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 CGD.
You may have become used to trying to protect your child. You have overseen their medications, doctors’ appointment, and have taken great care to help them avoid infection. Chances are that you’ve also reprioritized your life to accommodate the needs of your child. Congratulations on being a great parent to a child with CGD. You’ve helped them reach this important milestone: adulthood!
Now that your child is here, you may be asking: Have I done enough? Will everything be OK? Will my kid (now adult) be able to handle these new responsibilities?
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 CGD. 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 CGD 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 medications they receive, and when appropriate self-administer them.
- They schedule medical appointments and refills medication.
- They keep a health record, such as the IDF ePHR.
- 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.
Source: Immune Deficiency Foundation, www.primaryimmune.org/young-adults. This page contains general medical information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical advice.