7 Tips for Coping with Your Child’s Unexpected Diagnosis

Every parent imagines that their child will have a healthy life. When a child receives an unexpected medical diagnosis, parents begin the process of adjustment, which is often filled with emotions and an uncertainty about what to do next.

CHOC Children’s pediatric psychologist Dr. Sabrina A. Karczewski offers the following tips for parents to cope with unexpected news about their child’s health. The adjustment may take some time, but in most cases the stress does goes down, she says. “Most parents are able to find that equilibrium in their families again.”

Dr. Sabrina A. Karczewski, a CHOC Children’s pediatric psychologist
  1. Absorb information at your own pace.

 When you receive unexpected news about your child, it can be hard to pay attention to what the doctor is sharing with you. It’s very common to be confused and to forget details.

Keep a list of ongoing questions. It’s okay to ask the same questions over again and to ask for clarification. When you meet with the doctor, have a family member or friend come with you and help write down the information you receive.

“The most important thing is to make sure you understand to the level that you need to,” Dr. Karczewski says. “It’s okay to not fully understand everything immediately.”

  1. Have permission to feel your feelings.

 Learning about your child’s medical condition can bring about feelings similar to the grieving process, such as shock, denial, anger and depression. These are all normal feelings and it’s okay to feel them.

A common reaction is to feel mad at your support people (medical team, family members, etc.). You can rest assured that relationships can be mended to move forward with your child’s medical care, Dr. Karczewski says. Some parents also might feel guilt, whether it’s due to concerns about their own genetics, not having an instinct that something was wrong sooner or attributing early symptoms to something more normal. “I would tell parents, it’s not your fault,” Dr. Karczewski says. “In fact, your child only got diagnosed because you did the right thing by bringing them to a medical doctor.”

Once you’re able to acknowledge your feelings, lean on positive coping skills to work through them. Think about a time that you have coped with another stressful situation and use those same skills that have worked for you, Dr. Karczewski says.

  1. Set limits on your online research.

 Most parents will turn to the Internet at some point during their child’s medical treatment. That’s understandable, but Dr. Karczewski recommends that you set some boundaries.

“The internet is a really wonderful place and it is also a terrifying place,” she says. “Use your medical team as a guide to direct you to reliable and trustworthy resources. I also recommend setting a healthy time limit for your online research so you can have time for other things and also not be consumed. The information will be there tomorrow, it’s okay to put it down for today.”

  1. Prioritize your relationships early.

 “What ends up happening for a lot of parents is they spend their energy on their child with a medical condition, and they neglect their relationship as a couple or with their other children,” Dr. Karczewski says. “Be sure to make time for activities outside of the medical experience, and nurture your other relationships, too.”

  1. Focus on self-care as best as you can.

 While it might feel wrong to focus on yourself instead of your child, you’ll be better able to help them if you take care of your own needs, even in small ways. Take a quick shower, go for a walk or schedule time to do an activity that you enjoy.

  1. Lean on family and friends.

 Dr. Karczewski recommends making a schedule for family and friends to be with you. “Family can be great, but I know they can add stress, and you may not have the space to manage that stress,” she says. “Come up with specific tasks for family members (like making meals or picking up your other kids from school); it helps them give you what you need and not feel like they are getting in the way.”

  1. Seek extra help for yourself if you need it.

 Pay special attention to any feelings that are interfering with your daily functioning and seek mental health services early if needed. Dr. Karczewski explains, “Nobody is born knowing how to handle this. Some of us need additional ideas on how to move forward, and that’s okay.”

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A More Positive Approach to Parenting

“Begin with the end in mind.” The same proactive approach that works so well in business also applies to parenting. Close your eyes and imagine your child at age 25 or 30. What do you see?

Did you envision a happy, healthy and successful adult? Think about the critical life skills your child will need to become that person.

“At its very core, parenting is about teaching children the life skills they’ll need to become happy, healthy adults,” said Dr. Brett Patterson, who directs Child Behavior Pathways, a joint program between CHOC Children’s and UC Irvine Health that provides parent support for social, emotional and cognitive development for children ages 0 to 5. “Parents must teach children to become independent thinkers, make responsible choices, and understand how good choices generally lead to better outcomes on a consistent basis.”

Dr. Patterson recommends the Positive Behavior Support approach, which utilizes the same core principles commonly referred to as “Positive Discipline.” As both names suggest, this approach emphasizes developing a child’s sense of personal accountability and responsibility from a positive perspective. The basic premise starts with creating an environment for success where positive behaviors and choices are more likely to be elicited and subsequently reinforced.

Parents may begin teaching these concepts in early childhood, he says. Start by balancing more of your attention to include recognition of those things your child does right. The phrase he often uses with parents is, “Find daily opportunities to catch your child being good.”

“Children respond to both positive and negative attention, but the behaviors that get attention of any kind are the ones that tend to be repeated,” Dr. Patterson said. “Providing positive attention when your child makes good choices encourages and reinforces the likelihood that you’ll see more of those particular behaviors.”

