The snow is falling softly at midnight and outside it is just stunning with the porch light reflecting on the white blanket covering our rolling hills. Ray is making his way up the hill to his house with his dog, Hahli, who celebrated her first birthday yesterday. Tomorrow we’ll be snowed in, here on Juniper Hill ….. and Andy and I will cross country ski across the fields, Brent will split lots and lots of wood and keep the fireplace going, and Oh Joy! it is John’s night to cook and I am hoping for a repeat of the Beef Bourguignon that he made a few weeks ago. And maybe, just maybe… NO staff will be able to get here and it will be just us, all day.
Our life sounds so idyllic… and actually, that first paragraph is pretty accurate. We have come a long way in three years! But lest you think ‘Oh, that could never be my kid’ or… ‘it must be an easy group of guys’…. or… ‘they must have a lot more money than us’ or…. ‘my son just eats ramen, he would never be interested in cooking a meal’…. I’m also going to mention, of course, the gritty details that go along with our idyllic existence here on the farm.
These days, it’s all about a comfort zone. An anchor. Home. A safe place that we know, and trust. A place where familiar things happen over and over each day and week and month… with enough repetition so that when new and unexpected things occur, it’s not such a big deal because that comfort zone is there. The familiar people are there, the animals that we know, the same familiar food on the shelves, and that perfect size plate, spoon and glass that you like to use. It’s the comfort of being friends with your staff (even if the agency that sends them insists that you have a professional, not friendly, relationship. Silly rule, yes. More on that later). And it’s the comfort of being friends with your housemate’s staff, too.
It’s about routine.
It’s about weekday winter mornings when the fireplace is crackling and staff is arriving and everyone is getting up and ready for the day and the house is buzzing with familiar conversation and we’re talking about the dinner the night before and the leftovers are out for everyone to try.
It’s about that awesome time each weekday ~late-afternoon~ when staff leave and the screens go on …computer, television, IPAD, DS,…and the chips and popcorn fly off of the shelves .
And it’s especially about Saturday mornings. No staff. Sleeping late. Really late. No responsibilities as long as the animals get fed. Nothing to think about or be reminded of until Monday morning.
It all sounds great… and it is, pretty much. The comfort of the routine, the relationships, the extended Juniper Hill family… it trumps the gritty stuff that happens. It trumps the stuff that doesn’t happen also.
Because it is obvious to me, now, that being an adult with autism is just never easy.
Not a day goes by for these guys, when they are not feeling discomfort, or frustration, or anxiety about something.
Yes, they are friends and they trust each other. The familiarity is very comforting at this point. That does not mean, to them, that the other’s voices are pleasant to listen to. It does not mean that they don’t say things to each other that are hurtful. It does not mean that their taste in music and TV is acceptable to the others. It does not mean that they don’t find each other really annoying, at least sometime during the day. But having friends means compromising, and that can be SO difficult, how do we solve this?
The staff are great, they have become part of our family and we love them. It’s been a year now since the ‘new’ group of staff joined the staff who had been here since the beginning, and things have fallen together and the farm runs fairly smoothly. But at 930 AM… when everyone is in the kitchen… (including the guys who live in the top house because they want to be eating breakfast where everyone else is)….when five staff have just shown up and are talking and moving around and in your way and bumping into you and going over what has to be done and LAUGHING and TALKING too loudly… it’s JUST TOO MANY PEOPLE. The guy’s funding works in a way that does not allow staff to work with more than one person at a time. Everyone needs ‘encouragement’ to get out of bed in the morning, and wants THEIR staff to be there … how do we solve this?
The ‘system’ is supposedly set up to ‘support’ people with autism that live independently. To support them in their dreams, their goals, their basic needs. In three years everyone here has come a long way in learning how to cook and make healthy ENOUGH choices, how to be organized and clean ENOUGH, how to be considerate ENOUGH of others, how to think about finances ENOUGH to be kind of responsible….. but doesn’t this sound pretty much all ‘basic needs’? What about dreams? How does a support person make DREAMS happen? What about love? What about a life? What about a bucket list? It’s REALLY complicated, and REALLY hard to make happen for someone else….. how do we solve this?
How can you focus on dreams, when it takes ALL of your energy just to get through each day?
Basic needs…we’ll keep working on all that stuff as we go along. And there’s more besides… there’s the continuing saga of the correct medication, or just having a job that you like, that you’ll keep, and that will pay.
The days are full here, and fulfilling. Our family keeps growing… sometimes things happen and the living situation will change for someone …. so some of the guys have come and gone, and then come again… and gone again….
but always… they remain part of the family… and still remain part of the week’s activities, or the weekend excursions
and so the family grows…. and having this family, well, it makes our lives way more than ENOUGH.
But this coming year, in 2014…. we’re going to think about DREAMS….