Advanced Parenting, page 13
• You can be a good parent if you delay something important for a valid reason.
Some things will not matter later on. If you are late a few times to school, or if your meals are slightly less nutritious than you might prefer, or it takes an extra two months to get a referral scheduled, in the big picture, it probably doesn’t matter. Remembering this can help you feel a sense of peace when you drop a ball here or there while attending to some of the many important things on your plate.
Still, some things do matter. Living in crisis mode long-term can have a cost. I worry most about the demands on your well-being as a caregiver. Parents who are depressed or burnt-out suffer, and they may be less able to help their families. If you are always overstretched because you are pulled in a dozen different directions, and you yell at your kids more than you’d like or you miss the warning signs of deteriorating mental health of your “healthy” sibling, this matters. In my experience, caregiving parents who juggle several balls are more likely to drop one of the balls impacting their wellness than their child’s wellness—though we know a family’s well-being depends on everyone’s health.
Using Your Energy Wisely
A family I worked with had a child, Leo, who struggled to adapt to nursery school. He was introverted and preferred to watch his classmates rather than jump into playing together. His teachers wondered if he might need developmental assessment and intervention because his participation in school was so restricted. He was hesitant to engage with new caregivers and teachers but was loving with those he was close to and he had a few friends with whom he played beautifully.
As I helped Leo’s family make a plan for how to move forward, we had a few choices. We could view the school’s assessment as intended, that what they saw at school suggested a larger developmental diagnosis or disability and proceed with evaluations and therapists. Or we could consider whether the child was the right fit for the school, given that his interactions outside of school hadn’t concerned his other experienced coaches and caregivers. Perhaps another school would be a better fit? Or we could view his challenge as a simpler one—he hadn’t yet connected with the students and made friends; perhaps we could help him make friends by having some small group playdates.
Depending on the nuance and exact circumstances of the situation, any of these might be reasonable ways to move forward, but the best path forward depends upon your bigger picture view of the challenge you are confronting. It may feel overwhelming to make this decision; it’s important to your child’s well-being and you lack certainty. But no matter which path you choose, reevaluation will help to ensure you’ve chosen correctly. In a few months it may be clear that allocating your energy toward more playdates isn’t working and it’s time to get a developmental specialist involved.
By seeing the big picture, you can pace yourself and make more sensible decisions. It’s not always obvious whether your condition is a problem you should either live with or conquer. To further complicate matters, many conditions may be a mix of the two. Consider this child who has been slow to socially acclimate to preschool. Is the problem that our expectations of his behavior are too narrow? Not only do we expect him to express social behavior typical of his peers but to do it on our schedule. Or does he lack the skills to make friends and communicate? Perhaps addressing this need will help him to thrive and enrich his life? While it would be simpler if this were black and white, it takes a nuanced eye to decide whether our challenge is one to be “fixed,” supplemented, and remediated or one where we learn to embrace our children’s differences. Sometimes we need to correct a child’s challenge, and sometimes we need to advocate for greater social acceptance of their differences.
The caregiving parent is the person in the best position to have the big picture and the deepest understanding of their child’s lived experience. It’s not an easy job to make decisions on our child’s behalf, so in the next chapter I’ll dive into some ways in which you can prepare yourself best to meet this responsibility. With the right preparation and seeing a zoomed-out view of what you face, you can select where you invest your energy and plan your life to fit your reality.
As we go on, take some time to consider where you are and what type of challenge you are facing. Imagine how you might look back at this time in six months or six years. If you are overwhelmed, this zoomed-out view of the problem can help. If you are struggling to see the big picture, speaking with your co-parent, family members, or other trusted friends can be invaluable. Sometimes when we are so close to a situation is when it’s most difficult to see the bigger picture, but our loved ones can give us this necessary perspective.
Some questions to consider before we move on:
• Is my challenge big or small, predictable or unpredictable?
• How much day-to-day strain is associated with my challenge?
• Is this challenge long-term or short-term?
• Are things going to stay the same, or might they get better or worse?
• Can I affect the trajectory of what’s to come?
• What’s uncertain about this challenge?
• Have I communicated effectively with my care team, and do they understand what we are seeing at home?
PART II
HOW TO TAKE ACTION
CHAPTER 5
Educating Yourself
Grayson had severe allergies to multiple foods—peanuts, tree nuts, eggs, and soy. His family lived with the daily restrictions and fear well known to families with children with life-threatening allergies. He was the oldest of four kids, and none of the others had food allergies; his mother blamed this on the evolving guidelines on the introduction of allergens. A couple years after his birth, the guidelines changed from recommending delayed introduction to early introduction of common allergens. Because of the timing of this change, she didn’t expose Grayson to high-risk allergens until he was nearly two. In his first couple years of life, she kept him away from nuts and other common allergens because she was doing exactly what was recommended. But by the time his siblings came along the family had a pediatric allergist who shared the updated guidance and supported them through early and regular introduction of allergens.
