There are many medical details around managing a long-term, serious, chronic illness including nuances that can only be learned over time. Even medical professionals don't always know the "right" thing to do when things start to change.
In addition to medical knowledge, there are also the financial, insurance, and legal details that go along with it all. The average eighteen-year-old, unless properly trained for years, will not be prepared to manage it all without substantial help. That's why starting a phased, methodical training program at a young age is crucial.
Some medical clinics have "transition plans" written out to help you know what types of medical knowledge and tasks should be taught at the different ages and stages of your child's development. Others clinics don't or are working on it but it takes time, even years, for medical institutions to start a new program. In the meantime, your child is getting older.
If your child is age eleven or older, start working on this on your own. If your clinic doesn't have a transition plan, check around at other medical centers. There are also good resources available for transition in general. Here’s a link to one of our favorites from The Institute for Child Health Policy at the University of Florida:
With some planning and parenting education, parents can massively increase the odds that their child will be ready to move up and out into the adult world. Not only is this good for the child, but it's also good for parents and medical professionals.
Everyone wins when a hopeful, optimistic, young adult goes out into the world with confidence and says: "I can do it! I recognize this world because we practiced for it at home!"
Many of these concepts are from the award-winning book “Parenting Children with Health Issues" by Foster W. Cline M.D, child psychiatrist and co-founder of Love and Logic, and Lisa C. Greene, mom of two kids with cystic fibrosis and parent educator. Visit www.ParentingChildrenWithHealthIssues.com.
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