Connecting black families to resources to improve lives in a most fulfilling way
March 10, 2019 changed my life forever. The eager anticipation I had as I picked up the call from the geneticist to reveal the sex of my unborn child quickly turned to sadness as she curtly reported that my prenatal test came back with a 90% probability that my child would be born with Down syndrome.
After I got over my initial shock, I did what every new mother with a probability of a child with a genetic disorder should NEVER do, I immediately went to Google. The first thing I typed in was “Black babies with Down syndrome." The images that popped up were disappointing, to say the least. How was it that there were literally only five images of black babies with Down syndrome and the rest of the results were of white children with Down syndrome? I have the honor of personally knowing a young black person with Down syndrome, so I knew there had to be more, but where? It took me a couple of weeks, but I did manage to find two online support groups for caregivers of black persons with Down syndrome. I immediately joined the groups and spent hours combing posts and looking at pictures of people I imagined my child would resemble, not knowing at the time that most people with Down syndrome actually look more like their family than other people with Down syndrome.
I was so fortunate to meet Crystal at a recent Down syndrome conference. She eloquently details her story and the unique challenges of black families with Down syndrome. We are all tasked with lifting up the entire Down syndrome community. -Steve Friedman
I was fortunate that my pregnancy was for the most part routine and I had no complications. Additionally, I was under the care of a perinatologist exclusively throughout my pregnancy which provided me with a level of comfort as I had extra appointments. I was very fortunate to have this level of care, especially given the alarming statistics of black birthing persons. The CDC reports, "Black women are three times more likely to die from a pregnancy-related cause than white women. Multiple factors contribute to these disparities, such as variation in quality healthcare, underlying chronic conditions, structural racism, and implicit bias.” Additionally, “infants born to black people have markedly higher mortality rates than those born to white people.”
Traumatic Birth Experience
My primary concern throughout my pregnancy was in fact not about my son having Down syndrome, but whether he and I would even survive childbirth. I am grateful that I had a doula (a trained professional who provides expert guidance and support for a person through a significant health-related experience) along with our healthcare providers who worked tirelessly to ensure that my son got the care he needed while he was in the NICU and that I was able to recover from a very physically traumatic birth experience.
Support Groups
Throughout my pregnancy and postnatal period, the online support groups supporting black families that I joined helped immensely. I also had a sense of peace that everything would be alright, something I didn’t necessarily feel in the other support groups I was in on social media. I know for me, my journey became more about the shared experience of being a black person in America who happened to be raising a differently abled child, instead of being a parent of a differently abled child who happens to be black. I cannot speak for all black parents who have children with Down syndrome, but I believe many more of us worry about our children navigating through life as black persons in general.
Unique Challenges of the Black Community
With disparities in life expectancy (the life expectancy of a black person with Down syndrome is just about 48 years of age vs. 60+ for the Down syndrome community as a whole), unequal access to appropriate, quality health care, socioeconomic status, systemic inequalities and discrimination in health care, lack of/or poor access to community supports, inequalities in education and access to services, Black people face a number of challenges that make it difficult to navigate life in general, much less life as a person with a disability or as a caregiver with a loved one with a disability.
Additionally, whatever systems are in place to ensure white and other families are receiving adequate support from their local Down syndrome organizations and other social support agencies are not working for black families and persons with Down syndrome. In informal polling, we found that many of our families were not informed of services provided by local Down syndrome organizations, and some did not know they even existed. Those families who did know about services often felt uncomfortable asking for assistance or did not feel events were inclusive to all cultures and thus stopped attending.
Introducing the Black Down Syndrome Association
The Black Down Syndrome Association (BDSA) is the first national, black-led, nonprofit organization, specifically created to address the systemic inequalities present in society that inhibit black persons with Down syndrome from living their best, most fulfilling lives. The mission of the Black Down Syndrome Association (BDSA) is to connect black families in the Down syndrome community with resources to improve their lives in a more meaningful way by addressing the many inequalities present that increase barriers to access, support, and education. We strive to fill the gap for the families we serve.
Kelli Caughman and I have committed ourselves to do the work to help support all black families as they navigate this journey. We currently have a growing and vibrant online support community of over 700 families. We have also begun partnering with local, national, and global Down syndrome organizations to help them strategize how to better connect with black families and support them. Through our online support group, we are offering educational seminars to cover topics such as IEPs, transitioning into adult services, healthy boundaries, and other topics that our families want to get more information about. Kelli and I are excited that we have been warmly received in the larger Down syndrome community as a much-needed and previously overlooked resource and we look forward to future collaborations and endeavors as we spread the word about our organization and support our families. Being black mothers to black boys, we recognize the value of them seeing positive, affirming, and uplifting images of black boys and girls in all aspects of life.
Crystal's Bio
Crystal Lotterberry is a dedicated law enforcement professional with over 20 years of experience in public service and substance abuse counseling. After the birth of her son, Griffin, who was born with Down syndrome in 2019, Crystal was compelled to begin volunteering in the Down syndrome community. It was during this time that she met Kelli Caughman and the idea of starting an organization to help support black families with children with Down syndrome was conceived. In 2022, they co-founded the Black Down Syndrome Association, the first national nonprofit organization dedicated to providing support and resources to black families and their loved ones with Down syndrome.
When Crystal isn't working on growing BDSA, she enjoys traveling the world with her husband and son, photography, and volunteering.
Crystal A Lotterberry,
Director, Black Down Syndrome Association
I'm thrilled to announce The Essential Guide was just honored with
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The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier? Together we can make a difference!
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