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. When people with disabilities are young they often may receive attention or are cute to others, but once they are adults they are often forgotten by their family or friends because they are not longer cute or 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 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.
Individuals with Down Syndrome have some health comonalities, such as, developmental delays, gastrointestinal disease (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 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. - Individuals with Down Syndrome usually have some speach 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. - 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.
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.
What is your experience with someone with Down Syndrome or what did you learn from this post? All comments and questions welcomed.
What a great post CC and it’s lovely that you have shared your personal experiences of working with people with Down’s syndrome. Bravo.
Angela
Thank you Angela,
This was one of my favorite posts to write. I have a heart for those “forgotten” minorities especially those who have difficulty advocating for themselves.
.-= Clinically Clueless´s last blog ..What Would You Do? =-.
This is an excellent post. i am a father of three teenagers that have autism. I also worked as a job coach and caregiver for other adults with developmental disabilities. You share the same pet peeves as I do. i can’t stand it when people talk loud to people with disabilities as if they can’t hear you. I will and have called people out who have done that to my daughter. I hate baby talk too. It happens way too often even in the care giving field.
.-= Chris Stonecipher and Friends´s last blog ..Disability and Stereotypes =-.
Wow, what a handful with just having three teenage daughters let alone with autism. I also hate “baby talk.” I don’t even do that with babies. I try to speak with words in English and as if I were speaking with someone else. Of course, some baby talk is appropriate.
On April 2nd, it is World Autism Day and I plan to do a post on what autism is and is not. Thank you for commenting.
.-= Clinically Clueless´s last blog ..What Would You Do? =-.
Thanks for sharing this CC and it’s amazing to learn about the increase in life span…in the village of Rossett we had a downs resident ‘Steve’ whol always used to smile and say he was ‘going to work’ (off to a carehome) for the day…
He live to be 36 at that time considered old…..
Thanks for this post – it brought back plenty of memories…
Their increased life span is amazing to me. “Steve” sound like many individuals with developmental disabilities that I’ve worked with. It was quite rewarding as it sound like “Steve” was in your life. Thanks for sharing.
.-= Clinically Clueless´s last blog ..More Truth Sinking In!! =-.
I remember that Steve character. we all used to have a good laugh at him.
Jim- do your impression of him- hilarious!
Why is everyone referring to him as, “Steve”?
Hey everyone! was that Steve? Or was that “Steve”?
You know, the one with the social / physical / spaz impediment, yeah, “Steve”, that’s him.
snigger snigger snigger!
Such a caring, sharing, social awaring blog this is!
arf arf arf!
Welcome back FF and I don’t remember Steve……are you making it up?
in fairness he was known in the locale as ‘mongy steve’.
The use of the word “mongy” makes my skin crawl, but it used to be a common word used to describe people with Down Sydrome because they had similar features of Mongolians. Still it makes my skin crawl.
.-= ClinicallyClueless´s last blog ..And the Winner Is… =-.
in fairness mongy steve never used to mind. he just used to wave a lot.
Oh, how sweet. Is he still alive today?
.-= ClinicallyClueless´s last blog ..And the Winner Is… =-.
no.
he’s dead.
but his spirit lives on and once a year people meet in the griffin to do impressions of him.
a fitting tribute
Steve the moth? Still no idea
Something I read recently sums up my feeling about all this. I’ve dredged it up, and would like to share! It’s from Don Cupitt (a postmodern philosopher), and he’s arguing that the old (modern) fixation with “curing ill people” is just a myth:
“It sets up a contrast between the way we are now and a primal founding state of health and well-being that we allegedly need to get back to. That’s a mythical pattern of thought, if ever there was one. It invokes a Golden Age, an original perfection by contrast with which the whole of our present exisyence looks blighted. But the very idea of such a Golden Age is quite unhistorical, and rather uselessly discouraging. It is also very woolly and ill thought-out. Even in everyday medicine the notion of health is notoriously vague, and influenced by current fashions and expectations. There is no such thing as perfect bodily health. Mental health, too, is only a metaphor and always relative to local cultural norms. As for a healthy human-condition -as-such, or view thereof, what could that be?”
The Time Being (p 143)
Thanks for sharing this quote Andrew – food for thought!
I disagree with the mental health part of the quote as there are definite illnesses that yes, are not the “social norm,” but impact one’s ability to live significantly… However, I do believe that many of our “behaviors” are only problems due to what is socially acceptable. Someone with a developmental disability often have goals set by other people. For instance, a careprovider may say that the person is stubbon and non-compliant. Where as, I state that the person chooses or prefers to make a different descion. Often when a person becomes a “client or patient” they must have goals. I use the analogy that because you are a client you have goals and are being scrutinized; however, because I am an employee I also must have goals.
.-= ClinicallyClueless´s last blog ..And the Winner Is… =-.