Advanced Parenting, page 21
• Inform everyone in your home of the new expectation, consider posting the rules, and be precise: “Now that Bobby has had a few days to recover from his surgery, we’re going back to the rules from before—only one TV show a day.”
• Sometimes you don’t know how your child will react until you try. A new rule can result in a short period of “testing” or bad behavior, and a real try can mean committing to something for a few days before you know if the new plan is working.
• Be firm. When you feel ambivalent about the plan, sometimes that adds to confusion and reduces the likelihood of the limit working.
• Sometimes you may institute a rule that does not go well. Give yourself grace and remember that you can change your mind and try other techniques.
• Even when a child is suffering, sick, or in pain, if your child is hitting, biting, or physically harming others, it’s important to set limits to protect everyone.
Setting expectations, limits, and rules is part of parenting, but often it can be confusing. In my experience, parental intuition can be really helpful as you make these decisions.
Maintaining Open Communication
Parents often prepare for big talks with their children. A family has just gotten a new diagnosis of inflammatory bowel disease, and now the family will pick a day to sit down, inform the children about the diagnosis, and explain how the treatment plan will change life over the next few months. These big, intentional talks may help start conversations but deliver only a small percentage of the actionable information and support your family needs.
Just as it’s a process for caregiving parents to accept information and learn, children also need time to do this. We know that adults can only absorb between 40 and 80 percent of what they are told in a doctor’s visit.2 Children likely process less, especially if they do not perceive the information as important or understand the context. Because of this, no matter how excellent your big talks are, you should expect that questions and learning will continue over time. A child progresses in their understanding, their condition evolves, and the plan changes, and all of this necessitates more communication. To make matters even more complex, the child also develops and changes their capabilities over time. Even when things improve, a child will look back and ask questions to help understand what they went through.
To facilitate open communication, it’s a good idea to build in regular opportunities to talk about the challenge and about other parts of everyday life too. Not only does this regular communication inform your family, but it also helps foster connection. Some families use a daily check-in to share what were the best and worst parts of the day. Other families might use a family meeting every week to go over the parts of their life that matter, from logistics to goal-setting. Some children open up when relaxing before bed or on the drive commuting to school.
These check-ins provide opportunities for children to be reminded of upcoming events and ask questions. You can share the idea that all feelings and ideas are welcome. Parents can model goal-setting, problem-solving, and asking for help. Communication can increase cohesion within your family and make you feel more like a team.3
For children who are not verbal, it’s still essential to maximize their capacity for communication. Augmentative alternative communication systems—including low-tech solutions like pointing to a picture on a communication board or higher-tech options like a speech-generating device—can improve overall quality of life and participation in family meetings.
Functional communication with your child can also facilitate task management. When you are delegating tasks, sometimes it’s easy to feel fatigued by nagging individuals who may not always listen. But mixing up your style, communicating with humor or with writing, can help you catch the attention of your family members and maybe promote their listening. If you’re trying to help your child learn to take their medication on their own without a reminder, you can put a stop sign with a picture of a pill bottle on the door and point to it when leaving the house. One day when they forget, you can make a joke out of it and pretend to be the medicine bottle and say, “Oh no, you forgot about me,” and pretend to cry.4 Humor and playfulness can help relieve all kinds of family tension and improve communication, including a family facing a challenge.
A Positive Communication Strategy
Nicole was a nine-year-old with anxiety and dyslexia. Sometimes talking about her conditions seemed to make things worse. When her mother discussed this with me, I reflected back the way she would talk about her daughter’s conditions. The mother described how Nicole found her “intrusive, uncontrollable anxiety” upsetting, and her “failure to learn to read” was interfering not just with academics but also with her ability to make and keep friends at school.
Together we reflected on the power of words. Nicole’s mom had been so busy balancing all the caregiving demands and raising her other children, she had not reflected on how she spoke about her daughter’s challenge. The words she used were correct and described Nicole, but they also emphasized the conditions as fixed and negative.
We wondered together if she might rebrand these issues at the next discussion. We brainstormed how we could explain to Nicole that her brain works differently, just like every brain does. Some parts of her brain might make her life better and easier like her creativity or her attention to detail, but some parts might mean she has to work harder at things. Luckily, she had her mom, her doctors, and her teachers by her side to help her figure things out.
Children deserve honesty. When a parent speaks to a child disingenuously about their condition, this may compromise trust and attachment in the long run. When a parent instead intentionally chooses ways to focus on a child’s power over the condition, the strength of the child’s support network, and the hope for improvement over time, this can change the tone of how a child sees their condition. When you are able to point out their strengths and advantages as you discuss their challenges, you can remind children of their inherent capability.
