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Coping and support
By Mayo Clinic staffWhen you learn your child has Down syndrome, you may experience a range 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. Consider these steps to 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.
References
- Facts about Down syndrome. National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/downsyndrome.cfm. Accessed Feb. 14, 2011.
- Barss V, et al. Overview of prenatal screening and diagnosis of Down syndrome. http://www.uptodate.com/home/index.html. Accessed Feb. 14, 2011.
- Esbensen AJ. Health conditions associated with aging and end of life of adults with Down syndrome. International Review of Research in Mental Retardation. 2010;39:107.
- 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 Feb. 14, 2011.
- Genetic conditions: Down syndrome. Genetics Home Reference. http://ghr.nlm.nih.gov/condition=downsyndrome. Accessed Feb. 14, 2011.
- ACOG practice bulletin no. 77: Screening for fetal chromosomal abnormalities. Obstetrics and Gynecology. 2007;109:217.
- Birth defects: Down syndrome. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/birthdefects/DownSyndrome.htm. Accessed Feb. 15, 2011.
- Roizen NJ. Clinical features and diagnosis of Down syndrome. http://www.uptodate.com/home/index.html. Accessed Feb. 15, 2011.
- Birth defects. In: American College of Obstetricians and Gynecologists. Your Pregnancy and Childbirth Month to Month. 5th ed. Washington, D.C.: American College of Obstetricians and Gynecologists; 2010:343.
- Harms RW (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 15, 2011.
- Chiu RWK, et al. Non-invasive prenatal assessment of trisomy 21 by multiplexed maternal plasma DNA sequencing: Large scale validity study. British Medical Journal. 2011;342:7401.
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