Making a Difference: Meet the Schapker Family- CAMSE Kit

By Maria Smietana

When college sweethearts Chris and Kelsey Schapker decided to start their family, they could not have predicted the hurdles they would encounter.

After the Evansville natives graduated from the University of Southern Indiana and got married, they first struggled with infertility. Kelsey decided to stay home rather than start a career. “Due to my severe endometriosis, we tried to get pregnant for over three years,” Kelsey said. “We lost five babies before we became pregnant with our son, Camden. He is a miracle!”

But when Camden remained non-verbal for the first three years of his life and never made eye contact, the Schapkers knew that more challenges lay ahead. “He never said ‘mama’ or ‘dada’ as an infant or toddler, and never interacted with us appropriately,” Kelsey said. “His inability to communicate with us was extremely heartbreaking. He was in speech therapy for over two years before he said the word ‘mommy’ and could associate that word with me. How do you speak to your child when it seems that he can’t comprehend what you’re saying?”

Receiving a diagnosis for Camden helped tremendously. For some parents, hearing their child’s diagnosis for the first time is devastating. But for Kelsey, it gave her the direction and clarity that she desperately needed.

“Camden’s diagnosis of autism spectrum disorder and language delay was a relief because I felt a sense of ‘Okay, now I know how to help my child,’” she said. “Before there was any kind of diagnosis, I felt so lost. ‘What does he need? How can I help him?’ These were questions that I often didn’t know how to answer. With the diagnosis, I felt a sense of calm. My thoughts were: ‘Okay. There’s nothing wrong with my child. He’s just going to learn differently and travel through life differently than his peers. And here are the tools I need to set him up for success.’”

Believing in their son, working with him every day, believing in his speech therapist, and enrolling him in developmental preschool were all key to Camden’s developmental progress. “A big milestone was when he graduated from developmental preschool,” Kelsey said. “He now knows his full name and how to spell it, he knows his age, and he can recognize and say the names of the important people in his life - Daddy, Kendi, Nana, and Papa - as well as his teachers and therapists. The day he said ‘mommy’ and pointed to me, I sobbed. It’s a happy memory that I’ll never forget because I waited over four years to hear him say it.”

Now 5, Camden attends a developmental kindergarten class Monday through Friday from 8 a.m. to 3 p.m. It teaches the same curriculum as a regular kindergarten class, just at a slower pace. He also receives speech therapy and occupational therapy at Easterseals Rehab Center.

“I never could’ve imagined when we finally became pregnant that we’d be a special needs family, but the choice I had made to stay home ended up being a blessing in disguise,” Kelsey said. “It’s allowed me to take Camden to every therapy appointment, be his voice and advocate for him, work with him one on one, and have a front-row seat to his success!”

When Camden was about 2 1/2, the Schapkers added a daughter, Kendi, to their family. Kendi is a neurotypical child, and Kelsey says she often feels like two different parents — “For Camden, I provide social stories, picture schedules, and first/then boards, but Kendi doesn’t need me to provide any of those tools since she is an average 2 1/2-year-old.”

Still, Kelsey and Chris, who is an IT manager for Ascension Health, focus on having as normal of a family life as possible, which means having routines, keeping traditions, doing activities that both kids can enjoy, and working hard to be fair to both of them.

The family eats dinner together every night. “It’s pretty hectic with a 2 1/2-year-old and an autistic child, but there are always lots of laughs,” Kelsey said. “Camden has severe food anxiety and eosinophilic esophagitis, so he can’t or won’t eat many items. I’m always accommodating him by making two suppers - one for him and one for the rest of us. If we all go out, it’s almost always to Los Bravos. He loves their cheesy rice and cheese dip and is comfortable in their environment.” Chris and Kelsey will take Kendi to visit other restaurants while Camden is in school. They want her to have the experience of a [variety] of foods and different types of places to eat.

Both kids enjoy decorating cookies for every holiday - Halloween, Christmas, and Easter – so it has become a tradition the whole family looks forward to. “We love to go for walks and take bike rides or Jeep rides to a local park right up the road,” Kelsey added. “Camden and Kendi love playing there and it’s something that they can do together. It’s fun watching him go down the slide with a handful of rocks. We also love swimming at Nana and Papa’s pool from May to September. In the summertime, the kids love playing at our gym’s splash pad.”

