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Cerebral palsy builds student’s work ethic

Topeka Capital Journal - 12/29/2020

For Santos Ramirez, life has been a series of small steps.

First, doctors weren’t sure if he would ever walk. His mother, Teresa Gallegos, said that when Ramirez was just 6 months old, she began to notice he faced struggles other infants his age didn't. A doctor diagnosed him with ataxic cerebral palsy, a condition that greatly affects a person’s coordination and speaking abilities.

The biggest test as to Ramirez’s future would be if he could sit up by himself, like other infants, at 1 year old. Ramirez didn’t even learn to crawl until he was much older than most other children who had even started walking.

But Ramirez passed that first challenge, like so many others he would overcome later.

When Gallegos shopped around Shawnee County to find the best school district in which to purchase a house, the family settled on Auburn-Washburn Unified School District 437, where Ramirez started his first day at Jay Shideler Elementary in a wheelchair. With the help of many paraeducators and physical therapists, Ramirez soon outgrew his wheelchair, outran his teachers and paraeducators and outspoke his DynaVox Vmax speech assistance device.

Now a senior at Washburn

Rural High School, Ramirez is just one semester, one step away from reaching the same goal — graduation, and later college — that many of his classmates share.

The difference, though, lies in the extraordinary work and effort Ramirez put in to get there.

The hardest worker

To define Ramirez by his cerebral palsy is to miss the mark. To ignore it is to ignore Ramirez.

Speech comes much slower to Ramirez, and although he no longer uses his assistive speech device in everyday communication, he often relies on the help of his family or his paraeducators to talk.

Still, Ramirez speaks excitedly when talking about his accomplishments, his work ethic and his grand ambitions (talk to him about movies and find one of Topeka’s biggest cinephiles). His words, if measured, are that much more deliberate, and he often pauses to think about not only what he will say but also the best way to say it.

It is the kind of thoughtfulness and dedicated work ethic has put into everything he does, and it is those traits that have been hallmarks of Ramirez’s academic career.

“I expect from myself to get A's and B's and not C's or D's,” Ramirez said.

Like all of his other classmates, school has been a little harder for Ramirez since in-person schooling was shut down in March. Originally set on taking Advanced Placement classes this year, Santos had to make alternative plans since his family opted for remote learning, in which those classes aren't available.

In any case, Ramirez has remained dedicated to his schoolwork. Leah Snyder, Ramirez’s paraeducator, said where other students might fall behind because of the pandemic, Ramirez excelled because of a strong work ethic he had already developed over years of school.

“Most other students might slack off, but that has never an option for him,” Snyder said.

Over the fall, Ramirez took Lifetime Fitness, U.S. Government and Senior English, although his favorite class was probably Art History.

“I like getting into artists’ minds and knowing what they were thinking when they made their beautiful paintings,” Ramirez said, lamenting he could not fit in another art class during his senior spring semester.

Gallegos said that since moving to learning at home, Ramirez has spent hours in his room working on his schoolwork, never leaving until he is satisfied that he has done a good job. He uses a special computer application that assists him in typing up papers and essays using predictive text, much like the row of suggested words above a cellphone’s keyboard.

After graduating, Santos has his mind on some sort of business degree, although he is still unsure where he will attend school. A big part of his college shopping experience is looking for an institution that will support him just as much as the teachers and staff at USD 437 have, in addition to such considerations as financial aid.

That can be a challenge, too, since scholarship organizations often don’t offer accommodations on aspects like deadline extensions or the use of a scribe to assist Ramirez in preparing applications and essays, the family said.

None of that has deterred him, though, and Ramirez dreams of one day opening his own business.

“A lot of things are more difficult for him, but he can still do them,” said Will Baker, a close friend of Ramirez’s. “I don’t think he sees himself as being very different from other people. He still has a job and works and goes to school and does things like other people do. I’ve never heard him complain about anything in terms of his disability. He just always has a fantastic attitude.”

Set up for success

“For a child for whom it was unknown if he would ever walk or talk, I think he’s come a long way, but it’s because of the support and him always being in a position where he’s set up for success,” Gallegos said. “I think that’s just how human beings can grow, is if they start from a place of success, instead of a place of deficit.”

A big part of life of parenting Ramirez has been learning to let him learn and succeed, but also fail, on his own, Gallegos said. It can be disheartening in seeing Ramirez apply for jobs but be dismissed as a viable candidate when interviewers ask about accommodations, or in facing the disappointing fact that Ramirez may never drive on his own like his peers.

But it is valuable experience, especially as Ramirez sets out to make his own life.

“I have concerns like him, just like I do for my other children,” Gallegos said. “The way I raised him, though, is to 100% follow his dreams. We’ve always tried to not ever make decisions for him. I believe that when you do something for someone, like making that kind of decision, you take away their power. You disempower them, and that can hurt people as they’re growing.”

It is people like Snyder and Joni Burkett, two paraeductors turned family friends, who have not necessarily done things for Ramirez but rather set him up for the successes he has had.

Burkett, who worked with Ramirez between first and sixth grades, said she expects the best is yet to come for Ramirez, and that he will continue to overcome any barriers that might come before him.

“I’ve been a para for 15 years, and Santos will always be the most worthwhile thing I’ve done in working with kids,” Burkett said. “He gives so much to those around him, and he cares so much about others. It’s such a far cry from when he came to us and we were told he’d need assistance. He has shattered every boundary that has been set for him.”

“I don’t know exactly what he’ll choose to do, but whatever he chooses and whatever path that might be, I know he’ll accomplish it,” Snyder said. “There’s not a doubt in my mind.”

As Ramirez prepares to make the final step of his public school career, he does so with the support of a tight network of family, friends and teachers who have found as much help in him as he has in them.

More than anything, Ramirez said he wants to show the world what that network already knows — how he is capable of pretty much anything anyone else can do, if not more.

“I’m no different than other people,” Ramirez said. “I can keep up with other people in everything that I do, whether that be in school or in video games. I can compete with everyone, but I do need to work a little harder at it.”

Rafael Garcia, Topeka Capital-Journal USA TODAY NETWORK