Topic Overview

If your child with Down syndrome is an adolescent or young adult between the ages of 13 and 21, you will likely have ongoing questions and concerns. Your doctor can help answer your questions. And he or she can guide you to appropriate resources that can help you manage your feelings and plan for your child’s long-term care needs.

Your child should receive health care from a coordinated team of doctors. Treatment should focus on monitoring and recognizing your child’s changing physical, mental, and emotional needs. Your doctor should be able to guide you to the services you need. It is a good idea to have your child’s primary doctor prepare and maintain a medical summary and work with you to develop a written health care transition plan as your child approaches the teen years. Think about what types of future services will be needed, who will provide them, and how you will pay for the services.

Your doctor will likely address a variety of issues during your child’s regularly scheduled checkups. In addition to talking about health problems, your doctor may talk with you and your child about concerns like:

• The transition into adulthood. Discuss obstacles that can interfere with your teenager’s ability to live independently.
• Education and training. Talk about the programs available at your child’s school and whether vocational training is part of the curriculum. You also may discuss whether your child can work in the future.
• Emerging sexuality. Talk about sexual development and the importance of supervision. Discuss contraceptive use and whether it is appropriate. Consider and review the risks involved if your adolescent, teen, or young adult becomes pregnant. (Females with Down syndrome can have children. Males are usually sterile.)
• Future living arrangements. Discuss what kinds of group homes are available in your area and whether any would be appropriate for your teen or young adult. Review your financial plan and guardianship arrangements.
• Adult medical care. Ask for referral to a doctor who has experience treating adults who have Down syndrome.