Tag Archives: farm

From housing model to home: five years later.

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Through the grove beside the pasture, a well-worn path now leads down the hill to Home

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and another worn footpath, now the shortcut to Ray, Pete and Brent’s house


In the summer of 2010, we painted the newly rehabbed 4 bedroom house a
forest green. We fenced two acres of pasture and moved in two alpacas, five cashmere goats and a bunch of chickens. Over the next 10 months we got to know eight (yes 8!) pretty cool guys and their families. 

Five years later, and these same eight guys are still around.  There are five guys living here at a time now, here on the Hill.. in two different houses.  All eight of the guys have spent time living with each other here.  Some have left… and returned, left again… or moved to their own apartments, or gone home with family for health reasons. But still… on Wednesdays and birthdays, most of the original 8 guys are together. Celebrating milestones together, working together (well, a little!), going on trips together, hanging out on market day in the Juniper Hill booth together, talking together, eating together, just being good friends… together.

June 2015 Celebrating Patrick's one year anniversary in his own apartment!

June 2015 Celebrating Patrick’s one year anniversary living in his own apartment!

The ease of their interactions is obvious… how sensitive they are to each other’s moods, and how much they care if someone is not having a good day. The support they give to each other, the shared humor, shared food, and shared history.  The brotherly bickering and how quickly it gets resolved. The level of confident independence at which they move through their day … with each other for company and support.

Five years ago, we began as a Housing Model.  We are a family now, and Juniper Hill Farms is a Home. It’s different, and it comes with complications.

For the last five years, the slide below has been the final point made in the Juniper Hill Farms presentations that I’ve done for family groups, housing, or autism organizations.

‘Our goal is to help other families feel capable of creating a living situation like this for their family member’

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Seriously, ‘Our‘ goal?  Wait, let me check with the guys.  Hmmm I don’t think so.

It was, and still is one of MY goals. Learning from these guys about life? It’s still exciting every single day.  I laugh, I get frustrated, I philosophize, I have fun.  Every experience with them shapes the story of how to create a life of ‘inter’dependence and happiness for an adult with autism… a story that will hopefully encourage other families to give it a try. In five years, the learning curve has not leveled off, not in the least. It continues to show the increasing complexity of an independent life with autism, and how rich that life can be for them as well as for everyone around them who is lucky enough to be along for the ride.

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Celebrating Michael’s birthday (really Ray is having fun!)

The guys, however? They now have other interests. And priorities.They really just want to get on with their lives.

We had so many visitors that first year.  We had an open bedroom so that we could welcome interested guys who were looking for more independence and who wanted to see what that felt like for a week or two, or a month or two. Its scary to just make a move… much easier to just test the waters. So just come to Juniper Hill to try it out!  It was a really good idea, at the time.

We also had families and groups of people from related fields visiting to see what we were doing.  The guys were used to strangers coming in and out.

and actually … well, they were strangers as well!

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Check out this year’s new variety… Greenburst!

Brand new to the living situation, we all did the best we could. There were not a lot of established routines that first year… everything was a trial run and we worked out kinks every day.  We learned how to take care of animals and we tried to grow sunflowers. We had dinner together every night, went on fun trips together, argued and worked things out. We became friends with the staff, and with each other. Semi-organized chaos, that first year or two.

Then slowly, things began to change.

First the comfort level, then the trust, began to build.  That’s when everyone started to get their own ideas about things.  They started talking to each other, instead of just to the staff and me.  They made their own plans.

Fast forward five years. It’s now September, 2015!

IMG_4048These days, what we have on ‘the Hill’ is  community.  And we have a home, and a family. It is not that different from most other people’s homes. Everyone here has a life that involves getting out into the wider community every day.. where they work, volunteer, exercise, shop and eat.  Just like most people.  They come home each day and sit around the dinner table and shoot the sh*t. They grab a bowl of ice cream, their IPad, or ‘their’ seat in front of the TV and watch movies.  Or documentaries.  Or animated funny stuff with raunchy jokes. On weekends they sleep late…. hang out with the animals… take care of their home…walk to the creek. Just like most people.

So… what’s the problem?

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yes.. this is the staff schedule in the house.

Try to imagine people showing up in your kitchen at 9 in the morning. Every. Single. Day. 9AM. When you just want to grab a glass of orange juice in your Hello Kitty pajama sweat pants and go back to bed and read a book  (hey, there is more than just one of us with Hello Kitty pajamas..) We love the staff.  Just not always at 9AM.

And how about MEETINGS??  Looking forward to coming home from work in mid-afternoon and taking a nap on the couch?  There are five people who are a part of your housemate’s ‘team’ sitting on it already. YOUR couch, not theirs.

and WEDNESDAYS!!  When our best friends come over,  and our former housemates.  and each person’s staff.  and people doing community service.  and volunteers. and everyone is trying to talk at once and the house is not big enough and people are trying to cook lunch and staff are catching up with each other and both bathrooms are OCCUPIED at the same time and no one really feels like ‘volunteering’ anymore because they just want to hang out. and EAT. No wonder it’s sometimes the day of meltdowns and hiding in bedrooms. But.. we LOVE Wednesdays too. Wednesdays are how we BECAME this community. (and we do get some sunflowers planted…. and watered…).

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Meet Ethan! He came to visit the farm with his parents this summer, and stayed to try it out for a few months. He is now well known as ‘the chicken guy’ at the market. And he is going to settle in with us for the winter, at least!

Families call regularly and ask to visit the farm. There are so many young people on the spectrum who are coming of age and want to have a life independent from their parents.  There are also so many aging parents who wonder what plans to make for their adult child. Farm life sounds good to many of them, and most people want to see it for themselves.

