Culture

The Village

Mother’s Day morning doesn’t look that much different from other mornings in our house. It’s not that we don’t celebrate it or we don’t try to make it special. It’s just that our family is a little different.

My wife and I are the parents of three boys. One of them is a beautiful 11-year old with autism. Parenting our children takes a level of focus and vigilance that makes our experience different from most.

It happens in shifts.

Mornings, Mother’s Day or other, are my shift.

Yesterday morning, as we dropped our boys off at the children’s ministry at our church, something occurred to me. We were greeted at the door by the high school aged daughter of a friend of mine. It was her turn to be Aidan’s hand-over-hand partner during services. Our church has a ministry that provides one-on-one trained supervision for special needs kids. It’s an amazing service that allows families like ours to attend church when otherwise it’s not likely we would be able to.

It was Aidan’s first time with her as his hand-over-hand. Over the years, he’s had at least dozen or so different helpers. The first of his now runs the whole ministry that helps many families like ours. What occurred to me, as I dropped him off with yet another person willing to care for him, is that wherever Aidan stood, a village grew.

It was beautiful.

A few years ago, I heard Dr. BJ Miller, the executive director of the Zen Hospice Project in the Bay Area, talk about his organization’s approach to end of life care on the Tim Ferris Podcast on my way in to work. Zen Hospice provides an experience that allows people to embrace and acknowledge what is coming and to live life until the end. “We believe it starts with being open to the idea of discussing death. Daring to look at it, and bringing your own light to it.” says a quote from their website.

Six months before Aidan was born, I lost my mother to ALS. After two years of knowing ALS would be her end, and watching her degrade into incapacitation and then death, Miller’s message resonated with me. Something else occurred to me as well; just how similar providing long term care for family members who are not likely to recover was like caring for my son. The fatigue, the sadness and the deep dark hole one could crawl into were all the same.

Weeks later, I reached out to Dr. Miller to ask for advice as we had just started our own organization, Care For Us to help the family members of special needs children. He told me two things that he’s learned by helping hundreds of family members in hospice care. They’ve been foundational to my approach to my parenting my special needs child since and first principles to what we do at Care for Us to help others do the same.

1-Don’t run away from the suffering. Cultivate the ability to be with people beyond our “help”.

2-Cultivate a vantage point that allows you to see yourself in the person receiving care. It allows for a notion of service and mutual benefit. It staves off depletion.

What Dr. Miller describes, once mastered, unlocks one of the most powerful experiences life has to give. It’s a message woven throughout my faith.

Don’t be afraid of what’s coming.

See yourself in the struggle and suffering of others.

And care for them.

It’s been eight and half years since Aidan’s diagnosis. The village that’s grown around him is the fabric of our lives. From the family across the street whose triplets have all cared for Aidan at Church and helped track him down when he’s wandered off when we’ve dared to take our eyes off him for a minute to the army of behavioral therapists that have stayed in our lives to the respite workers who provide us a breather to his one-on-one aid at school that he’s been with since he started who spends more time with our son Monday through Friday than we do.

It takes a village. And if you let it, a village will grow.

People are drawn to Aidan because of how they feel about themselves just by caring for him. What we’ve learned on our journey is an indestructible antidote to the pessimistic view of a degrading society that fosters a lack of trust in others. Parents want their children to have the experience. Professionals choose the field of care because it’s who they’ve always been, or who they’ve become since experiencing it.

Because once you do, you’ll never stop.

Not long ago, Aidan wandered away when one of us, probably me, left the side gate open to our back yard. We couldn’t find him. We called the police and I went out looking. Within minutes someone had found him near the park across the street from our house. He’d gone there to play on the jungle gym. The someone who found him was a friend of mine, the husband of a friend of my wife, and the father of their own son with autism.

He was a part of the village.

By the time I got to them, there were a half dozen of our other friends there. My wife sent a text. Aidan was missing. The village came to help.

The lesson of our experience with our son isn’t how wonderful it is to have great friends or how unique and special our community is to have such amazing people. It is all those things. The point though is that it takes a village to do what we do. And you’ve got to grow it.

There’s no choice.

One of the truly tragic things that happens with special needs families is that they too often close out the world and close in on themselves. The work is too hard, the outside poses too many real and difficult threats. The symptoms and the life that forms around them are too embarrassing to let others see. Somewhere, somehow the crushing sin of shame creeps in.

The fear of letting others in is powerful.

It’s the only way though. And you’ll find, when you find the right ones, they’ll never leave.

There’s a secret to this message too. It’s not just for special needs families. The human experience started around campfires. It’s meant to be lived in circles with others. Not alone.

If you’re reading this and you’re on the special needs parenting journey and you just can’t imagine where to start, check out Care For Us at http://www.care4us.org. We’re local in San Diego county, but we’ve got lots of ideas of where to start for just about anyone anywhere willing to reach out.

I hope you do.

 

Sean Hughes is an author, a veteran and a special needs father. He and his wife are the founders of Care For Us, a non-profit organization serving special needs families in San Diego County.

4 replies »

  1. man Sean you hit it out of the park again. I am disabled w chronic moderate to severe chronic pain and live on SSD, the only way I survive is by cultivating my village of mutual aid. I take, and I give. Without my community I would not be able to get by. This is practical things but also sould things like boardgaming which helps me deal with pain. With great excitement I am preparing to run games with vets with PTSD/disability and I hope to help them deal w pain too. We take care of each other. And it is the most important action right now, to heal divisiveness I feel. Kindness. As much as possible.

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  2. Sean, thank you for your inspiring words. While many of us cannot possibly understand your individual situation, you aptly show how we can all be part of the village. Seek out those among you who might need a respite, offer a hand to someone who looks like they’re down, be available to receive a text or a call about a missing child, etc…

    I can only hope that I’m living my life in my community as well as those in your “village”.

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