It’s Only Homeschooling’s “The Salt & Light Spotlight” Presents DCD Kids
HOME | DCD Kids | Raising awareness of Developmental Coordination Disorder
Lost in the Wilderness
Do you remember the early days of suspecting your child may have learning challenges?
I do.
Long before any ideas of homeschooling entered my mind, I watched my child struggle to meet developmental milestones. A pre-term baby, born at 34 weeks, I listened as our pediatrician assured us with the often repeated phrases of “Babies do things in their own time,” and “No worries, we adjust preemie babies until they are around age 2.” When age 2 came and went, the phrase became, “Oh he will catch up soon, you’ll see.”
But I did worry. And our son did not “catch up” by age 2. Or age 3.
But it wasn’t for his lack of trying. Always alert and ever curious, our son was eager to explore his environment. Not content with merely watching others move in the world around him, he was determined to join in.
Whether wanting to keep up with me around the house or longing to join peers at playdates, he struggled to get his little body to move in the manner he desired. He had motivation. He had determination. What he needed was cooperation, from his body to his brain.
He was also bright and creative. A natural problem solver. When his body refused to follow his brain’s commands and allow him to mimic the motions of others, he adapted by learning to move in a different way. His way.
But there were times when his creativity, intelligence, and sheer will were met with obstacles.
Before he was a year old, I watched my son’s personality bloom. He did not crawl on all fours the way other babies did, at least not at first. Rather he “swam” on his tummy, little arms and legs flailing and kicking out to his sides in furious attempts to propel his body forward. Eyebrows knit close together in deep concentration, and his little jaw set with a fierce look of determination, he showed his gifts of perseverance and endurance.
Tummy swimming soon gave way to “army crawling” as my husband lovingly nicknamed it where he would pull his little body forward with his arms, shimmying his hips back and forth, and kicking with his legs as he used his knees to help him gain ground. In his own time, he worked to push himself upright on all fours. Bit by bit, he progressed from frustratingly rocking back and forth in place to eventually achieving the success of a beautiful crawl.
The day our son turned twenty months old, he took his first steps. Oh, what a joyous day that was! I have the sweetest video of him at this moment. Bent over at the waist with his little behind pointed to the ceiling, knees locked, legs straight as stilts, palms flat on the floor, and toes gripping the hardwoods tightly, he gingerly lifted his hands skyward.
He swayed forward and back, gauging how best to steady himself as he continued his careful vertical ascent. Once upright, he wobbled forward, shifting his weight from his right foot to his left, knees completely locked. He was the cutest little penguin sans tuxedo that you had ever seen.
I will never forget the sheer look of joy, surprise, and accomplishment spread across his little face after so many months of effort. He meant he was not going to be left behind anymore.
With those very first steps, stumbles occurred as anticipated. But soon the falls occurred more often. Soon, they became a daily occurrence. Then multiple times a day. These tumbles happened so frequently over the next few months that my highly verbal now two-year-old child would call out “I’m ok mom!” before waiting for me to inquire about his safety.
Outwardly, I was thrilled with our son’s ability to overcome his mobility challenges through sheer grit. Inwardly, however, my mama instinct knew there were bigger concerns beneath the surface.
No longer pacified by my pediatrician, I insisted on referrals to specialists. In Texas early intervention services for children under age 3 are free. However, the waiting list is quite long. I felt we had already spent the last two years trying to get our concerns addressed.
We had already been through multiple tests including a scan to rule out a closed Spinal Bifida. Life-threatening challenges had thankfully been ruled out, so I drew the line at sedation for an MRI in a child so young. Finally, we were given referrals to a Physical Therapist.
The Right Fit
Looking back, I see God’s hand guiding every step. With that first therapy referral, we were introduced to an amazing group of pediatric practitioners including Speech, Occupational, and Physical Therapists at a wonderful practice in Texas called Therapedia. Due to developmental delay in reaching milestones, we decided to start with Physical Therapy services. Our therapist was amazing! After working with her for several months, we were gently steered to seek an Occupational Therapy evaluation.