So we are planning better now.  Most meetings can happen at Starbucks (better coffee too), or the supports coordinator’s office, or outside on the picnic table.  (Anyplace but the couch.  Or the kitchen table!)

and visitors.. feel free to come on Wednesdays… we will feed you! and occasionally during the week we will sneak you in when it’s quiet.  Just don’t come on the weekends, that’s pajamas time.

IMG_5363We look ‘bigger’ on the internet… on this blog, our Facebook page, our YouTube and Instagram.  We look ‘bigger’ in pictures.. pictures of sunflowers, and pictures of great food, pictures of our booth at the weekly farmers market, and group photos with our animals and friends.

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5 years later, and the furniture is looking well used. This is where Andy’s heel sits.

Really… we are just a home.  Not so different from yours. It gets kind of confusing  to entertain so much of the time.

and…well…. we don’t always want to dust. That’s all.

See you on…… Wednesdays!

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Yesterday, this black swallowtail butterfly emerged from its cocoon. We have been watching it all week! It seemed like a good metaphor for this post.

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Autism Celebrations, Acceptance, and Community Living

‘There are new rules and guidelines for Home and Community Based Services being drafted that will dictate what type of living and working situations Medicaid dollars will fund for people with disabilities. There is language in the new rules and guidelines that is a threat to the farmstead model. There are disability advocates who believe that farms are by their very nature isolating and that people with disabilities living on a farm will be tantamount to living in an institution…..we at AACORN Farm disagree!’ (Catherine Pinto, founder).   And we at Juniper Hill Farms disagree as well!!

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50 candles on Pete’s birthday cake today!  Yellow cake with buttercream frosting with a banana cream pie on the side, as per Pete’s request that he made LAST week at Andy’s birthday celebration.  25 or so of Pete’s closest friends sang Happy Birthday and cheered as all 50 candles were blown out.  Presents included cans of crab, sardines and oysters as well as doggie treats for Shauna and Pete’s favorite Lemon Ginger Tea.  After cake, we pulled names out of a basket to see who our $5 Secret Santa will be for next week’s holiday party…. And then? Our bellies full of cake and homemade macaroni and cheese, we made the weekly mass exodus off of Juniper Hill for Winter Wednesdays afternoon bowling.

There have been birthdays almost every week since Jose kicked off the birthday season on September 20th… and now after the holidays in January we will have Karen, Patrick, Rebecca, John, and Aggie for 5 birthday weeks in a row.  We’re thankful that we are a community of mostly winter birthdays, or we would never get summer sunflowers planted!

lp.aspxCelebrations happen naturally here on the Hill. There is a momentum that can
not be avoided, an unspoken ‘rule’ … that HERE is where we celebrate.  Here in the loud, crowded, somewhat worn and disheveled dining/family room right off of the always chaotic Juniper Hill kitchen.  A poster on the wall quotes Emma from Emma’s Hope Book …. ‘Helpful Thoughts of Calming Kindness’… wise, poetic words reminding us all to STAY CALM. Through weekly meltdowns, drama, and anxiety… it all comes together somehow. It doesn’t exactly ‘STAY’ together… ever… but it does ‘come together’ each week,  and by the following week everyone is ready to do it again.

Four years ago … in the beginning…… the question ‘How does an adult with a disability celebrate holidays and birthdays once they are living independently in the community?‘ was not considered.  The first six months involved setting up services and support people , finances, pots and pans and furniture. Logistics.

Then all of a sudden, birthdays happened.  And holidays.

But actually … mostly nothing happened.

NOW WHAT?  This was not part of the plan! Families would call and make the effort, but it was often difficult to be available on an actual birthday.  Staff was gone on holidays and there was no guarantee that a birthday would fall on the same day as scheduled staff. And wasn’t I supposed to be ‘just the landlord’?  Who was going to make this happen? And whose responsibility was it to help the other guys acknowledge their housemate’s birthday?

Just HOW important was this, to make sure that celebrations happen for each person? It was glaringly obvious… celebrations were at the top of everyone’s list here. The idea of taking on that responsibility was overwhelming.

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How do neurotypical adults celebrate?  They call up friends, or friends call them. They’ve stayed in touch with friends from high school or college. They have gotten to know their neighbors socially, or their co-workers, or their church. They make plans.  They initiate.  They drive themselves home for Thanksgiving. There is an entire multi-generational community that sustains itself without too much effort.

But these guys, and many other independent adults with a disability… don’t.  They don’t initiate.  They don’t drive. They have rarely stayed in touch with school friends. It is difficult to pursue social relationships on their own, whether in the neighborhood or at the workplace. Their aging parents do their best to pick them up for family events and drive them back home again afterwards.  Sisters and brothers stay involved the best they can, but they are raising families of their own.

And for many many people, living independently in the community with a disability… they spend these special occasions alone.

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So why does this work here at the farm?

What we really DO have here is  a community… after 4 years of working together, 4 years of eating together, 4 years of living together or just being together for a few hours each week. That’s all it took.  Just real life…  and familiarity, true friendship and trust.

We have a community… and they want to CELEBRATE!

So we do, together.  ALL. THE. TIME.

Something else happened today, another incident that embodies the importance of the relationships that exist within the Juniper Hill community.

One of the guys kind of ruined the bowling event today, for most everyone there. It involved LOUD melting down, blaming and bullying of others.  Upon returning to the Hill, he disappeared for three hours.  Around the farm, into the woods, or up in the other house at the top of the hill…. he went somewhere (because on a farm, there is space. There is room to be alone, to have your quiet space, to reflect without interruption.  Another bonus of country life.)… The rest of us feasted on some pretty amazing leftovers for dinner, put up Christmas lights, and sang Christmas carols with YouTube videos.  Actually, I had absolutely nothing to do with the singing part, that was INITIATED (yes, they initiate now) by the others.

