Shortly after we received Cedar’s Down Syndrome diagnosis, a young lady doing hospital rounds with the physician group shared this poem with me. It was a profound moment, because I felt like the words gave place to all that I was feeling.
Changing Perceptions of Down Syndrome
A lovely young lady named Moa reached out to me and asked if I only shared stories of babies, though that has been the focus, to serve as a source of encouragement, I love hearing from individuals of all ages who happen to have Down Syndrome.
Moa lives in Sweden with her mother, Lotta. Lotta shares that in Sweden, Down syndrome is accepted in many ways.
“it’s too bad that the research and prenatal testing may make People with Down syndrome disappear. We need them to teach us about life. Who decides what’s normal or not? Moa came just to me jus because it was meant to be. Maybe it was for me to work on my patience. Hard work and many doctors appointments later she is just amazing.
Thank you Moa and Lotta for your time in answering our questions! You can follow Moa on Instagram @krigarenmoa
I sat transfixed, sometimes sad, sometimes joyful, but always encouraged, that there would be more that Cedar could do… than what he could not do, these young adults on the show were showing me just that.
Sean’s mom was more than happy to not only respond to my inquiry but also to chat, she is an amazing advocate and says she only chose to do the show because she truly wants others to see the possibilities for someone who has Down Syndrome, she felt it would be a game-changer’ for people with Down Syndrome, and parents with a prenatal or birth diagnosis who would be able for the first time, to SEE the future possibilities like never before! Sandra was kind, down to earth, helpful and inspiring.
Sandra McElwee and her husband were married for 18 months when Sean arrived. The couple had different ideas with Sandra desiring 2 children and her husband Rick desiring 1 child, in the end, Rick won. Throughout Sandra’s pregnancy there was no mention of Down Syndrome. Sandra underwent 8 Level II Ultrasounds because Sean’s bladder was distended (big) and doctors were watching his kidneys. No one ever saw a marker…or didn’t notice one.
Sandra and Rick found out doctors ‘suspected’ Sean had DS about an hour after he was born. Sean had ingested meconium and had pneumonia—Sandra says, “I was more afraid he would die than I was about the extra chromosome…Rick and I just looked at each other and said, ‘This is the kid God gave us, the journey he wants us on..so let’s get a book!” Prior to his birth, Sandra had never met one single person with Down Syndrome. At birth Sean had Pneumonia, a collapsed right ear canal, ASD (which closed by itself by the time he was 5). Later he had his first surgery at age 1 to remove an undescended testicle, and another close after for tubes in his ears.
Sandra was 32 when Sean was born and she mentions that being members of their church and their faith made a huge impact on their initial reactions.
I asked about where Sandra found support in the beginning, as Google was not yet an option, Sandra sites the Down Syndrome Association of Orange County as her initial support system. In 1993, when Sean was born, the Orange County DS association was all volunteer based. Sandra called and left a message and another mom called back and came to visit with a welcome basket. Later on, Sandra says, “She picked Sean and I up and we carpooled to our ‘Mommy and Me’ Infant Stimulation Program together. Having the camaraderie of other moms going through the same struggles—figuring out how to feed our kids, discovering new medical issues—I wouldn’t trade those days for anything. Today the moms In that program are still my best friends.”
When asked about how things have changed from 1993 when Sean entered this world until today, Sandra says:
“I SO WISH things were drastically different for moms learning of a diagnosis today!
Let’s look at history…in the 50’s 60’s (and before) a mom delivered a baby with DS…the Dr. Said, “You don’t have to take this baby home. He/She will never recognize you as their mother, never talk, never walk, never be an asset to society. Tell your friends and relatives the baby died and take it to the Institution down the road. That’s where ‘these’ kids live.”
Today—prenatal diagnosis. “You don’t have to deliver this baby. I have an opening next Tuesday and can schedule your termination.”
NO information about the POSSIBILITIES that their child has—only the WORSE-CASE Scenarios that they can dredge up are told. There are many studies on how a negative diagnosis delivery negatively impacts the family—and in my opinion, the future of the child when the parents trust this medical professional to ‘know’ and they have zero expectations for their child. There’s training programs for the Doctors…there are scripts, and there are great informational booklets—few doctors investigate the available resources.”
Sandra, like any other mom has dreams for Sean, dreams “that he be able to be independent of the social services he needs. To own his own home and have a job he like and find someone he could have as a great companion.”
It was even Sandra herself who desired back in the dial up days to help other moms.
“In the 90’s when the internet was new parents got amnio results and had 2 weeks to decide what they were doing before they ‘couldn’t’ abort anymore. Moms dealing with hormones, dreams just dashed and the stress takes the ability to decide rationally away. And QUICK you have to decide.
There was an email list ‘the Down Syndrome Listserv’ and parents with a prenatal dx would come on to ask us what It was like having a baby /child/adult with DS…it took 3 days to get subscribed to the list, then DSL took forever to download the hundereds of supportive messages they would get…and it just took too long. I decided the info should be more readily available so I gathered the stories, including stories of parents who had adopted. And created the first website for parents with a new baby or prenatal diagnosis.There was always a family featured who was waiting to adopt too for the ones who just couldn’t imagine raising their child.”
Sandra no longer has that site but does have one where others can find encouragement, as well as the books she has authored. SandraMcElwee.com has some great blog posts, is a place to find encouragement, and to locate some of the books Sandra has written about Sean and her journey with promoting acceptance for him.
*(amazon affiliate links included)
The books she has written are largely about Sean’s inclusion in the school system. “Sean was an inclusion pioneer. His elementary school inclusion was so successful that the school transformed to an inclusive school by the time he was in 4th grade. Intermediate school and high school…not so much. We had one fight after another and it was the longest 6 years of my life—and really—how the book was written because I was documenting their bad behavior—so it was half done by the time he graduated!”
Sandra has been involved in countless ways advocating for families touched by Down Syndrome, when she comes across a new mom, she says:
“CONGRATULATIONS and Welcome to the family! The future’s bright and spend every minute enjoying baby-hood because it goes too fast. Don’t worry about the wedding —LOL because your kid will have one…and save for college! There’s over 200 programs and more being added all the time!”
So as not to give Sandra all the spotlight, Sean had some questions of his own to answer:
That we can do anything anyone can and that we want the same things that everybody wants.
People think we are happy all the time and we have bad moods and sad times just like everyone else.
Yes, but I like it because they give me things free.
No, not till I was in the transition program and another student was mean to me.
I was at Home Depot but I quit and I am starting a job soon at Get Air Surf
Being recognized everywhere and posing for pictures with the ladies
It was so fun and I loved playing with them.
I think all the funny ones are on the show.
To get married and have a house at the beach.
Sean has also launched a website Seanese.com where you can find apparel with his awesome “seanisms” from Tshirts to Beach blankets, pillows to autographed posters. Be sure to check out Born this Way on A & E where you can catch up on any episodes you have missed, or purchase past seasons on Amazon. Sean is also on instagram @sean_from_born_this_way
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