Introducing allergens later in life could have been a factor in increasing Grayson’s risk of food allergies, but it could also have been a coincidence. He may have been destined to be allergic no matter the timing of when he was given the foods. We’ll never know, but his mom felt a fair amount of guilt and was reminded of it day in and day out as she dealt with protecting Grayson from accidental exposure in and out of the home—on top of the responsibility of raising four children.
Grayson’s mother is a good friend of mine, and even as I reassured her that none of his allergies were her fault, she couldn’t move past her feelings of guilt. To cope, she kept on top of researching Grayson’s condition. If she had missed something previously, she was not going to permit this to happen again. This research led her to attend conferences about food allergies, subscribe to newsletters about food allergies, and consult multiple specialists. At times, I thought, “Maybe she should relax and trust her doctors.”
But she was the first person I knew, despite my presence at an academic medical institution, to talk about oral desensitization protocols. At the time, the concept of inducing tolerance to allergens slowly over time by eating tiny amounts, then consistently increasing the amount of the food, was new. But she was spending time attending conferences and connecting with organizations advocating for novel treatments to pediatric allergies, and because of this work, she knew about this treatment option early. Once the clinical trial about oral induction of tolerance in our city opened, her child was enrolled. After hours and hours of frequent visits, Grayson built up his tolerance to nuts and tree nuts, and he seemed to outgrow the egg and soy allergies. While he had to maintain this tolerance by ingesting a lot of nuts, he can now eat all foods—though the family still carries his epinephrine as a precaution.
Increasingly, these oral immunotherapy techniques have become a standard of care, but my friend’s efforts meant her son was one of the first to test them, and as a result, he benefited from the intervention years before he would have been able to access it through his primary allergist. Her diligence made a big difference for him, and the rest of the family.
While research may feel intimidating and imply deep dives into scientific databases and content accessible only to those with excessive time, money, or intellect, I would argue that research is for every parent. Research can include any method of learning more about what our child is facing and understanding our options. To me, searching online, reading educational websites, listening in on social media conversations relevant to your child’s condition, and asking questions to other parents or members of your team all count as research.
Sometimes, parent research leads to direct benefit. Children can gain access to new technology, new referrals, or new medications that will improve their quality of life. Families facing challenges may find the right school, an appropriate caretaker or therapist, or a great summer camp that will help their child thrive. Research can often lead to smaller wins, too. Many families with prescription medications have large co-pays but can often find alternative medications or discounts from resources like GoodRx, Blink Health, Optum Perks, SingleCare, and other pharmacy discount programs from retailers like Walgreens, Walmart, Costco, and Amazon Prime.
But for some, maybe even most conditions, the benefits of research will be less tangible. You may not change your behavior or find better resources. In these situations, often you still benefit. You may gain context and a more nuanced understanding of what you face. You may confirm the information shared by your care team enhancing your trust in their advice. Research can connect you with other families who share your experiences and questions, helping to make you feel less alone. Research can lead you to gain confidence and comfort.
However, as with Grayson’s mom, research can start to take over one’s life, particularly when it’s motivated by guilt or fear. Determining what is most relevant for your family can feel overwhelming. Even as a pediatrician, my research has sometimes led me down a search engine–enabled rabbit hole and made me feel nervous about concerns that weren’t really important to my family. As with any other part of our life, we can go overboard on a good thing. Too much research can lead to wasted time, unease, or distrust. How can we gain the potential benefits of research while minimizing these costs? This chapter will focus on picking the best sources to trust and asking the right questions to get the answers you need.
Research: Make the Most of the Doctor
My patient Ben had been a sound sleeper for two years, but as he approached his third birthday, he started to backslide. He’d sleep for a few hours at the beginning of the night, and then he’d wake suddenly, writhing around in the bed scratching himself. He couldn’t get the rest he needed, and as a result, he was fussy, tired, and less playful during the day.
Ben had eczema in the past, but it had never been so severe. Though the family had searched online and purchased some new products, Ben had developed a worsening case of chronic eczema, and it was causing his skin to bleed and scab. This wasn’t just a problem for his own sleep; his entire family was exhausted and miserable. They came to me, eager for a solution. I discussed all the common causes of eczema—dry skin, environmental exposures, and allergies—and ways to adjust his environment to help, but their eyes glazed over until I mentioned a prescription. They were not in a place where they had the time or energy to learn—none of them had slept in weeks.
