I’ll never forget the session. She said, “Look at this,” as she pulled out her phone and opened her Facebook app. My client’s mom reached over her toddler to show me a video. “Look at this man,” she said as the video began to play. “He has Down syndrome, too. Look at how he’s talking.” On plays a viral video of a gentleman with Down syndrome speaking before Congress. We watched it briefly in the middle of our speech session, with her little one seated between us.
She looked at her child then up at me, her eyes filled with both hope and despair. She put her hand on her kid’s back and asked, “Will my child be able to do that?”
The question rocked me. For new clinicians, these questions about expectations for a child are difficult to navigate as it is. However, viral social media posts can make this conversation even more challenging, as they potentially create or nurture unrealistic expectations in the minds of hopeful parents.
Scroll through your Facebook feed any given day and you’ll likely see a video of a man or woman with autism spectrum disorder or Down syndrome doing something incredible to help break down barriers. I should note I’m one of the first people to quickly click “share now” when I see these posts. They inspire me. They make me proud to be in this field and work with the populations I do.
However, I now understand how the “awareness” being raised about these specific populations on social media usually leans toward those on the higher ends of their spectrums.
Social media isn’t necessarily the primary force propelling parental expectations through the roof, but it often pushes them even higher. As professionals, we can use these videos as an opportunity to educate while still instilling hope.
How do we do that? I think it starts with the commentary we provide, both on social media and in our interactions with parents.
Through our textual commentary on such posts, we can highlight what the person in the video or story accomplished and how it relates to their individual journey. We can carefully craft our wording to change the focus from the diagnosis to the person when sharing or commenting on a post. For example, instead of, “This man, despite his diagnosis of Down syndrome, addressed Congress today,” we could write, “This man with Down syndrome, who worked on being able to express himself verbally for most of his young life, addressed Congress today.”
Both commentaries highlight the diagnosis of Down syndrome, but one focuses specifically on the person’s journey from not being understood to speaking in front of Congress and what he worked through to get there.
Highlighting the person’s journey also helps parents understand how their child’s life with their diagnosis is unique. The challenges they overcome will look different. As SLPs, we can educate parents and help them reframe their ideas of “success.” A success is each milestone or achievement of any size that improves their child’s communication and engagement with their family.
Teach parents to celebrate their children’s successes relative to where they began. For one family, this might mean standing in front of Congress advocating for the rights of people with Down syndrome. For others, these celebrations happen when a child signs “more” or says “mama” for the first time after not communicating throughout their earlier years.
As professionals, we can use our social media commentary to promote this idea of measuring a person’s communication success by focusing on their journey to achieve it, rather than the end result.
Danielle Newcombe, MS, CCC-SLP, is a travel therapist. email@example.com