After working for several months with both therapy professionals who had recognized our son’s diagnosis early and accurately, and by applying proper intervention, we began to see huge changes in our son. We also realized we needed to switch pediatricians.
I have never been more thankful for trusting my instincts.
ISO Traveling Companion
In my family’s triumphs and frustrations, I longed for a companion to intimately share our experiences with. Mind you, my marriage is strong. I am beyond blessed to be married to my best friend. However, during those early days, life was hectic all around, both at home for me and on the work front for my husband.
I am the heart of our home. My husband, our rock. I have a tendency to be a bit more excitable or anxious depending on the day or situation. My husband is calm, assertive, and patient. We balance one another out beautifully.
My husband is an amazing partner and father, but our roles and lenses differ. As we were created differently, so do our needs differ. I longed to connect with someone who could relate to me as a woman and a mother.
While our families of origin have always been a source of unconditional love and support, both live several states away and are understandably busy with their own lives. I have built a wonderful network of mommy friends in my adopted home state of Texas. However, at the time, none had children who faced obstacles similar to ours.
As a therapist, I knew the value of a support system. I knew what I needed.
I needed my tribe.
Finding My Village
In my search for a village, I turned to the internet. I scoured social media and MeetUp Groups in the hopes of meeting other families of children living with Developmental Coordination Disorder.
I found community in Facebook groups and a plethora of information about the diagnosis through CanChild, a Canadian-based research center, Understood.com, an information-based website for Learning Differences, and the Dyspraxia USA Foundation, a non-profit working to provide guidance and support to families navigating the world of DCD, I had yet to find a personal connection.
The heart wants what the heart wants, and my heart wanted a kindred spirit. I longed to form a bond with other moms like me. I needed moms who had been through the trenches and who could do more than just offer blanket reassurance.
I needed words of wisdom. I needed hope. I needed an ally.
I wanted to be seen through the eyes of a mom who had walked through the same rough-hewn path that I was currently trodding and come out the other side looking like Bear Grylls’ best mate on holiday.
And I found her.
Her name is Sue Hille.
And this is her story.
DCD Kids
Type in Developmental Coordination Disorder into your favorite search engine and you will find only a handful of results for North America. While a commonly known diagnosis in the U.K. and Australia, very little awareness of the condition exists “across the pond.”
Don’t get me wrong, CanChild, Understood.org, and the Dyspraxia USA Foundation are all wonderful for providing vital resources, advocacy, and information. Their outreach efforts are to be celebrated and shared as they have positively impacted numerous lives. Believe me, you will hear more from me about the merits of these wonderful organizations in upcoming posts.
But for me, DCD Kids was different. It was personal.
Where the Heart Is (Or Kindred Spirits)
Destiny. Providence. Kismet.
I prefer to think of it as Divine Intervention via a perfectly timed Google Search.
One anxiety-filled day during the pandemic, I was searching the internet for information about DCD when I came across a beautiful and colorful website, DCD Kids.
I devoured the pages of this beautiful blog and felt chills as I read post after post. It felt like I was reading about my own son.
This could have easily been our family’s story, fast-forwarded a few years ahead mind-you as her son is a few years older than mine.
She was my kindred spirit.
Mom With A Mission
Sue Hille is the founder of DCDKids.com – a website dedicated to raising awareness of Developmental Coordination Disorder through the pillars of Awareness, Advocacy, Action, and Achievement. She is an Australian who lives and raises her family in Canada, and started her website after her son was diagnosed with DCD, as a way to raise awareness of DCD in schools and the wider community, and to provide resources to support other families.
The more I read, the more I knew I had to meet the mom behind the movement.
I filled out the contact request on her website. A few emails back and forth later, we arranged to chat on the phone.
Have you ever spoken to someone, even for a few minutes, and felt like you have known them for a lifetime? That was my conversation with Sue. Our words flowed with ease as we settled into a natural rhythm and exchanged details of our shared experiences, both delights, and disasters, of living in the world of DCD.
