You know how they face challenging situations. If multiple procedures or treatments are coming your way, it's important to set the stage for success. Healthcare experiences can be powerful opportunities for growth and potent self-esteem builders.
All children have a dominant way of dealing with potentially stressful events.
Some are sensitizers; they feel calmer and more in control when they know every detail and have time to plan
Others are catastrophizers, using details to feed their worst-case scenario ruminations. They want details, but experience an increase in stress when too may details are shared too early.
Minimizers, on the other hand, want the details broken down into manageable chunks over a period of time. Initially, they downplay the information they receive in order to cope with uncertainty. They may need more time to process and prepare themselves, coping best one challenge at a time.
Deniers do not want the information and push away what they do know. We don't always have a clear picture of their fears and because they don't ask questions when they don't understand. This leads to untrue assumptions and avoidable misunderstandings.
HOW CAN I BE MORE PROACTIVE?
Parents like you stress the importance of advance planning and preparation. Avoid getting stuck in reaction mode!
Before, or shortly after you arrive in a new country, locate the nearest hospital emergency room, pharmacy, and pediatrician’s office. Get registered immediately.
Be sure you know where to go if the pediatrician’s office or local pharmacy is closed. They usually post off-hour or on-call locations and numbers for nighttime and weekend assistance.
As soon as you move in, post emergency numbers where everyone can see them. In the local language, write out what to say in an emergency.
If your child or anyone else in the family has a life-threatening illness, practice emergency drills with all members who are old enough to get help.
SCHOOL and SOCIAL LIFE
Get school nurses, counselors, and teachers on board in empowering your child. If it seems right for your child and the setting, explore opportunities for him to develop leadership skills and raise awareness about her condition.
One parent of a child with type 1 diabetes, requiring close monitoring, chose to host social activities like sleepovers at their house allowing her child to participate in normal, age-appropriate social opportunities without bringing undue attention to the situation.
RESILIENCE MINDSET SHIFT #2
FROM TUNNEL TO PRISM VISION
Being able to assert yourself in the most effective way within the cultural context is vital. Intercultural communication training can be especially beneficial in this context. Knowing what is medically necessary, verses what is a cultural belief, takes some greater understanding of the culture at large.
Know that different perspectives can be a good thing, even “liberating”, says Elisabeth, because you get to see that there are many ways to solve an issue. Tame your expectations; be open to “different”ways of effectiveness. Be open to pleasant surprises!
For example, in addition to their daughter's five day hospitalization being completely free, one American family living in a small village near Trento, Italy was delighted to find that fresh goat milk was readily available and at a much lower cost than the expensive processed dairy-free baby formula she'd had to buy for her highly allergic baby in the United States.
RESILIENCE MINDSET SHIFT #3
FROM “Self-care is indulgent or selfish” TO “Self-care is VITAL”
Your self-care is fundamental. It's not selfish to pace and nourish yourself; it's the most loving thing you can do for your family.
Relax and recover. I know it seems impossible sometimes, but that's exactly when you need it most. All functioning systems must recuperate from stress in order to continue normally. If you don't allow for this recovery phase, your stress response never ends. This leads to caregiver burn out.
Give yourself the gift of five minutes. If you end up having more time, even better, but allow yourself five: minutes to be alone, to move the body, to be still, to create, to daydream, to pray, to connect with nature, or to make contact with other supportive adults. Start with five or ten minutes and see where it goes from there.
Prioritize restorative activities. Start interviewing as soon as possible for qualified babysitters or helpers who are undaunted and willing to be trained to care for your child, even if an emergency arises. Once this system is in place, start planning adult time. And, when you do get that time, be sure it's with people who light you up!
If you are stuck and not sure where to begin, work with a coach to help you identify and develop the resources you already have within you, so you can be the healthcare team leader and parent you want to be.
Seek mental health support if you have healing to do.
Acknowledge and feel your grief.
Don’t allow yourself to be isolated. There really are others out there who know what it’s like and can help you re-energize and create solutions.
You can hear a little more about how I use the Core Energy coaching process in working with both parents of kids with healthcare challenges and parents who are experiencing their own health challenges abroad on the Mindful Expat podcast with Dr. Dana Nelson.
For a few tips on how to prepare your child for a medical experience, listen to this conversation with fellow coach Sundae Schneider Bean on the Expat Happy Hour podcast.
Check in with me for a free 15 minute Q&A if you have questions about what you heard!
If you found this article helpful, please like and share so it can be found by more people like you!
Finally, I would love to hear from you. If you've got a healthcare abroad story to share or would like more information about how I can help you and your family build resilience and vitality through healthcare challenges abroad, book an appointment to chat! I'm looking forward to it.