{"id":4924,"date":"2019-05-08T13:34:32","date_gmt":"2019-05-08T13:34:32","guid":{"rendered":"https:\/\/njcts.org\/tsparents\/?p=4924"},"modified":"2019-05-08T15:14:44","modified_gmt":"2019-05-08T15:14:44","slug":"looking-for-that-perfect-mothers-day-present-the-best-gift-is-the-right-words-to-uplift-a-ts-caregiver","status":"publish","type":"post","link":"https:\/\/njcts.org\/tsparents\/looking-for-that-perfect-mothers-day-present-the-best-gift-is-the-right-words-to-uplift-a-ts-caregiver\/","title":{"rendered":"Looking for that perfect Mother’s Day Present? The best gift is the right words to uplift a TS caregiver."},"content":{"rendered":"
By Eryn Travis<\/p>\n
I never intended to start a doctoral program<\/strong>, and, certainly, never expected that focus to be about communication and media representation related to Tourette\u2019s Syndrome. Yet, just like receiving a \u201csurprise\u201d TS diagnosis for my son, here we are.<\/p>\n Recently, I\u2019ve had the privilege to interview several other TS caregivers about the type of supportive communication \u2013 verbal and non-verbal messages intended to make someone feel better \u2013 that help and that hurt. It has been an honor that these caregivers trusted me with their stories, and I have enjoyed every conversation.\u00a0 Although this work is in progress, a pattern is starting to emerge that can help those in the caregiver\u2019s network find just the right words to say.<\/p>\n Like many other stories I\u2019ve heard, my son\u2019s Tourette Syndrome diagnosis seemed to come out of the clear blue sky. Yet, on the day he was diagnosed, I had an experience that many might consider unique: an acquaintance said the perfect words of comfort to me. Although these words were delivered nearly 10 years ago, I trace her advice as the start of my passion to advocate for those impacted by TS.<\/p>\n So, what were these words of wisdom? What saintly prose or profound meaning drifted through the universe to my confused and bewildered mind? You may want to lower your expectations.<\/p>\n As I approached the bus stop that day, my friend noticed my stress and asked what was wrong. I blurted out \u201cAndrew has TS.\u201d She looked at me, and then looked at him as he stepped off the bus and said, \u201cWell, I wouldn\u2019t worry about it. He\u2019s handsome, so I don\u2019t think anyone will notice.\u201d<\/p>\n After three hospitalizations \u2013 including one for a medicine that almost stopped his heart \u2013 combined with a jumping, seizing and gasping tic that made it impossible for him to walk, eat or breathe, I think it\u2019s safe to say that people noticed his tics. I also appreciate that, if read without context, her advice might seem almost hurtfully shallow.<\/p>\n However, to me, it was the reassurance that I needed to hear \u2013 at that moment — that people could look past the disorder to the piano and guitar playing, engineer-oriented, Science Olympiad blue ribbon winner, awesome burger maker, mission trip attending, Fortnite playing, loves German class, golfer, \u2018wants to be a summer camp counselor for little kids\u2019 kind of guy that he would become.<\/p>\n This experience sparked my interest in researching the type of communication TS caregivers need to hear. My fellow caregivers do not need me to cite what they already know, which is that no matter how much we love our children, caring for an individual with TS can be exhausting, frustrating, painful, emotional, intense and uncertain. Frequently, to keep the social peace, we remain stoic as someone jokes that they must have TS because they swear or hints that perhaps tougher discipline might smooth behavior or responds with \u201creally, but I don\u2019t see the tics?\u201d<\/p>\n So, should we just tell everyone we know that their child is so handsome or beautiful that no one will notice tics? Uh, no. Advice tends to be pretty specific and individualistic sometimes to be effective.<\/p>\n However my research suggests three themes that have started to materialize: verbal messages that deny diagnosis hurt \u2013 big time; these \u201cdenial\u201d messages have emotional consequences that take a toll on the caregivers well-being; and messages that would help are \u201cbig picture\u201d forms of encouragement or a reinforcement that the caregiver is exhausted and doing a great job as well as a strong advocate for their child.<\/p>\n Most of us do not like to see someone in pain, and consequently, we sometimes blurt out anything just to help. We don\u2019t mean to hurt. It\u2019s just in our human design. Although my research is progressing — and caregiver communication is nuanced and related to where an individual is on his or her caregiving journey — \u00a0the following recommendations may help.<\/p>\n Don\u2019t use words which ultimately deny the diagnosis<\/strong><\/p>\n <\/p>\n \u00a0<\/strong><\/p>\n Do use words of big picture encouragement <\/strong><\/p>\n <\/p>\n \u00a0<\/strong>So, I hope this post provided some comfort to caregivers out there and ideas for those in the caregivers\u2019 orbit on just the right words to help.<\/p>\n Happy Mother\u2019s Day<\/p>\n p.s. To confirm . . . Andrew is, indeed, handsome.<\/p>\n Eryn Travis<\/strong> teaches public relations and public speaking courses at West Chester University. Before entering higher education, she worked on Capitol Hill and was the communications director for the American Association of Airport Executives. As a doctoral student, she is focused on strategic communication — specifically how non-profit organizations shape messages and integrate traditional and new media to connect audiences, combat misperceptions, and advocate for social change. Eryn lives with her husband, Bryan, and children Andrew and Caroline in West Chester, Pa.\u00a0 She is also one of those people who read all of the Game of Thrones books, rewatched most of the series and spends too much time on YouTube trying to figure out how it will all end.<\/em><\/p>\n <\/p>\n\n
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