Sparing Children Our Difficulties When We Can
A mother is understandably very anxious and stressed about her child’s upcoming blood draw. Perhaps she is sensitive to needles herself and experiences with her other children having blood work were traumatic for her. The mother may talk about the blood draw a lot with the child and others, seeking support. When they walk into the room where the procedure is to be done, the mother’s body language may be uncertain and her tone of voice with the phlebotomist is questioning. The child picks up on Mom’s fears and skepticism and becomes anxious and hesitant, too, resisting the procedure because of fear. While the child probably would have worried and cried anyway, the mother’s way of coping with the stress made the situation worse.
I’ve seen this scenario play out many times, and I want to emphasize that I’ve been on the parent side of this too when my children have had general anesthesia for surgeries. The anxiety and distress you feel when your child is going into a procedure can feel enormous and unavoidable. Only a robot could walk into some of these situations without stress. Some children are very sensitive and perceptive of a parent’s stress. We can’t always control our stress level, but we can control when a child is informed about things, the actions we take, and the words we use.
Parents can exercise mindfulness and check in with themselves during these stressful moments. This can give you the opportunity to choose how you respond with intention. You can take a moment to ask yourself if your behavior is helping or hurting your child. You should particularly consider your body language and rapport with the phlebotomist, doctor, or surgeon, as your child is watching. If you show your child that you know them and trust them, this can meaningfully decrease the anxiety your child feels about the novel situation.
If you want to talk to the doctor about something the child may find upsetting, you can try to do so over the phone or while a nurse or secretary in the doctor’s office sits with your child. While you may have weeks of anticipation before a surgery, likely a young child doesn’t need to know or worry for weeks because we can protect them from this prolonged anticipation. Often as a parent, you have an opportunity and a responsibility to set the tone for your family. When you feel overwhelmed by what you face as a caregiving parent, when you are able to cope with that stress, you’ll set your child up for success.
Allowing Your Children Input and Control
Giving children choice helps them feel like they have power and control. Children tend to be happier and often gain confidence with practice making good decisions. Because children who face challenges often have more things they have to do, choice can be even more appealing and empowering. The entire caregiving plan is designed to help your child and affects your schedule as a parent, but it’s their future, it’s their body, and it’s their growth and development, so of course they deserve to be a central part of the decisions about their health.
While this sounds obvious, when things get busy, caregivers have little time, patience, or energy to devote to this goal. Medical and educational systems aren’t always designed to incorporate input from children. How can we allow children input?
Consider Nella, a six-year-old girl with unclear speech. After a few years of hoping she might grow out of it, the pediatricians and educators have agreed it’s time for speech therapy. The caregiving parent decides that speech therapy is not optional—it has to happen even if Nella doesn’t want it, because it’s for her benefit. Still, the plan to execute therapy might take Nella’s perspective into account. Would she prefer teletherapy or in person? Would she prefer to practice her exercises with Mom or Dad? Would she like to pick a prize, like a special movie or book, after she has done it for a month? Some more sophisticated children will have the interest and ability to dig in on all these decisions, but some children starting out may feel overwhelmed by too much choice and control. As a parent, you know your child’s personality and preferences, so you can best navigate this balance.
Children who are unable to cognitively and verbally engage in these discussions can still express their feelings. A child may show you with their behavior and expressions what they prefer. Sometimes caregiving parents have to be the ones to translate and help advocate for these preferences.
We know that as children grow, their needs evolve. Many parents feel that as soon as they figure out a stage of parenting and find a rhythm, something changes. Considering where your child is in their developmental progression can help us predict and prepare to meet their needs and adapt our parenting strategies. Setting limits, communicating with your child, and promoting their independence are important parenting goals for all children, even when they face a challenge.
In the next part, we’ll discuss coping with some of the difficult emotions that accompany facing a challenge. We will begin by considering how part of being an effective caregiver is confronting some difficult feelings. While these are sensitive topics not often shared in public circles, many if not most parents confront feelings of grief, guilt, anxiety, anger, and shame at some point. We’ll talk about coping with these feelings and when to consider getting extra support.
Before you move on from this chapter, think about some important considerations:
• Consider what stage your child fits in and what needs are most prominent.
• Reflect on your limits; do they feel too lax, too strict, or just right?
• Think about your communication frequency and the underlying tone.
• Imagine things from your child’s perspective; can you find ways to incorporate their preferences into their care?
PART III
MANAGING EMOTIONS
CHAPTER 9
Confronting Hard Feelings and Burnout
Derrick was a ten-year-old boy who had been struggling in school. Despite tutors and extra parental investment in his schooling, things were harder than they should have been. His parents sought out evaluations in hopes of finding a better path forward for their son. These evaluations found that their son did not have specific learning disabilities or an underlying condition like ADHD. However, the testing did reveal that his intelligence or IQ was lower than expected.
