"Bittersweet is one word that somewhat expresses what it was like to hear my son’s first words at age 4. Joy that he used a word, and pain that his first word wasn’t uttered until age 4.
Life with Lee was a bit of a battlefield every single day as communication remained his dominant struggle. Unable to communicate verbally, he screamed, hit, kicked, spit. He was certainly able to communicate his extreme frustration, anxiety and anger. Imagine not having words to communicate in a confusing world.
Slowly, very slowly, he added new words. Happy was the day when he put 3 words together! He remained at that level for the next many years.
Lee was diagnosed as autistic at a time when it was considered a low-incidence disorder. I remember being told only 1 in 10,000 births is autistic. I was devastated, but my daughter, Lee’s older sister by just 19 months, was jubilant. “We’re really lucky then!” she exclaimed, as though we’d won a much coveted prize. In fact, we had.
Lee lived with me through his school career, extended programming, and working at WACOSA. He had come a long way and I would marvel at his new abilities to tolerate waiting, taking turns, and dealing with unknown factors.
Autism is a puzzling disorder and the spectrum is wide, but it is generally characterized by difficulties in behavior, social interaction, communication and sensory sensitivities. He doesn’t like to be touched, is sensitive to the textures in food, sees people more as objects than people, and has few filters in social interaction.
For years I had known that one day Lee would move away from me. Thinking about where this place would be was unnerving. I’d heard about Camphill Village many years earlier and had brought Lee there one time during their annual open house or “Open Day”. He was still quite young and I wasn’t looking for anything immediate. Even on this very busy day, I felt serenity in the acres of land and people. I tucked this place in the back of my mind for many years.
For several years I had “primed” him by gently and nonchalantly stating that he was growing up and someday he would leave home and live in his own apartment. (His sister had moved away and was living in an apartment so he had some kind of an idea what I was talking about.) His response was always, “no grow up” and “Lee-mom-forever”. .
About 2014 I sensed Lee was growing restless. His days were very routine with little new stimulus. He watched a lot of TV and movies. He didn’t have the ability to tell me, but I knew it was time. He needed more. He was 26 years old.
Lee has been at Camphill Village over 2 years now. I am amazed at his continued progression. He has become much more social, even initiating conversations with others. That is not how he usually operated unless he wanted to tell you about a portion of a Disney movie, and then it was relayed sort of “at” you and not “to” you.
At a recent Camphill gathering, where social norms are explored, Villagers were encouraged to give a hug to another Villager. I’m told Lee gave long and genuine hugs to several people. He often only tolerates a hug, so this was an enormous step in growth for him.
Moving day, March 7, 2015, was the start of a new life for Lee. We loaded up a truck with his bed and belongings and drove to Camphill Village. I wondered if he really understood that this was more than a visit. I sensed he was stressed but also that this was what he wanted to do.
Not long after his move in, we had a meeting to discuss how things were going. Lee attended, too. He sat silently as we discussed his behaviors, the good and the not-so-good. He was gleaning that we were talking about him and his being at Camphill. When we had a pause in our conversation, we all sort of looked at Lee, and he pronounced, “Stay.”
One word changed everything.
My son is happy at Camphill Village. He comes home for visits but is always ready to go back. He has experiences that I was unable to provide for him, like feeding the cows and chickens and pigs, checking traps, and working with others. He proudly tells me he is a farmer. I know his confidence has increased as he has separated from me and is creating his own life.
Probably one of the best aspects of Camphill is the community. Social belonging is a fundamental human need. Lee knows everyone in this extended family; he lives and works with people he feels a part of and belongs to. Lee is not alone. He belongs. This cannot be underestimated in value.
And things just keep getting better. Thank you to all who advocate for this unique model of community."
-Lee's Mom, Linda
