As your child gets older, they may face new opportunities and challenges in life with cystic fibrosis (CF). It’s also common for kids to crave more independence over time. There are steps you can take to help them manage the transition from childhood into their teen years and beyond.
Let’s take a look at five ways you can support your child through this time.
To help your child develop independence and self-care skills, it’s important to teach them about their condition and strategies for managing it.
As your child gets older, encourage them to take on more responsibility for their own care. For example, try to help them gradually develop the skills and confidence they need to:
- ask questions and report changes in their symptoms during medical appointments
- set up, use, and clean therapeutic equipment
- take medications without reminders from you
- talk to their friends about their condition
If they’re struggling to take the reins, it might help to schedule an appointment with a life skills coach, social worker, or psychologist. They may be able to help your child develop coping skills and confidence.
You might be tempted to sugarcoat your child’s condition. But honest communication is important, especially as your child gets older and begins to think more about their future.
When your child expresses fears or frustrations, try to resist the urge to offer false comfort. Instead, acknowledge their feelings and ask them questions to learn about their thoughts and experiences. Invite them to ask you questions in return, and be compassionate but truthful in your responses.
After talking through their feelings, offer to help them brainstorm strategies to manage challenges in their life. In some cases, it might help to seek support from a social worker, psychologist, or other mental health professional. Your child might also benefit from joining an online or in-person support group for youth with CF.
Especially as they enter their teen years, your child might benefit from time alone with members of their healthcare team. This will give them the chance to develop communication and self-management skills. It will also give them time to talk about sensitive topics that they might not want to discuss in front of other people, such as:
- sex, sexuality, and intimate relationships
- conflicts with family members or friends
- body image issues
- alcohol or drugs
In some cases, your child’s care team might ask you to be present for part of their appointment before stepping out of the room.
Eventually, your child will be ready to attend appointments on their own. If they are nervous about attending appointments without you, it might help to sit down together and brainstorm a list of updates and questions they can discuss with their care team. Encourage them to write out a list they can take with them into their appointment.
Is your child moving to a new middle school or high school? Consider making an appointment with a school administrator before the school year begins to discuss their health needs.
You might need to request accommodations to ensure that your child can:
- take medications during school hours
- take time away from class and access a private area to do airway clearance therapy
- get out of class when they need to attend medical appointments
- catch up on lessons and assignments missed due to medical appointments or illness
Consider asking your child to attend the meeting with you, so they can get to know their school administrator, develop self-advocacy skills, and have the opportunity to express their preferences for accommodations.
Does your child plan to attend vocational school, community college, or university? You can help them think about some of the preparations they might need to make.
When the time comes, encourage them to make an appointment with their care team to discuss the accommodations they might need on campus. Members of their care team can help them plan for aspects of their studies and living situation that might require special arrangements.
If your child decides to request on-campus housing, they will need to make an appointment with someone at their school to discuss their condition and needs. It’s best to establish a written agreement that lists any special arrangements or support that the school will provide.
If they plan to attend school in another town or city, your child should get in touch with a CF care team in the area so that they can access local medical support.
Striking a balance between supporting your child and giving them room to grow is important as they get older. It’s essential to educate them about their condition and encourage them to take increasing responsibility for self-management, while continuing to offer them compassionate care. Members of your child’s care team and other health professionals can help you cope with challenges along the way.