Although the results didn’t indicate a disability, for this family, it was disappointing news. The family had hoped the problem was one that could clearly be solved. If he had a learning disability, he could benefit from an educational intervention. If he had ADHD, he could take medication. But instead, the family was left with a bigger challenge: acceptance.
When I chatted with Derrick’s mother about it, I asked if she thought her own IQ might be similarly low. She started to cry. She confided that, yes, she did think her son’s IQ and educational challenges were very similar to what she herself had experienced growing up. She felt guilty. She wanted to give her son every advantage and not pass on what she saw as a liability.
When we dug deeper into her history and her experience growing up with a lower-than-average IQ, it became clear that the most difficult thing was not the IQ itself; it was that those around her had not understood it. Her accomplishments were compared to others with different strengths, and important people in her life often saw her as coming up short. Her teachers and parents had labeled her as lazy, when she was really trying her best. When she was growing up, the path to success seemed so narrow: good grades, high test scores, and entry to prestigious schools.
She felt bad. Derrick’s mother struggled to process her feelings—she felt sad, guilty, angry, and worried. As I struggled with how to best support her in this challenging parenting moment, I reminded her that she was the perfect parent for her son. I told her that everything she had learned from her experience could help her to help her son. She knew her son’s capacities, and so she could choose to focus on her son’s work effort and growth, rather than comparing his test scores to those of her peers.
Her family could choose to highlight and lean in to her son’s strengths. They could help him find activities that would allow his exceptional social and emotional skills, his caring nature, and his athleticism to shine. They could stress that those talents would open a lot of pathways to a fulfilling life and that he is perfect just the way he is. Together, they could help their son select goals that made the most sense for his skills and strengths. In the end, this knowledge was a gift that would enable them to advocate for their son.
When working with families who are coming to grips with a difficult truth, be it a disability or a diagnosis, I’ve often relied on a positive pivot: “I know it’s hard, but now that we have this information, we can do better.” We can’t always fix the root cause, but we can modify the environment and our own expectations to improve the outcome.
This begins with understanding that, no matter your child’s challenge, it is not your fault. Our difficulties and our “weaknesses” as individuals make us who we are, as much as our strengths. While we have a tendency to look for the root cause so that we can “fix” it, sometimes we have to acknowledge and accept that things are just the way they are.
We have the most control over ourselves: our feelings and reactions to the challenge we’re facing. Most parents, when facing a lot of stress, feel terrible. And it’s not easy to know how to feel better when you feel bad. But I encourage parents to take their own feelings seriously, so that we can not only care for ourselves, but be better equipped to care for our children. When you know why you are feeling bad, you can make a plan to feel better. When you explore why you are feeling bad, even if you can’t fix that feeling, understanding where it’s coming from will help you.
When I counsel children about anxiety and sadness, I often use the analogy of a cloud. It’s okay and expected to feel rained on or in a dark place, but when you have the deep understanding that those feelings will pass, it can help you endure the tough times. This analogy also helps to remind children that feeling bad doesn’t make them bad. Even amidst tough times, they are always surrounded by people who love them.
In the following sections, we’ll explore the negative feelings many parents experience when their children face challenges. While many of these topics are sensitive and uncomfortable to consider, it’s necessary to explore them. Precisely because they are so difficult and some carry stigma, I’ve found that parents frequently feel alone and as if they cannot talk to anyone about this. Many parents try to tough it out alone, but glossing over or ignoring these hard topics will not make them go away.
Sadness and Grief
As parents, it’s difficult for us to witness our children experiencing hardships. It could be your challenge is something more temporary, such as appendicitis or a broken bone, and seeing your child ill can make you feel sad, but generally speaking this type of challenge is easier to recover from. Others may have a child with a disability or a child with a physical or mental health diagnosis expected to be long-term. Still more families may have expected to have a child with certain attributes—athleticism, intelligence, good looks, or a certain gender—and ended up with the child they have instead.
For these families, you may have envisioned your child’s life—and your life—one way, and now you have to adjust your expectations. You had dreams and ambitions about your child’s future and what that would be like—sports they might play, schools they might attend, and the relationship you might have with them. And now, in coping with this diagnosis, you have to reset your expectations and change your plans.
In “Welcome to Holland,” Emily Perl Kingsley’s seminal essay about raising a differently abled child, the author uses the analogy of planning a family trip to Italy, reading guidebooks, and developing a plan for their visit… only to step off the flight and find themselves in Holland.
