Finding my village through Caregiver Connections

by Rhonda Matson, Community Contributor

I attended my first Caregiver Connection event in July. Juli has graciously kept me on her invitation list, and it was the first opportunity that I had to share space with other caregivers. Listening to others’ stories reminded me of my own caregiving journey.

The early days, for me, were exhausting, concerning, frustrating, stressful, scary - all the things. These 24 of motherhood have also been joyful and loving and funny and brilliant and rewarding. For our entire marriage, my husband has traveled more than he has been home. All aspects of raising our children have been primarily my responsibility.

When my daughter was an infant, she had health issues, sensory issues, latching problems, reflux, and sleeping problems. Neither one of us slept for more than 2-hour stretches for the first year. Family and friends offered “helpful” advice that did not meet our needs, and as my daughter grew, it was obvious that she was not responding the way other children did. The advice and judgment from others further isolated me. Public school offered no help, only consequences for quirky behavior. I had to fight for many years to get an autism diagnosis and accommodations for my daughter. We felt like nobody else understood, so we just didn’t talk about it. Fortunately, I was blessed.

The year that my daughter received her formal diagnosis (age 9), I met Judy Sanders at our students’ elementary school. As a fellow special needs mom, Judy recognized that I needed support. She literally grabbed me by the hand and introduced me to an entire community of moms and kids who could be themselves without judgment.

When my second daughter started having emotional and intellectual struggles in elementary school, I already had a group of special needs moms to talk to who understood and could brainstorm with me about how to advocate for her. I could not have faced her misdiagnosis of ADHD, and her bipolar episodes, suicide attempts, violent outbursts, etc. without my village. No judgment, just encouragement. It gave me the confidence to advocate for my daughters, and to support other moms with special needs students by sharing my experiences. We weren’t alone anymore. 

Thank you, Juli, for giving us this space where everyone feels welcome, and where caregivers can share their stories.

Learn more and join us at an upcoming event soon.