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#Attuned: Advocating for Your Child- Daxton's Story

The following tells the story of one family's quest to understand their baby's delays.

When I first met baby Dax he still swam in his mama’s perfect basketball belly. His mother, Shea, took a leap of faith and joined me at the park for our first Footprints playgroup. With her blonde, boisterous son Jaden in tow she approached the park cautious but quickly started sharing ideas and excitement for playgroup.

When baby Dax arrived I knew he was special. I held him and he just craved going back to melt in his mama’s chest. And Shea loved on him so beautifully. One of the highlights of families staying involved in playgroup is the gift of watching the babies grow. We witness the changes to their little lives each time they attend group. I hold this as an amazing honor families share with us.

After 4 months I could tell Shea wasn’t feeling the same elation when she first brought baby Dax to group. She seemed more than tired… she looked concerned. She loved her children, she always showed up, but I sensed something brewing.

She shared she worried about Dax’s development and him not meeting milestones. He had trouble holding his head up- it slipped to the side without intentional support. He didn’t seem as keen on moving around and trying to figure his world in the way Jaden had. He grew easily frustrated. Shea talked to her pediatrician about her concern—the doctor somewhat allayed her fears and assured her Dax was “just playing catch up.”

But Shea didn’t settle for a “wait and see” approach. Her gut told her she needed a second opinion. Sure enough, Dax was diagnosed with torticollis.

KidsHealth defines torticollis as a multi-symptom concern. Babies may tilt head to one side, have a flat head, a small bump on the back of the neck, trouble turning their head among other concerns. Often doctors supply parents with information on stretches and ways to build muscles up. Shea and Dax took note and registered for physical therapy and started building a support system to help Dax manage his condition.

Part of how Shea formed a village of support for tiny Dax: Facebook. She posted pictures of progress and talked about her experiences--- Shea became an advocate in every sense of the word. We cheered them on as a family from the comfort of our living rooms. And that encouragement seemed to help Shea know we supported her and her experiences.

Accessing Early Intervention meant as Dax explored new skills and lagged in others data could be used to determine what further supports he needed. Instead of just waiting for Dax to catch up Shea had a way to keep seeking answers to her questions. “We met some of the most amazing therapists that gave us insight into what we were seeing in him.”

At 12 months Dax’s team recommended a CT scan. Even though Dax progressed monumentally—his parents had a hunch more headway could be made if they asked more questions. Did Dax have brain abnormalities? No wonder Shea and her husband seemed worried; this question loomed for them. Can you imagine the fear of wondering if your baby was healthy or significantly delayed? How would these delays impact his future?

All babies are perfect, but as parents we do encounter real challenges or adjustments the second phrases like “abnormal” start showing up on medical documents.

The CT revealed no abnormalities. It did, however, reveal significant vision concerns. Have you ever seen the viral video of a baby hearing for the first time? Envision that and imagine witnessing Dax seeing the world with clarity for the first time. My heart still leaps at the thought.

Baby Dax crawls, sits up, squirms, jabbers and practices words, reaches out, climbs and gets into all the right kind of curious trouble. His muscles are still catching up as he has hypotonia (sometimes called floppy baby syndrome) so he still participates in intervention services to build muscle tone.

But more than anything, Dax is a happy baby. His parents love him, he still melts in his mama’s arms and he tries to keep up with his brother. Dax’s story teaches me all the time how important trusting your gut can be and the power of attuned parents.

I cannot feel anything but joy when around him. I love hearing him talk to his friends and watch him find a toy he wants to get to. This boy inspires me. He works through his frustrations with loving parents encouraging him the whole way.

And Shea inspires me too. She looks less worried. She talks with other parents about the process and encourages playgroup parents to try some activities as well as share their stories. She’s still tired, but she is happy too. Thank you Shea, Darian, Dax and Jaden for letting me share your story— we cherish you.

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