***(just a side note about having the word ‘bully’ in quotation marks.  This guy, this quotation marked ‘bully for an hour’ is the kindest, gentlest, most compassionate and generous guy you will ever meet.  But not during a meltdown. No one is. That’s why it is called a meltdown).

They were rocking the Christmas Spirit here… when the afternoon melt down **’bully’ returned.  And here’s how it all transpired….

No judgement.  No complaints.  No mention of the afternoon meltdown.  It was over, after all.

Instead, there was a pretty amazing welcoming reception because the leftovers that were the most coveted had been cooked by the ‘bully’ the day before.  Everyone raved about the ‘accidental chicken stew’ (he had intended to make soup!).  Then they served up leftover birthday cake, found enough space on the couches for everyone PLUS the dog… and watched three Christmas movies in a row.

It wasn’t that he hadn’t been wrong.  It wasn’t that it hadn’t been a big deal at the time it happened.  Feelings had been hurt, people had been made to feel uncomfortable.  Tomorrow, he’ll probably talk about it and think of some ways to possibly avoid it next time.

EVERYBODY here does this, or something like it.  There is such comfort in this knowledge. They all have their stuff (me too!) . We have all needed to be forgiven and accepted.  Regularly, actually. And everyone works hard every day to keep it together. Everyone is doing the best they can, and most of the time we all understand that…. three hours later.

We do community AND forgiveness, AND acceptance…. really really well here.

Dear Center for Medicaid/Medicare Services… Please don’t take this away from us, just because we live on a farm and not in what is considered a traditional ‘community’ setting.  Don’t change this life we have built here, just because most of the people here have autism and you think that we should be living closer to more non-autistic people.  This IS a community setting, and we do ‘community’ better than most anybody.

Please…

Rethink ‘Community’.

Opening Day of Winter Wednesday Bowling 3 weeks ago!

Pumpkin time at Juniper Hill Farms!

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We are having some gloriously sunny early fall days …

Check out our ‘Feeling like Fall’ video!

 

 

Springtime Firsts

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First cookout tonight. First time eating dinner outside, first deviled eggs from our chickens. First bonfire, first roasting of marshmallows, first toad eating the insects at the porch light. First bright orange tulip this morning!  The predictability of each season is always a cause for celebration here. All house and car calendars have the pages turned by noon on the first of each month, and the day’s discussions are centered around the month to come. April 1st brings t-shirts and shorts, no matter the weather.

Tonight was joyous.

Springtime, food, fire and long time friends.

Oh, and marshmallow peeps.

We learned that in an emergency situation… when there is a bonfire and no marshmallows… that marshmallow peeps will do.

 First, we feasted on Patrick’s grilled steaks, pierogies, salad, and deviled eggs…look how yellow the yolks are from our chicken’s eggs!… We still have 4 dozen eggs from them in the fridge, and John Pags actually sold 2 dozen at work today! It’s their first year laying, they must be very excited.

DSC_0278Then Patrick, man of the evening, built us an amazing bonfire from all of the downed branches from the winter storms.  We have plenty of wood for the entire spring, summer and fall weekly bonfires. This called for a celebration!

DSC_0170I donated my hidden stash of Easter season marshmallow peeps, and we just so happened to have 4 Hershey chocolate bars in the closet.  No graham crackers, we improvised.  We collected roasting sticks, and got down to business.

 

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Andy doubles up

And Ray sharpened his stick…..

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Pete tried out roasting

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Ray.. still sharpening….

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Ray’s stick is almost sharp….

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Patrick made a great one… the sugar caramelizes it so nicely….

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After he dropped the first one…

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By the time his stick was sharp enough… Ray had almost missed the peeps.. but he got one last one…

and it was perfect….

and it was perfect….

I could end the story there… but there’s a little more….

People often ask us how we deal with alcohol, etc. here.  And I can honestly say that alcohol, with this crowd, so far is never an issue.  For various reasons, the guys are either adamantly against it because of experiences in their lives, can’t have it because of medications, or they are just plain moderate about it and barely interested. I, for one, look forward to having company over for dinner, when I can have a glass of wine without my housemates lecturing me!

Tonight, no company.  But it felt like a wine kind of night.  So after the peep roasting, I broke into the Sutter Home Chardonnay cooking wine (OK really, we buy little bottles of pretty decent wine for recipes) , brought out a hidden 6 pack of Vernor’s (really amazing) ginger ale, and had one bottle of Heineken saved for a special occasion. I gave them their choice.  They chose the ginger ale.  I chose the chardonnay.

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Happy Spring Everyone!

 

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All stories and pictures of the guys shared not only with their permission, but with their constant insistence on using every possible photo of them in each and every story on this blog… 

 

Effortless Inclusion……it could be. it should be.

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Imagine this.  A place where inclusion just happens.

I imagine it can be this way in elementary school classrooms, where children have not yet learned to judge those with differences. That would be beautiful to see!

I wish it worked as well for adults.  Perhaps it does, somewhere.  I see the media spreading the stories of high schools electing prom queens with disabilities, or football players with autism being allowed to play on the team for a day…. nice stories, but I always wonder what their lives are truly like, once they leave school.

In my 30 years of being intimately involved in the lives of many adults with disabilities, in several states from one coast to the other.. rarely have I seen real inclusion while out in the community. And I really really really want to see it, and I want to believe that it is happening.

Instead what I DO see is planned efforts to bring people with disabilities into the community.  In grocery stores.  In churches.  I see them with their support workers, walking around the mall. Present in the ‘community’ with typical people, living parallel lives.

and I see ‘typical people’ make real efforts to be extra friendly to them… for a little while.  Then they turn and go on with their conversations that they were having with their typical peers.  They leave work with their typical peers, they go to happy hour.  They have brunch with their peers at their house on a weekend. They call up and say ‘hey, want to go to the Y today?’.  They tell each other their secrets.

