In this candid and heartfelt interview, Kelly shares her family’s extraordinary journey of raising three children—two of whom live with rare genetic conditions—in the quiet countryside of Lincoln County. With honesty and courage, she opens up about early diagnoses, daily routines shaped by therapy schedules and sensory needs, and the profound resilience that defines her children.
At the heart of this story is Emsley, a bright and energetic four-year-old who was diagnosed with Autism Spectrum Disorder caused by a rare microdeletion of the NRXN1 gene. We also learn that Emsley's brother Jensen lives with Williams Syndrome.
This interview is not only a window into the complexities of parenting children with special needs—it’s a celebration of progress, identity, and the power of showing up every day with purpose and love. Kelly’s story is one of awareness, advocacy, and unwavering hope, and it reminds us that inclusion starts with truly seeing—and hearing—every child.
Tell us a little about your family and where you're from?
We are a family of 5- Doug, Kelly, Jensen(12), Jarett (9), and Emsley (4). We live in Lincoln County, where I grew up, and enjoy living in a rural area because the kids LOVE to be outside. Some of their favorite activities are riding our UTV/ATV’s, swimming, riding bikes, jumping on the trampoline, fishing, and much more!
Emsley was diagnosed at age 2 with level 2 ASD and through a research study with genetic testing, it was found her Autism is caused by an autosomal microdeletion on chromosome 2 of the NRXN1 gene (2p16.3). The deletion of this gene can cause ASD, ADHD, speech delay, epilepsy, schizophrenia, mood/neuropsychiatric disorders, low muscle tone, intellectual disability, tic disorders (Tourette’s, Complex Motor Stereotypies), and more. After Emsley’s diagnosis it was discovered Jarett and myself also have this deletion with much milder symptoms. Our oldest son, Jensen, was diagnosed at 12 weeks old with Williams Syndrome. Williams Syndrome is a microdeletion on chromosome 7 of the Elastin gene (7q11.23). We spend a lot of time catering to our kiddos needs all while trying to bring awareness and acceptance to the many different diagnoses that affect our lives.
How would you describe your child’s personality in three words?
Emsley is smart, brave, & energetic.
What are some of your favorite moments together as a family?
We enjoy hanging out together whether it’s inside watching a movie, going to our lake property, swimming, or even listening to music and having dance parties. Our whole family enjoys music and it’s a huge part of our lives!
What brings your child joy on a daily basis?
Constant stimulation. She has to always be doing something so we have so many options for her to keep busy. She loves coloring/painting, playing with Playdoh or slime, drawing, singing/dancing, building her Nugget couches, helping mom cook, puzzles, playing dress up, and so much more, but those are her favorites!
When did you first realize that your child was developing differently from other children?
Since we were already well versed in the special needs world, we noticed when she was very young that she was not like typical babies. She had severe colic for almost the first year of her life, needed to be constantly held or given attention, was behind on milestones, and the biggest clue was that she was always sensory seeking.
Can you describe the moment you received your child's diagnosis? What were the emotions you felt?
I actually felt relieved. I knew something was wrong and everyone, including some doctors, told me that it was just a phase and some babies are more difficult. But, having been a special needs mama already I knew in my gut it was more than that. My older son’s geneticist at St. Louis Children’s hospital took my concerns seriously and helped me get her genetically tested, which resulted in her diagnosis. I knew having that diagnosis would open doors to helping her get early intervention, which was very important to us.
What were some of the biggest initial challenges you faced as a parent navigating the world
of special needs? *Since Emsley is our second child with special needs, it wasn’t as difficult as with our first. But, it’s always hard with each child to figure out what their triggers are, places/people you have to avoid, what foods they will and won’t eat, and/or whether they will be safe in a place or not. One of the biggest struggles is changing your whole life to focus on doctor appointments, therapies, research studies, evaluation/IEP meetings at school, etc. and in our case everything is doubled. Home life is also a challenge most days. We have to keep to a strict schedule, have safe foods on hand at all times, have comfortable clothing/shoes, make sure we have safe sensory dealing areas/toys, and constantly be available for their needs.
Were there any key people—doctors, teachers, therapists—who made a big impact in your
early journey? *St. Louis Children’s Hospital has been amazing for our family. Dr. Procknow and her team were a big help for us. Also Missouri First Steps has always been so helpful in getting us started with early intervention.
