Guest Post: The Transition to Adulthood Begins at Diagnosis

 

Dr. Carlson-Green

Dr. Bonnie Carlson-Green is a pediatric neuropsychologist at Children’s Minnesota and a long-time advocate for pediatric cancer survivors and their families.

In addition to her work completing comprehensive neuropsychological evaluations, advocating at schools, and connecting families with resources, she has campaigned at the Minnesota state capitol for childhood cancer survivors and collaborated with Senator Norm Coleman (R-MN) in writing and introducing the Conquer Childhood Cancer Act, which increased funding for childhood cancer research and provided services to patients and families affected by cancers. 

Dr. Carlson-Green has served on local boards for the Leukemia Lymphoma Society and Gilda’s Club (Twin Cities) and is an active supporter of the Children’s Brain Tumor Foundation (CBTF). Dr. Carlson-Green collaborates with St Jude Children’s Research Hospital on a number of different studies looking at outcomes in pediatric brain tumor survivors.

THE TRANSITION TO ADULTHOOD BEGINS AT DIAGNOSIS
Helping your child develop executive functions along the way

In an ideal world, you and your care team would start thinking about your child’s transition to adulthood in the days soon after a cancer diagnosis. It doesn’t matter if they are twelve months, eight years, a teenager or nearly 18. The transition to adulthood is all about your child becoming as independent a person as they are safely capable of being. It starts with us as parents asking our children to try hard things, supporting them in that process, and celebrating wherever they end up. This is a challenging task for ALL parents, but particularly when your child has been treated for cancer.

Many parents tell me: “I just feel so bad that they have/had cancer that I want to make life as easy as possible.” 

Down the road, however, many of these same parents are regretting their choices:
- ”Our child is so demanding!”
- “His brother and sister resent him and say he gets special treatment.”
- “The teacher says she won’t do anything that she doesn’t want to do.”
- ”Other kids don’t like to play with our child because they say he doesn’t share.”

When you tell your child: “No, I am not going to help you pick up your toys /put away your dirty dishes/pick up the trail of belongings you left behind,” you’re likely to be greeted with whining, a tantrum, eye rolling, or a spicy comment, rather than compliance. What parent hasn’t thought: “It is easier/faster/better if I just do it myself.” If you add in a child who is exhausted, bald, and has been through hell and back for cancer treatments, it is even harder to make that ask.  

A medical provider may direct all the questions of a teen with cancer to the parent or a parent may be quick to respond for their child (“Oh, he’s kind of shy.” or “She doesn’t like to talk to doctors.”). More than “just another doctor’s visit,” these are important opportunities for our children to practice hard things, learn how to give their medical history, and talk to healthcare providers.

In the process of jumping in to do things for our kids or helping them avoid doing hard things, we forget the good feelings of accomplishment and pride that comes when we try (and fail repeatedly) at something new and then one day it just clicks and WE CAN DO IT! One of my favorite parts of doing neuropsych testing is when I watch a child or teen struggle with a hard task and then accomplish it. Even the exhausted patients who are on active treatment manage a big smile of confidence.

If we think about what we are doing from a developmental neuropsychological perspective, we are supporting our children’s emerging executive functions (the self-regulation skills and mental processes that allow us to plan, focus our attention, remember instructions, and juggle multiple tasks successfully). This requires a child to learn how to regulate themselves in the areas of controlling their behavior, managing their emotions, and directing where their thinking energy needs to be (“should I be paying attention to the teacher or to the squirrel outside the window?”). Different studies have suggested that these skills don’t just emerge overnight. Rather, they emerge hierarchically throughout childhood and adolescence, with more complex skills building on simpler skills. The process of developing those skills is not typically completed until an individual is in their mid-to-late 20s. By building these skills at an early age (even through diagnosis and treatment), your child will be in a better place to allow more complex skills to emerge over time.

At seven, your child may not be capable of giving their medical history or even a diagnosis, but they can tell the doctor what grade they are in and who they are friends with. As they get older, continue to encourage your child to take an active role in their medical visits. Talk to them before appointments about any concerns they might have. Help them write down reminder notes. Wait and give your child space and time to respond to questions before jumping in and answering questions.

If your child’s behavior or emotional dysregulation has the rest of the family walking on eggshells or is a source of stress, make an appointment for them to be seen by a pediatric psychologist who understands childhood cancer. A therapist who works with adults as well as children or who does not have experience working in a medical setting is not going to be able to help your child as quickly as one who has that specific experience. Ask your child’s cancer doctor for a referral or suggestions. It’s much easier to solve small problems in small children than it is to deal with behavioral and emotional dysregulation in a 17-year-old who is bigger than his parents and has been using poor strategies to cope for a long time (but it can be done with a good therapist and consistent appointments).

The more we expect our children to do things on their own, the more confident and empowered they become. Don’t expect perfectionism — the goal is to gradually guide children to doing more and more for themselves. Think about what you are consistently doing for your child and ways that you might be able to back away from doing for them. Ask your medical providers to direct their questions to your child. Over time, you will begin to see those executive functions develop.

Here are some suggestions:

  • Time tracking: Have children set their own alarm to get up in the morning so they don’t have to rely on mom and dad.  As they get older, consider using medication apps like Medi-Safe to remind them to take medication.

  • Getting dressed: Let them pick out their own outfit the night before school. Encourage them to think through what they need and how they should dress depending on the weather (problem solving and planning).

  • Breakfast/lunch/dinner: Start by giving them simple tasks like making toast, stirring pancake batter, cleaning their lunchbox, and setting the table.

  • Getting their backpack ready: Have them think through a list of what they need to bring that day, maybe referring to a planner or family calendar. (“Oh, tomorrow is PE day. What do you need to bring for that?”)

  • Making plans: Let them come up with weekend plans for the family or after school activities.

  • Checking homework: It’s okay if they don’t get 100% of the answers correct. Let them learn from the mistakes.

  • Chores. Chores support the family. Everyone can have a task from sorting laundry, to clearing the table, to taking out the garbage.

Need more ideas?

Books to support independent living skills include Steps to Independence: Teaching everyday skills to children with special needs (4th Edition) by Bruce Baker & Alan J. Brightman. This book outlines a practical and scientifically-based approach to teaching basic self-care and community-living skills, as well as techniques for managing problem behaviors for parents of children age three to young adulthood.

Activities to support development of executive function at all ages (from infants to teens) can be found here at the Center on the Developing Child at Harvard.

Books to help your child or adolescent develop executive function skills:

For children:

For teens:

More resources

PACER Center www.pacer.org has resources on special education (IEP/504), transitioning, job support, bullying and many other areas for individuals with disabilities.

Technology apps.

  • Medi-Safe is an app that allows you to create a medication list and set reminders or prompts to remind you when to take a particular medicine. Parents can be added as a backup reminder.

  • Magnusmode.com allows persons with disability to live with greater independence and inclusion).

  • Magic ToDo - GoblinTools breaks down big tasks into component parts (for example, type in “clean my room” and it will generate all the tasks involved in doing that.

Casey Life Skills (CLS) is a free tool that assesses the behaviors and competencies youth need to achieve their long-term goals. It aims to set youth on their way toward developing healthy, productive lives. Examples of the life skills CLS helps youth self-evaluate include maintaining healthy relationships, work and study habits, computer literacy, and money management.

Editor’s Note: Learn more about transitioning from pediatric to adult care - and what it means for your healthcare when you turn 18 - through our Stewart Initiative for Childhood Cancer Survivors: Transitioning Care

 
SurvivorshipGuest Authortransitions, executive functions, survivorship