Connecting Down Syndrome Communities Through Social Media

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Five minutes on Facebook will tell you a lot about the world—unfortunately, one usually doesn’t leave with an optimistic view of humanity. From the harassment that many minorities face to the manipulating of American elections. However, the Down Syndrome community has carved out a place for itself in the smaller corners of the internet.

The Down Syndrome Diagnosis Network is a non-profit group created to connect, give families the information they need and provide support. This organization has created multiple Facebook communities, called the DSDN Rockin’ Families, where expecting mothers and fathers can connect with other expecting families. There are also support groups available for parents with kids with Down syndrome above the ages of one.

Jillian Benfield, the social media advisor and Communications Director for DSDN, oversees and advances the growth of these groups. “[These groups] allow parents who just received a diagnosis to get paired with other who have or will have children with DS the same age. It’s a layer of support,” said Benfield. The number of people participating in these groups have grown to 8,000 and Benfield said “[many] have expressed DSDN to be a lifeline.”

“I’ve spoken with parents of older children who say they wish they had social media back when their kids were younger. I think it allows parents to connect in a way that would be impossible without. It also provides a plethora of resources and information for families,” Benfield said.

One member of the DSDN Facebook group, Autumn Pulaski, has also expressed her gratitude for the support she and her son, Grayson, have received since his diagnosis.

“Before we had Grayson, we never knew there was a Down syndrome community,” explains Pulaski,” but the moment he was born, the NICU gave us information on the two organizations here in Arizona… and [the organizations] all reached out to us.”

The family had a rough start since the beginning of their son’s diagnosis. “We told the doctor that we didn’t want any genetic testing done,” said Pulaski. However, Pulaski’s doctor suggested she take a Counsyl test to find out the baby’s gender. Pulaski agreed to the test because her other children—four girls and five boys—wanted to know if Grayson would have been the “tie-breaker” between the genders. However, Pulaski’s doctor tested her baby for Down against her wishes and then “the second thing out her mouth was,” according to Pulaski,”” If you want, you can come in later today to fill out paper work for an abortion.’”     Both Autumn and her husband, Michael, said that having an abortion would have never crossed their mind, and were shocked by their doctor’s behavior.

Despite the lack of support from their doctor, the Pulaski family found support through the Down syndrome communities on Facebook through DSDN. The families that the Pulaski’s have been connected with help each other with a range of issues from health issues to rude encounters with strangers.

“I’ve met six moms and we all relate and share stories, “explains Pulaski. “If our kids are doing a certain thing, [we’ll] just send [the group] pictures and say, ‘Does your son or daughter do this? What could it be? and someone [will tell us] “Oh it’s because of this or that.” Last month, Grayson had an emergency operation and had a temporary feeding-tube put in his stomach. Pulaski said many folks on the Facebook shared their experience with feeding tubes and were able to provide her with information. She insisted that without their help, she would have been very lost.

“They were texting me while we were in the hospital [after his birth] asking if they could come and play with us,” said Pulaski.

Facebook isn’t the only place where the Pulaski family found solace. Madyson Pulaski, the oldest child of the Pulaski family and Grayson’s respite caretaker, created an Instagram page for her youngest brother called “Gushing over Grayson,” after his birth in August 2017.

“I saw a lot of Instagram accounts just being [on the app] of those who are in the Down syndrome community. So once Grayson was born, I decided to be a part of that [community], and it’s a great way to connect with people all over the world” said Madyson.

Grayson’s Instagram account has followers from all over the country and the world. One special connection the family has made is with a family in England whose daughter also has Down syndrome.

“Technically with time differences, [the English girl] and Grayson were born almost at the same time,” Madyson said. “So, to see differences between someone living in the UK and us living in US between our healthcare and lifestyles is really interesting.” She also said that many families from South and Central America follow Grayson’s account, and Pulaski often uses Google translate to write back to the families.

Grayson’s sister believes that building a community online is great way to cultivate a positive support system for those in the Down syndrome community. She explains that even through language barriers and miles-in-between, every person that the Pulaski family has come into contact with have impacted their lives greatly.

“I think the positives [of social media] can outweigh the negatives! It’s all in how you choose to use it,” said Benfield. As a mother of a child with Down Syndrome herself, she explains that social media helped her through her and her son’s journey as well. “For me- it was a life line. It’s where I went from grief to hope,” Benfield said.

“I think social media will continue to be a resource for DS families,” Benfield said. “It will connect people who never would have met otherwise. It will help people feel less alone [and] will provide people with information they may not have come across without it.”

Photo by Madyson Pulaski

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