We have come so far but still have a journey ahead. Down Syndrome We have come so far but still have a journey ahead. A visual representation of chapter 4 from Far From the Tree Presentation by: Katina Harshbarger

The Original Thought John Langdon Down was the first to diagnose Down syndrome in 1866. He called people with the syndrome Mongoloids because he believed that it was connected to primitive Asian antecedents.

What We Know Today We know that Down syndrome is caused by a triplication of the 21st chromosome. The scientific name is trisomy 21. Individuals with Down syndrome develop slowly and do stop short of typical intellectual development. Individuals with Down syndrome are often happy and very social but they can also be stubborn. Some even suffer from depression, ADHD, and Autism. There are some defining physical features that individuals with Down syndrome usually have (see graphic above). Some of these features may cause health issues. What is important to remember is that every individual with Down syndrome is just that, an individual.

In The Beginning Through the 1970’s it was normal practice for doctor’s to recommend parents place their newborn baby with Down Syndrome in an institution. The doctors believed these babies were a lost cause.

No Guilt, It Is the Right Thing to Do It was believed that parents should not feel guilty putting their child with Down syndrome in an institution because a person with Down syndrome is not a person. It was believed these children were unable to learn and would cause the families endless heartache and trouble. By place their child in an institution parents were considered to be doing the right thing.

Willowbrook In the 1970’s Willowbrook State School was exposed for its horrible conditions and treatment of residents. This started to make parents think twice before placing their child in an institution.

New Ideas Parents started believing in nurture vs. nature and Ann Greenberg founded the Association for Retarded People (now ARC). John F. Kennedy established a commission to study individuals with intellectual disabilities. Head Start was founded in 1965 and by the end of the 1960s ideas from Head Start were being applied to people with intellectual disabilities. Other organizations such as the National Down Syndrome Society have been found by mothers of children with Down syndrome.

Early Intervention Early intervention gave parents hope that their child with Down syndrome may learn some basic skills. Early intervention is now a federal program for infants with a wide range of issues so that they may receive a wide variety of services from different therapies to nutrition counseling. It has raised the functioning for all these individuals. Early intervention is a true example of nurture vs. nature. It continues to evolve today.

Laws The passage of the Rehabilitation Act of 1973 and then the Americans With Disabilities Act of 1990 provided individuals with disabilities equal rights under the law and proved that their lives mattered.

Inclusion and Mainstreaming The inclusion movement started in the 1980’s with the idea that individuals with disabilities should be allowed to go to general education schools but still be in separate classrooms. In the 1990’s the movement to include students with disabilities in the general education classrooms began. This is still a heated argument. However, it comes down to what is best for the child. Most parents also feel it is important for individuals with Down syndrome to keep a foot in the world of Down syndrome because it is where ultimately they will find their peer group.

Life Past School Where progress has been made there is still not a lot of post secondary options for adults with Down syndrome. Some will have jobs but have trouble keeping them. Between the ages of 18-21 is when most individuals with Down syndrome transition to living outside their family homes.

Genetic Testing Genetic testing for Down syndrome is a heated debate since many who discover they are having a baby with Down syndrome chose abortion. When women do not have genetic testing and have a child with Down syndrome they often say they if they would have known they would have made the biggest mistake of their lives. However, many still feel that women have the right of choice.

Other debates With advances in the medical field some believe there may be a cure for Down syndrome one day. Research has found some possible cures for some of the effects of Down syndrome but none have been tested on humans. Also some individuals with Down syndrome have plastic surgery to fix some of the physical features that are associated with Down syndrome. All of these bring their own debate.

Parents Continue to Fight Parents of children and adults with Down syndrome have been the driving force behind many changes in the world of disabilities. They continue to be the driving force behind awareness and advocacy.

Final Thoughts I felt there was one major theme among the personal stories in the chapter: the parents believe that the joy and love their child with Down syndrome brings to their life has out weighted the struggles and exhaustion. In the end they would do it all over again. There is truly a deep love.