Advanced parenting, p.17
Advanced Parenting, page 17
Say a parent brings their child into the emergency room after their child has had a seizure. After a workup, my team concludes it is a febrile seizure and I explain what that means.10 Next, I’d say, “I have just given you a lot of information about your child’s febrile seizures. It’s important for you to understand, and I know you’ve been through a lot today. Because this is important, I want you to pretend that I’m a friend or family member who you’ll be sharing this information with, so I can be certain what I’ve told you is clear and accurate.”
Though many parents are shy to begin this exercise, once they do, I can congratulate them and validate what they do understand well and correct whatever they misunderstand. Even the most conscientious, educated parent misses things sometimes, either because I was unclear, their attention wandered, or they were tripped up by jargon.
You can also practice this at home. If you’re just starting out with a new diagnosis, you might say to your co-parent, teacher, or babysitter, “I’ve been learning so much about this new challenge, and I can’t recall exactly how much I’ve shared. Would you mind just summarizing your understanding of what my child’s diagnosis and plan are, so I can be certain we’re on the same page?”
This big check-in might feel overwhelming, especially at first, so you can start slowly or with a more specific topic. “I really want to ensure we don’t make a mistake with this medicine, so can you show me how you’ll pull up the dose?” While it can feel awkward at first, incorporating teach-back is a very effective tool for making sure your child is getting the best care.
Teach-back can also help with assessing the big picture understanding of those on your team. In my work with children with type 1 diabetes, I frequently encountered families with personal experience with type 2 diabetes. This may appear to be an advantage—a family member with diabetes might be more adept at monitoring blood sugars, identifying the symptoms of high blood sugar, and understanding why it’s important to control the sugars. Unfortunately, this is not always the case.
Type 2 diabetes responds to lifestyle modifications in a way that type 1 diabetes does not. An individual with type 2 diabetes is less sensitive to the effects of insulin and has some ability to control elevated blood sugar by changing behavior—exercise, diet, sleep, and maintaining a healthy weight. That said, medication is often an important component of care for people with type 2 diabetes. Type 1 diabetes is actually an autoimmune disease wherein the body has attacked the pancreas; the pancreas is essentially burnt-out and produces no insulin. This means that, for these kids, life with diabetes will be different—their blood sugars will never be normal without insulin; they will always be fully dependent on insulin.
But, if you have a family member, nurse, or babysitter who has experience managing type 2 diabetes, they might not fully understand that the child’s blood sugar spikes are not due to their behaviors or dietary habits. They may be inclined to blame the child, which is fundamentally unfair. The goal should be to help these children live and enjoy their best lives, while providing the insulin they need.
If these parents use teach-back to communicate with their caregivers to assess their understanding, they can be sure that the caregivers truly understand the condition so they can provide the best care. If the people involved in your child’s life don’t understand the foundations of your child’s condition, they may make errors or mismanage your child’s care. To refer back to the example above, the “why” of the high blood sugar makes all the difference in how you form your plan and the tone of your day-to-day communications with the child. Checking for understanding of the details and the big picture is an important piece of your work.
An Organized Approach
The next piece of optimizing your performance centers on how you are structuring your work. It’s not unusual for caregiving work to come unexpectedly and begin with a period of uncertainty. For example, James was a twelve-year-old boy in the care of his grandmother. He looked pale and seemed to be growing more slowly than his peers, so she brought him to the pediatrician. When his blood counts were found to be just one-third of the normal level, he was urgently admitted to the hospital. Testing showed that, despite having no abdominal pain and a good appetite, he had blood in his stool and wasn’t absorbing nutrients well. A gastroenterologist performed an endoscopy, which confirmed a diagnosis of inflammatory bowel disease. His grandmother left the hospital with new prescriptions, follow-up appointments with several providers, and a discharge summary in a big folder.
A few years later, James was thriving with his diagnosis and showed up for an intake with me as his new pediatrician. Grandmother handed over the same overflowing, taped-together folder with documentation from more than twenty appointments, insurance paperwork about medication approvals, some camp and school forms, and partial records of dozens of different prescriptions. The folder had all the essential information and some organization. While it was not navigable for me, the packet was working for her. During our discussion, when she would need to reference a detail, she could find what she needed after digging around for a few moments. But when she got up to leave, she dropped the folder, and hundreds of papers mixed up in a big pile on the floor. She almost cried—curating his records took time she didn’t have. While the folder strategy was not doing harm, it certainly was not helping.
My social worker and a hospital volunteer were able to help her. I printed out a one-page summary of James’s medications and current doctors with upcoming appointments, and we added a few other key records—a growth chart and vaccine summary. My social worker and the volunteer found a hole-puncher and an extra three-ring binder and organized his records—not perfectly, but enough so that a few duplicates could be tossed and the important records wouldn’t go missing. We hoped this new model would help the grandmother in the process of following up with multiple specialists, dealing with school accommodations, and insurance battles of medication, but she was mostly excited to leave the three-ring binder at home and not carry the whole pile to every visit.
