Cool C.A.T.S. Club

By: Tonia Nifong

In anticipation of the birth of their first child, Evan and Necie Mize were full of excitement and dreams for the future – that positive energy proved to be a defining characteristic of their family from the get-go. After an emergency Cesarean section (C-section), the active-duty military family learned how to advocate very early-on for their son, Major, who was born with Down syndrome, with no pre-natal diagnosis. “I remember holding Major just after he was born. He was very quiet,” Evan said. “With her C-section, Necie was completely under and didn’t see Major at first. He was taken to the NICU, and she didn’t have the opportunity to see him for the first three hours,” he added. “I had to insist that the hospital staff allow Necie to see her son – that was my first moment of advocacy,” Evan explained.

After a three-week stay in the NICU, Major went home with his family healthy and strong. “From that first experience with Major in the NICU, we learned that he will accomplish things in his own time, and that he will do a great job at them,” Necie said.

From Isolation to Community

At first, life at home with their new baby felt isolating. “For those first six months, we never once heard ‘congratulations.’ It was like we were on an island,” Necie explained. “There was no support, no education. We thought, there must be more out there. We wanted to dream for our child. Eventually, we connected with PALS Camps, and received a welcome packet for our new baby.”

“The packet included a congratulations letter written by a young man with Down syndrome. That moment was a turning point; it was the first time we’d heard the word ‘congratulations’ on the birth of our son,” Necie said. “That letter meant so much to us. We realized that the birth of our son wasn’t something to mourn. Through it all, and now that we’re in our third year of parenting, we’ve gained so much more confidence.”

“The letter gave us hope, strength and the desire to connect with others. From there, we connected with the National Down Syndrome Congress Convention. We went from being on an island as a family, to being on an entire continent,” Evan added.

Dreams Take Shape

Dreams flourish with supportive relationships, and the Mize family illustrates this beautifully — both in the context of their own family and in their growing connections with other families and organizations. “After connecting with PALS, we felt like we could dream again,” Evan said. “We went from almost catatonic to dreaming.”

The Mize family dreams big for their son, and they are living those dreams out now and for the future. Major participates in gymnastics, swimming lessons, and horse-back riding through the Colorado Springs Therapeutic Riding Center. “When you’re raising a child with special needs, you have to look further down the path, not just one-to-two steps ahead,” Evan said. “We want to get to step 10, and so we do a lot of backward planning, like any other parent. Our approach is that we don’t have to ask permission for Major to participate in life.”

“In fact, we’ve taken on the perspective that you’re going to have to work very hard to convince us that Major shouldn’t have the right to participate in any part of life,” Necie emphasized.

Major is very close and affectionate with his parents, who cultivate his fun-loving personality and deep emotional intelligence. “Major is a camera ham. He’s full of physical confidence, and he’s somewhat of a daredevil,” Necie said. “He has a unique level of empathy for somebody his age. He’s very good at picking up on a person’s intentions. He’s very friendly, and if he doesn’t receive that same level of friendliness in return, he doesn’t let it get to him – he’ll just go on with his day, turn around and be kind to somebody else.”

Educational Advocacy

The Mizes’ dreams for Major include a rewarding, successful academic life, which starts with planning now. “One of our long-term goals is that Major be able to graduate high school, receiving his diploma. It was very important to us to find the perfect preschool for Major,” Necie explained. “We were referred by Peak Parent Center to The Arc Pikes Peak Region, where we connected with Educational Advocate Connie McKenzie. “During the IEP (Individualized Education Program), Connie really respected our wishes, Major’s dignity and development, and she kept her focus on what was best for him as a child,” Necie said. “Connie helped us to understand all of the fine print, while maintaining focus to mediate professionally and smoothly,” she added. “Connie ensured that everybody understood the language, while accommodating all of our long-term goals.”

If Major has taught us anything, it’s that we can handle anything. We all have more in common than we have different. It’s important to let every individual be an individual. We are where we are as a family with inclusion and acceptance because of those who came before us. We’ve picked up our baton, but we can’t rest until we achieve complete inclusion. As a family, we seek to embrace every possible opportunity to educate and advocate, seeking to inform others in a positive way, changing hearts and minds for the better. We not only advocate for Major, but for all of humanity. -Necie Mize

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The Arc Pikes Peak Region’s Building for Change Inclusive Campus will help families like the Mize’s find the resources and relationships they need to achieve their goals and dreams. You can learn more about Building for Change here.