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By Joshua Weitzman, Executive Director, Alpha Resource Center of Santa Barbara and father of Hannah
Sixteen years ago, my wife and I sat in a hospital room with our four-day-old daughter, Hannah. Hannah has Down syndrome. We’d gone home from the maternity ward only to end up back in the children’s wing via a panicked trip to the emergency room the next day.
Through a series of events, we learned that Hannah was not getting nutrients into her little body. This was primarily a result of her low muscle tone, and it was exasperated by our lack of knowledge as her parents about Down syndrome. We had gone through various emotions that week, spanning the range from joy to disorientation to fear. However, at that moment, the feeling that stood out was loneliness.
Thankfully, it was later that day that the local Arc Chapter, Alpha Resource Center of Santa Barbara, reached out to us. They came to visit us in our hospital room where they shared valuable information and let us know we we’re not alone. From that moment our learning curve was steep as we began to understand our new world.
Over the next several years my role grew from father to board member to Executive Director. During that time, I discovered there was an even larger community of families like mine. Not only did Arc Chapters exist throughout the state, the Arc of California, of whom many of those local chapters are members, was working on behalf of us all to ensure everything from funding for the vital services we’d received for Hannah to protections for those with intellectual and developmental disabilities (IDD) through new legislation, all while connecting families and organizations throughout the state.
We couldn’t have done it alone. I couldn’t be the father Hannah needs on my own. I’ve learned from the fathers who came before me. I watched firsthand as fathers advocated for their children’s individual needs. I heard the stories of generations of fathers lending their voices to the cause, inciting change at the state level. This Father’s Day, I’d invite other fathers to join the effort. We are making a difference.
Whether life has recently brought you into the IDD community, you’re a longtime family member of an individual with IDD, or perhaps a community member that understands the importance of inclusion and opportunity for those with an IDD, there’s local and state levels of involvement and resources that can allow you to make an impact, too.
My family will forever be grateful for the work of the Arc of California and local Arc Chapters in every community. While I never imagined this path for my life or family, I wouldn’t change it for the world. It’s led me into relationship with some of the most amazing people I know – and at the top of that list is Hannah.
