My Son With Down Syndrome Has a Cheering Section
My son’s Down syndrome diagnosis and collateral health issues have forced us to get good at rolling with the punches. Those punches, in no particular order: nine sets of PE tubes, a tonsillectomy, two adenoidectomies, celiac disease, sleep studies and a blood disorder that adds an extra element of suspense to regular blood counts, a small airway, a speech delay and hypotonia.
Then there’s school and its cavalcade of acronyms: IEP, FBA, BIP, FAPE and LRE, to name a few. The paperwork from eight years of IEPs fills an entire filing cabinet now, not counting the 5-pound binder I lug to school meetings with me. But even with all of the curveballs, there’s been one constant: my boy has a huge cheering section. These aren’t people who simply hope he does well as they watch passively from the sidelines; they paint their chests (OK, figuratively) and root hard for him. They celebrate the victories with us and give him grief when he needs that, too.
Since the beginning, it’s been his grandparents, aunts, uncles, great aunts and cousins. They came to the NICU, marveled at his beautiful blue eyes and gave me a few blessed moments of “normal” in that blur of panic and worry. They got just as excited as we did when he started walking and then finally started talking. When he started school, that cheering section got bigger. His dedicated teachers who’ve nimbly and repeatedly adapted routines and systems, wanting to see him succeed (then giving him all the credit when he did). His elementary school principal, endlessly patient, creative and solution-oriented, who loves that my son calls her “Sunshine,” and still visits him regularly, despite being promoted to assistant superintendent. His friends at school, who literally cheer him on in his accomplishments and make him feel like a regular kid, too.
Some of these gestures may not feel like much to the person giving them, but believe me, even a warm smile or kind word has the capacity to turn a rough day around. And all of the brainstorming and hard work over the years have helped my son get to where he is now: a fifth grader who understands division, symbiotic relationships and how to return a serve, just like his peers.
So to everyone who’s ever been there for my son or the rest of us over the past 11 years, thank you so much! Knowing you have our backs keeps us going when the curveballs come.
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