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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13 responses to “From housing model to home: five years later.

  1. I am up. Tossing and turning. A million things in my head and this pops up. I love it. And do we need to end our Wednesday’s?? Xxooo Sent from Xfinity Connect Mobile App

  2. Never end our Wednesdays! We miss Steph and Michele when they are not here. I accidentally pressed ‘Publish’ on the rough draft aaarrrgh! So it got sent out to everyone… I am ALWAYS worried about doing that! The final here is much more polite!

  3. Your model, your home….this wonderful life which you have helped these guys create is my inspiration….and what I am trying to replicate here in Mississippi for Mit.

    One bright spot of Jerry’s declaration that our 23 year marriage is over and is moving out is that I can now begin the process of converting “our” family home into Mit’s permanent home with others.

    Thank you for showing that it can be done……and lighting the path for those of us who follow in your footsteps.

    Love from Mississippi

  4. Brita Darany von Regensburg

    Hi, My name is Brita Darany von Regensburg and my husband is Tibor. We re from Greenwich, CT. I am sure we met at Bittersweet Farms ACAA Summit 2 or 3 years ago . Can you refresh my memory where you are located and what your name is?

    Even though I was ready to go to sleep I could not stop reading your newsletter. Your work – what you have achieved is commendable. and wonderful. Have you seen others create similar places after visiting you and can you tell us where? Is one in or near Connecticut?

    Also when do you receive visitors?

    Here are a few more questions: How many people live in the two houses? Are there state regulations that you hae to adhere to? Who takes care of the daily routine of tending the animals? The vegetable/flower beds?

    Is the person who does RPM communication nonverbal?

    Are you part of the PA State System or how do you pay for staff , food, maintenance, rent? Who maintains the houses ?

    You may remember I and my husband are from CT and are planning a farm. It will be fro people with classic autism and for those with milder autism to come in for their transitioning programs at the end of their school years, to work or volunteer.

    We are still at the fundraising stage but have started a Music Therapy Clinic/ Service, one of the Therapy programs that will be offered on the farm once it exists.

    I would appreciate a response. Best regards,

    Brita

    Brita Darany von Regensburg President FAP-Friends of Autistic People 203 661 8510 fap.autismct@gmail.com http://www.autisticadults.net our VIDEO http://autisticadults.com/page.php?category=farm&key=about-the-farm

    *Please Share:* https://smile.amazon.com/ch/06-1519336 and ask your friends to bookmark this link so all their eligible shopping will benefit Friends of Autistic People’s work.

    *Don’t forget – you can * *DONATE YOUR OLD CAR to FAP,* *ANY vehicle : your **Boat, tractor,** motor bike …* tax deductible CALL TOLL FREE mention* e. 1476 * *1-877-227-7487 ext* 1476

    • Hi Brita!
      Yes, I was also at Bittersweet a few years ago and we met. We are in southeastern Pennsylvania and my name is Diane Belnavis. I have worked in ‘housing’ for over 15 years, and I have seen many people begin and maintain a successful life in the community away from their parents. As far as I know, no one has set up a farm like this however. Hopefully you are a member of Coalition for Community Choice, where several groups are working on projects like yours!?
      And please let me know if you want to come down for a visit and we will set something up! The next month or two should be a good time, before we settle in for winter and get less social.

      Juniper Hill is much much smaller than yours or any of the other projects that are in the works. I kept it very simple so that more families might feel it was a possibility for them. There are two houses, five guys. The houses are on the same lane but not on the same property. That keeps it simple so that it was not an issue with the county, it is not a group home and it is not licensed.

      I own the houses and the guys just rent from me. That is the extent of my financial involvement. It is similar to sending your kid off to college and helping them find a place to rent with friends. I’m the landlord so I maintain the houses as far as things to fix. The guys pay rent with their social security checks, and they each receive food stamps of $200 a month. They all have government funded ‘waivers ‘ that pay for their staff, transportation, therapy, day program if they had one, etc. I help organize staff and am part of each guy’s ‘team’ but that’s all.

      Everyone helps with the animals. As for the sunflowers… the guys have other interests now so I do much of it, and this year we had a live in volunteer who is a great help. Fortunately, growing things is my passion and I absolutely love sunflowers, so that’s fine. We have some volunteers, and the group on Wednesdays help out some. Mostly the guys just want to be the ones to SELL the flowers at market!

