Category Archives: tolerance

The Pursuit of Happiness: Juniper Hill Style

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Ray was gone for three hours in the adjacent woods one afternoon this week. Three hours!  I was just about to go looking for him when he came trudging

Ray's pond in bloom, 2013

Ray’s pond in bloom, 2013

back in rubber boots, cart full of interesting stream rocks to put around his pond, net in hand, and his container with two crayfish and a salamander.  He added the creatures to his pond that we finished last summer, and told us his ‘fish stories’.

Michael called this week, excited about his new place… asking advice about laundry, budgeting, relationships, and planning our summer trips.

John, chef extraordinaire,  sat for an hour yesterday reading recipes from a new Mexican Cookbook and talking about ‘catering’ a private party for a friend.

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Brent’s potato harvest 2013

Brent and Pete rototilled and planted their own bed of potatoes at the top house on Thursday, even though we have a big bed of potatoes planted for everyone down here at the main house.  They just wanted their own patch of potatoes.

And Andy, well he changed his view this week. Each evening he sits outside on HIS chair at HIS table on the patio before dinner, quietly contemplating, with his various personal trinkets and pebble piles on the little tile table. For over a year now, he has been sitting facing the side yard where the angora rabbits are.  And this week, he rearranged and changed his seat to watch the evening sky and forested hills over the sunflower field… it really is pretty this time of year. He came in first and announced it. ‘I want a different view, I am rearranging the patio OK?’

These are the kind of things happy people do, I think.  Right?

I mean, these guys do struggle with anxiety and sensitivities and impulse control. They never have enough spending money.  They complain about their housemates.  They don’t have jobs that give them enough hours or jobs that are steady. They all have dreams that have not yet been met.

But I really believe that they are happy. There is always something that they are unhappy about each day. But lots of times if asked, they say they are happy with their lives. And happy people, they care about the view.

I’ve given this a lot of thought this past month, because we were asked to speak at a conference about ‘happiness’.  And this is what I truly feel, so I’m sticking to it.. for now! dff-logo Last Saturday the guys and I presented at the  ‘Autism and The Pursuit of Happiness’ conference given by Dragonfly Forest, a camp for children with autism and other disabilities.  When they called us a few months ago and asked if we would all ‘present’, I hesitated.  Well, the guys don’t actually … ‘present’,  I tried to explain. But I thought about it and decided to give it a shot.  I wasn’t sure how we would all have on our happy faces for that day…  but that’s not really what happiness is all about anyways, right?

So I came up with a powerpoint presentation highlighting the things that I think have contributed to the guy’s ‘life attitude’, be it happy or not, and piled everyone into the van for the ride early on a Saturday morning (a miracle in itself). We were lucky to have our own corner in a quiet side room, with a table on which we could put our important ‘stuff’ during the conference.  Michael arrived and announced that there was NO WAY he was going to stand up in front of a bunch of strangers and talk.  Rebecca wasn’t feeling 100%.  Andy had stayed up all night and didn’t come at all. Brent brought a blanket to sell, and that was all he was concerned about.  And Ray brought Lego creations.  He was ready and willing to ‘present’ his Lego stories. I told them all that I would pay them 10 bucks if they would at least sit in the room while I talked, that it would be nice for folks to see who they were and maybe ask a few questions and they could answer if they felt like talking.  So they all decided to make the effort and go outside of their comfort zone for an hour.. for 10 bucks.

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It. was. amazing.  It was either the most outlandish/uncomfortable presentation for the audience… or the most amazing /best ride ever.  The guys mostly did it themselves… with me just clicking through each powerpoint slide and saying a few words before the guys cut in and told everyone the story behind each slide. Michael, who had intended to leave as soon as he arrived because he ‘was not going to stand up and talk in front of people’… jumped up at the first slide to talk about the photo and how it was one from the first year we were together … and he was the one who led everyone else, standing the whole time in the front of the room leading the conversation.  Really. I loved it.  These guys rock.

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They reminisced about good times.  They were unorthodox.  They argued. In the middle of the presentation, they excused themselves and went outside to work out their differences and came back in five minutes best friends. They talked over each other.  They laughed with each other. And they were occasionally R-rated… talked openly about sexuality, bullying, abuse, and living in a residential facility.  Rambled on and on in detail about Lego creations and why each part went where. And they told the story of their lives together the past four years, talking off of the slides that had the memories…  the trips we have taken, the meals they’ve learned to cook, our animals, selling sunflowers at the Farmer’s Market, and their staff, their wonderful support people.

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And every so often during the presentation, Brent would raise his hand.  And then he would come up to the front of the room and stand next to Michael… holding the blanket that he was crocheting….  and he would say ‘I making blanket IMG_1375bigger’ and then look at me… and I would tell the audience, each time, that Brent crochets blankets and sells them, and he wanted everyone to know that he had one for sale for $35 at the table in the hallway.

