Sunday, April 20, 2014

Myths aka My daughter is not always happy.

I started this post for World Down Syndrome Day. I'm only a month late!  

There are lots of myths out there about Down syndrome---which is kind of funny since everyone knows someone who has a child with DS.  Just go somewhere with your child with DS and someone will say how their second cousin has a Downs kid.  (Hey!  That's what they say!)  They will almost always mention how this child is always happy and loving at family reunions.  (Their family member must handle crowds much better than my daughter does.)  I'm not judging these people at all.  I'd much rather have someone try to engage me in conversation about Sara than ignore her or look at us with pity. I appreciate their attempt to find some common ground---especially since the classic questions "What's your name?" and "How old are you?" don't get your conversation very far with Sara.

Anyway, here are some of the myths that I've heard about people with Down syndrome and the truths as I've experienced them.

People with Down syndrome are always happy.  Variations:  They are angels here on earth.  They are so innocent and could never do anything wrong.  
I recently read a news article about a young man with Down syndrome who had been suspended from school for aggression.  I don't remember the exact situation but I remember the comments.  Countless readers were appalled that he had been suspended.  After all, people with DS were all loving and kind and could never be mean or aggressive.  It must have been a huge misunderstanding because these angels on earth are incapable of doing anything wrong.  It's not in their nature.  

I can assure you that none of those commenters were a parent (or teacher) of a child with DS.  Sara is incredibly sweet and kind.  She has a great heart.  She also bites and hits.  She is capable of doing wrong---just like any other 5-year-old.  She is very often happy but not all the time.  She experiences all the emotions that any other child does.  She is a human being, after all.  An extra chromosome doesn't change her into a robot incapable of human emotion or feeling.  Oh, and every morning when I have to get her up from school, she looks and acts nothing like an angel on earth.

People with Down syndrome will never get a job or live independently.  I also hear the converse of this---that all people with Down syndrome will be able to live independently, marry, and be famous actresses on Glee.  
I've read a lot of debates about whether or not DS is a spectrum disorder like autism.  Those who say it's not a spectrum disorder say that you either have it or you don't.  You can't "kind of" have Down syndrome. Those who say it is a spectrum disorder point to the wide variety of needs that people with Down syndrome have in all areas of life.  Some are very healthy; others have countless medical problems.  Some are verbal; others are not.  Some learn to read and write; others do not.  The list could go on and on.  That one little extra chromosome can affect every aspect of a person's life or barely affect their life at all.  

Back to the original myth---it is unfair to assume that every child with Down syndrome will be dependent on caregivers for the rest of their life.  It is also unfair to assume that every person with DS will live independently in the community.  There is such a wide varying of abilities in people with Down syndrome.  As with any person, they will reach their highest potential when encouraged and, maybe even, pushed to be as independent as possible.

Everyone with Down syndrome has three copies of the 21st chromosome.
I actually didn't know that there were three types of Down syndrome until the pediatrician suggested Sara might have Mosaic DS.  (She does not.)  

95% of people with Down syndrome have Trisomy 21.  Every cell of the person has 3 copies of the 21st chromosome.  This is the type of DS that Sara has.

1-2% of people with Down syndrome have Mosaic DS.  Some of their cells have an extra copy of the 21st chromosome and some do not.

3-4% of people with Down syndrome have Translocation.  In this type, a part of the 21st chromosome breaks off and attaches itself to another chromosome.  Cells then have an extra piece of the chromosome but not an entire extra chromosome.

Families suffer from having a child with Down syndrome.  It's not fair to the siblings and the parents always get divorced.  
I don't have all the statistics in front of me and I won't pretend that I took the time to find them all.  (After all, you'll never find two stats that agree anyway.)  It is true that having a child with a disability can be very hard on a family and a marriage.  Statistics do show that there is an increased divorce rate for families with disabled or chronically ill children.  However, those stats do not apply to families of children with Down syndrome.  Dr. Brian Skotko has spent his entire career conducting studies to show how a child with DS can positively affect your family.  If you are really interested in this information and the studies behind it, I would encourage you to read some of his work.

As a teacher, I have met some great families that have young adults with DS in them.  I've also met some that I wouldn't choose to socialize with outside of my professional relationship with them.  This is also true of families who have children with autism or any other disability.  Families are families no matter who is in them.  Some function well.  Some do not.  A family won't be perfect because it has a child with DS in it but it also won't disintegrate from that either.

Kids with DS never grow up.
They do grow up.  Just like every other human being.  They turn into adults in every way.  This is one of the many reasons it's important to teach them boundaries and social skills when they are young.  My mantra is:  "What's cute at 5 isn't cute at 15 and is criminal at 25."  Sara loves men (preferably between 45 and 60).  She has an uncontrollable desire to touch them.  Because of her height, she ends up grabbing butts--a lot.  Because she's 5 and cute, people smile it off.  They won't be smiling it off when she's 15 and they really won't appreciate it when she's 25.  That's why we are working on it now.  Because she will grow up!

Also, if you see an adult with Down syndrome---they are an adult.  Please treat them as such!  Can you imagine if someone talked to you as a 5 year old all the time?  How frustrating would that be?

Children with Down syndrome are only born to older parents.
Again with the stats that I don't have in front of me.  The majority of babies with DS are born actually born to women under 30.  That's because the majority of all babies are born to women under 30.  While being older increases your chances of having a baby with DS, younger women are not at all exempt.  Any woman could have a child with Down syndrome at any age.

People with Down syndrome plateau and stop learning.
This isn't true of anyone so why would it be true of people with DS?  Everyone can continue to grow and learn throughout their life.  Now, if your child with DS is 15 and still working on phonics, it might be time to find another way to teach them to read or to focus on important sight words but that doesn't mean they won't learn anything anymore.  It just means phonics isn't going to work for them and you might need to prioritize the important skills that they need to learn at this phase of their life.

All people with Down syndrome will be over weight.  
A lot of people with DS do struggle with weight but a diagnosis of DS does not have to equate with obesity.  Like every other human being, they will benefit from proper diet and exercise.  They should also have their thyroid functioning checked regularly, as this can be an area of concern and can lead to weight gain.

People are afflicted with or suffer from Down syndrome.  
Why can't we just say that they have Down syndrome?  It's a result of their genes.  I don't suffer from curly hair.  I'm not afflicted with shortness.  Those are just things that I have because of my genetics.  Sara has Down syndrome.  She doesn't suffer and she's not afflicted.

All people with Down syndrome are stubborn.
This might not be a myth.  I'm pretty convinced it's not.

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