These families want the world to know the many positives to having a loved one with Down syndrome.
Even on the social media platform that I understand least of all – TikTok – you can find yourself face to face with unexpectedly uplifting and profound stories. Recently I actually came across an account called Positive About Down Syndrome, which led to a “story of stories.” It’s a page full of joyful stories that, through the testimonies of people’s lives and photos of disarming smiles, dismantle the darkest prejudices about what it means to live with Down syndrome or with someone who has it.
Do you have a child with Down syndrome? Have you received a prenatal diagnosis of it? We know that dark clouds might thicken over your heart and on the horizon, and that the future will be depicted to you as frightening and sad. Well, the warnings of doom and gloom are not entirely to be believed. People who try to scare you that way have not yet told you the truth about what it means to be a person with Down syndrome, or to have a child or other family member who is affected by it.
#Nobodytoldme The truth about Down syndrome is the title of the book –- available to view for free online, or for sale in print –- written and funded by parents, siblings, and grandparents of people with this syndrome. It shows that people affected by it are special people in the truest sense of the word.
The book is full of photos, vignettes of people’s lives, and stories. The authors describe it as “a collection of personal experiences written by young people with Down syndrome, family members & friends that reflects the reality of our lives & why we’re Positive about Down syndrome!”
See what this adorable 2-year-old with Down syndrome has achieved in lockdown
For many mothers of children with Down syndrome, there was something missing at the time of diagnosis, and also in some cases at the moment of childbirth. What was missing was a frank, thorough, and honest explanation of the truth.
That baby is your baby; that little person is not and will never be only his or her syndrome. Their life will bring joy, not only fatigue. Perhaps they will bring a lot more joy than less challenging lives, to tell the truth.
Usually doctors and counselors don’t downplay at all the efforts, risks, or anxieties you might have due to the needs of these children, but they shouldn’t hide the positive aspects in the closet! These are children in every way. Yes, they are affected by a genetic anomaly, but they are able to experience and to help us be centered on what’s most essential: love.
Driving this initiative is the desire to help parents understand what having a child with Down syndrome really entails—the living presence of a unique and unrepeatable person, who may be affected more or less seriously by the syndrome. If they really knew, they would not deprive themselves of such a precious gift.
This booklet is a testimony to the beauty of every life. One of the things that makes it so effective is that it is not organized by or aligned with any particular faith or ideology; the parents, families, and people with Down syndrome represented in this book would probably disagree with each other on many matters of religion, ethics and politics. Nonetheless, they can all agree that the life of a person with Down syndrome is worth living and can bring great joy.
Above all, there are beautiful children in the book, including twins. There’s even a dad with Down syndrome, who had a son who is neurotypical and very proud of his dad (we wrote about them earlier). So I would say that there’s no reason to be shy: It’s okay to proclaim it from the rooftops. A person with Down syndrome is worthy of living and brings immeasurable joy to those around them.
Mother of daughter born with Down syndrome: “You’re made to feel their life is valued less”