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Teens go through many changes at home, at school and socially. Some are ready to take on new challenges and responsibilities while others need more time. They may rely increasingly less on you and more on themselves. They may spend more time with their friends and less time at home. Little by little, you’ve given your teen as much freedom as you think they can handle because you want them to create their own identity and become responsible adults.

Teens diagnosed with primary immunodeficiency (PI) and their families have unique challenges and added responsibilities. Your family can help your teen manage PI while balance time as a family.

Your Teen’s Education
Living with a primary immunodeficiency (PI) can affect your teen’s education. You can be their best advocate with some research and planning. Click here to learn more about what you need to do.

Your Teen’s Independence
Achieving independence is an essential part of your teen’s transition to adulthood. To make this transition successful, you will need to give your teen the freedom to try new things so they can develop a strong identity. A strong sense of self will lead to more confidence and greater self-esteem. This will allow them to be more resilient and cope with the challenges of living with PI.

  • Involve them in their healthcare. Make sure that they have a full understanding of specific health concerns and treatments, and how preventative care and an emphasis on wellness can help. Reinforce and praise efforts to take responsibility for their health, and emphasize how this is an important sign of maturity. Click here for transition checklists that can help you and your teen manage their health.
  • Begin a dialogue with your teen, so that they become part of the decision making that influences their life. This dialogue should include asking them about their feelings, views, and experiences. Establishing an open give and take will show that you respect their viewpoint.
  • Encourage your teen to explore their talents and interests. Help them set realistic expectations based on their capabilities and medical needs, but focus on what they can do. Having fun outside of family and medical appointments will build confidence and help them cope with their illness.
  • Allow your adolescent to participate in school and social activities. Social life is central for all teens and your teen is no exception. These experiences shape their identity.
  • Give them opportunities to make more decisions. Being a good decision maker requires practice. When people are given more opportunities to make decisions and learn from the outcomes of those decisions, they become better at making decisions. That’s why the saying, “Experience is the greatest teacher,” is true.

Your Family
Building positive family relationships is no easy task. All members have unique personalities that interact in different ways. As children grow, they are learning from their parents. They are being shaped by the whole family experience. These experiences will influence their values and attitudes as an adult. When families have a child with PI, sometimes challenges are magnified, and it can take a physical and emotional toll on every family member.

In addition, family stability can be affected by many factors, such as finances, divorce, substance abuse, or chronic illness. Overall family stability is measured by its ability to adapt to change and stress. Families that maintain stability during these times become more resilient and stronger.

You can manage your teen’s PI and the effects it has on your family stability. Here are some proven family coping skills:

  • Create family balance. It would be easy to spend more time with a chronically ill child and neglect the other children. Making a conscious effort to spend time with each child is important. Find the time for each child individually.
  • Be a positive role model especially as it relates to coping with your child’s illness. Children will follow your lead. Model positive and effective coping strategies on a regular basis and encourage them to develop their own.
  • Keep the lines of communication open. Educate yourself about PI and share honest information with your children. Answer all their questions and talk to them about how they are feeling.
  • Develop normal family routines. Having regular family meals is a time when everyone has a chance to share. Family traditions and family outings create a feeling of unity.
  • Make time for yourself. People only have so much gas in the tank. Finding ways to re-energize will make you a better parent.

You can also turn to IDF for guidance. Visit IDF Friends, a discussion forum designed for those living with PI, including parents, where you can connect with others parenting a teen with PI. You can also request to talk one-on-one with a volunteer through IDF Peer Support.

Sibling relationships strongly influence family dynamics, which is the way family members interact with one another and in relation to the group. Siblings are one of the most important connections people have throughout their life. At an early age, however, brothers and sisters compete for their parents’ attention. This competition can put a strain on the family. When one member of a family has a chronic illness, it can further affect family dynamics.

It is hard to predict how a brother or sister will deal with their sibling’s PI. Some siblings may feel guilty because they are healthy and others may feel anxious about becoming sick themselves. Siblings might feel angry if they are asked to do more around the house or don’t get the attention they desire. You should acknowledge the siblings’ feelings and develop ways to help them cope:

  • Take a positive approach. Siblings who help their brother or sister cope with their chronic illness feel a sense of pride. Their bond can become even stronger when caring and kindness is shown.
  • Communication is essential. When siblings start having negative feelings, they need to talk about it. For example, if they are feeling neglected, they need to be able to talk about it with their parents.
  • Keep the relationship as normal as possible. PI does not define sibling relationships. Siblings need to understand that their relationship will have the usual ups and downs that all sibling relationships have.
  • Family dynamics and sibling relationships are extremely complex. The bond among family members is influenced by many different factors. Learning how to adapt and cope with those factors will allow each member to be more resilient.

Your Teen’s Friends
As a parent, you want to know who your kids are hanging out with. Your teen’s friends have tremendous influence on them. This is what peer pressure is all about. It makes sense that you want your teen to hang out with people who will have a positive influence on their lifestyle choices. Their friendships have deeper meaning to them and last longer than as a preadolescent. Their friends are very important to them. Your teen’s friends are not replacing you. Their friends are becoming more important, and your teen still needs you to be supportive as they mature into young adults.

Your Teen Getting a Job
Many teens want to have a job. They like getting paid and the feeling of independence. There are many good reasons why your teen should work.

  • They learn responsibility.
  • They gain valuable experience managing money.
  • They learn basic job skills like getting to work on time.
  • They learn about time management.

Your teen working does have its negatives.

  • They will have more stress trying to fulfill the demands of work and school.
  • They will have less time for their family and friends.

How do you know if your teen is ready to take on the added responsibility of a job? Take this quiz to see if they are ready:

The most important consideration for your working teen is the number of hours they should work each week. The U.S. Department of Labor has regulations regarding child labor:

For more information about teens living with PI, , click here to download the adolescent chapter from the IDF Patient & Family Handbook.