12 Key Facts about Down Syndrome

1. Down syndrome is the most common chromosomal condition. Approximately one in every 700 babies in the U.S. is born with Down syndrome – about 6,000 babies every year. 

2.Babies with Down syndrome are born in families of all ethnic and economic levels. 

3.Women over the age of 35 have a higher incidence of delivering a baby with Down syndrome.  However, because more babies are born to women under 35 (due to higher fertility rates) 80% of babies born with Ds are born to moms under the age of 35. 

4.There are three types of Down syndrome:

• Trisomy 21 is the most common type of Down syndrome.
• All cells have an extra copy of the 21st chromosome.
• Translocation Down syndrome
• Part of chromosome 21 becomes attached to another chromosome.  People with Translocation Ds have the usual 2 pairs of the 21st chromosome, but also have extra T21 material attached to the translocated chromosome. 
• Mosaic Down syndrome
• Only some cells in the body have the extra 21st chromosome.
  

5. There is no “mild” or “severe” form of Down syndrome. Ability is totally individual. Every person with Ds has unique abilities, talents and interests.

6. Children with Down syndrome go through the same developmental milestones as everyone else does. Teething, crawling, walking, talking, puberty, social-emotional growth. The difference? They often approach and reach their milestones on a delayed timeline or in a different order.

7. Early intervention services such as Occupational, Speech & Physical Therapy are key to the best possible support for a child with Down syndrome.  Agencies exist to help parents coordinate those services.

8. In McHenry County, early intervention services from birth through age 3 years of age are a coordinated by Service, Inc of Illinois at the Rockford office at 815-741-0800. *

9. At age three, the local school district takes over with early childhood programs.  The school district, through the IEP (individualized education program) with continue to coordinate educational programing and services as needed through the end of high school and on into a transition program.  Transition spans the period from high school through the day before your child turns 22 and includes education around life skills as well as job coaching. * 

10. Programming from age 22 on will be privately coordinated with possible assistance from state agencies such as Service, Inc., possible funding through the state (PUNS) and/or possible Social Security Disability benefits. *

11. Children with Ds grow into adults who have similar wants and needs as other adults. The need to be included, have meaningful friendships, to be loved, to be productive members of society through work or volunteering or both.  Adults with Ds can also participate in making decisions about their own goals and care through self-advocacy.  

12. Life expectancy for people with Down syndrome has gone up dramatically in recent decades.  In 1983, the average life expectance of a person with Ds was 25 years old.  Today, folks with Ds are living into their 60’s. 

Please see our resource page for links to other organizations and book references to help you learn even more about Down syndrome. 

Reach out to any FINDs board member (see our contacts page) to arrange time to chat with one of us about our experiences with parenting our own children (some now adults) with DS. We’re eager to answer your questions and provide support as we can. 

*These statements are not guarantees of service, rather an outline of what we’ve experienced as available in our community. Current programs may have changed and you should seek specific guidance through Service, Inc. and/or your school district.