And too often, the person with the disability leaves their ‘inclusive’ community activity … their job, their school, their mall exercise….and goes home. They go home to their house with mom and dad, or their group home, or to their apartment where they live alone. After work they go to the YMCA program for people with disabilities.  Or their support worker will come over and take them to a movie. People from work don’t stop by or call.

Sorry, for being so cynical.   I’ve just met so many lonely people over the years.

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I am tired of defining ‘inclusion’ as the process of bringing the people with disabilities into a society that often is just not that interested.  It is such oversimplification to say the a person is ‘included’ just because they have spent their day alongside a typical person outside in the community.  Parallel lives, that is not inclusion.

I have seen true inclusion.  I see it every Wednesday actually.  Here on the farm, a place where several people who have autism live.  A place that borders on ‘congregate living’, which is supposedly a bad thing.  Just like all those other farms across the country that people with disabilities call their home,  that are being so severely criticized these days for supposedly being isolating, without choice,  and not inclusive.

These people here at Juniper Hill have shown me that there is another way , without really thinking about it at all.  And I think their way is better.

And all those typical people that really haven’t thought too much about including people with disabilities into their lives…. they are REALLY missing out!

So I say… Isn’t it time they came to US?

I say ‘US’, because most days I am immersed in a community of people who are not neurotypical.  And I say…. Lucky Me! It is my community as well as theirs, because having a disability is not a ticket into the club. These folks around me who happen to have a diagnosis… they are way more welcoming and willing to REALLY include all those ‘typical ‘ people into their lives.  There is no judgement here.  In fact, these people I am surrounded by, they spend very little time wishing they were ‘included’ in the typical community.  They don’t even notice who around them has a disability and who doesn’t.

They do not define people by their disability.

Today was our Wednesday Volunteer and Stop by the Farm Day, that we have every week. The way it works is this:  if you want to come to the farm and hang out you have two choices:

You can come at 1030 and work until lunch….  you cut sunflowers, fill birdfeeders, weed, feed animals, clean barns…. mow.  Then at lunchtime, everyone stops working, we gather in the kitchen to fix our plate of delicious food that Jose and Carin have prepared, and we go outside and sit at long picnic tables with our good friends…  and we talk about the day, what went on in our lives this week, the latest HALO/Lego news, the food, and the weather.

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If you did not show up to volunteer at 1030… you can still come. But you must bring your own lunch!  You can come to hang out, because sometimes after lunch we go for a hike… or play Bingo, or just sit around and tell stories.

Here is why this is inclusion..

There were over thirty people here today.  Seven of us live here.  Ten or so people who are part of the autism/disability community showed up to volunteer… so more than half of the people here had a diagnosis….. not that anyone here notices that about each other. Several people here were the staff people for these folks.  (Now, I know officially support people ‘don’t count’ as contributing to inclusion, because they are paid to be here.  But really, it depends on the support person.  Things especially change when you work at the same place for three years.  It’s kind of insulting to think that they don’t really count, these wonderful people who have become part of the family).

And who else was here with us today?

‘Uncle’ Harold and ‘Aunt’ Peggy, in their eighties, they are neighbors on the lane for the summer and doing work around the farm

Dylan, the farm hand who makes sure the animals all get fed correctly and that the weeding gets done (OK, he’s my son…)

Rebecca, who found us last year while looking for possibilities for community service.  Now she just comes because it’s great fun and folks,  and it’s the way she prefers to spend her free time on Wednesday mornings.

Ezra, who is a contractor who is tiling the bathrooms in the top house and who has gotten to know everyone and spends every lunch time with all of us.

Ari, Ezra’s 12 year old son who comes along with her and hangs out on the farm now.

Peyton, the Eagle Scout who is building a shed here as his project.

Peyton’s brother Mike, who helped him out today.

Alison... who is a neighbor that lives in the development across the road and works with one of the Juniper Hill guys on Fridays.  It was her day off  today, and she was home with her 7 year old son.  So she called us up and invited the whole crowd over to her pool.

So the entire crowd, full of Jose’s chili (now that I read this, it sounds a bit dangerous!), loaded into cars or walked over to Alison’s… and swam and sunbathed for two hours.

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Afterwards, Alison drove a couple of the Juniper Hill guys back home. Her 7 year old son Daniel had really taken to Michael (as many young Lego heads do)…. and Michael had invited him over here to see his Lego collection.  The two of them…. Michael (who is 22 years old and lives here) and Daniel… headed up to Mike’s house at the top of the hill while Alison caught me up on the stories of the day… (I did not go swimming… I grabbed the opportunity to be alone here in a quiet house after a very energetic morning of organized chaos with 30 people).

Michael and Daniel returned 20 minutes later, and Alison and young Daniel left.  Daniel went home with one of Michael’s Lego men, just because Michael loves to give presents to people.

And then everyone took a nap til dinner.

That’s a beautiful, friendly, INCLUSIVE day on the Hill.

Check out these other farm communities across the country where folks with autism live! Go visit!   Agricultural Communities for Adults with Autism

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Juniper Hill two years later.. a reflection on what we’ve become

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Happy Anniversary to us!  Tomorrow is Ray’s 27th birthday… and it is this weekend that he moved into the green house on Juniper Hill, just two years ago.

He moved in with a blue crayfish, giant bins of LEGO/Bionicles, plus one GIANT bin which contained the cardboard /packaging of all of his LEGO/Bionicles …. because they have information on the cardboard that he wants to remember… just in case.

