Advanced parenting, p.12
Advanced Parenting, page 12
The doctor working with this particular family might check in about the child’s asthma control to get some metrics—how many nights of sleep are interrupted and how many school days are missed—but even these metrics offer limited insights into what life is actually like. In this scenario, the ups and downs are still small, but the daily toll is larger, making this less acceptable to the family.
If the daily load is more than your family can handle, you can talk to your care team about the options you may have. You can discuss options with your team or do your own research to find what’s medically possible. Unfortunately, I’ve seen so many families fall into a state of learned helplessness and miss these potential perspectives. I’ve heard families in this position say things like, “He just will never be able to run and play without his asthma acting up.” Depending on the context of what’s been tried, this is almost certainly incorrect. It can take a while to find the right therapy, but most children can achieve control of their asthma.
Only a Parent Can See
Facing any challenge can be traumatic, and facing challenges that impact your child even more so. Trauma, particularly when recurrent, can induce feelings of powerlessness. Some parents give up hope for improvement and just accept the status quo as their reality. Sometimes this instinct is helpful; you save your limited energy to power through and do what needs to be done. But this acceptance may prevent you from advocating for change.
Say a doctor is seeing both of these families in their clinic: one child has manageable asthma; the other does not. If both parents say, “Yes, managing asthma and allergies is a day-to-day thing, but it’s not worse than before,” the doctor will likely advise them to continue the current plan. But perhaps the second family, the one who feels it all is too much, has the perspective to say, “No, it’s too much; it really isn’t working.” This may be all it takes to advocate for some other options.
Unfortunately, this is one way privilege leads children to receive different levels of care. A parent who has more education, more research, more time, or a more knowledgeable network may have this awareness, speak up, and advocate more than a parent who has less knowledge, less money, a less flexible job, a less knowledgeable network, or faces bias from a medical system.
When a parent does have the ability to advocate and ask for more help, the doctor can dig into the details of the situation and explain what the reasonable options are. Sometimes adjusting the medication—one that’s less of a struggle to administer and more effective—might improve the family’s everyday experience. Sometimes, a larger investigation is necessary. It is possible that the family has a dog that triggers the chronic allergies, which then triggers the asthma. The sad result could be parting with the dog—which would certainly lead to emotional turmoil—but it might make the family’s day-to-day better in the long run.
Alternatively, they could consider weekly allergy shots, even though this intervention requires a lot of time and causes the child some discomfort. But, if the investment of five hours a week for six months leads to improvement of allergies and asthma in the long run, perhaps the time and cost are a better option—and the beloved family dog gets to stay.
In this scenario, the big bump in the middle where things get worse may be one that you consciously choose—investing the time and energy to have a surgery that might lead to better disease control, for example.
Only a parent can know if this investment of time and energy in pursuit of better disease control makes sense. This line of thinking only works for a certain kind of problem, one that responds to intensive intervention. If your child needed allergy shots at the same frequency for the rest of their life, you might say, “Of course this wouldn’t make sense.” If your child has a long-term disability such as cerebral palsy, there may be times when intensive investment makes sense. The child may receive frequent therapy with the goal to reduce pain, reach a milestone, or recover from a procedure. But there may be other times when the priority is to keep things sustainable and do the therapy work only as needed to maintain your current status and prevent complications.
Managing Uncertainty about the Future
Other challenges, such as anxiety, can worsen over time without intervention. If a child perceives social interactions as threatening, she may engage socially less often. Over time she may have fewer social skills and perceive social settings as more intimidating and further withdraw. Parents can contribute to this spiral when they see their children feeling anxious and uncomfortable and make efforts to help. Sometimes parents inadvertently reinforce the idea that the child can’t handle the situation independently or that the situation is scary.1
This is how we imagine a progressive disease or diagnosis that may worsen over time.
If you have a similar challenge that seems likely to get worse, the question is whether by intervening—spending more energy now by investing in finding the right resources to support you and your child in improving things—could alter the trajectory. You could read a parenting book about anxiety or seek out a therapist. Though these things may carry costs, and may even make things worse in the short-term, if you can alter the trajectory to improve things in the future, it may be well worth it.
The lighter line imagines a scenario where you invest energy toward the goal of improving long-term control of a worsening or progressive process.
What makes these decisions especially difficult is uncertainty. While we approach many challenges with metrics and reports, challenges are inherently unique. The anxiety may worsen over the years as social situations become increasingly complex and your child becomes more focused on friendships, but it’s not certain. Some children go through phases and develop and learn skills to improve things without intervention. There is no one exactly like your child and no family exactly like yours. So even the most experienced educator, therapist, or physician may be unable to predict what will happen going forward. You may have the sense that things may get worse, but they may get worse slowly, quickly, or not at all.
