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These topics may be helpful with regard to either educational or health care transitions. 


What are some highlights of a successful transition?
    • A successful transition is acknowledged and processed as a transition for everyone, not just the youth.
    • The needed planning is thoughtful and spans from before the transition, through the transition.
    • The whole life of the person should be considered: medical needs, hobbies/interests, family and social life, sexuality, vocational and educational needs, career interests, sports and leisure activities.  
    • It is about stretching into independence on a pathway that makes sense for that individual.
    • Parents remember to make quality time for other children in the family.
General strategies to prepare for transitions
  • Think in terms of goals – short term, medium and long term
  • Connect with other families going through the same thing
General medical:
  • Learn to make appointments
  • Learn about using insurance cards, co-payments
  • Be prepared for emergency room visits (what might doctors need to take care of you)
  • Identify who can help when needed
  • Begin to understand funding issues
  • If appropriate, consider the issue of full or partial guardianship
What is meant by establishing an identity and why is it important?
    • For young people, or for people of any age, it means having a feeling that 'I am more than my diagnosis!”
    • This sense of self translates into more confidence later on for things like:
      • asking questions at the doctor’s office
      • making friends/creating social supports
      • making plans for the future
      • choosing to follow medical advice because it ultimately helps with real world goals (relationships, car, apartment, etc.)
How can one help a young person establish an identity?

For all:

  • Start in the early years by helping children develop their ability to make choices.
    • Ask questions and offer choices, such as “Which of these healthy snacks do you want for recess?”, or “What do you want to tell your doctor at your visit today?” As a young person matures, the questions will have more complexity.
    • Remember that what is important is not only the answer, but also the process of thinking through options and making choices for themselves.
  • Help young people know who they are by encouraging interests in activities, sports, or hobbies.
    • Help them connect to others with similar interests.
  • Understand it is normal development to make mistakes or challenge the “rules”, even if those rules are about following important medical advice.
    • Provide opportunities to help young people learn from their mistakes when they happen.
    • Riding a bike is a good metaphor: children try and fail but learn it eventually.

Especially for parents:

  • Look for ways for young people to be involved in typical activities.
    • One example, Including Samuel, demonstrates how a young boy is included at home and school, even playing baseball as friends push his wheelchair around the bases.
  • Parents, too, need identities beyond being parents of a child with a condition.
  • Sometimes it's good to ask yourself if you are pushing your child to do something because it is what you want, not necessarily what your child wants.
  • It is good to ask yourself if you could be holding your child back because of your own fears, not your child’s.

Especially for schools:

  • Support parents as they grapple with their child’s increasing independence.
  • Support greater independence for students in school.
But what if he fails? What if she gets hurt?

From a psycho-social standpoint, young people may engage in exploration and risk taking before they are able to accept new responsibilities and commitments. Developmentally, it’s part of growing up!

  • Understand it is normal development to make mistakes or challenge the “rules”, even if those rules are about following important medical advice.
  • Eliminating risk might also eliminate opportunities to learn.
  • Try to identify acceptable parameters for safe risk-taking and getting out of one’s comfort zone. Here’s one example:
    • Some students will want to go away to college but have never been away from home. What steps can they take as children and teens to help them begin to make that break?
      • Overnight camp
      • Overnights with friends
      • Going to a relative’s home for a few days
    • In this example, make sure the children help make a checklist of what they need, and then pack the items. This is teaching them how to plan and how to get organized, important life skills for anyone.
    • Make sure to chat through a few 'what ifs' so they can come up with a Plan B if needed.
      • What if you run out of toothpaste?
      • What if you miss the bus?
What should I know about puberty and sexual development?

  • Many of the conditions featured on GEMSS do have important implications for puberty and sexual development. When this applies, you can find the information under the heading of the condition.