Jose had also just moved in,  to the cottage at the top of the hill where he  joined Brent who had been alone since his housemate of 12 years had moved out three months before. Andy had been visiting for weeks at a time during the summer, and had decided that he, too,  could leave his parent’s home after all, and move out on his own.

And so the ‘core four’ began their life together on the hill…. navigating social interactions  and the well-stocked pantry of available food. That first weekend all together, Ray asked if his best friend could visit for the weekend … and so we met Michael. He became a regular visitor, and moved in some months later while he finished out his last year at school.

October, 2010

We had a plan, my friend Mollie and I.  We would all live happily together and grow giant fields of sunflowers and other cut flowers for bouquets, and we would work the fields with help from all of our other friends who happened to have a disability.  Our flower business would thrive, and we would make flower arrangements for events, wreaths for Christmas, and hand deliver bouquets for all holidays. We would have herds of fiber animals, and after we sheared the alpacas and combed the cashmere goats and angora rabbits, we would process the fiber and spin it into luxurious skeins with our spinning wheels as we sat by the fire on cozy winter nights. And then come spring, we would travel all over the East Coast selling our wares at farmer’s markets…. and we would earn enough money for all the guys to have a decent income, plus become a non-profit and get start-up grants to get it off the ground.

Ready… set… go!

Go?

Reality check.

Live happily together?  But he’s LOUD.  He hurt my feelings. He stole my … _____ (LEGO, money, chips, favorite shirt).  He hogs the TV.  He hogs the computer.  He swears. I hate his music.

Grow giant fields of perfect flowers?  Not if the groundhogs and deer, weeds and stinkbugs have anything to say about it.

Work in the fields? In the dirt?  With bugs?  In the sun? For how long?

The toilet’s broken again…. a gallon of milk, a dozen apples, and two bags of chips just disappeared in an hour…… and there is a mystery $300 dollar overcharge on the Comcast bill.

Farmer’s  Markets all over the East Coast? You mean, like when we are not busy weeding?  Like on Saturday mornings? When we are sleeping until noon because we are tired from our busy week?

It’s midnight and the dishes are done and the kitchen is clean and the guys seem settled and getting along… guess I should write that grant now.

And weren’t we going to learn how to spin?

Sigh….

Here’s what we DO have here on Juniper Hill, after two years.

A growing community of friends who happen to have autism, or other disabilities.  A group of friends who care about each other, who trust each other, and who get together once a week to work for an hour or so, here in the fields and then hang out over a fantastic lunch made by Jose, who loves to cook and feed people.

A group of WWOOF (http://www.wwoofusa.org/index.aspx) volunteers who help out on the farm when the guys just can’t (those bugs and that dirt….)

A medium sized field of flowers, but sunflowers only, kind of weedy.

A place at the local West Grove Farmer’s Market, which runs on Thursday afternoons…. only. Close to West Grove’s ice cream shop, the library, and Chinese restaurant… for market breaks.

the market ….where we sold all of the sunflowers that the groundhogs didn’t eat. and where we show off our future with fiber (cause this coming year, the guys are really going to learn to love making things out of felted alpaca! Right?!)

One toilet fixed, one more to go.

No start-up grants or non-profit, went back to working instead.  So I now help other people with autism and other disabilities, to set-up their own independent housing in the community.  I have a regular paycheck, and it pays for fencing.

And here on the hill are a group of guys who have learned to live together, play together, share their space, their food, and the TV. They take care of the farm animals, do daily farm chores, learned to cook, have great support staff who have hung in there for the entire two years….

they have lost a ton of weight and learned what healthy eating choices are, found volunteer jobs and paying jobs… and they are happy, self-confident adults who are great ambassadors of autism when we are out on our many wonderful trips together, courtesy of AALIVE (http://www.aalive.org)

It was always supposed to be about the GUYS.  And it is.

And no, I haven’t learned how to spin.  But the WWOOF volunteers came with a spinning wheel and cozy winter evenings are coming up… who knows?

Jose’s Life Worth Living…the success story of a new kidney, and new life

Next month we celebrate six years of Jose’s new life, given to him with a kidney transplant on September 20th 2006, his 18th birthday.

You might have seen the national headlines this week, about a young man here in Pennsylvania being denied a heart transplant because of his autism… yes, it actually states ‘autism’ as a reason in the doctor’s report.

Here is the link to the story:

Autistic man denied heart transplant

We are thinking about this a lot here on Juniper Hill, and this is why.  Our wonderful friend, Jose, was given a kidney transplant six years ago, and now he has a  a rich, fulfilling life.  A life filled with friends, family, adventure, new experiences, a happy home, and so much more to look forward to, now that he has been given this second chance.

Jose also has an intellectual disability.

Jose is not on the autism spectrum, but his best friends and housemates here on the Hill, all are. And Jose would like everyone to know that his life is important and worth living, and if his autistic friends were in similar circumstances, they all would deserve a transplant as well.

Jose was not what a doctor would consider a ‘good candidate’ for a transplant, given the usual requirements. He had all of the same issues that Paul Corby has, the ones listed as reasons for denial.  Psychiatric issues, a disability, and an environment that did not appear to be able to handle the complexity of his life-long after-care. He was taking medications to help him deal with the stress of dialysis and not knowing if he would ever get a new kidney…. his immigrant family struggled financially, did not speak English, and did not understand the instructions that came with his medications.  But for some reason…. after years of dialysis at AI DuPont Childrens Hospital in Wilmington, Delaware, he received a life-saving kidney.

Jose struggled for some time after his transplant.  His home environment was not ideal for his recuperation, he gained unhealthy weight because of his medications, and he was sick quite often.

