Jenny Chabot, PhD, CCLS
October 2021 Child Life Blog
National Down Syndrome Awareness Month
Associate Professor, Ohio University
Child and Family Studies

October is Down Syndrome Awareness Month, designed to celebrate the many and varied abilities and accomplishments of children and adults with Down syndrome. This month was first designated in the 1980’s and has been recognized every year since. Child life professionals are ones who work directly with pediatric patients and their families as they navigate a medical diagnosis with the additional layer of a child who has Down syndrome. As a society, we are fortunate to have global resources at our fingertips, with high profile non-profit organizations such as the National Association for Down Syndrome (www.nads.org) and the National Down Syndrome Society (www.ndss.org) that offer copious resources and support for families living with this diagnosis. Additionally, many of our communities in which child life professionals do their work are fortunate to have local and regional support and resource systems, including Down Syndrome Associations, that provide multiple opportunities for families to feel an important sense of community and social support.  

There are multiple ways child life professionals can celebrate this month and be strong voices in promoting advocacy, awareness, and inclusion for individuals and families across the lifespan who have a loved one diagnosed with Down syndrome. Here are a few ideas for you and your healthcare staff:

1. Select a day in October to wear the colors blue and yellow as a staff, the colors for Down syndrome awareness. Create and wear buttons that state, “Ask me about the colors I’m wearing today” or “October is Down Syndrome Awareness Month.” 
2. The Down Syndrome Information Alliance suggests committing 31 random acts of kindness to honor the month, 1 for each day in October. Do random acts of kindness in your own communities or with your staff.
3. Spread awareness – join a Down Syndrome Buddy Walk, participate in activities in your community, or perhaps participate as a staff together at a community event. Or better yet, partner with local support agencies to co-host an event. 
4. Volunteer with any of the Down syndrome advocacy groups, community centers, or agencies in your community.
5. Feature patient stories where children with Down syndrome have navigated a medical condition.

And to personalize this month’s celebration of awareness, I would like to introduce you to a member of the ACLP child life community: Whitney Garrett, CCLS, and mother of two-year-old Brenna, her daughter who has Down syndrome.

Whitney has been a CCLS in radiology for 10 years, first with Riley Hospital for Children in Indianapolis, IN, and now with Nationwide Children’s Hospital in Columbus, OH. She has an important perspective both as a CCLS and as a parent raising a daughter with Down syndrome with her husband Josh and their daughter Madison, born this past spring. Whitney has always been a fierce advocate for children and families throughout her child life career, and that has only increased as she and Josh have navigated Brenna’s experiences throughout her life so far.  As Whitney stated, “After having Brenna, I’ve become a more knowledgeable and avid advocate —it’s become personal.” 

I asked Whitney to share with the ACLP membership the things she felt were important for child life professionals to know when working with patients who have Down syndrome. Here is what Whitney said truly matters:

1. Walk into the experience with an open mind. As with any child and family you work with, get to know their story. Build and develop a relationship just as you would with a typically developing child and their family.
2. Try not to make assumptions of how a child with Down syndrome will be as a patient. Don’t assume they may not understand certain things, especially if a child is non-verbal. If a child with Down syndrome is unable to share information or advocate for themselves, for whatever reason, don’t be afraid to ask parents/caregivers what you aren’t able to assess in your initial encounter with them.  What are their child’s favorite things, what makes their child most comfortable in stressful situations, or what have their previous experiences been like during visits with healthcare providers? 
3. Even though we talk a great deal about the importance of using people-first language, it can be surprising how often Whitney hears professionals not using it, e.g., “Down syndrome kid” or “Downs kid.” Use people-first language and use the full name of Down syndrome. Although she takes the time to gently educate those who don’t use people-first language around her, it can be a long-held habit that we don’t always think about. Whitney acknowledges that it does bother her when she hears it because Brenna is a child first who happens to have Down syndrome. She never wants anyone to overlook the fact that Brenna is indeed a child who will be an adolescent some day and a young adult and an older adult with Down syndrome. Whitney knows firsthand how much it is appreciated to hear people-first language. 
4. Be careful not to assume the stereotypes that exist about individuals with Down syndrome. One stereotype Whitney talked about is the idea that they are always happy and always smiling. Brenna is indeed a very happy girl, but she has a wide range of emotions, and there are things and experiences that make her scared, sad, and mad. 
5. Know that some children with Down syndrome might have extra medical needs and depending on their experiences with treatment, may have difficulty coping with hospital and other healthcare experiences. Be patient, communicate with the family to figure out what works best for their child, and come up with a plan to help them become successful. Brenna sees ENT and audiology every three to six months and must have labs drawn annually. Because of this, Whitney knows the importance and value of interacting with healthcare providers who have patience and work with her and her family to understand the best ways to provide support to Brenna and the entire family system during these sometimes-stressful medical visits. For example, would Brenna benefit from preparation, or via social stories, or by psychologically preparing her? Don’t be afraid to initiate those conversations with families. Take that extra step, provide choices, and be willing to adapt your plan to move forward with the family. As Whitney shared, “Sometimes healthcare professionals might say something like, ‘Oh, they won’t be able to complete their MRI awake because they have Down syndrome.’ Try not to assume they can’t because with the right strategies and tools, they very well may be able to. With Brenna, she may learn a little differently and it may take her longer, but she always gets there, especially with practice and repetition.” 
6. Partner with resources in your given community. When Brenna was diagnosed prenatally, Whitney and her family were immediately connected to the Down Syndrome Association of Central Ohio. She describes the resources and support they receive as life changing from resources to preparing for Brenna’s birth, to potty training tips, to workshops for siblings, to providing a handout to give to the pediatrician during Brenna’s first visit. They provide on-going webinars, community events, family mentoring programs, seminars on navigating the educational system, and resources for support throughout the entire lifespan (estate planning, guardianship, etc.). Whitney was matched with a mother raising a child with Down syndrome when Brenna was a newborn, and now Whitney has moved full circle as she has just been matched with a new mom who needs the kind of resources and support Whitney received before and after Brenna’s birth. The beauty and magic of community support is not new to our child life professionals and Whitney is living proof of this.
7. If your hospital has a clinic for children and families who are navigating this diagnosis, partner with them. Whitney and Josh have worked with the Down Syndrome Clinic at Nationwide Children’s Hospital, and it has been a valuable resource as they navigate the medical needs of Brenna during her early childhood years. 

Lastly, in honor of this month, here are 12 facts about Down syndrome that you may not know, shared from  https://www.pediatricsoffranklin.com/practice-news/twelve-facts-for-down-syndrome-awareness-month/: 

1. Down syndrome is named for Dr. John Langdon Down, who wrote the most prominent paper describing the disorder in the 1860s. The name Down syndrome was not standardized until 1975.
2. Down syndrome is far and away the most common condition involving chromosomes, occurring approximately in one out of every 691 births.
3. More than 400,000 people are living with Down syndrome in the United States.
4. The most common type of Down syndrome is trisomy 21, which means an extra copy of the 21^st It is not hereditary. The other two types are translocation and mosaicism, which account for around 5% of cases.
5. While incidences of Down syndrome correlate with the mother’s age, around 80% of babies with Down syndrome are born to mothers under the age of 35.
6. Nothing a parent does or does not do is known to cause Down syndrome during pregnancy – it occurs randomly.
7. Down syndrome occurs regularly in both sexes and across socioeconomic classes.
8. With the great strides made in understanding this disorder, individuals with Down syndrome are living long, happy lives. The life expectancy for these individuals has increased from 25 years in 1980 to over 60 years today.
9. Down syndrome leaves people with an increased risk of some medical conditions. These conditions include congenital heart defects, respiratory issues, hearing problems, Alzheimer’s disease, leukemia, and thyroid disorders. Parents and caretakers need to take extra care in screening for medical issues.
10. Students with Down syndrome are now included in many classrooms across the country. In the past, special needs classes were the only option for learners with Down syndrome, but today most experts recommend full or partial inclusion in many standard classes.
11. While individuals with Down syndrome experience cognitive delays, they are often mild to moderate. Most people with Down syndrome lead fulfilling and productive lives.
12. Down syndrome is still a little-understood disorder. While researchers are aware of what this condition is, we know little about what causes it or how symptoms develop. There is hope that future research can lead mitigation of some symptoms.

References:

National Association for Down Syndrome, (2021, October). www.nads.org

National Down Syndrome Society, (2021, October). www.ndss.org

Twelve Facts About Down Syndrome (2021, October). https://www.pediatricsoffranklin.com/practice-news/twelve-facts-for-down-syndrome-awareness-month/