For those of us with friends and family with Down Syndrome, it isn’t too far from the norm to be celebrating these incredible individuals, but this month we can give them a little added love.
Down Syndrome is a congenital disorder stemming from having an extra copy of the 21st chromosome. About 6000 babies are born with Down Syndrome in the United States each year and it is the most common chromosomal condition.
You may know that I am fortunate enough to have four younger sisters with Down Syndrome. Sammy (25), Jayne (21), Agnes (15), and Rosie (11). They are four of my favorite people on this planet. Sammy loves school, work, the Special Olympics, and reading. Jayne is a gentle soul and is an artist, loves animals, singing, and above all else The Beauty and The Beast. Agnes is a jokester who loves to make people laugh even if it is at their own expense and is a lovely ballerina. Rosie is athletic and would love nothing more than to be playing baseball or throwing a football all day long.
Growing up with Sammy, Jayne, Agnes, and Rosie was no different than growing up with any of my other twelve siblings. We laughed and played. We got frustrated with one another. It was a very typical family life, except for the fact that there were so many of us. The difference now is that they are still at home with my mom and dad while the rest of us have moved out and started families of our own.
Sammy, Jayne, Agnes, and Rosie will always need to be taken care of in some way or another. While they can do just about anything you or I can do (except when it comes to stretching, as you can see, they win every time), they need a little added supervision. My parents recognized early on that there would need to be extra planning when it came to the girls. That is what got me interested in the practice of Special Needs Planning.
Clients tell me their greatest fear is,
“What happens to my child with special needs if something happens to me?”
To that end, the goal is to alleviate that fear by coordinating planning to accomplish three things.
-The things we know will happen
-The things we hope will happen
-The things we hope will never happen
Knowing that they have planned for the inevitable, parents can spend more time enjoying their days with their children.
I know that when something happens to my parents, my little sisters will be alright. Legal and financial T’s have been crossed and I’s have been dotted. They will be able to continue doing what they love (reading, painting, dancing, and playing) and there won’t be any worry of where they will end up, or with whom.
So, during this Down Syndrome awareness month, give one of my "homies with an extra chromie" a smile and a high five. I promise you, you’ll be better off for it.