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Day 18 ~ Q&A Revisited ~

18 Oct

Today I am going to answer one of the questions that was asked a few days ago.

Question:
Do kids / people with Down syndrome vary in their differences? (i.e., does one child with Down syndrome have the same genetic ‘extras’ and developmental differences as another child with the syndrome, or is it highly varied?) Okay, I know that all kids are unique and develop differently, whether they have an extra chromosome or not, but is there a lot of variation within kids who have Down syndrome?

Answer:
The short answer to the question is a resounding yes!  Individuals with Down syndrome do vary greatly in their differences.

I think this quote from the CDSS website (Canadian Down Syndrome Society) sums it up best:
“The sole characteristic shared by all persons with Down syndrome is the presence of extra genetic material associated with the 21st chromosome.  The effects of this extra genetic material vary greatly from individual to individual.”

What I was told when Jake was born was that we would have to see how he develops, and that there is no way to tell the severity of delays that will occur.  What I was told was that Jake will experience delays, but that he still has a great capacity to learn.  What I was told was that we need to work together with others to explore how to best bring out the potential that lies inside of him.

If you want the honest truth, here it is.  There are things I see in other kids that I envy.  I play the comparison game without wanting to, and it is often harder when you are comparing your child with a disability to other children with disabilities, and noticing where your child is behind.  As I said a couple of days ago, I don’t want to play the comparison game.  But sometimes, it takes everything inside of me not to.

I can take comfort in all of the strides that Jake is making, and all of the ways that he is developing quickly.  I can rejoice in the fact that so far we have avoided any major health complications that others may face, such as heart surgery.  I can be thankful that he was born into our family, with people who love him, in a city that has fantastic resources and Early Intervention programs to take advantage of.  I can recognize the effect that nurture has on individual development, and be thankful that I am doing my best to nurture Jake and give him every opportunity to succeed.

But, I can also see where he is behind his peers who are also diagnosed with Down syndrome.  And that is frustrating, because you can do so much up to a point, but at the end of the day, the extra genetic material affects everyone differently.

If you want to read more on this topic, there is some good information here (look specifically at “Down syndrome, redefined”).  And if you have any more questions for me, let me know!  And finally, to end the day, a couple of random but cute pictures of my kiddos!  Enjoy…

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2 Comments

Posted by on October 18, 2012 in Uncategorized

 

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2 responses to “Day 18 ~ Q&A Revisited ~

  1. Janelle

    October 19, 2012 at 7:21 am

    Karyn, I so enjoy your blog! I read it every morning! Thank you for sharing from your heart and writing so eloquently. As a Mom of a ‘special’ child, I can relate. My child is globally developmentally delayed and now 2 1/2 weeks away from being 23 years old. Like you, my observation through the years is that ‘special’ people are all so very different! It is natural and very easy to fall into the comparison trap. But the huge lesson I am beginning to learn lately is that these ‘special’ people compliment each other, just as much or more than the rest of the population. Not profound but something that has become very real to me!

     
  2. Kathy L

    October 20, 2012 at 10:55 pm

    Well said Karyn…. And thank you for the the reminder to stay away from comparisons….they serve no purpose.

     

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