Author Spotlight
Libby Marsh
Then 10-year-old Ainsley Pyle walked through the entryway of her mom’s house. She went into the kitchen to give her mom Sara a hug after coming home from her dad’s house and then into the dining room. Immediately she noticed that the dinner table was strewn with books, packets, pamphlets and DVDs instead of the usual toys and decorations.
Ainsley froze.
She didn’t have to squint to read the words “Down syndrome,” plastered across every surface.
“Mom, what are these?” Ainsley asked.
The two of them went to the living room and sat down as Sara delivered the news — the little brother Ainsley had been looking forward to for months was going to have Down syndrome.
Ainsley felt the panic rising and the tears begin to well up. She’d heard the term Down syndrome before, but she didn’t know what it meant. Would she still be able to play tag with him in the backyard? Talk to him about his day? Get ice cream with him?
“He may have some developmental delays,” Sara said, struggling to find how to explain it while dealing with her own fear as well. “He’s going to look different and he’ll have health issues.”
At age two, Crosby was behind his peers — still working on sitting up on his own. His parents would brush it aside, “Oh, it’s harder for him. We’re working on it.” Not Ainsley.
Even as Sara tried to explain, Ainsley’s fear and confusion only grew.
“How about this?” Sara announced. “We’re gonna go on Amazon and we’re gonna order you some books.”
They bought an excess of chapter, picture and informational books and gave the extras to Ainsley’s 13 cousins. She put aside her reading of Magic Tree House to learn about the developmental effects and causes of Down Syndrome, and she began to understand.
And when Crosby Orlando — an energetic, fun and happy boy — was born she started volunteering. She volunteered at Down Syndrome Innovations — attending their Step Up for Down Syndrome event — and helping her parents run Everything But Typical, an organization supporting families of children with Down syndrome. This included selling merchandise, raising awareness about Down syndrome and raising money to help parents of kids with Down syndrome.
———
Seven years later, now-junior Ainsley is Crosby’s biggest supporter. While people in public will give Crosby judgemental glances and whispers, Ainsley ignores them. She has never let his differences be an excuse.
Crosby is non-verbal — only able to communicate through a computer, clicking on symbols of the words he wants to say or by using sign language. He also has a low muscle tone meaning it takes more effort to move his muscles properly and he has alopecia. He has been going to physical, occupational, speech and eating therapy since he was four weeks old.
One exercise he often does in speech therapy is blowing through a tube into a milk jug filled with water. It’s hard and tiring, ending in exhausted screams. The speech therapist will try to convince him to complete the exercise. Then Sara will try. Then his dad will try. But it’s only Ainsley’s — “Hey bubby, I need you to do this for me.” — that will do the trick.
“If [Ainsley] engages and claps for him and gets excited, [Crosby’s] like ‘Oh, absolutely,'” Sara said. “[He’ll do something] all day long to make her happy.”
———
“He’s going to do it,” she would say. “Yes, [sitting] is harder for him. But I know he can do it.”
Eleven-year-old Ainsley took the energetic little Crosby up to her room and placed him in a seated position. She gently placed her hand on his back to hold him up: then she let go.
Crosby started to fall, but she caught him. And then did the same thing again and again — for 45 minutes.
Until she shouted to her mom downstairs.
“He can sit!”
Sara was skeptical as she trudged up the stairs. No, he can’t, she thinks he can do something he can’t.
But Crosby was sitting up on the bed, looking around, laughing. He wouldn’t sit up for any physical therapist, but of course, he would for Ainsley.
———
Today, Ainsley continues to challenge him to do the things she knows he can do. She pushes him to work on his sign language and communication whenever possible.
If he ever needs help or wants his favorite food — a ‘Bomb Pop’ or a frozen ‘Go-Gurt’ — there’s no cutting corners. Ainsley tells him to sign it.
Crosby’s teacher at Tomahawk Elementary for the past two years, Alexa Cocolis Scarlett, has seen him grow up and learn to communicate and has seen his relationship with his sister grow.
“I think peers see Crosby and think he’s gonna need help, [but] he doesn’t,” Scarlett said, “The best thing [Ainsley] can do is push him to be the best person that he can be, just like she would if he didn’t have Down syndrome.”
Crosby will always have challenges. He may never be able to sign a full sentence. He will continue to get odd looks in public from little girls mumbling to their parents ‘Why does he look so funny?’ But that doesn’t matter because he will always be able to sign “sister.”
“He can find sissy,” Sara said. “It’s the most complicated sign he knows, but he’ll sign it for her.”
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