A few weeks later, they came back for a follow-up visit in a better place; Ben’s skin was better, and the cream had helped, but when they stopped using it, they began to see the eczema come back. They had heard some of my advice at the last visit but lacked clarity on what they needed to do differently to keep the skin healthy. They changed Ben’s bathing schedule, decreased the use of fragrant soap and detergent, and tripled the amount of cream and nonmedicated ointment used to promote skin hydration. This time, I felt confident that they heard the information I offered, and I thought that if the eczema did recur, they would know there were more interventions to consider and discuss.
I share this real-world story because it’s important to remember that you can’t learn everything you need to know about managing a chronic condition in one short visit with a doctor—even if your doctor talks quickly and you take notes. Often when you come looking for help or a short-term solution, the main information offered and heard is the plan. You might have been in this situation with your child’s treating professional. The plan offers you a solution and gives you action items to manage. The plan delivers a sense of the implications of a problem and helps answer the most pressing question: What do I do differently this week and next week?
However, it’s hard to focus on a preventive plan when you have an immediate problem that needs to be addressed. Earlier I spoke about follow-up visits, and how sometimes they may not be a good use of time. It’s easy for parents like Ben’s to assume that as a doctor I offered a bad plan—when his skin got worse again, it was likely my fault. But at least I was able to communicate enough of the big picture for them to know there was more we could try.
Ben’s parents chose to lean on the treating doctor to learn about and research his condition, and often that’s a great strategy. Parenting a child through a medical challenge is hard, and while you can learn a lot online or through talking to other parents, your doctor offers curated information targeted specifically to your child with your unique living circumstances, medical history, and family history.
Time spent learning about the root cause of your child’s condition is essential. Understanding the diagnosis will empower you to choose the best plan, but remember that your treating team is a great place to begin your search for information. Before you start researching specific treatment options or the best providers to manage the condition, first consider the fundamental question: Why are you facing what you are facing? Answering this question is not always solution oriented; you cannot always “fix” the cause of your child’s challenge, nor do you always want to if their condition—disability, genetics, or diagnosis—is fundamentally part of who they are, but understanding the root cause will help guide your next steps forward.
In Ben’s case, with his eczema, it was important for his parents to understand that the integrity of the skin and immediate environment would affect the severity of the condition. Changing his skin-care routine made it possible for his parents to address the root cause and manage the condition with less medication. For another condition, perhaps a mood disorder like depression, it’s unlikely you could control the symptoms with one behavior change, because depression is inherently too complex.
You can’t always pinpoint the cause of a condition—usually it’s some combination of genetics, environment, and bad luck. But you can come to understand what is happening to your child. Researching depression can still help you learn that there are some behaviors that may have an impact—adequate sleep, physical activity, and connection. But you’ll also learn that depression has a biochemical basis with structural and functional changes in the brain. This knowledge may lead you to implement some helpful lifestyle changes for your child but retain the perspective that a medication may be necessary. This information can help you to locate and select an appropriate care team.
As a conscious and engaged parent, the idea of learning more about your child’s condition might seem obvious. Of course, you’d take the time to read up on the condition and gain important knowledge to aid in their care. But I can tell you that for most people, it can be deceptively difficult to find useful information on your own. When you are facing a challenge, often there is an overwhelming quantity of information to take in and so much content of variable quality.
The best place to start is to talk to your child’s doctor. They are there to support your family, and you should take advantage of them as a resource. If you are given a diagnosis, you should be sure you understand it. Ask questions.
Some questions you might ask:
• Will this go away?
• Why did this happen?
• Is there something I could have done to prevent it?
• How big of a deal is this?
• What is the urgency of addressing this issue?
• What happens if we do nothing to address this?
• What is likely to happen in the short-term and long-term?
• Do I need to change things at home or school in the short-term or long-term?
• Are other problems associated with this condition that I should look out for?
• Is this a very well understood condition with a clear plan, or is this an area where professionals disagree about the best plan?
• How will we decide on the right plan?
• Where should I go to learn more?
If you have been facing your challenge for a longer period of time, you might already feel like an expert, but there is always more to learn. The best source for your child’s condition will vary, but a goal should be to have curated resources to help you understand your child’s health. If your child has a condition supported by an advocacy organization, this is often a place to start. With my own health, I’ve been in a national research study about Wilms’ tumor survivorship for nearly my entire life. When I became involved with the study at my doctor’s encouragement, I was automatically subscribed to the advocacy organization and their newsletter. The newsletter contained more relevant information for me than nearly any other source.
When your child’s condition fits well within an advocacy organization, that’s a great place to look for information that is relevant to your family. In addition to informational websites, social media feeds, and podcasts, often these organizations offer support groups and opportunities to connect with other parents. Social media groups can help with this too; when new articles that are relevant come out, you may be more likely to hear about them from a group with shared concerns.
