World Down Syndrome Day

Yesterday, March 21th was World Down Syndrome Day.  This is a subject near and dear to my heart as up until I stopped working, I dedicated seventeen years of my career to working with individuals with developmental disabilites including those with Down Syndrome. Seven of those years was as a social worker. I have a special interest in adults as when people with developmental disabilities are young they receive lots of attention and resources because they are cute. When they become adults, they are no longer cute and are often forgotten by friends and family and for many other reasons.

Down Syndrome is a genetic disorder where there is an extra 21st chromosone.  There are different types. In 1866, Dr. John Langdon Down, was the first to accurately describe the description of Down Syndrome thus the condition was named after him. Down syndrome occurs in approximately 1 to 800 to 1,000 births per year. The older the age of the mother, the more likely it is to occur.

In 1929, the average life span, if they survived, was 5-6 years old.  Now it is close to normal age.  One of my clients was in her 70's. Most individuals with Down Syndrome are in the mild to moderate range of mental retardation and are able to live full productive lives, live independently, be employed in the community, maintain friendship, have sex, have children and get married.  It should be noted that males with Down Syndrome are sterile, but there have been rare cases.  Individuals with Down Syndrome also marry others with a different type of disability.

Individuals with Down Syndrome have some health comonalities, such as, developmental delays, gastrointestinal problem (40-60%), congenital heart disease (40-60%), hearing (recurrent ear infections) and vision (cataracts) problems, hypothyroidism, excessive weight gain, smaller bones, increased white blood cells, recurrent upper respiratiory tract infections, constipation, behavioral changes and depression.  Physical features include flat midface, upward slanting, small oral cavity, redundant skinfolds, fingers are short and stubby, toes have increased spaces and hand creases.

When it comes to personality, my experience is that people with Down Syndrome usually are very friendly, caring, people pleasing, easy going and like physical affection.  However, if they do not like what they need to do or are asked to do something, they can be some of the most stubborn persons.  One thing that is helpful is that they like to please others and like praise.  This means that reward systems and time out works well.

I had one client whose supervisor came running to me saying, "Nancy is having a seizure."  I laughed and said that she doesn't have a seizure disorder. When I got to Nancy I said, "Nancy you don't have a seizure disorder, so stop it."  She immediately stopped, smiled at me and attempted to give me a hug.  I told her that you don't get hugs for faking a seizure, but you do if you are working.  Once she started working I immediately praised her and gave her a hug.  This is one of my favorite experiences and they are much smarter than most people give them credit.

As the video indicated, individuals with Down Syndrome have same needs as everyone else. Like anyone else friends and support are an esential part of life.  The following are just a few of my pet peeve when working with adults and teenagers:

People with Down Syndrome usually know that they are different than others and are often teased or harrassed and called retarded. Although they are retarded it has negative connotations which hurt their feelings and reinforce feelings of low self-esteem.  I hate it when someone uses the word "retard" to insult another person. This is also hurtful.

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  Individuals with Down Syndrome usually have some speech impairments which is frustrationg for the individual and often causes them to give up trying to communitcate or think that they are bad for being unable to speak properly.  With my clients, I used to tell them that "it is my job to try to understand you, but I may need you to slow down or use other words. I would also ask them to be patient with themselves as it is important for me to hear what you want to say."  It takes patience and you get better at it as you become more familiar with the person, just as it is with other people that you meet.
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  I hate it when others speak louder or speak in a condensending manner.  This would be insulting to us and is for someone with Down Syndrome.  They are not children to be spoken to in such a manner.  If you had a stroke, would you like it if your family spoke louder and treated you like a child. I usually speak slower and use simpler words, if called for.  Often they may have quite a sense of humor, so it makes it more fun.  Other times, I tell them that it is important for me that you understand, so please ask me if you don't understand what I am saying.
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  I hate conversations and meetings that could happen whether the person is there or not as often people talk about the individual rather that involve them in the conversation.  They are told what to do, rather than being asked what they want.
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  I hope that this gives you an idea and some background regarding individuals with Down Syndrome and that you will think before you speak because you may not know that you are hurting someones feelings or offending someone. Think about how you would like to be treated.