Working with People with Down Syndrome: Things You Should Know

People with Down syndrome have an extra copy of chromosome #21. There are three types of Down syndrome:

Trisomy 21
· 95% of people with Down syndrome have it, like me
· Three copies of chromosome #21 rather than two

· Two-three percent of people with Down syndrome have it
· Part of the 21st chromosome breaks off and reattaches to another
· One third (or 33%) of cases gets passed on from a parent

· Two percent of people with Down syndrome have it
· Early cell division resulting in some cells having 46 chromosomes and some 47

Did you know? Down syndrome is not an illness or a disease, it is a developmental disability.

Sometimes people with Down syndrome can have health problems or difficulties because of it. A British doctor, John Langdon Down, first described the syndrome in 1866. It was not until 1959 that Down syndrome was found to be an error in the 21st chromosome.

When you are talking about Down syndrome or to someone with Down syndrome it is important to always use the right words. It is “Down syndrome”, not “Down’s”. It is important to always use person-first language. That means, I have Down syndrome, but I am not Down syndrome. Please do not call me a Down syndrome person. I am a person before my disability. That means I am a man with Down syndrome, but I am not a Down syndrome man.

Working-with-People-with-Down-Syndrome--Things-You-Should-Know-1Be positive- do not use words like suffering because I am not suffering. I have a great life! Say no to the R-word! Please never, ever use the r-word because it is a negative word and it hurts our feelings. If someone called me the R word it would hurt me a lot and be very painful. I don’t want people to be calling me or anyone else that word. Please be kind and use kind language.

The average life expectancy (or how long people with Down syndrome will live) for people with Down syndrome has changed a lot in the last fifty years. This is in part due to the abolition of institutional living for people with Down syndrome, better health care, and better education. People with Down syndrome are now living longer than their parents. Years ago many people with Down syndrome died early because they were not treated very well. On average, in 1983 people with Down syndrome only lived to about 25, now the average is 60. There are people with Down syndrome living into their 70s and 80s.

In my next blog, I would like to give you some tips about working with people with Down syndrome. Do you have any questions about working with people with Down syndrome? If you do, please contact me and I will answer them in one of my blogs.