March 21 was designated as World Down Syndrome Day by the United Nations General Assembly on Dec. 19, 2011. Exactly one week later, on Dec. 26, my husband and I welcomed Madilyn into our family. After her birth, we were surprised to receive her Down Syndrome diagnosis. World Down Syndrome Day is now a cherished event in our house; we celebrate Madilyn and raise awareness about the values of diversity and inclusion.
Down Syndrome is a chromosomal disorder which occurs randomly, across all ethnic groups. In the United States, the frequency is about one in 700 births. It is typical for human cells to contain 26 chromosomes (13 pairs: one from the mother, one from the father). A person with Down Syndrome develops with an extra, third copy of the 21st chromosome, thus the significance of 3/21 as the date for World Down Syndrome Day. The third chromosome can affect development and influence physical and intellectual skills.
Parenting Madilyn offers circumstances requiring a unique lens to navigate. While the list is long, one specific example is her mode of communication. Madilyn utilizes sign language. I wasted many moments feeling sad and worried about Madilyn’s diminished capabilities for speech. I’ve since been introduced to a community of individuals who communicate with their expressions and signs.
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Utilizing an alternate form of communication taught me how often I hear others but fail to be truly present. This is not an option when talking with Madilyn. I can’t make dinner, fold laundry, or scroll my phone while talking with Madilyn. My eyes stay on her, or I miss her signing. In a society where focus is a fleeting commodity, Madilyn reminds me to communicate without distraction. She also demonstrates that communication is about more than exchanging information. I don’t always understand what Madilyn is saying whether from lack of context, or her available vocabulary. In the past, I believed this would be a continual impediment for us. I erroneously equated comprehension with communication. Madilyn models a higher truth.
Connection is about desire and intention.
While these lessons are available to me directly as the parent of a child with special needs, anyone can reap similar benefits by engaging with people of all abilities in schools or community activities. One such opportunity is afforded by the The Miracle League Complex in Dubuque. It includes an accessible playground, sensory activities and enhanced safety features.
An adjacent baseball field hosts baseball and tee-ball leagues for children and adults of all abilities.
The simple joy of visiting a playground is taken for granted by most, but for some populations is unavailable without adaptive and accessible features. At the Miracle League Complex, many families enjoy the freedom and pleasures of recreation otherwise unavailable to them. Learn more about the Miracle League at http://www.cityofdubuque.org/miracleleague. Visit the park and learn from our community members who utilize alternative forms of communication and mobility.
Inclusion is necessary. Inclusion, which is not a trending hashtag or logistical goal, but a state of being. A recognition of our humanity. A heart centered on learning, caring, laughing, creating, healing, suffering and overcoming with others. Ultimately, inclusion dismisses the notion of others altogether. Inclusion is oneness. Madilyn lives with an open heart, disregard for convention and unconventional love. She is patient, kind, loyal and authentic. I strive daily to match her mastery of these traits. It is heartbreaking to imagine a world that wouldn’t create space for her.
To increase awareness and celebrate World Down Syndrome Day, people around the globe wear mismatched, silly socks because socks are shaped like chromosomes. This March 21, I invite you to “rock your socks.” Join me in promoting acceptance: for my sweet Madilyn, but with eyes on broader communities as well. May we value inclusion over comfort, familiarity, convenience or control.
Kathleen Klapatauskas is a mother of four, physical therapist and writer. She currently serves on the Miracle League of Dubuque Board of Directors.
Community inclusion of people with disabilities are so important to families. My uncle Jack, also born with Down Syndrome in the 1930's, was sent to Woodward State Hospital as a young child. It wasn't until the deinstitutionalization movement of the 1970's that he returned to his home county. Closer, but still not home. My grandmother told me years later that it broke her heart to send him so far away but she had no support or services to help in her community and felt she had no other choice. Today, we have education and supports for families to keep their children home. Dubuque is fortunate to have several agencies that provide supportive services. But with cutbacks we are seeing today in education, healthcare, and other supportive services, we must remain vigilant that we continue to have those supports for families and the child as they grow toward adulthood and independence. World Down Syndrome Day!
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Community inclusion of people with disabilities are so important to families. My uncle Jack, also born with Down Syndrome in the 1930's, was sent to Woodward State Hospital as a young child. It wasn't until the deinstitutionalization movement of the 1970's that he returned to his home county. Closer, but still not home. My grandmother told me years later that it broke her heart to send him so far away but she had no support or services to help in her community and felt she had no other choice. Today, we have education and supports for families to keep their children home. Dubuque is fortunate to have several agencies that provide supportive services. But with cutbacks we are seeing today in education, healthcare, and other supportive services, we must remain vigilant that we continue to have those supports for families and the child as they grow toward adulthood and independence. World Down Syndrome Day!
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