Billings Mom Builds Community
You can see it in their eyes
It’s a look that parents of children with special needs spot instantly in each other — fiercely devoted to their beautiful children, but tired, as they gear up for the next complication, next hospital trip, next school meeting. Pushing through, day by day, hour by hour and sometimes, minute by minute. Fearful about the future, but hanging on to hope.
As a special needs mom, Jamie Buechler knows that look, that life, because she lives it every day. She also knows the journey can be isolating and lonely. So when she couldn’t find the community her family needed, she helped create one — for herself and for hundreds of others across Billings.
“I feel like no one should ever walk this life alone, and because of how lonely it can be, I don’t want anyone to ever have to shut down and not think they have anyone,” says Jamie. “Not that I can reach out to everybody, but I feel that people can come to me and ask questions, even if I don’t know the answer.”
You don’t have to look hard to see where Jamie is making a positive difference across the special needs community in Billings. Whether it’s leading forums on special needs issues, helping moderate a special needs Facebook group, or coordinating fun outings for families, you’ll find her at the heart of it all.
“I think Jamie has a really unique capacity to maintain openness in her heart and her life, regardless of how painful the hand she’s been dealt," says Brittany Rieker, an occupational therapist who owns LEAF Pediatric Therapy in Billings. “That makes her a really fantastic resource to other families.”
“It’s something that’s such a huge piece of my life, and I was feeling lonely, and I’m like if I throw myself into this piece of it, then maybe I’ll get something in return,” Jamie says. “Maybe that sounds bad, but we just grasp at whatever we can find. It’s opened up so many opportunities.”
As a family support advocate for LEAF, Jamie offers special needs parents a helping hand. She guides them in a variety of ways, including navigating an often-confusing maze of services and resources available for their children. Each child with special needs faces unique challenges, but there is a common bond between parents because they understand the journey’s highs and lows. One of Jamie’s most powerful gifts to these parents is connection to community.
“I just go in to listen and give a resource here and there,” says Jamie. “When they say thank you for listening, it’s huge, because that’s all I ever wanted.
“She is present when a family comes in that is struggling with a portion of their diagnoses, or just the season of life they’re in with their child,” says Brittany. “She coordinates a lot of resources that are available to them, to make sure they’re aware of all of the options they have as they start moving forward and advocating for their child.”
Jamie knows how important it is to be a strong advocate. Her 14-year-old son, Gavin, has autism, and didn’t speak until age 6. He struggles with social interactions and understanding expressive cues, but with the help of early intervention and speech therapy, Jamie says he’s thriving. Her youngest son, Eli, is 12 and has been diagnosed with HECW 2, a terminal genetic disease that affects about 100 people around the world.
“He doesn’t stand on his own, he eats a few purees by mouth, but everything else is tube-fed,” Jamie says. “He’s got cortical vision impairment, and cognitively he’s about 8 months old, if you can test cognition very well. In the last few years, he also has started having seizures.
Jamie is a fighter and has spent the last several years battling for the rights of her sons, as well as many other children with special needs in our community. Whether it’s advocating for better healthcare, therapies, educational programs or social opportunities, she offers a strong voice. She urges other parents to step up for their children, especially when they cannot speak for themselves.
One of Jamie’s passions: helping others better understand special needs families.
“You hear other moms say things like, ‘I wish I wouldn’t have to chase my son around,’ or ‘I wish they’d stop talking,’ and oh, I just crave that,” Jamie says. “I crave for my son to wrap his arms around me or to tell me that he loves me, but I won’t hear those words. I don’t think people can truly understand any of that unless they’ve been through it.”
Last fall, Jamie took a step toward building understanding by helping coordinate a screening of the documentary, “Unseen,” which takes an unfiltered look at the daily lives of parent caregivers. Many care for their children round-the-clock, with little sleep and lots of juggling. It can be overwhelming to manage doctor appointments and therapies, research new treatments, oversee their children’s education and try to make sure their other kids get enough attention. Throw in trying to hold down jobs outside the home and the financial challenges of caring for children with complex medical problems and it adds up to a mountain of stress. In addition to caring for her family, Jamie has two part-time jobs. She says she couldn’t do it without her husband, Casey.
“It’s hard prioritizing,” Jamie says. “I don’t know how people do it. I keep a calendar and prioritize and it’s a lot all of the time.”
Legislators, educators, school board members, physicians and the community at large were invited to the “Unseen” screening. While special needs parents and others connected to the special needs community filled some seats, many others were empty. Jamie hopes an even wider audience will take time to watch the documentary to learn about the struggles these families face.
“I feel like bringing the documentary was just a very small glimpse into what families need,” Jamie says. “If you ask a special needs family what they need, they’re going to say ‘nothing’ or ‘we’re good.’ Even something like dropping something by their home can help, or wanting to get on the floor with their child to learn more about them. Asking questions, instead of staring and shying their kids away.”
For Jamie, the documentary hits home because it’s raw and real. She says it was sad and hard to watch. When it comes to helping families with special needs, there are no easy answers.
“I talked with someone at one of the pediatric clinics and he wanted to show it to his staff,” Jamie says. “He said his office is already changing things, like their intake process, after watching the documentary.”
Outside of events, Jamie helps moderate Special Needs Billings, a Facebook group that serves as a sort of information clearinghouse. Group members go there to find information about everything from educational, financial and medical resources to upcoming social events in Billings.
“Jamie is really a go-getter,” says Bridget Roe, a special needs mom who created the Facebook group about seven years ago. “She has the energy of 50 people, and whenever I need something, I’ll be like, ‘Hey Jamie, I want to do this,’ and she has enough connections to get more done.”
