Special Guest Writer: Lisa Graystone, Writer and Owner of EVOLUTION VINTAGE (www.evolution-vintage.com)


October is Down Syndrome Awareness Month.

Do you have someone in your life that has a baby or child with Down Syndrome? Have you wondered how you can help them? Or help mom and dad deal with a diagnosis or a child with a disability? 

My second child, Blake, was born Friday, May 13th  in a very fast, traumatic fashion.  Never has my character been so tested, my constitution so tried, or my values and belief system so rocked as they have been in the last five months.  He made his entrance blue and lifeless, and his first sounds resembled a watery gurgle, not a cry. His birth was fast, and as a result he had lungs full of water and had the umbilical cord wrapped around his neck twice. I was unable to hold him before they rushed him to the special care nursery for respiratory therapy and monitoring.

We spent six days in the hospital. During this time, due to the shape of his eyes, the doctors suspected Blake had Trisomy 21, also known as Down Syndrome (DS). I had two separate items to emotionally deal with while attempting to recover from just naturally giving birth to an 8 lb. 3 oz. baby. I live 3,000 miles away from my family but had the support of my husband, mother and father-in-law, and all of my son’s new Savvy Aunties who are composed of my California circle of friends by my side.  My only sibling, Lori, after hearing of the news of Blake’s traumatic birth and suspected diagnosis, "Auntied up" in a HUGE way by hopping on a plane from Toronto, Canada to the Central Coast of California. Within hours, Blake’s Auntie was here for him, his sister, Kaleigh Rain, and myself as well.

My sister not only brought me comfort by having my family close by, but she also set my mind at ease by being able to care for my 3.5 year-old daughter while my husband and I were in the hospital those 6 long days.  When my husband had to work, she would come and spend the nights with me, making me laugh and reminding me that life was still going on while my world was standing still.  My mother joined us three days later and we all, in our shock held our breath until his test results were revealed: YES, my son has Down Syndrome.

What was supposed to be the most joyous and amazing event turned out to be one of the most traumatic and dark of my life thus far. It put my belief system to the test in a way that words could never possibly convey.  When I had moments alone I sat and wondered why we have the expectations we do. I expected everything to be “normal,” perfect, and a happy celebration, instead of celebrating and finding the perfection in what I was given. I realized that it was my own perceptions and expectations that were the cause of my despair, not the beautiful boy I was given.   I still don’t have all the answers, just like every other parent.  I sometimes still question what will Blake become? What will his life be like? And realize that I have the same questions about my daughter. What I do know is that what he accomplishes in his life will be a direct result of what Blake puts into it, just like every other person. His life will be what HE wants it to be. I cannot force my expectations, wants, or desires for my children on them. I can only be there to assist and guide them as they grow. Our children, as mothers or Savvy Aunties, are our greatest teachers if we are open to accept their lessons. As time goes by I realize how PROUD I am of my son's extra chromosome. Turns out thankfully, MORE is MORE.

Here are some ways to interact parents of a child with Downs Syndrome:

LISTEN  It is hard when in the midst of an emotional situation, be it a surprise diagnosis, traumatic birth, or any other emotional moments with your nieces or nephews, but mom and dad need to be surrounded by LISTENERS. Take the time to listen to all the thoughts, fears, good and bad feelings.  Sometimes feedback is just not required.

KEEP IT REAL Unless you are a pediatrician who specializes in Down Syndrome, please refrain from offering “Advice” or “Generic Statements” about DS or people with DS. Keep it real and admit, along with mom and dad, you are as baffled and clueless as they are.  It is o.k. not to have all the answers and a journey of education you can all take together. Although you feel like you are helping with general/generic statements like “DS children are the most loving children” or “and I know someone…” they are not what mom and dad need to hear -- not yet anyway.

CELEBRATE Be there with the champagne (or sparkling cider) to celebrate the birth of the beautiful child that has just come into your family (biological or chosen). A birth of ANY kind is a cause for celebration not for condolences. Many people gave me the “oh my God,” burst into immediate tears, and “poor Lisa” when they learned the news because of their lack of education and fear. These feelings, although real and legitimate, are something that does not need to be expressed to the parents.

BE A RESOURCE Be a resource for mom and dad as they cope and come to terms with their reality. Be available to make them meals, help care for other children, or bring them information if it is what they ask for. This support is priceless. My sister cared for my daughter, did my laundry, and kept my household together, and Blake’s other Savvy Aunties just after he was born cleaned my house and shopped for groceries so my husband did not have to worry. AMAZING!



Blake and his Auntie Lori

How to care for a baby with Down Syndrome

It is very simple. The EXACT same way you would care for any other infant or baby. We must keep in mind that children with Down Syndrome ARE MORE LIKE OTHER CHILDREN THAN THEY ARE DIFFERENT!   Many children with DS do suffer from other health complications and associated surgeries which would require special care but on average, and in our case, it is the same.  They just need the love, cuddles, special time and attention that only a SAVVY AUNTIE can provide.

FAST FACTS:
Down syndrome is the most common chromosomal disorder in the world. Approximately 1 in every 733 babies is born with Down syndrome, representing approx. 5,000 births per year in the United States
 
Approx. 6 million people in the world and more than 400,000 people in the United States currently live with Down syndrome.

Down syndrome occurs at conception, so nothing in the pregnancy can cause Down Syndrome to occur. Neither parent is the “carrier” of the extra chromosome. It is a completely random genetic “error.” It is caused by an error in cell division called nondisjunction. Researches do not know why this occurs.

80% of babies born with Down Syndrome are born to women under 35 years of age.

Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some high school graduates with Down syndrome participate in post-secondary education (University or College). Many adults with Down syndrome are capable of working in the community and living alone, but some require a more structured environment

REACH OUT: National Down Syndrome Society

Published: October 19, 2011
Photo: gregorydean