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Coping and support
By Mayo Clinic staffWhen you learn your child has Down syndrome, you may experience a gamut of emotions, including anger, fear, worry, sorrow and guilt. You may not know what to expect, and you may worry about your ability to care for a baby with a disability. The best antidote for fear and worry is information and support. Prepare yourself:
- Find a team of trusted professionals. You'll need to make important decisions about your child's education and treatment. Build a team of doctors, teachers and therapists you trust. These professionals can help evaluate the resources in your area and help explain state and federal programs for children with disabilities.
- Seek out other families who are dealing with the same issues. Most communities have support groups for parents of children with Down syndrome. You can also find Internet support groups.
- Don't believe misinformation about Down syndrome. Some people believe that children with Down syndrome must be placed in segregated special education schools and that adults with Down syndrome usually live in institutions. Not true. Many people with Down syndrome live with their families or independently, go to mainstream schools, read and write, and have jobs. People with Down syndrome can live fulfilling lives.
- Down syndrome. National Institute of Child Health and Human Development. http://www.nichd.nih.gov/health/topics/down_syndrome.cfm. Accessed Jan. 9, 2009.
- Barss V, et al. Overview of prenatal screening and diagnosis of Down syndrome. http://www.uptodate.com/home/index.html. Accessed Jan. 9, 2009.
- Down syndrome Q & A. National Down Syndrome Society. http://www.ndss.org/index.php?option=com_content&view=article&id=55:down-syndrome-q-a-a&catid=35:about-down-syndrome&Itemid=75. Accessed Jan. 20, 2009.
- What causes Down syndrome? National Down Syndrome Society. http://www.ndss.org/index.php?option=com_content&task=category§ionid=23&id=60&Itemid=234. Accessed Jan. 20, 2009.
- Genetic conditions: Down syndrome. Genetics Home Reference. http://ghr.nlm.nih.gov/condition=downsyndrome. Accessed Jan. 9, 2009.
- Facts about Down syndrome. National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/downsyndrome.cfm. Accessed Jan. 20, 2009.
- Canick JA, et al. Second trimester maternal serum screening for Down syndrome. http://www.uptodate.com/home/index.html. Accessed Jan. 9, 2009.