How has your child surprised you with their resilience or growth?
Emsley is so brave and has no fear! She’s usually willing to try most things and even surprises me by asking to try things I never thought she’d want to. We try to keep the mindset that our kids can do anything, and not allow either of their diagnosis’s to hold them back.
What are some specific milestones or breakthroughs that meant the world to your family?
Emsley finally being able to communicate was huge for us. She had a speech delay that is common with her deletion and once she was able to tell us her needs it cut down on so many meltdowns and allowed us to understand her more.
How have you changed as a parent or person through this experience?
*Being a special needs parent is one of the most humbling things that can ever happen to someone. But, it also teaches you patience, perseverance, & resilience. It makes you appreciate the little things, especially milestones, so much more.
What advice would you give to other families just beginning this journey?
Take it day by day so you don’t get overwhelmed. Research and ask questions as much as you can. Find support groups and other parents who know what it’s like because special needs parenting is a whole different world. Don’t shut people out because they don’t understand, give them a chance to go on this journey with you. It can be very isolating at times, try to reach out to people so you don’t feel so alone.
What kind of support—emotional, educational, or social—has been most helpful for your family?
Honestly for us it’s been having access to support groups and other special needs parents. Also, most of our friends and family have always been supportive and open to learning about our kids and their different diagnosis.
Are there organizations, schools, or groups that made a difference in your child’s life?
Missouri First Steps was amazing for both our kids. The therapists were always willing to answer questions and help our family with any needs we had for them. Our kids’ “team” of people at school have also been awesome. They’ve had great teachers, therapists, paraprofessionals, bus drivers, etc. I couldn’t imagine our kids lives without them helping them to be their best selves and thrive in their academic life.
Have you found it difficult or empowering to advocate for your child's needs in public settings?
Both. Some days are harder than others and each kid has different needs, including our middle son, who we try to make sure is never forgotten or left out. A lot of places are understanding and help us cater to our children’s needs, but occasionally you will find a place that just doesn’t work for your family and while it’s disheartening, sometimes it’s a lesson for us all that not everyone is empathetic or considerate to differently abled people.
In what ways has your local or extended community embraced your child?
We have had amazing support in both the Autism and Williams Syndrome communities online and in person. Our friends and family love helping us spread awareness and supporting our children.
What role does clothing or fashion play in your child’s life?
Emsley LOVES dressing up. She is a true girly girl. She has always loved having on cute clothes, getting her hair done, and having a pretty bow to match her outfit. She can spend hours playing dress up and putting on pretend make up.
How do you choose clothing for your child—comfort, sensory needs, expression?
We usually choose clothes that aren’t too tight without buttons, tags, or textures she doesn’t like.
Has your child ever had a favorite outfit or dress that made them feel particularly special?
Emsley adores wearing pretty much any dress. She likes feeling “fancy” and pretty. Spinning is one of her sensory needs, so any dress she can twirl in is a plus!
What does it mean to you when a brand includes children of all abilities in its storytelling?
Seeing a brand include children of all abilities in its storytelling, shows me that it reflects an intentional effort to be inclusive and showcase a diverse range of experiences. It signals that the brand values representation and understands that every child, regardless of their abilities, deserves to be seen and heard in the media and in advertising.
What has your child taught you that you wish the world understood better?
I’ve learned that every child, special needs or not, has unique perspectives, talents, and dreams. Differently abled people bring out qualities like unconditional love, resilience, strength, bravery, and creativity that might otherwise be overlooked. If the world understood and embraced this more, it would create a culture where inclusivity, kindness, and genuine connection are prioritized, and everyone’s contribution would be valued.
If you could describe your journey in a single sentence or image, what would it be?
My journey has been a path of being humbled, constant learning, unwavering advocacy, and deep gratitude, filled with both unexpected challenges and limitless moments of joy.
What are your hopes for your child’s future?
Our hope for our kids are that they can grow up in a world where they are celebrated for who they are. That they are given opportunities to thrive and are always surrounded by love, understanding, and acceptance no matter what challenges they may face.
What would you like people to feel or understand after hearing your family’s story?
We hope people feel a deeper sense of empathy, appreciation, understanding, and respect for the unique journeys many families with special needs children have to navigate. We also hope people understand how important early intervention, awareness, and ongoing support are to families like ours. One of our biggest concerns is that people never feel alone on their journey and that is why we are so open about ours.