And of course, after the presentation someone bought the blanket.

It was a great day. I am very very happy.

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Andy’s view

 

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Happy New Year! Reflections on three years together

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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. 

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Andy has been Special Olympics cross country skiing for years!

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 .

It’s about the absolute best  after-dinner evenings anywhere. Music, The BigDSC_0108 Bang Theory, ice cream, slippers, tea, a cat on your lap and dogs sleeping at your feet.

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?

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yes, everyone has their own favorite plate….

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….

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From Tolerance to Acceptance…. getting through the rough parts

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EVERYTHING WORKS OUT IN THE END.  IF IT HASN’T WORKED OUT YET, THEN IT’S NOT THE END…. Tracy McMillan

It takes time… lots of time. It takes time to accept the fact that food has to be shared, that the TV has to be shared, that friends say hurtful things but often don’t know they are doing it, that friends say hurtful things knowingly but only are saying it because they are hurt and scared.  It takes time to learn to roll things off your shoulders, even if they really bother and annoy you… like being teased. or people in your personal space.  Or loud outbursts.  Or changes in plans. Or having to clean the bathroom, cause it feels like you do more work than everyone else because bathrooms are gross and should count three times as much as any other chore.

It takes time.. to get past TOLERANCE, and move into ACCEPTANCE.  There’s a big difference between the two! Often, the folks with autism get there ahead of their parents.

As a ‘housing counselor’ to parents who have taken the leap and helped their IMG_0932young family member move out on their own, I’ve witnessed the fear and frustration and confusion and uncertainty of whether or not it was the right thing to do.  Remaining at home was  safer for your adult child in lots of ways…it is just so scary to allow the rough parts to happen and not give up.  You know that there are probably going to be more rough times for awhile. And it was easier and less time consuming too, to just have them living at home.  No worrying about staff not showing up. Their clothes matched, their room was cleaner, they brushed their teeth better, and you could keep track of what they were eating. Really, is this worth it??

I began writing the Juniper Hill blog in the winter of 2012, and  my first post was about how much everyone was learning to accept each other, in just one year. Now, two and a half years since we started, there are still rough spots…. but the relationships have grown, and mellowed.  I am not a parent to any of the guys, and therefore have different feelings..  Less worry, less uncertainty.  But for me, I am quite sure. It is worth it.

Brent requested a family dinner at Red Lobster for his birthday last week… so we piled into two cars, made a grand entrance  and took over their largest table for two hours.  We had MORE FUN than anyone else in the restaurant that night, we were pretty sure that everyone wanted to be us.IMG_0931

We ordered fun drinks, our favorite seafood combinations, took silly phone pictures of ourselves, reminisced about past birthday celebrations, listened to everyone else’s requests for THEIR future birthdays …. and clapped to the Red Lobster birthday song for Brent.  And we ate cake, of course!

It didn’t start out like this, our life together.  Wow, not by a long shot.  And the meltdowns and frustrations and arguments still occur, but they’re different now.  They just don’t go as deep, are over more quickly, and are taken in stride by the other guys.  Two and a half years together, and I think the word here really is IMG_0948acceptance.  It just kind of happened…. over great dinners, fun trips to amazing places, cozy evenings by the fire, helping each other through frustrations, talking over problems, arguing about house rules, coming together and caring about each other in times like hurricanes and power outages, and celebrations of course, celebrations of accomplishments…. holidays… birthdays… milestones.

It was not always easy. There really  had to be lots of flexibility, and patience, and tolerance, and FAITH…to get through the rough parts. There has to be tolerance first, before you get to acceptance.  I’m not sure that it is ever easy, especially with autism.

First there was that fist fight on the deck that first year… and the time theIMG_0942 pitcher of iced tea got thrown all over everyone in anger (and panic no doubt)…. and the banging on the walls…holes and more holes… Hey!  that still happens!….. and the teasing over each others likes and dislikes and beliefs… and the stealing…. and the meltdown yelling at midnight… and the phone calls EVERY TIME I was out at night because somebody would always take it upon themselves to order the others around, and this was scary for the more submissive guys…

It’s difficult to write about negative things, it’s always easier to tell happy stories. I worry about discouraging people from taking the chance on independence.  But although these are true stories,  they are also HAPPY stories… just with some glitches….and somehow it puts the ‘lack of tooth brushing’  in perspective! (Keep reminding the staff, the tooth brushing will come).

And we love to tell the ‘pitcher of iced tea’ story… it’s become legend!

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The friendships are there. We really know how to have fun together…. and laugh….and we are one big kooky quirky eccentric amazing marvelous family…   It was great to be reminded of that, at Red Lobster last week.

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