The Facebook group now includes about 1,900 members who find it a powerful way to connect and share needed information.
“The group has grown tremendously,” says Bridget. “It’s really nice to see that people realize there’s a need for it. We’re not all on the same phone tree. We do need a way to find out what’s out there.”
They also use the page to encourage one another.
“When I posted that Eli finally sat up at age 7, the people in that group were like, ‘Wow, that’s amazing!’” says Jamie. “Whereas other people will look at you like they just don’t understand. It’s a whole different dynamic.”
Each special needs family is different, but many crave social interaction, friendship and fun. Parents often find it difficult to take their children out in the community because of concerns that include health risks, behavior challenges, overstimulation, and even feeling uncomfortable when other people stare or make rude comments. That’s why each summer, as part of her advocacy role for LEAF, Jamie helps coordinate a handful of outings at the Oasis Water Park. Children and adults with special needs, their families and caregivers are welcomed into the park free of charge after 5 p.m. From 7 to 8:30 p.m., the pool is open only to them.
“It’s great, because a lot of people will not go there at other times, because it’s just too much for their kids,” Jamie says. “Even though we have 200-plus people go, it doesn’t feel like it. The kids can just be themselves.”
Since Bridget Roe started the Oasis outings about five years ago on behalf of her son, Maverick, a number of Billings businesses have stepped up to support the outings. Jamie and Bridget are very grateful.
“Everything we have tried to do has had tremendous support from the community,” Bridget says.
Other activities, like an annual Easter egg hunt, social groups, book studies for parents and community forums on topics like guardianship help create bonds, easing isolation and encouraging friendship.
“Jamie and I have talked a lot about how isolating parenthood is,” says Brittany Rieker. “All on its own, parenthood is isolating, and then it’s isolating almost one hundred-fold over when you don’t have the same type of support network because your kids have additional needs. So who can babysit my kid who has a g-tube or a trach? I don’t know anybody. So how do we build a community that’s educated, so they understand what it would be like to include someone who may have different medical needs, different sensory needs, or different educational needs?”
Jamie also wants people with special needs to play a bigger role in the larger community in Billings. She believes educating others about disabilities is key to helping families and children feel welcome and find their place in the Magic City.
“How do we build those things for people to prosper in a social setting and their families side by side with the rest of our community, so it isn’t segregated and isolated and lonely?” Brittany Rieker asks. “That’s where Jamie steps in.”
“You know when little kids want to ask questions and their parents are like, ‘no, no, no’? It’s all about educating,” Jamie says. “To me, you’re parenting right if you allow your children to be around children with special needs and they want to be their friend. And not just include them because you feel you have to, but because you want to.”
Jamie’s sons have taught her important life lessons, and she believes everyone can learn from those with special needs.
“Most are happy. They’re joyous and they’re real,” says Jamie. “Sometimes I wonder if people are afraid because they’re so real. They don’t hide their true selves. They don’t put themselves in a cookie cutter box. They just are who they are with no apology. I think that if you don’t have a special needs person in your life, you are so missing out.”
Today, both of Jamie’s boys are 7th-graders at Ben Steele Middle School. Gavin is making great strides, and loves performing with Dance for all Abilities, an all-inclusive dance class. Eli has a smile that lights up a room. Their lives are busy with the boys’ therapies and doctor appointments, but Jamie and Casey treasure family time with Eli, Gavin and older brother, Tanis.
“The joy can be just in a smile or in a touch,” Jamie says. “The smiles, the laughter, it’s those things that get you through the day.”
For Jamie, each of Eli’s seemingly small successes is a reason to celebrate.
“I don’t think people can truly understand any of that, unless they’ve been through it,” says Jamie. “The therapies, those types of things like when he holds the maracas for three seconds longer than he did before, they’re great things to celebrate, but hard at the same time.”
One thing Jamie eagerly desires: for Eli to be known by others.
“We don’t have this community where they’re asking to come over or wanting to know more about him or any of those things,” says Jamie. That’s the biggest challenge, because at the end of his life, we don’t know how long we have him, I want people to know him.”
Faith is at the forefront of Jamie’s special needs journey, helping her find peace in the midst of everyday struggles. But because Eli sometimes has outbursts, the Buechlers usually watch church services online. Jamie would love to see more churches reach out to people with special needs.
“I just want the whole special needs community to be seen and heard,” says Jamie. “I go back to the documentary — feeling unseen. You can be in a crowd of people and still feel unseen. I think just reaching out to families, getting to know them, inviting them to church or barbecues — really, anything can help.”
Juggling her sons’ therapies, doctor appointments, schooling and her other jobs keeps Jamie on the run most days. She says that while some people may think she has it all together, that’s far from the truth. Still, she keeps moving forward, fueled by her faith and looking for ways to make a difference for her family and her community.
“She really is an outstanding human,” Brittany Rieker says.
TO CONNECT with other families of children with special needs, consider joining the Facebook Page, Special Needs Billings.
Ideas for Connecting with Special Needs Families
- Learn about their special needs child
- Invite them over for a visit or for an outing
- Be flexible and understanding when families have to cancel or reschedule plans
- Be a good listener
- Send encouraging notes
- Offer to make meals or help with their household
- Attend special needs community events
- Visit caregiverdoc.com to find out how to host a group screening of the documentary “Unseen”
DID YOU KNOW?
An estimated 16.8 million people in the U.S. care for a child with disabilities or complex medical needs. -National Alliance for Caregiving