By Lisa Graystone, evolution-vintage.com
 
Lisa Graystone is a Writer and Fashion Entrepreneur, Owner/Stylist of Evolution Vintage (www.evolution-vintage.com) and Evolution Rewind (www.evolutionrewind.com).
 
October is National Down Syndrome Awareness Month.
 
Perception is EVERYTHING in life. We like to organize our lives, compartmentalize and label things so that we can understand them and give ourselves comfort in a world of chaos. My perceptions changed, and I felt an internal shift on May 13, 2011, when my son Blake was born and we were told that he had Down Syndrome. An immediate and automatic label application happened, which inadvertently breeds fear of the unknown and magnifies the barrage of facts and opinions thrown at me. In all honesty, I was terrified in the weeks following his diagnosis. The medical “staff/experts” had no real answers or a road map for me as to what I should expect. I got a lot of “I’m sorry” and very little external feedback aside from the generalizations that only people who don’t have a child with DS can give, “They are so happy,” etc. I did acknowledge their hearts all being in the right place and appreciated their efforts.
 
Over time, I came to realize that this entire journey was all a matter of perception and completely within my control. I could sit and feel “so sorry” for myself and dread what was around each corner, or I could be thankful at this truly unique set of circumstances that was just handed to me. I have never been one to shy away from a challenge before, so I thought to myself, “Why would I do that when this is MY child—a boy with a little ‘extra’ something that in hindsight has given me everything?” It is hard to imagine how irrational your thought processes can be post-partum, fueled by hormones and fear. I laugh at myself sometimes for ever feeling scared, ill prepared, or apprehensive about the future of our family.
 
Aunties, you can help with a perception shift with Mom, family members, AND the society at large. You may even need one for yourself, as a diagnosis of any kind or a label in any form other than “normal” can be scary and emotional at first. It can also be frustrating as YOU want to help your family or friends through any transition but may feel powerless or struggling with your own feelings. It is only ignorance, lack of education, and labels that create this fear. Having a child with Down Syndrome is not all blue skies and butterflies—neither is having a “normal” child. Parenting AND even being the Savviest of Aunties is a very challenging role with each child. Even the most seasoned veterans with a few kids under their belt still face daunting obstacles with each child and their unique needs and personalities. Parenting or being an Auntie to a child with Down Syndrome can be FABULOUS with a wide range of rewards. So far, for me, the triumphs have FAR outweighed the perceived tragedies, issues, or frustrations.
 
Here’s how YOU can Auntie Up:
 
Rack up the Resources: Get educated, and reach out to both local and on-line support from the Down Syndrome community directly. This is a community of inclusion, respect, and encouragement on ALL levels. I am grateful to the National Down Syndrome Society (NDSS) and all of the parents who have reached out, written blogs about their experiences, and are there if ever I need them—All Savvy Aunties are WELCOME!
 
Be a Savvy Seeker: Information seeking is my thing. It makes me feel empowered. When you seek information, remember that each individual child is different and not all of the facts and statistics will necessarily apply. We have the world of information at our fingertips, but not all of it will apply to your niece or nephew. So, don’t panic. With Down Syndrome, I prefer to shy away from the generalizations and stats to parent my son the way I did my daughter. IF I see an issue or have questions, I will reach out to the appropriate people; otherwise, I enjoy my time with my son.
 
Re-Define Normal: What is “normal” anyway? It is such a relative term that I feel puts limits on things. In my world of creative parenting, I have been forced to re-define “normal.” Look at each of your nieces/nephews as label-free. If “normal” means confining my children’s development into “age ranges” or “stage ranges,” I choose to ignore it. There is something freeing about adjusting the expectations of the herd.
 
Never in a million years would I have ever thought that an extra, microscopic chromosome would have such a GIANT impact on my life, perceptions, and character, as well as the lives of all of Blake’s Savvy Aunties. I will be forever grateful that this exciting and challenging opportunity has been given to my family! Down Syndrome? Bring it on!
 
“With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose.” - Wayne W. Dyer

Photo: Courtesy of Lisa Graystone
Published: October 8, 2012