Katie Herrygers opened the month of October with the following message for her Facebook friends: “(It’s) Down Syndrome Awareness Month and I’m here to answer any questions and share stories if you’re in need.”
Herrygers and her husband, who live in Michigan, have a son with Down syndrome, Jameson.
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And Herrygers truly delivered on her promise to answer questions and share stories throughout the month.
Here are five pieces of wisdom and some anecdotes that we thought were absolutely worth sharing.
The importance of person-first language
Herrygers used Oct. 4 to talk about person-first language.
“A disability is something a person has, it is NOT who they are,” she wrote. “Name the person before the descriptor. It is better to say, 'Jay has Down syndrome' or 'a man with a visual impairment.'"
Make sense?
Under the same guidelines, this is why even in the news, we avoid outdated terms such as “wheelchair-bound man,” or “autistic child.” We prefer “man in a wheelchair” or “child with autism.” It’s about the person first, and then the description -- not the other way around.
OWL: Observe, wait, listen
On Oct. 10, Herrygers gave us a little peek into her family’s daily life.
“Jameson is pretty social and loves to say hi and wave to anyone and everyone more and more lately,” she wrote. “When giving Jay tasks or teaching him new things, he often just needs a bit more time to consider, to think and to respond. In so many ways, this has been a life lesson for me! Jay encourages me with his actions and his words (signing, action or verbal) to give him the grace and the opportunity to respond in his own way, at his own pace -- when Jameson is ready.
“Sometimes that means five minutes of a little back and forth between ‘First let’s change your diaper, and then we can watch some of ‘Coco!’ … He hears my request, he listens to understand, and he knows what I am asking. He though, like so many other kids, just wants to watch ‘Coco’ now, rather than wait. But after a few minutes of stalemate, he looks at me, signs ‘first’ and points at his diaper, and then very clearly, points at the TV and says ‘Coco!’ Then, he puts both hands to the ground, plops his bottom down and sort of side rolls onto his back, so we complete his diaper change. And, you guessed it, when I’m all done, he’s back to pointing at the TV and saying, ‘Coco!’ and signing ‘please.’ What a kid, right?!”
Herrygers continued, “All people with Down syndrome experience cognitive delays, but the effect can be mild to moderate and is not indicative of the many strengths and talents that each individual possesses.”
Well said.
He’s not always happy -- but who is?
“Contrary to what a lot of people notice about Jameson when they meet him, he's not always happy,” Herrygers wrote Oct. 17.
“In fact, he has a wide range of emotions just like you and I. And he's starting to test limits and get vocal when things don't go his way. He's loving to his core and generally up for a hug after he's had time to observe. But don't let his adorable mug trick you into thinking he's always happy. He's human, and with that reality comes the good and the bad/sad moments inevitable to this thing we call life.”
Never underestimate the power of reading.
Oct. 16 brought these wise words.
“When I say Jay enjoys books, I mean it,” Herrygers wrote. “Research shows that reading books helps foster language development. And by that, I’m not just talking about verbal spoken words, but the recognition of the meaning of a word as an action, feeling or descriptor. Books encourage creativity, thinking, memory skills, empathy and so many other life lessons.
“I so cherish the moments recently where Jay selects a book from the pile, carries it over to me and climbs into the seat of my lap to read to him. And bonus, he always seems to search for and spot the smallest image and point it out. Like the mouse and banana in ‘Goodnight Gorilla’ or the little mouse on each page in ‘Goodnight Moon.’ Jay notices the small things, and it's a reminder for me to notice those things in life, too.”
Don’t be sorry.
On day 20, Herrygers posted the following: “'I’m sorry' are two words no expectant mom or dad wants to hear. And they shouldn’t ever hear, ‘I’m sorry’ followed by ‘your child has Down syndrome.’ Saying ‘I’m sorry’ assumes a child will amount to nothing or very little. It places them in an ‘other’ box. What do you say? ‘Congratulations!’ 'What a blessing!' 'How wonderful!'"
She went on to say that some of those ideas are from the book “Scoot Over and Make Some Room” by Heather Avis, which is a good read for any parent, Herrygers said.
We’ll end with this note from Herrygers.
“Words have meaning. What we say matters. How we say something matters. You may know where I'm going with this: the R word. When I hear it used today in movies, in conversations, in comments online, it takes my breath away and I feel repulsion and anger. Now I have a story to tell. I was a user of this word in my youth. I didn't think anything of it. I heard it and I used it, too. But one afternoon, my family and I went to watch the Lions football game at a friend’s. In this family, at the time, all I knew was that one of the siblings was a little different than me.
"I was sitting around a large oak table in the dining room surrounded by about five other people. We were chatting, about what I honestly don't remember. But I do remember my 14-year-old self nonchalantly saying something and then following it with ‘Isn't that R...?’ I was met by a short silence, maybe only a few seconds. As I looked around the room, everyone was looking intently at me. After a beat, the conversation continued. But in that moment, I felt shame and regret. I was embarrassed using that word in that way with those people. See there, ‘those people.’ Fast forward to 2017 and giving birth to a healthy, beautiful baby boy who has Down syndrome. There is no them and us. There's no ‘those people.’ There's human. There's value. There's worth. There's no place for the R word.”
Maybe you know someone with Down syndrome or maybe you don’t. Hopefully, you learned something today, through Jameson’s story or otherwise, about the importance of this month for awareness, acceptance and inclusion.
Herrygers has a blog where she chronicles her family’s adventures. She’s written a book too, called “I Am Me.”
This story was first published in 2019. It has since been updated.