Category Archives: staff

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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We need to talk about staff. Be careful what you wish for!

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BINGO! Brent won a divided dinner plate… (his preferred way to set up his meals)

It was a great day last Wednesday, our weekly get-together with friends day.  It was a Hang Out Winter Wednesday (‘hang out’… because we are definitely NOT getting any work done these days !) and we played Bingo with our friends.  New prizes from the Dollar Store made it a hopping competitive afternoon, and everyone had fun. Almost.

We’ve been together here for awhile now, this Wednesday crowd….our extended Juniper Hill family.  Sometimes it feels that here at the farm, we can be happy in our little group and… for a little while …. we can ignore the politics going on outside of our boundaries, the discussions that ultimately affect all of our lives with policies that dictate what the ‘best life’ for a person with a disability should be.

There are two stories told below.  Two very different, and very real scenarios.  Both can be acceptable in the adult system that provides services to you or your adult child with autism. Make sure that you truly understand the ‘vision’ of the agency that you choose, and how they carry out their mission.

Be careful what you wish for.

Our Bingo afternoon began a bit rough..  Very rough actually.  And very sad and upsetting for all of us.  Our friend Debbie (I’ve changed the name for privacy’s sake) arrived with a new staff person, and she was visibly upset from the first minute. ‘I miss Anna’ (former staff person whose name was also changed here).  ‘She isn’t working with me anymore’. Why can’t I talk to her?’.  I MISS Anna!’.  I NEED to hear her voice!’  Why won’t they let me see her?!’ and screaming ‘GET AWAY FROM ME!’ to the new staff person…. and screaming ‘I hate %&*@!#$!! (the name of her provider agency ).  It escalated to the point where Debbie threw herself on my bed sobbing, calling out Anna’s name.  I held her in my arms and she squeezed me until she calmed down. She eventually joined the Bingo game and seemed to enjoy it, though she was quiet for the most part.  She left early.

What happened?  It seems that Anna, the beloved staff person, broke a rule. She was suspended, probably fired. She is now forbidden to have any contact with Debbie, with whom she has been working closely for months.

And the rule?  Your personal life MUST be kept separate from your work. This means that the person with autism must not meet your family, visit your home, or be involved in your life in any way.  There must never be contact with the ‘client’ while not at work. (ugh.. how I abhor the term ‘client’…)

And the rule-breaking event?

We have had quite a winter here in the northeastern U.S.  Back to back snowstorms with power outages lasting days in some instances.  Power outages, with autistic people.  Families have been scrambling to make it as easy as possible for their family member…. taking precautions, buying generators, leaving town.  Debbie’s area of the county was hit hard, and their power was lost for days.  Debbie can NOT handle power outages.  Anna lives nearby and had power, and she volunteered to walk over and get Debbie and bring her to her house until power was restored. Debbie felt safe with Anna.

The program found out that Debbie had been to Anna’s house, and Anna was suspended.

The other rules of this program?  Do not form a personal relationship with your client, be professional at all times.  Do not touch their money, or their meds or personal belongings. (Debbie’s family bought a power generator and could not get it to their house in their car, so Anna helped them by putting it in hers… Anna was also cited for that).  Do not eat their food. No photographs.  Do not ever transport another person while you are transporting your client.

This is the way that this program keeps their ‘clients’ ‘safe’.

and then there is this rule:  ‘Do not do anything for them.  You are not there to do their work for them. They must do it themselves. If they don’t want to do it, they don’t have to’.  I guess this means that they already have to know how to do something before you try to teach them how to do it. (Whatever happened to ‘modeling’ a skill as a step in teaching someone?) Unfortunately, what this approach often translates to is an excuse for the staff to ignore the bathroom.

This is the way that this program ‘promotes independence’ in the name of ‘self-determination’.

**just as an aside here… it is true that everyone should be able to ‘self-determine’ NOT to clean their bathroom.  Unfortunately, a lot of these guys that are supported by these agencies do not fully understand the consequences of a decision like this.  This is not fair to them.  It is absolutely necessary that ‘understanding consequences of your decisions’  HAS to be part of the support that is provided.  It rarely is. The consequences of not cleaning your bathroom when you are an adult are that your housemates will be mad at you.  They will have to do your part of the work in keeping up the house and their staff will have to take time out of the regular routine to help them.  This makes the staff frustrated that the work is being dumped on them. In a rental situation, the landlord will not want tenants that do not take care of their place.  Self-determining to not clean your bathroom puts you in jeopardy of eventually losing your friends, having your friends lose their staff, losing your housing because your housemates don’t want to live with you or because the landlord no longer wants to rent to you, and ultimately affects the way landlords view renting to people with disabilities… .  This is an entire blog post in itself.**

Here is another story.  This one is happier.

Pete is here visiting us at the farm for a week.  He is a good friend who has known us all for three years.  He knows the staff people of the other guys here as well, and he receives support services from the same agency as Ray, who lives here. This morning, Pete had no scheduled staff while all of the Juniper Hill guys did.  Ray asked his staff if Pete could come with them to his volunteer job at Comp-Animals, the animal rescue organization where Ray walks dogs and does some cleaning a couple of times each week.  Pete went along… in the same car…. with Ray and his staff.

Ray's smoked salmon in a puff pastry crust' and Pete's Old Bay Shrimp and Scallop pie

Ray’s ‘Smoked Salmon in a Puff Pastry Crust’ and Pete’s ‘Old Bay Shrimp and Scallop Pie’

It was really nice for Pete to be able to tag along with Ray this morning. They also cooked a meal together this week with Ray’s staff, they made an awesome couple of seafood pies.

But it was tonight’s events that really made us realize the importance of having an unwritten policy of friendship and  ‘inclusion’ with your staff members.

Ray spent the afternoon today with his staff in the town where he used to live independently, 45 minutes from the farm.  He went to the library, his favorite one, and checked out some books and videos.   He cruised his favorite stores, visited a friend. When it was time to go, his staff person brought him to the bus station where for two years Ray has waited by himself and taken the bus back each week to our neck of the woods.

Today, for some reason, Ray got on the wrong bus.  He does not/will not carry a cell phone. He did not panic (maybe just a little!).  He realized he was on the wrong bus, got off several stops down the line, and found another bus to take him in the direction back towards the bus station.  Ray then walked for 45 minutes looking for his staff’s apartment, and found it.  He had seen where it was only once, months ago.  Somehow, he found it.  She fed him dinner and drove him back to the Hill at 7 o’clock at night.  Of course she did!

Wow, count the rules that would have been broken today if it had been this other program.  Boundaries.  Personal life.  Being at the staff’s home, with her child. Riding in the car with another person to the animal rescue.  Sharing food. Assisting during off hours.

And if Ray had been supported by this other agency, with all of its rules, he most definitely WOULD have panicked tonight.  Because he would not have had the supportive, caring, inclusive community that he has now, after three years living here at the Hill. He has personal relationships with ALL of us.  All of the staff, all of the guys, all of the guy’s families… some of the staff’s families.  He has all of our phone numbers (which he would have used if he had not found her house).  He has been to some of the staff’s houses…. including the other guy’s staff. He is skilled, self-confident, self-determining and independent, and he feels safe.

This agency would, in its defense, say that if Ray had been one of their ‘clients’ and somehow contacted their emergency hotline (staffed by unknown people) by asking someone on the street or going into a business and being confident enough to ask to use a phone (not sure how this fits with their ‘safety’ policy)…  they would have sent a taxi to take him home.

Setting up supports for yourself or your adult child?

Who are YOU gonna call?

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Banner photo at the top is of a few of the Wednesday gang with Alison’s (Andy’s staff) puppies

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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