Alternatively, children must also understand that poor choices usually come with a cost. Choosing the right words can help your child make the connection between a poor choice and a loss of privileges.

“Avoid using phrases like, ‘I’m taking the iPad away’ or ‘I’m sending you to bed early,’” Dr. Patterson said. “Instead, tie those costs directly to their behaviors by saying things like, ‘If you choose not to do your homework/chores/etc., then you’re choosing not to have iPad privileges” or ‘If you choose not to follow directions, you are choosing to go to bed early.’ This holds the child accountable and better able to see that it was the behavior that led to the outcome.”

Help Your Child Succeed

Your child ultimately has a choice in his behavior, but you can help set the stage for success. Dr. Patterson said planning, small changes and a dose of patience may go a long way toward changing behavior.

“If you can predict it, you can plan for it,” Dr. Patterson said. “If you know where and when the problems or challenges are likely to occur, you can plan ways to change the situation in order to get — and reinforce — the behaviors you’d like to see.”

He recalled one family’s situation in which every school afternoon began with an argument involving a shoe rack by the front door. The child would come home every day and kick or knock over the shoe rack, initiating a conflict that set the tone for the rest of the afternoon and often into the evening. The solution started by temporarily moving the shoe rack.

“We could predict that the location of the shoe rack was one of the environmental triggers that would likely result in conflict within the first minute of the child coming through the front door,” Dr. Patterson said. “Moving the trigger away from that area created a new environment that gave the mother a few extra minutes to provide positive reinforcement for something else and start the afternoon off on a more positive note.”

Through positive reinforcement, a new afternoon pattern developed over the next few days. Then came the time to return the shoe rack back by the front door.

As they did this, the parents reinforced how much better things were when the child came into the home as expected. They were also able to teach proper “shoe rack etiquette” rules for entering the home appropriately, and the privileges that resulted when choosing to do so. On the other hand, they explained the costs for choosing not to follow those expectations.

Now the shoe rack is back in place. Success continues to be reinforced, while non-compliance consistently incurs the established costs.

Consistency is key. The Positive Behavior Support approach may require some patience and creativity on your part, but it works, Dr. Patterson said. It is effective with children and teens, including those with special needs.

He added that the positive approach is effective for resolving conflicts in other relationships, such as sibling rivalry. These principles may also be applied in the workplace among coworkers.

“Everyone likes to be recognized for doing something well,” he said. “Begin with the end in mind. The Positive Behavior Support approach is your roadmap for getting there.”

Dr. Patterson is beginning a two-month parenting class for parents of young children ages 0 to 3 at CHOC Children’s on Oct. 15, 2015. Also beginning in October is a class for parents and children, ages 3 to 6, in Irvine that includes social skills training. Additionally, parent-only classes for those with children ages 3 to 5 are beginning at various locations in Santa Ana and Aliso Viejo, including one conducted in Spanish. For more information and to learn about Positive Behavior Support, call 949-267-0227.


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Managing Bedtime with Multiple Kids

Cara Krenn is a writer, editor, and mom to fraternal twin girls and a singleton boy. She is the author of the e-book Twinthusiasm: Survival Lessons for Your First Year Raising Twins and blogs at www.twinthusiasm.com. She shares her tried-and-true tips below.

CHOC Children's

Bedtime can be a tough time for families. Everyone’s tired, cranky, and patience is wearing thin (particularly mom’s in my case!) Here are four quick tips that have helped my family simplify our evenings:

Meal plan for dinner. It’s both time efficient and cost-saving to plan ahead when it comes to dinnertime. Many moms find it helpful to draft a dinner chart for the week every Sunday night. Knowing what you’re going to cook in advance can help streamline the entire evening process. It also helps ensure your family is getting diversely healthy meals.

Aim for a consistent bedtime. Research shows that the actual time your kids go to bed isn’t as important as going to bed at the same time every night. Inconsistent bedtimes have been linked to both poor behavior and performance in kids. Bedtimes may run slack in the summer, and we all should have some wiggle room for special events, but it’s important for kids to consistently say “good night” around the same time every evening.

Create a bedtime routine. Make your children creatures of good habits and find a sequence that works for your family. At our house, this consists of taking a bath, eating dinner, brushing teeth, reading books (my older kids briefly read to themselves while I put my baby to sleep, then we read together), using the restroom, then singing our goodnight song – always in that order. Most kids thrive on routine, and going through the same sequence each night will help you stay on schedule – plus kids can better know what’s expected of them.

Don’t rush and be firm. Kids are masters at coming up with “just one more” need, be it another book, song, or kiss. At our house, we’ve found it most effective to take our time with the bedtime routine, particularly not rushing through story time, but trying to be firm when the requests for “one more” of anything arise. Children can always tell when you’re trying to speed through a story or song, so muster up an extra ounce of patience to make your kids feel important at the end of the night. But when it’s time for bed, it’s time for bed!


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