This uncertainty doesn’t apply only to mental health or developmental challenges. Parents whose children face recurrent or progressive medical issues such as ear infections cope with similar uncertainty. Recurrent ear infections can lead to hearing damage, severe or resistant infections, interrupted sleep, impaired balance, and delayed motor milestones, and generally worsen quality of life. Doctors can guess which children will have more problems with their ears in the future based on their anatomy and their age. Often these doctors’ opinions are quality educated guesses based on published studies and years of experience, but at the end of the day, it is still just a guess.
I’m sure most pediatricians have seen children who they thought had outgrown the propensity for ear infections catch some virus or become colonized with some bacteria and suddenly have ear infections worsen in severity and frequency. We also may know children who we thought for sure would worsen, who did not.
Knowing the reality of this uncertainty, approaching the question of surgical intervention for recurrent ear infection seems daunting. Some parents might choose to avoid surgery and their child might suffer more infections and end up having the surgery later on. Others might opt for surgery that may not have been necessary. No parent wants surgery and anesthesia for their child unless it’s necessary, but doctors cannot know for sure when it is absolutely necessary. One of the most important parts of understanding the big picture is to see where there is certainty and where there is uncertainty. Sometimes your care team, in an effort to spare you stress, may not communicate with you the full extent of this uncertainty. But knowing this context can guide your decisions.
Example of a Care Map
Another way to imagine your big picture, particularly if your child has complex health-care needs, is to make a care map. Cristin Lind, the mother of a child with complex care needs, first created a care map in 2011 when trying to explain what life as a parent caregiver was like to a group of physicians at Boston Children’s Hospital. In the middle she drew her son and her family in a circle. Then she drew a line out to other circles illustrating his biggest buckets of care needs—school, health, support, legal and financial, recreation, and information/advocacy. From each of these six circles she drew a line to each related individual. Around the health circle was the dentist, the primary care office, the pediatric subspecialists, and pharmacy and equipment vendors. Out of the school circle, lines connected the various therapists, educators, and transportation resources involved in her son’s care.
Care mapping is a family-driven, person-centered process by which you understand what you are already doing. The circles and categories of a care map will vary based on a child’s unique situation. Visually, it communicates both the big picture and the small details needed to support your child. When you make a care map, you have an opportunity to reflect on your situation, think of things that are missing or unknown, or see things that may surprise you. At the end, you have a resource that you can potentially share with team members or family and friends to help them understand your situation. A care map is a snapshot in time, but it can help you remember resources that you may be underutilizing or areas where you need to find more resources. If your child is gaining independence in navigating their own care, working on a care map together or comparing their version of a care map with yours can be a great tool to highlight gaps and differences.2
The Currency of Energy
One of the most useful takeaways from gaining a broader perspective about the challenge you face is that it can help you be more intentional and selective about how you spend your precious energy. Penny was a patient of mine with spastic quadriplegia; she was a wheelchair user, nonverbal, and relied on a breathing tube. She had significant functional limitations due to her disability, but for her family the day-to-day struggles were with her school.
The bus driver smoked cigarettes, which irritated Penny’s lungs. After a fight with the school, he was replaced. But the new driver adhered rigidly to all rules, and if they were late or her wheelchair was not up-to-date with required service exams, she was not taken to school. She had student aids who were insensitive and disrespectful. Penny’s mother was never happy with the number of services allocated by the school’s individualized educational plan for her daughter and was always upset that what was promised was not delivered. For example, the physical therapy plan specified goals about spending time in a stander, an alternative positioning device that would help her stand with appropriate support, reducing her pain due to muscle spasticity and preventing pressure ulcers from sitting in the same position in her wheelchair all day. The school aids would report to Mom that she wasn’t moved out of the wheelchair all week, leaving Mom to feel confused, further eroding her trust in her daughter’s care. She wanted the school to be helping her child, but most of her work with them was to ensure they did not reduce her daughter’s quality of life.
Penny’s mother was a lionhearted advocate for her daughter, always setting meetings, working with an advocate, and following up diligently. But it wasn’t working. Eventually, I suggested she consider alternative schools. Perhaps the school wasn’t able to meet her daughter’s needs and another school could do better. While the mother had many times wished she could move her daughter out of there, she never envisioned it could be a reality. She was spending a ton of energy trying to make the current school work for Penny, but they lived in public housing and Mom worked full-time. She could not afford a specialized vehicle to transport her daughter or private school tuition.