Investing effort in an organizational plan will help maximize your efficiency and save you time in the long-term. Only you can know what works best for your family and the systems you interact with, but all caregiving parents should be sure to organize their medical information, their space, and their caregiving work. So, let’s break down all three.
Organizing Your Medical Information
Caregiving parents should create or be given by their doctors a care plan. This is an invaluable tool and contains a list of essential contacts for your child’s care (doctors, therapists, educators, etc.), a list of medications and equipment, a list of upcoming appointments, and a running list of questions or concerns.
Example of a Care Plan
Name: Anna
Care Plan Date: 10/9/2022
Date of Birth: 6/15/2016
Medical Record Number: 7233947
Allergies: Walnuts, Amoxicillin
Last Weight: 56 lb
Medical summary / List diagnoses:
Anna was born at 32 weeks premature. She has asthma, reflux, and food and drug allergies. She is nearsighted and wears glasses. She has mild cerebral palsy, wears ankle foot orthotic braces, and received physical therapy.
Care Team
Contact info Date of Last Visit Next appt. Notes
Dr. Fradin
(Pediatrician)
555-555-5555 12/5/2021 3/5/2022
Eye Doctor 555-555-5555 1/15/2022 1/2023 In local office Tuesdays and Fridays
Dentist 555-555-5555 8/1/2021 4/10/2022
Dr. Allergist 555-555-5555 12/2021 12/2022
Dr. Rehabilitation 555-555-5555 6/2021 12/2022
PT 555-555-5555 Tuesdays Ends 5/21/2022 Next IEP 3/2022
Medication List
Lansoprazole
Medication for reflux
10 ml once a day Filled at pharmacy A 777-777-7777 Call a week before refill for prior authorization on Wednesday between 12:00 p.m. and 5:00 p.m.
Montelukast
Medication for asthma
Chewable tablet at bedtime Filled at pharmacy A
Epinephrine Medication for food allergy Use only if needed Filled at pharmacy B 777-7777-7777
Ankle foot orthotics New order can be placed on 2/2022 Supply store C 888-888-8888 Will need an appointment to measure and reorder with Dr. Rehabilitation.
This is a concise tool that parents can share with caregivers from babysitters to teachers, and parents can bring this tool to appointments with doctors and therapists to ensure everyone is up-to-date. Parents should be sure to date the care plan so that if the specific details have been changed, you can know whether someone has the most up-to-date version.
Some families prefer a tangible resource like a notebook or use an annual planner to organize their child’s care—finding it easier to jot notes as things come up. Other families use a digital resource like a shared document in a cloud—this can allow information updated to the minute, and everyone with access to the document will have access to the most updated version. There are other useful electronic tools families can use to organize their care. Electronic calendar notifications can remind you when refills will be due or when authorizations need to be renewed, or to set reminders about future follow-ups before you leave the doctor’s office.
Keeping a file or a few files with reference information about your child’s medical condition can also be helpful. Most of the time you may not need the original reports from when they were diagnosed, but you never know when something might again be relevant if you move or initiate care with a new provider. Digitizing these files and giving them specific file names with dates can make them even easier to find. Similarly, having a saved and searchable list of contacts and resources can be essential so you don’t end up doing the excess work of finding information again and again.
I recommend that all families keep a list of emergency contacts and medications posted in a central part of the home, such as taped to the inside of a kitchen cabinet. This simple safety step is even more important if you have a child with a special health need in your home.
Organizing Your Space
Many families acquire a lot of supplies and medical equipment and need to consider the best ways to organize and store them. We want to keep medication out of reach of young children, yet accessible for parents. Ideally medication should be kept in a cool, dark space; sunlight, heat, and humidity extremes (like shower steam!) can degrade the potency of the medication over time.
Some families store medications for too long, instead of checking expiration dates regularly and throwing out expired medication. Some families actually have a hard time letting go of the leg braces that have been outgrown or will hold on to excess medication and formula just in case. Retaining supplies that are expired or no longer functional can take up important space, and the clutter can make it harder for you to find the medications you need when you need them. I recommend periodically seeing what equipment you can pass along or what medications you can discard.11
Parents often find the process of getting young children out of the house to be cumbersome and time-consuming, especially during that time crunch before work or school. When you add in medications, safety devices, glasses, and the extra equipment or extra time required for some children, the process can become even more chaotic. Families can ease the process—and avoid doubling back for forgotten items—by using a checklist as part of the routine before leaving the house. Other families may find bedtime to be the difficult time of day. Structuring your space thoughtfully to make sure you have what you need at the pain points of your day can make things more manageable.
