Thursday, January 20, 2011

It takes a village

I’ve always heard it said that it takes a village to raise a child. The picture created by that saying always fills me with thoughts like warm, nurturing, safe. Although I am fully responsible, I am not alone. Although I can take care-of myself, someone else will always have my back. This idea of interdependency is timeless. As we care for each other in community, we each become stronger individual entities, with more to contribute to the larger community, making the community as stronger habitat, a both a fort, and a force to be reckoned with.

Somehow, things seem to have changed. Although we all still agree with these ideas, we are behaving differently. Slowly, we have shifted to valuing independence over interdependence, autonomy over shared responsibility. We used to say ‘no man is an island’. Now, we can lustily sing ‘each man is an island!’ The village has vanished, and is replaced by single huts communicating superficially by various electronic devices, sharing pictures of the life we live virtually alone.

This may not be everyone’s experience, but it was mine, especially after my first son was diagnosed with autism. The crowd huddled around us, sharing sadness and horror, then slowly slinked away, until, there we stood, alone.

Friends are not to be blamed for their reaction. They were in as much shock as we were. They were in as much denial as we were. They too didn’t know what to do with this child. But, we had to learn, they didn’t. So, the easy babysitting arrangements for the date nights became not so easy. As Jay got older, people seemed more daunted by the prospect of being with him. Intuitive, skilled, loving, childcare was very difficult to find. There was no predictable source. When we did find it, we couldn’t afford it.

Parents of children with autism are on the job night and day. For my family, there is no down time. The super vigilance leads to frayed nerves and sharp tempers. Innocent children can get reprimanded for almost nothing at all. Sleep deprivation, poor diet, limited social interaction outside of work (for those who work outside the home) and generally poor self care lead to partners who cannot even love themselves well, let alone love each other and their children. On Mazlow’s hierarchy, we are on the bottom rungs, scratching around to meet basic needs like food and shelter and rest. Self care ranks up there with self actualization, a lofty and elusive goal.

The thing is that this situation is not sustainable. Recent news stories of depression, suicide and other atrocities in families dealing with special needs children highlight the level of strain being experienced by all concerned. With autism currently affecting about 1% of all children born in the United States, it really is time to dust off our village mentality, roll up our sleeves and get to work.

A lot of wonderful work has gone into many areas, including diagnosis, causes, medical care along the lifespan and so on. Still, families feel lonely and stressed. Every child with autism represents the need for an entire team, an entire village of people rallying around. Both the child and his or her family need people to be physically present, through thick or thin, through tantrum or poop, through apparent starvation or aggressive behaviors.

We just need people around. But not any person. Not people who will judge our parenting. Not people who will ask how we manage and comment that they could never manage, not people who think our children are insane. We want people who want to deeply connect with others, no matter how different they are, who have a wide definition of ‘normal’, who define being helpful by really tuning in to the child and his or her family’s experiences, not by that they think would be helpful.

The village I imagine is a place where we go with an idea, rather than against it. In that village we learn to see opportunities for celebration, gifts in unlikely packages, joy where others see sorrow. We experience love and happiness, we move to the music we hear, we see the beauty around us. We are energized to dream and create and strategize, and work and work and work, all because we decided to find joy, not tragedy. That’s what happens in this village.

I used to find our engagement with autism to be a very dark, depressing and defeating experience. I gave up my dream of what could be, I focused on my fear of what could be, I lost my energy and drive for life. I have decided this isn’t the way I want to be in the world. I have challenged myself to see the joy in the precious gift that is Jaedon, my 12 year old son, diagnosed with autism. When I have joy, I can dream. When my dream is alive, I can create and strategize and work and work and work to fulfill my dreams. I am more vibrant, more fun and so much more alive. I live in the moment. I enjoy today, while working towards tomorrow. More than anything else, I can enjoy Jaedon. And he truly is a joy

I have had to create my own village. I allowed Jaedon’s beacon to shine and he has attracted some wonderful people who have helped us as we transition to our ‘new normal’: holistic, joyful life engaging autism, and everything else life has to offer. Our transition is still in process, and as we journey, I see many others at various stages of their own journey, and many who have yet to start.  

Sign up!  Just pick someone, anyone that needs a village.  Let's create these musical, beautiful clusters of community everywhere.  It still takes a village...

1 comment:

  1. Faith,

    Yours is an inspiring vision, one that can begin with any individual who wants to see it made manifest, who's willing to simply be helpful, and who pays attention.

    From my perspective, it's perfect: wonderfully beneficial, simple, clear and doable.

    Thank you!


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