Carolyn Swanson received news of Dorothy’s Down syndrome diagnosis when her daughter was born. She asked CHOMP staff members if she could be connected with other Down syndrome families. Because HIPPA laws prevent staff from sharing information, Carolyn researched and found that there were no established support groups in Monterey County. Determined to find other families, Carolyn eventually connected with another mother of a Down syndrome child, Cassie Mills. Together, they co-founded Magic Babies Monterey County. The support group’s name is purposeful and significant. They both experienced firsthand the emotions, challenges, stereotypes, confusion, and fear associated with the diagnosis and wanted families to recognize there is nothing wrong with their child; they are unique, and what society may view as different is just their magic. “What we went through in feeling alone, we don’t want the next group of parents to go through.” Carolyn shares.
What is Down syndrome?
Down syndrome is a genetic alteration in the development of the 21st chromosome. Most people are born with 46 chromosomes (23 pairs, one set from each parent). Individuals with Down syndrome are born with an extra copy of the 21st chromosome, so they have three 21 chromosomes, a total of 47. According to the CDC, approximately 6,000 babies born (1 in every 700) in the United States have Down syndrome yearly.
There are three types of Down syndrome: Trisomy 21 (extra copy of the 21st chromosome, which 95% of the Down syndrome population have), translocation, and mosaicism. The causes of Down syndrome are unknown and can originate from the father or mother. Those with Down Syndrome are at greater risk of congenital malformations of the heart, hypotonia (low muscle tone), hearing loss, frequent ear infections caused by smaller ear canals, hypothyroidism, vision problems, and have a higher risk of leukemia and Alzheimer’s.
When discussing Down syndrome, it is important not to refer to it as a “disease or illness.” People do not “suffer from” or are “afflicted” with Down syndrome. Many people with Down syndrome may have difficulty pronouncing words, which can be caused by hypotonia in the tongue (making the tongue muscle weak and more challenging to articulate sounds).
October was first designed as Down Syndrome Awareness Month in the 1980s, and the goal is to celebrate people with Down syndrome and create awareness of their accomplishments and abilities. The designation provides an opportunity for educators to celebrate diversity within their classes and teach how Down syndrome children are more alike than different from their peers. Teachers and administrators can find suggestions for activities like “Rock Your Socks Day” and “Buddy Walks” online or through the Magic Babies organization.
Cassie Mills is more than willing to talk with her daughter’s classmates. “Watching those kids ask really meaningful questions, pay a lot of attention, and then watch the bond between Audri and them grow just from a half-hour class is amazing.”
For parents, books are one of the most effective ways to teach about diversity, history, and challenging subjects. “We’ll Paint the Octopus Red” (by Stephanie Stuve-Bodeen) and “47 Strings: Tessa’s Special Code” (by Becky Carey) are popular books on this topic. “Adventures of SuperDuperKid: Friendship Numbers” (by El Brown M.Ed.) has characters with different diagnoses and special living circumstances that make them unique. Look for the character ‘Dottie,’ a young girl with Down syndrome who was inspired by our cover girl, Dorothy!
Progress has been made
“There has been a societal shift in how we value, care for, and embrace kids like Dorothy.” Carolyn shared. She reflected on how much has evolved regarding Down syndrome awareness and disability services in the last two generations. They were not protected by law until the Public Law 94-142: The Education for All Handicapped Children Act of 1975.
Carolyn, Cassie and the other “Magic Babies” parents are finding that the friendships they have formed with other members of the organization have made their individual journeys less lonely. They cherish their magical children as well as the community they have created. “What I love so much about Magic Babies is that we are here to support one another and its amazing that our kids brought us together.” Kori, mother of Birdie, shares. October is the perfect time to reflect on how we can all create a welcome and inclusive community for children like Dorothy, Audri and Birdie.
Resources:
Magic Babies Monterey County is a parent-to-parent volunteer support group. It includes other disorders and disabilities. Magic Babies Monterey County is an affiliate of the National Down Syndrome Society. The group looks forward to holding its first annual picnic since COVID this spring and has worked with approximately 110 families (ages ranging from infants to adults). You can get more info on their Facebook page at Magic Babies Monterey County and on Instagram @weare_magicbabies.
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