With a massive effort from our social worker and educational advocates, Penny’s mom channeled her energies into looking for alternative schools instead of trying to fix the current school. Nearly a year later, after many tours, numerous bureaucratic hoops, and a lawsuit, her daughter was transferred to a specialized school for children with brain injuries. The school had a much more ambitious plan for her daughter’s care and the personnel to make it happen.
Penny’s care was notably better. This changed two lives, as now her mother finally had peace of mind. She felt her daughter was safer and better attended to by professionals with the training and passion to advocate for her. This improvement in her circumstances was made possible because Mom redirected her energy. Instead of playing Whac-A-Mole with one school problem after another, she put her mind behind finding a better fit and did.
While in her scenario, her team was able to help her identify and redirect her energy, many families have to figure this out on their own. Take a moment to consider where you are putting your energy as you face your child’s challenge:
• Are you being reactive or proactive?
• Are you getting good results from the amount of energy you are spending?
• Are you spending your energy in the best places?
• Are you allocating enough energy given the scale of the issue you face?
When Watchful Waiting Makes Sense
Some problems may resolve on their own, without much intervention. We see this often with speech delays. A father who is now fluent in multiple languages did not speak a word until he was nearly three years old. As a child, he wasn’t offered much analysis or testing, and he was not seen by a speech therapist. He had two sons, and his eldest child didn’t speak at all at eighteen months. Most children begin speaking around twelve months and acquire at least fifteen words by eighteen months. At this point, he was referred for interventions. The child saw an ear, nose, and throat specialist and an audiologist for a hearing test. Then he began thrice weekly speech therapy. Subsequently he began speaking after two and a half, just like his dad. Now he is an elementary honors student fluent in two languages.
When the next child came along, he also wasn’t speaking at eighteen months. The father reflected on the big picture of their family’s life. Thoughtfully, he questioned, “Do we really need to intervene?” I knew this family would have done anything for the benefit of their child—most parents would. But in the context of their family, knowing that father and older brother were both “late talkers,” Dad was hesitant to put his child through all of the evaluations and therapy sessions if they might not be necessary.
Speech therapy has value and can help children in numerous ways, but any intervention takes away from other areas. The child may lose out on regular nap time or spend additional time restrained in the car, the parent misses work for the evaluation, or the visits risk exposure to viruses. And the speech therapy work, while often fun for the child, is not the same as play. The father wanted to understand how to balance his family’s life with the need to support his son’s development.
Many parents might shy away from discussing these decisions with the doctor—many might have taken the referral for the hearing test and early intervention services and decided later whether to use them. But I was so glad he asked, because it gave me the opportunity to help him find a middle road. I could explain why the hearing test was so important, and we could establish care with some trusted, experienced professionals and commit to close observation or a lesser frequency of services that was more sustainable for the family.
By remembering the big picture and communicating openly with the care team, this family was able to receive a more personalized plan of care that made sense to them and met the child’s needs. Seeing your family’s big picture can help you further improve a thoughtful plan.
We should acknowledge that we all only have so much energy. When we devote a lot of energy to a challenge, that energy is taken away from something else, whether it’s your other children, your career, your self-care, your partner, or your friends. When approaching parenting without a challenge, there is always more you can do—such as more enrichment, more physical activity, more quality time, higher-nutrition meals, or extra sleep. But we know that more doesn’t always make your experience as a child or a parent better.
In a medical context, more medications may mean more side effects, more doctor’s visits may mean more unnecessary procedures or exposure to viruses, and extra imaging often leads to incidental findings that can cause harm. For parents, doing more on your child’s behalf or overscheduling them can inhibit their opportunities for learning. Yet we all feel a lot of pressure to do more and sometimes propagate this cultural tendency. This tension has led to books about simple and minimal parenting, including my favorite, Free-Range Kids by Lenore Skenazy. In the book, Skenazy pushes back against the common narrative that children are incapable of contributing positively to their own development and argues that space and freedom to make mistakes enhance their growth. Encouraging independence has thankfully become mainstream.
But when parents approach challenges that threaten their child’s well-being, this awareness is often lost. More is not always better when it comes to helping your child through a challenge. When we set the goals, we aim toward safety and health, but we also acknowledge that well-being often lives in the space between good enough and optimal. Knowing the big picture can help you make better decisions.
• You can be a good parent even if you do not take every opportunity to do more.
• You can be a good parent if you sometimes choose yourself over your child.
• You can be a good parent if you disagree with what the doctor or educator tells you is important.