Organizing Your Caregiving Work
Many families don’t anticipate a lot of work at home. You might get a bill and pay it, but often there isn’t a workplace-style routine established for efficiently tackling complex projects in the home.
When you are parenting a child through a challenge, however, you will find yourself managing complex projects at home. Take a moment to consider if you have allocated space in your home where you can sit down and handle the typical inevitable errands that come up. In this space there should be pens, pencils, Post-its, envelopes, stamps, a checkbook, a copy of your care plan and insurance card, and all the contact information you might need. If you don’t have a set place where you tackle tasks like this, you may find yourself spending extra time finding these key supplies every time an errand comes up.
You may find that batching tasks improves your efficiency. Instead of dealing with tasks as they come in, you can set aside a time to sit down and charge through many of them at once. Many of these tasks are routine and can be batched fairly easily, like the medication refills, the medical bills, or the school’s requests for paperwork. The benefit of batching this work is that not only do you get the work done potentially more efficiently, but you also make that work less of a nuisance during the other times of your week when the interruption might derail you from all of the other things you do. We are notoriously worse at multitasking than we think we are. Trying to find some time in your day to single-task can promote creativity and improve your performance. Maintaining an organizational system can prevent last-minute emergencies and decrease stress.
In this chapter, we’ve discussed a lot of logistics for how your family tackles the complexity of parenting a child through a challenge. This chapter may leave you feeling like there are a lot of opportunities to improve things—whether it’s the way you allocate labor with your co-parent, spend your time, communicate with your team, or organize your life. Please remember that perfection is not the goal. Sometimes one small change can be a big help—decreasing your stress, increasing your ability to focus, or freeing up a tiny bit more of your time to relax or play.
In the next chapter we’re going to talk more about promoting healthy dynamics with others in your home—your co-parents, extended family members, friends, and your child’s siblings. Before we move on consider:
• Is there one area—delegating tasks, time management, communicating, or organizing—where you feel you’d like to improve?
• What would be the benefit of making changes?
• What barriers have kept you from doing this in the past?
• Are there resources that would help you improve the way you’re managing all these logistics?
CHAPTER 7
Taking Inventory of the Rest of Your Family
In my complex-care practice, I often had residents who were training to be pediatricians spend time with me to learn more about helping families facing challenges. For a few weeks, I worked with Elana, a very eager third-year resident hoping to find a job in a similar practice. Ahead of her first visit with a patient, I made sure she knew the history and goals of the visit, and she went in to talk to the family and examine the child.
A few minutes later, she returned and presented me with a summary of the child’s case. Elana started with why the child had been brought in for a visit that day, detailed her exam, and shared a tentative plan. Elana was thorough, she had done a truly excellent job, but I interrupted her before she could further discuss her assessment and plan.
“Who brought the patient?” I asked. Her eyes went blank—she hadn’t asked. A new doctor always remembers to introduce himself or herself, but often makes assumptions about who is present at the visit. Anyone can bring a patient to a visit—it could be a parent, a sibling, a nurse, a grandparent, or an “auntie” or “uncle” (who often is not at all related to the patient). But not everyone is equally knowledgeable and reliable regarding the child’s status. The source of information is essential to understanding the story and making an appropriate diagnosis and plan. When we discovered it was a new nurse who had brought the child in, Elana called the patient’s mom. With a better understanding of why the child needed our help, we were able to make a better plan.
Just as I need to understand who is involved and see things from their perspective, you need to be aware of your own family ecosystem. Your family members are some of your most valued assets—they can help you and support you and love you, but they also have their own limitations and needs that require attention. When you grow up within this ecosystem, you know what you can and can’t ask of your family members. You know who to turn to when you are looking for specific kinds of support and who to avoid with certain hot-button issues. If you make these dynamics more explicit, you may see things more clearly, including the potential for change.
Consider Alex, a child with sensory processing issues. Being around him takes patience. He won’t wear weather-appropriate clothes, loud noises cause him to melt down, and his restrictive diet has warranted professional involvement from nutritionists, feeding therapists, and a gastroenterologist. Perhaps his mother was raised in an authoritarian, “clean your plate” household and, as a result, is reluctant to discuss the issue with her own mother—the first few times the mother mentioned his health issues, Grandma suggested she just needed to be more firm.
If you have a family member or caregiver on your team who you think of as judgmental or uninformed, you may stop keeping them in the loop. It may feel like too much of a drain on your energy, adding stress to an already challenging parenting situation. One choice is to tell them less about the day-to-day situation and not share how things are progressing or the insights of specialist visits. You may choose to do this for a good reason, for example to reserve your energy for other priorities, but in doing so you will decrease the chances the situation will improve. Your caregiver will be even less capable of learning, catching up, and adjusting their attitude to one that is more productive. The gap between where you are and where they are will widen over time.
