The first week of Hannah’s life was not what we expected. We were in the emergency room the day after we brought her home from the hospital. What followed next was an IV in the top of her head and a bright yellow feeding tube inserted through her nose.
People with Down syndrome typically have lower muscle tone. For Hannah, this meant her sucking motion wasn’t strong enough. Despite going through the motions of nursing, she was literally starving to death. We quickly realized that raising a child with a developmental disability required knowledge and experience we didn’t have.
That’s how we came to learn about the important work done by our local Arc of California affiliate, Alpha Resource Center of Santa Barbara. A parent volunteer from Alpha’s Lifespan Support Services met us at the hospital the day after our return. She was the mother of a young girl with Down syndrome herself. As she shared her own story, we learned that Alpha Resource Center could help us gain the knowledge and experience we were lacking.
Today Hannah’s thriving. She plans to work at the local donut shop after she finishes high school. She takes ballet and lyrical dance classes, surfs on the weekends a couple times a month, and accomplishes anything she puts her mind to. The support we received was so impactful that when Hannah turned three, we adopted our son, Jed, who also has Down syndrome, from Hong Kong and gave Hannah and her two older sisters a little brother. And he’s the best, pesky (and amazing) little brother they could have asked for.
Following Hannah’s birth, my wife quickly became an advocate, joining with another mom of a newborn with Down syndrome to organize a disability awareness walk with the help of Alpha. I was roped in to help in the following years. From there it was 9 years on the board of directors, the last few as board president, before moving to the staff side and becoming Alpha’s Executive Director.
My time on the board and in my current role have given me an understanding of how important the work of The Arc of California is to our disability community. The advocacy and family support we do each day at Alpha is built on a foundation of legislative victories that have changed the future for Hannah, Jed, and their entire generation. There’s opportunity for employment, independent living, and a host of available services to make it all happen. These opportunities weren’t easily accessible decades ago.
The Arc of California paved a path forward and continues to ensure that the path is broadening each and every day. I am grateful to part of The Arc Family.