In Sue, I found a champion, a mom on a mission.
She was not in this “advocacy business” for the money or the recognition. Well, recognition perhaps, but certainly not her own. No ma’am. She knew the stakes. Better yet, she knew the statistics.
She threw her hat into the advocacy game with the passion of a servant’s heart.
Bridging the Gap
Like so many trailblazers before her, Sue never set out to be an advocate. She was just a mom fighting for her child to have a seat at the table. To have an accurate diagnosis, adequate interventions, and proper support both at school and in the medical community to increase his chances of success. During her personal quest, she saw a greater need and decided to do something about it.
From her years of self-research to gain knowledge about DCD and how best to help her son, along with years of going head-to-head with both medical and educational professionals as a parent advocate, Sue realized she was not alone in her struggles. The prevalence rate of DCD alone evidenced a need for parent resources.
Having personally dealt with the isolation of feeling like David battling Goliath on repeat, Sue knew what she had to do. She decided to share her knowledge and experience to help others. She decided to create a place for families living with DCD to find resources, respite, and relationships.
With the pillars of Awareness, Advocacy, Action, and Achievement, DCD Kids was born.
When you listen to Sue speak, her passion for her cause shines through beautifully. Her voice is both eloquent and jovial with the confidence and self-assuredness of one who knows her values well and how to communicate them with both ease and grace. She exudes the wisdom of experience while effortlessly maintaining her humble nature. She knows who she is and when it comes to her purpose, she shall not be moved.
This same passion and heartfelt commitment led to an invitation to serve as a parent panelist at the recent 14th International Developmental Coordination Disorder Conference in Vancouver, B.C., in July 2022. During the interview for our upcoming podcast episode, Sue discussed her role as a parent advisor and her plans to help bridge the gap between research efforts and real-world applications of data, implications, and interventions.
Sue’s meeting at the International DCD conference in July and her work on her website is exciting for families of children and individuals living with DCD indeed. While both Sue and I agreed we are grateful for the commitment of researchers dedicated to learning more about DCD, there is a clear disconnect in how these findings are communicated, translated, and applied to daily living.
Research is wonderful, but if no one knows how to put it to use – better yet, if no one is even aware of it, then, well, what is the point?
Sue is hoping to change that.
Looking to the Future
While these are my words and not hers, I humbly submit a new pillar for Sue and DCD Kids, “A” for Ambassador. As I write these words, Sue is looking to expand her advocacy efforts by making her website more accessible to a larger audience. Social media is in the works. There is a possibility of a DCD Kids Podcast in the near future. And definitely more blog posts.
I might be giving her a bit of a push encouragement in these pursuits. With DCD Kids, Sue has built something really special. As our most recent conversation was coming to a close, the ever-humble Sue said to me, “You know in creating my website my only real thought was if I could help one person, then my work would be done.”
Well, Sue, I am thrilled to say I am certainly THAT ONE.
But I know I am not alone. You have amazing gifts to share. May the Lord bless you and keep you. I will be watching from the sidelines, cheering you on, and eager to see DCD Kids grow. I am grateful to have connected with a fellow advocate, but I am blessed to have found a friend.
Want To Hear More About Sue’s Journey?
If you would like to learn more about Sue’s journey and her advocacy efforts, then be sure to tune into the Salt & Light SERVE Spotlight podcast, brought to you by It’s Only Homeschooling.
LET’S KEEP IN TOUCH
Be sure you do not miss a blog post by signing up for my email list, liking my Facebook or Instagram page, or subscribing to my YouTube channel.
Like what you see here? Sharing is caring!
Blessings,
Kimberly
IOH Mom
This website is not a professional counseling website and nothing here should be construed as professional counseling advice. Although Kimberly Bennett, LPC is a Licensed Professional Counselor, she is not your counselor, and no counselor-client relationship is established unless she has signed an agreement with you. All information provided through this website is for informational and educational purposes only.This post may contain affiliate links. Please read my disclosure statement. Thanks for visiting!
