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Tell me about Down Syndrome

Published on 1/20/2019

What is Down Syndrome?

Down Syndrome is a condition where a person is born with an extra chromosome.  Most of us have 46 (23 pairs) of chromosomes while someone with DS has 47.  In this condition, the extra chromosome is located on the 21st pair which is why the medical community calls the condition Trisomy-21.

It happens in a large majority of the cases when either the egg or the sperm came to the party with an extra chromosome due to a random defect in their creation.  It is completely random, however, its randomness increases with age.  The older the parent at the time of conception, the higher the chances of conceiving a person with Down Syndrome.  

It's affect on the person with the extra chromosome varies, but common challenges are low muscle tone, intellectual challenges, heart defects, thyroid issues and other medical problems.  

Some benefits of this extra chromosome are typically 

  • An incredibly loving personality
  • Easy to please 
  • A strong will to improve in areas they love
  • Ability to focus clearly on a simple objective for long periods

How will it affect me as a parent?

As a parent of someone with Down Syndrome, the early years can be challenging.  Your first and primary job is to care for and love them just as you woudl any other child.  Let specialists address their medical needs.  Many communities have early intervention programs designed to provide therapies for people with special needs from birth to 3 years old.  Get them into these programs and get them help as early as possible.  The earlier they get help, the easier it will be on you later - especially if there are other children in the family.

You will have days where you are exhausted and can't possibly comprehend another specialist telling you something medical.  Push through because the results are incredible. Focus on those moments when your child makes a breakthrough and EVERYONE celebrates with tears, hugs, and more hugs.  Your child's therapists may be the most compassionate people to help you through this.  They celebrate along with you but help keep you focused on what you need to do right now.  You will help yourself by not focusing too far down the road ahead.  Just focus on what that child needs right now.

At some point, your child will enter school and there will be IEP meetings.  These meetings are designed to make sure your child has an appropriate education.  Appropriateness is subjective.  As much as schools try to make it as objective as possible, they are still very subjective.  Your idea of appropriate may differ from theirs. Work with them to find a situation you can all live with.

In school, your child is going to have some amazing experiences that you will all celebrate.  First friends, art projects, reading, math, etc.  It will all happen.  This is a child that will learn - at their own pace.  Don't quit teaching them because it takes longer.  If you keep working with them, they will keep trying to learn until they get it.

In Junior High (Middle School), you may start to really see the gap widen between your child's pace of learning compared to typically developing kids.  This is very hard to see, but it is necessary for you to continue to work with the school to get your child the appropriate supports.  This is also where long term friendships start to gel.  You will also see their desire to grow in their understanding of the world.  Their desire to improve themselves becomes evident.

In high school, you will real relationships develop.  Expect love interests to enter the picture.  People with DS have the same urges and desires we all do.  Your focus will be teaching them how to express their emotions appropriately and when it is appropriate.  

In college (yes, I said college), some people with DS do go to college.  Some colleges are set up specifically for people with special needs and have adjusted expectations.  Some colleges don't adjust their expectations but will provide supports to help them understand the materials.  Sometimes, it is better to let your child attend as adult continuing ed (non-credit) classes.  

You are on a road that has a lot of potholes.  There will be times when you are exhausted.  You will also find amazing people along the way who will support you and provide you way more than what you ever expected from them.  Check out this book to learn more about the journey.