He moved to Juniper Hill in the Fall of 2010, and his first winter was filled with bouts of nausea and indigestion, migraines, and flu symptoms.  His new support workers, funded by his government disability  ‘waiver’ that paid for people to come to his home and help him with medical and daily living needs…. kept up with doctor visits while teaching him how to cook, keep house, and get along with housemates.

Jose combing Cashmere off of Johnny the goat

Today, two years later…. Jose has lost all of his extra weight, no longer takes psych meds and has reduced his medications to basically just those that help with the kidney transplant.  He is strong and healthy and ready to take on the world.  It is inspiring just to be part of his life.

Jose received the ‘Against all Odds’ self-determination award at the annual luncheon this year

He volunteers at the local community center for after school children, mostly Hispanic, at The Garage in West Grove, PA. He is active in his church community and has made many friends.  He is passionate about singing… and his life long dream is to become a Christian singer. He is talking about moving to a nearby city in the ‘not too distant’ future… and getting his own apartment because he loves the hustle and bustle of city life.

Now that he has his health back, he goes out on weekends, by himself (without  his support workers) in his old neighborhood of Kennett Square PA and knocks on doors of businesses asking for work. He wants to work with young children and especially loves to be in hospitals making children laugh.

And home on the farm? …  he takes care of the farm animals in the morning, prepares his own meals, does his laundry, is an all around responsible young adult, considerate housemate and loyal friend.  He cooks lunch for a crowd of 15 volunteers every Wednesday with his wonderful support worker Carin.  And for breakfast, he makes a mean pot of homemade oatmeal.

He makes everyone laugh, every day.

Well lived, Jose.

Autism and agricultural communities: a reason for keeping it small

So much talk this week about agricultural communities and autism… the autism blogs and listservs are buzzing about the  FRED conference that just happened in California (Farms and Ranches Enabling people with Disabilities).  There has been an overwhelming response to the conference nationwide.  It is so inspiring to see some of these long-term communities continue to grow and succeed… check out these agricultural communities of adults with autism.  Families are talking about working together with others to create their own farm for their family members.  Again and again, the talk ends up focusing on the lack of funding, the lack of support for projects like these from the very organizations that should be helping.

For those of us whose lives are affected by autism, we ‘get’ why the farmstead model is such a good option when thinking about a life of independence for many adults on the spectrum.  Tranquility.  SPACE.  Animals.  Nature.  SPACE.  The freedom to be who you are … free to hoot, jump, pace, flap, stim, and talk talk talk …. without judgement.  The freedom to CHOOSE when and how you want to interact with others.  Life on a farm does not have to be isolating, there can be many opportunities for socializing with very little effort.  But having that CHOICE to be alone when there is a need to recharge without interaction with others… that choice is priceless for many with autism.

But since the 1970’s, the movement has been towards non-congregate living for people with disabilities.  It became the accepted belief that a life mainstreamed into society was best… that the ‘least restrictive’ environment was an environment where the individual with a disability was part of a community that consisted of mainly non-disabled individuals. The pendulum had swung all the way over to that other side, and now for many years the government and other funding streams have not wanted to consider new ‘congregate’ settings (settings where non-related people live together)  as viable options for independent living.

My own personal (and very controversial) belief is that this has been extremely over-simplified… after 35 plus years working in the disability field and 15  years in housing…. I have seen many many desperately lonely people living in the ‘community’ with few friends or connections and whose families have long since let them go.  On the other hand, some of the happiest people with disabilities that I have met either live or work in fairly large congregate settings with their best friends. It really depends on the specific nature of the ‘community’ or the ‘congregate setting’, and the quality of the support people in each. It is an oversimplification to call one situation ‘good’ and the other ‘bad’.

The guys at Juniper Hill are very attached to one another, yet also very different from each other;  they share only limited interests.  And they miss each other whenever they are apart. They are also attached to the 10 or so people who come regularly to visit or help out on the farm.  They all like each other because they are wonderfully kind, interesting people, not because they are autistic.  What right do we have, as a society, to tell them that they can’t live together just because they share a diagnosis?

courtesy of Handi-crafters

At any rate, it has become evident that creating an independent living situation with as little assistance from the government as possible may be the most practical and sustainable path for the majority of families right now.  With six guys living in close proximity here on the Hill, it borders on ‘congregate living’ in some eyes, and chances are we would have to argue this point if asking for government support for the project.  Our original plan here on Juniper Hill….. to create a working farm that would provide employment and a meaningful day for a number of individuals…. has now evolved into a simple independent living situation where the people living here just  rent their home and pay most of their bills with their social security checks.  They are learning to work on a farm, and this work will at least provide them with their spending money, and hopefully more, eventually.  It is a replicable model for many families…. and that was our goal.

We haven’t done any fundraising (yet) and the farm is not a licensed facility.  However, these guys are lucky in that they do have some waiver funding that provides the support people that come in at an average of 15 hours a week for each guy. It’s not very much but it gets the shopping, laundry, cooking and cleaning done and leaves time for volunteer jobs and even some leisurely trips to the nearby University town and weekly stops at the local library. A couple of times a month, the  AALIVE organization provides some amazing fun trips. And the guy’s social circle is continually growing, with friends dropping by to help out on the farm, just because they like being here. We recently registered as a host farm with  WWOOF, an organization that links volunteers to working opportunities on farms. We see this as an excellent way to provide some of the  supports for individuals who lack funding, while at the same time providing a valuable and enriching experience for volunteers. In just two weeks, we already have a local WWOOF volunteer coming weekly, and three more scheduled for long-term stays here.

So we think that we will just stay this size…. there is still so much room for growth in other ways, and that is enough.  And we are really looking forward to sharing ideas and guiding other families through this process.  Life is Good… here on the Hill!

Entrepreneurship and Autism: goats, sunflowers and giant blankets

Cashmere Cashmere everywhere…on our clothes and in our hair…..

