After age five, the medical considerations remain the same as in previous years. The unique addition is transition planning for adult care. Doctors begin to speak with the adolescents about their own medical care soon after they become a teen. These teach the teen skills in order to be able to advocate for themselves as they become adults. It is important to empower children to be part of their own medical care early because we need to recognize that they have their own goals and priorities, for both the medical care they receive and their lives’ work. Being in control of their medical appointments early also teaches teens that they have the power to set boundaries in their lives. This is very important as abuse of the vulnerable population commonly occurs because they are so rarely in control of what others can do to their bodies in the context of medical care and when decisions are made for them in their “best interest”. Transitions and school placements have to be discussed, with accommodations when necessary. Families also need to have conversations around legal guardianship as the incidence of premature cognitive decline and Alzheimer’s disease is higher in this population.

Preparing for the Future – At Each Stage

Receiving news that your child has a disorder is difficult, stressful, and anxiety-provoking for parents. We know that there are many uncertainties that lie ahead. We provide this information based on current practice guidelines in order to help parents understand what doctors look out for and anticipate to provide care in a timely manner. Providing interventions early is always preferred. Not all the conditions listed here will be present in each individual diagnosed with Down Syndrome. Keep in mind that there is great variability in the outcome and presentation of this syndrome. Individuals diagnosed with Down Syndrome can have full, healthy, and productive lives. The information we provide in our website is meant to help parents understand certain terms and conditions better. These posts should not take the place of a comprehensive medical consult. Should you have questions or clarifications, we encourage you to reach out to your primary care physician.

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