As a parent you provide your child with all the things they cannot provide for themselves, and as a caregiver you will do anything for your child. You are fully aware of many of the challenges that your child, now a young adult, will face in the future. And your young adult is faced with an even greater challenge—living with primary immunodeficiency (PI).
Before they were diagnosed you might have asked yourself, “Why are they sick all the time?” You knew that something was wrong, but no one was able to answer your question. When they were diagnosed with PI, you may have felt a wide range of emotions—relief knowing that you finally received a proper diagnosis but fear because you did not understand this rare disease. The word “caregiver” may have taken on a whole new dimension for you.
Now your child is a young adult. You may be asking, “Have I done enough?” It is the goal of every parent to raise a well-adjusted and independent young adult. Sometimes it is very difficult for parents to let go and allow their child to discover their independence. This is especially true with parents whose children have a chronic illness. Many caregivers of chronically ill children feel this way. The reality is your son or daughter needs to and wants to be independent. They want to live a normal life.
A very big part of your young adult’s independence is effective management of their healthcare. Your child’s PI requires special treatment, and your support and guidance will be needed. The goal is for your child to eventually have complete control of their healthcare.
Once your child turns 18, they are legally considered an adult. Parents are no longer able to access their child’s healthcare records or speak to their healthcare team without the young adult’s written permission. Therefore, the importance of encouraging age-appropriate independence throughout the years is of the utmost importance.
You can enable your young adult to manage their own healthcare by following these guidelines:
- They can explain their illness in casual and emergency situations.
- They understand the importance of the treatments and medication they receive, and when appropriate self-administer them.
- They schedule medical appointments and refills medication.
- They keep a health record, such as the IDF eHeathRecord.
- They understand the importance of health insurance.
You should be proud when your young adult is able to show independence and care for himself. It is time for you to be supportive.