It’s almost time!  Yesterday, clumps of cashmere came off into our hands as we reached out for Johnny CASHmere while feeding the barn animals.  Johnny the goat has the most beautiful thick white coat of curly cashmere, and he was the first to begin shedding last year. We were unprepared for the copious amounts of billowing cashmere in the air for two weeks last spring, as we had understood that we had 6 whole months to gather the cashmere.. not so! Although cashmere goats might begin to shed in December, it is barely noticeable until it all jumps ship within a couple of short weeks in mid March. If you blink your eyes, or if it rains a lot during that time, you’ll miss it!

So we are determined to gather the cashmere this year, before it lands on the fences and branches of the trees, or in the nests of house wrens and chickadees. We have two goat stanchions now, thanks to the handiwork of Brent and Mindy….  the stanchion holds the goat still while it is groomed.  We offer them treats for standing still for us, and we’ll comb them until the cashmere is all safe inside ziplock bags.

Brent in the workshop building a goat stanchion

We have big plans for Johnny’s and the rest of the goat’s cashmere this year! We have been experimenting with felting fiber this past winter, and we are finding that the cashmere felts nicely as a first layer with a top layer of our alpaca fiber.  How does it sound to have a felted alpaca hat with an inside layer of cashmere against your temples?  We think it sounds wonderful. So along with the hats, the guys are experimenting with felted water bottle bags, felted soaps, and felted phone cases.  Add that to our 20 varieties of sunflowers, some hand-built wren bird-houses, and a variety of hot and spicy homegrown peppers, and we ‘re sure to have a fun season at local grower’s markets!

Our first attempt at a felted phone case!

Living independently with autism isn’t just about learning to cook and get along with housemates.  The employment piece is one of the most difficult to figure out.  Paying bills uses up most of the guy’s monthly social security checks, so it sure would be nice to have some spending money! Plus, it just feels good to have a job.  Unemployment among adults on the spectrum is really high.  Navigating social situations…. overcoming sensory issues … finding a job and succeeding in an interview… and convincing an employer that you are worth taking a chance on,   in spite of your differences.  It’s not easy.

No, these are not our hats. We will pick one style and give it a try!

So we decided to take the entrepreneurial approach here on the farm. Last year we grew a small field of sunflowers… 20 different varieties, about a thousand flowers.  The guys were introduced to dirt… on their hands, on their clothes… and they were introduced to sweat!… it is really humid here in Pennsylvania in the summer.  and ….  they did OK!  We cleared fields, formed raised beds, and planted  seeds in rows.  We were rewarded with a beautiful field of sunflowers, and we harvested them, cut off the leaves, put them in buckets and delivered them to friends and local businesses.

We learned that EVERYONE loves sunflowers.  Sunflowers are easy to grow.   Sunflowers are easy to harvest.  We were convinced.  This year, we’ll try succession planting so they bloom over the entire growing season, and we are tripling the size of the fields.

There are several local grower’s markets that we will approach and ask to be vendors.  The sunflowers will be our main product, but we have a good strong start on the fiber items as well. Setting up a table at a market and selling our items and meeting people is actually what the guys look forward to the most… they love to tell their stories. It’s taken a year or so for the guys to embrace this idea…. this was not the dream job for most of them.  But watching Brent and Ray, who love being outdoors, work hard and make handfuls of cash on delivery days last summer… well that was all it took!  We shall see what this year brings, but right now we are all chomping at the bit to get started.

Brent with his new blankets ready for the fair tomorrow!

Presenting at the Reinventing Quality Conference in Baltimore, with the 'Lucky Charms' blanket

We can’t end a post on entrepreneurs without talking about our most amazing entrepreneur here at Juniper Hill…. our wonderful hardworking friend, Brent. Brent has been crocheting blankets for over twenty years.  Originally, he just wanted to crochet blankets for people who would trade him for car keys, his true obsession.  But these last few years, Brent has discovered that he can actually sell his blankets for money , and it has inspired him to work harder and choose his colors more deliberately.  You can learn about Brent on his Facebook page,  Blankets by Brent.  Last year, Brent presented at the Reinventing Quality Conference in Baltimore, MD.  And tomorrow, March 3rd, Brent will be selling his blankets at the ‘Celebrate Differences Film Festival and Art Exhibit’ in Media, PA. He just crocheted six blankets in less than 3 weeks, and they are just gorgeous. He is quite excited!  Although the uncertainty of not knowing whether or not anyone will actually buy the blankets is overwhelming at times for him, he has learned, through constant reminding, that there will be another fair along soon, and more folks to buy his blankets… and a space at a Grower’s Market this spring!

Update** Brent sold every one of his blankets at the fair!  Thanks to all who came out today!!

Living Independently with Supports, part 3: Happy support people

(Want to know what happened to Part 2?  Check out the ‘Facts and Figures’ page of this blog…. You’ll find lots of specific information on getting started!)

Patrick with JR on our fall crabbing trip

Today was the monthly meeting of the Juniper Hill gang… all of those people that hang out here on a regular basis…  the guys plus their support people.  Ed came early to bake chocolate chip cookies with Andy, it looks like it is a new tradition for meetings except they are going to have to double the recipe, at least!

Ed and Andy in the kitchen... it's potato soup night!

JR and Patrick brought in wood, Brent and Mindy built a fire. Liz and Ray planned tonight’s dinner while waiting for everyone to get their tea, coffee, and glasses of milk (to go with the cookies, of course!).  We talked about time sheets, dinner schedules,  and this blog… the guys are anxious to get their own page here, to tell their story and decorate it with pictures that they like (HALO and LEGO,  Eagles, Phillies and Flyers, dogs and insects, their favorite music) with the help of their support people.

