Saturday, December 22, 2012

He doesn't look like he has Downs

For many people in my generation this may be the face of Down Syndrome to you: 

Chris Burke, a teenager with Down Syndrome, was one of the stars of the late 80's TV show Life Goes On.  This was probably the only experience that a lot of people had with Down Syndrome.  I loved this show and never would have imagined that it could be a foreshadowing as to what my life may be like in the future.  

My cousins and I were very blessed to have grown up participating in activities at our local YMCA with a young man named Brad.  Brad was about our same age and had Down Syndrome.  He looked different from Chris Burke and he had different levels of ability than Chris.  I don't remember Brad's last name and I am not sure where he is now, but I am so grateful that we had the privilege of knowing him.  Again, I would have never imagined what his presence in my life was preparing me for.  

Over the last few months we have met and come into contact with many children (of all ages) with Down Syndrome.  In some ways these children all look similar, but in many ways the all look very different.  My goal in writing this is two fold.  First, I want to be able to share with my boys the journey that we have been through with them.  Secondly, I want to educate others about the things that make our family unique.  

Today, I hope to educate you.  When we share with people that Brinkley has Down Syndrome we tend to hear, "He doesn't look like he has Downs."  Honestly, there are times that I look at him and I don't think he looks different.  There are other times that the shape of his beautiful little eyes scream at me that he has Downs.  One of the things that I have learned is that children with Downs first and foremost look like their families.  There is no denying that this little round face is very much like his Daddy's.

There are physical characteristics that are common with Downs: slant of eyes, small features, placement and shape of ears, and an often protruding tongue.  Children can have all or any combination of these (along with a few others) just like the children in your family may have any combination of the physical characteristics that are common in your family.  I have not been able to find any research that supports the theory that the less prominent the features the less severe the case, though this is a popular line of thought.  

Like Autism, children with Downs can fall anywhere on a spectrum of severity.  Nearly all children with Downs have some level of cognitive disability, but it varies from child to child.  Many children with Downs are mainstreamed in school and only need extra help in one or two areas of study.  Children with Downs can (and do) accomplish the same things as children without Downs, they just do it at their own (often slower) pace.  

Since getting Brinkley's diagnosis we have become so much more aware of how many people around us are living with Downs.  It is amazing how much has been learned about Downs in just the last twelve years.  Children are living longer and healthier lives.  In my parents generation it was common for these children to be institutionalized because of how little we understood about helping and teaching them.  Today, with therapy, our children do the same things as their peers.  

I would encourage you to check out the photo gallery linked below to see the many faces of Downs.  You will see that they do share some common things, but they are all very different, and all VERY beautiful!

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