Being in or around water is such a source of happiness for Camden that his parents took him on a carefully planned trip to Destin, FL, this past summer. “We chose to have Kendi stay with her grandparents because her crying really upsets Camden, and we knew we needed him as regulated as possible for him to have an enjoyable experience,” Kelsey said. “Splitting up the family for this trip was a really difficult decision to make because Kendi is so much fun, and we love our children equally. But my family is different, and this means sometimes we have to do things with the kids separately. I’ve learned that I have to do what works for my family, even if it’s frowned upon by others.”

For the trip, Camden’s occupational therapist had the wonderful idea to make him a book titled “Camden goes to Florida.” It contained pictures of every step, so Camden knew what to expect — parking the car, checking bags, getting through TSA, airplane boarding, baggage claim, etc. “When Camden became upset at baggage claim, I was able to pull the book out, remind him what step we were on, and he instantly grasped what was happening,” Kelsey said. “He had an amazing trip and still talks about the beach house to this day!”

For other families in similar situations, Kelsey advises patience. “Lots of patience. And advocate for your child! Surround yourself and your child with people who believe in him (or her) and who believe in your child’s capabilities. I call the people in Camden’s life ‘Team Cam’ - These are professionals who have become like family to us because they have been in our son’s life for years. They cry with me, laugh with me, encourage my son, celebrate both the big and little wins and generally want to see him succeed. If you run into a roadblock with someone who doesn’t believe in your child or isn’t treating your child with respect, don’t be afraid to speak up. You are your child’s voice.”

To make sure that she can be there for her family, Kelsey is very intentional about taking care of herself. “To relax, I love writing my book, journaling, taking Zumba, and working out,” she said. “I have a gym in my garage that is my safe haven. When I’m working out, that’s my time to focus on my mental health and focus on me - Kelsey, the person, which benefits me as a mom.”

The Schapkers have a special place in their hearts for the staff at the Easterseals Rehab Center in Evansville. “They have been phenomenal in providing resources for our family,” Kelsey said.

“Camden’s speech therapist, Christi Watkins, has taught me everything I need to know about autism spectrum disorder and advocating for Camden. What I’ve learned is that you have to do what’s best for your child and your family, regardless of what anyone else thinks. Raising an autistic child is exhausting and rewarding at the same time.”

The experience of raising Camden led Kelsey to start a nonprofit initiative that will benefit many other children like him. “When Camden was diagnosed with autism, I got to thinking what law enforcement and first responders would need when they responded to an incident that involved a child on the spectrum,” she said. “So, I developed a sensory inclusive kit that stays in the vehicles of law enforcement and first responders. It includes a weighted stuffed animal, a Pop It, stacking blocks, and a sensory Rubik’s cube, among other items.” She named it the CAMSE Kit, which stands for Cam’s Sensory Equipment. The beauty of the kits is that they are portable, don’t take up a lot of space, and are relatively inexpensive and simple. But the items in the kits have been proven to comfort and calm children, especially those on the spectrum, in high-anxiety or traumatic situations.

The nonprofit has only been operating for 15 months, but CAMSE Kits have already had an impressive reach. So far, they are being used by the Posey County Sheriff’s Office, the Poseyville Town Marshal, Indiana State Police troopers who serve Posey and Vanderburgh Counties, the Evansville Fire Department, and the Evansville Police Department’s Juvenile Unit, which serves over 30 schools in the Evansville Vanderburgh School Corporation.

All donations to CAMSE Kit go right back into purchasing and distributing more kits. More information can be found on Facebook at https://www.facebook.com/CAMSEKit

“I never could’ve imagined that this would be my story – first infertility; then a mom to a special needs child,” Kelsey said. “But I am so proud of my son and all of his accomplishments so far. I will advocate for Camden until my last breath. I want parents of newly diagnosed kids to know that you are not alone! There are fantastic resources available to help you and your child live a happy and successful life.”