Liz and Ray (and Adam the Cashmere goat) working on the pasture fence

Support people, they are the reason this whole project is working.  Everyone here is excited.  The room buzzed with conversation as we all planned the farm season coming up this spring.  Ezra and Brent made the first alpaca felt purses and cell phone holders this week, and now we can’t stop thinking about market days coming up! Patrick and JR want to learn to make wooden frames for Ray’s scientific illustrations he is working on,  and they’ll be planting hot peppers to sell… Noel and Jose planned a thank-you box of goodies from the Dollar Store, for volunteers that will come to help out at the farm.

Support people, the backbone of any independent living situation for individuals like the guys here at Juniper Hill.  ‘It takes a village’… and we have one, here on the Hill.  How? Why? We talk about it every meeting, because that is what we need to figure out.  We need to be able to tell other families:  ‘do this, and you will have support people who care, who love coming to spend time with the person they are paid to help, who take initiative, will figure out what is needed and then do it.  Do this, and you’ll have people who will stick it out even when the person they support has a really really difficult day  ‘

Jose, with support person Carin, tries to beat Brent at UNO. Probably won't happen.

Happy support people means happy guys…Here is a list of things we have come up with…..that help keep support people inspired

1. A salary of $15 an hour or more….the guy’s families here work hard to make it happen… and  the support workers can depend on the hours that they are promised.  It’s the bottom line, people have to support themselves. There is nothing more important than this one, no matter how much we talk about other perks of the job.

2.  There is a house/farm schedule to work with, and a weekly plan is laid out.  The guys have agreed to cook once a week for each other, so the support people are becoming cooks as well (it often doesn’t start out this way). The guys want to be paid for doing work around the farm and they need assistance, so the support people have a list of chores to work from. Laundry and cleaning have to be done weekly. Things just have to be done when living on your own. For support people, it’s good to be busy.

3. Several of the guys have made a commitment to volunteer activities in the community that they enjoy, and the support people have to make sure it happens.. and it’s fun!

4. The houses feel like home.  They are comfortable and welcoming. There’s music going, Kit the chihuahua is running around looking for attention, Alice the cat has sneaked inside, it smells like beef stew or chocolate chip cookies.

5. The guys are friends and care about each other.  They like being together and doing chores together. Long ago, our support people learned to care about the guys they were working with, and now they care about the other guys too.  It’s definitely a team effort, and that feels good.

6.  Extra credit: We have really cool animals,  and we grow sunflowers.  Hard to beat that! We are starting a new life all together,  working on creating something meaningful ….and there is much to look forward to!

(This is an added bonus here… we are not saying that you have to have adorable potbellied pigs for your support people to be happy… but it helps!)

And that’s about it.

But where did these people come from?  How do you find them?

Once you have registered with your appropriate Human Services agency (see the Facts and Figures page of this blog for step by step instructions), you will meet with a supports coordinator who will (hopefully) explain clearly your options and the services available. If you are lucky enough to be awarded waiver funding,  you will have a list of provider agencies to pick from. Interview a few!  Make sure that you ask what their salary range is for the various services… especially community integration, personal assistance, and home and community habilitation.  If they pay their employees $9.oo an hour, you are going to have difficulty getting (and keeping) good support people.   Ask your supports coordinator about FISCAL AGENTS, and if they have them in your state.  They are available for some waivers and services in Pennsylvania.

Mindy is teaching Brent how to loom hats, hopefully he will eventually have them as a market item along with his blankets!

The people who work here are from five different agencies. The guys and their families, with the help of their supports coordinators, hired them.  Each guy acts as an individual, and there is no interaction among the different agencies that provide support here. Two of the guys here have traditional ‘provider agencies’ who send support people when they are needed, and the guys work with them to see if they are a good ‘fit’.  In those cases, a few people have come and gone over the past year for one reason or another.

For the other guys here, they are hired by the families themselves, through a fiscal agent …. check out the two that we use here in Chester County PA, it can be a valuable option for some families:

Agency with Choice    http://www.arcofchestercounty.org/awc.html   

Acumen   https://www.acumenfiscalagent.com/index.aspx.     

I’ll go into detail about fiscal agents on another post, it’s important to educate yourself on this one!   Here is link to a comprehensive report explaining how it works: http://www.cmu.cc/docs/pa-guide-to-pds.pdf  (it is a 2008 publication, so some info might be outdated).  Basically, you (or a family member) can become the managing employer of your own supports and hire who you want.  The fiscal agent is the intermediary that actually sends the paycheck.    For the guys here that use them, the support people were found by word-of-mouth, either by the guy’s families or by the people working here already. When you find dependable, responsible people with a good work ethic…. a fiscal agent is a great way to go.

Fiscal agents work really well in a place like Juniper Hill,  a group situation where flexibility is always needed.  Three of the guys use the same fiscal agent, so the support workers (who are all employees of Agency with Choice)  can help out the other guys if needed.  They don’t double up, but they can fill in for that other support person if they are not working with another guy at that time.  It benefits both parties!

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Johnny, our farmer neighbor, keeps us supplied with hay and wood

The meeting went on for more than an hour, and we devoured the chocolate chip cookies, a pot of coffee and almost a quart of milk….and then a knock came on the front door.  Johnny, the wonderful neighbor and farmer next door, had a giant bale of hay for us and needed help getting it into the barn. Everyone scattered immediately… Mindy and Brent got grain to distract the goats, JR directed the tractor through the yard, Jose held the gate open for Johnny, and Patrick herded in the escaped piglets…

Great ending to a meeting!  

Springtime in February walk on the Hill, Feb 1 2012... Andy, Mindy, Noel (who also works with our friend Chelsea and they come for visits), and JR