      We have no official ‘programs’ going on, and our social group is informal with no real rules. If someone wants to work on a craft (with the fiber, or the flowers, or growing veggies etc) then they get help from their staff.

      Although our farm looks very different from the larger projects, many things will be the same.

      ~ I really believe that if you want a home, the guys need to spend time together, cook together, eat together, etc etc so that trust builds and they become friends. They don’t need to have much in common for this! But they will need help navigating conversations.

      ~Also, it is really important to have cooperative responsible caring staff who understand what’s important. This is the most important piece, no matter how large or small the project is! The staff.

      ~and there needs to be someone who organizes the staff so that they are loosely working as a team to keep the household together. That is my role here, but there needs to be some kind of official ‘position’ for this in these living situations because it is very necessary.

      ~house meetings are all absolutely necessary but difficult with scheduling…

      it is all about relationships!

      In order for us to make it with no fundraising or extra money, we had to give up on perfection. The houses are simple, nothing fancy. We work together to keep the house fairly clean, but it never looks spotless, far from it. The up top house with three of the guys is like a bachelor pad because there is no one living with them. The staff should help the guys keep their own spaces clean, but it rarely works well, for many reasons. The lawn is mowed by one of the guys who leaves big patches of grass and doesn’t get the borders unless he has reminders, which often he doesn’t. The guys are really rough on doors, handles, anything that moves. So things break a lot and sometimes we wait a long time before it gets fixed either because I am busy or because I wait to see if they are going to just break it again. The parents help out. The furniture is worn, and the house needs painting again after five years, and that will slowly happen this year. In the meantime, it won’t look great!

      For a project like this, with no extra money coming in… this is very important to be OK with things being less than perfect. Juniper Hill will never look like these other projects! But we all have the same goal of wanting it to FEEL a certain way, with or without perfectly manicured lawns. That’s where the ‘relationships’ come in.

      as for RPM… right now to me, there is nothing more important. My family member, Brent, is the one learning RPM, he is classic autism, speaks somewhat but unreliably. RPM is changing his life and it is where my focus is now. Once you see how it works, you will never ‘unsee’ it again. I put on a workshop in May and brought our favorite RPM provider here to the area, Lenae Crandall. We are now working to do three more next year in this area. I believe that the non-verbal adult folks can live semi-independently with supports possibly easier than many of their highly verbal autistic brothers and sisters who often have more anxiety and self esteem social issues. So much to talk about here. (Brent, by the way , is the most capable guy here at 46 years old, but is also the one that mows in patches!)

      Come on down and visit and we can keep talking!
      Diane

  5. Hi. This is Maureen McCarry. I have been to the meetings at Handicrafters and you had invited Kevin out for a visit but because of his schedule we never followed up. I was wondering if you have certain days for visitors. I think Kevin might enjoy Meeting the guys and seeing the farm Life. Kevin is 31 he is diagnosed with Autism He is high functioning. Thank you Maureen McCarry 6103241718

    Sent from my iPhone

    >

    • Hi Maureen! Yes, you really should bring Kevin by the farm… can you come on a Wednesday? Let’s try to set a date!

      • So grateful that I got to share the first year and had the opportunity to visit this summer to see how the guys have grown individually and as a a family. Ridiculously, over the moon grateful that I get to be part of the family from 2000 miles away!

  6. A wonderful blog! Congratulations! 5 years … goes so quickly. You’re making it possible for others to learn — and the next time it shouldn’t be so difficult (although it will be different!) Really, congratulations to everyone for building a home and community.

    • Thanks Susan! But you are the one that started me on this road with a model that I could follow! So congratulations right back to you.. I need to write a blog on Homeworks soon too… how many years, 8 or 9?

  7. Hi Susan Tachau,
    you and Diane were my inspiration to “keep on keeping on” to find a home for one of my severely handicapped young friends in the Norristown Pa area!

    With the help of Rachel Mann, the Firelys from Firely Pediatric, bought a home to ” rent” to severely physically handicapped young adults! Priscilla was their first gal to live in Richie’s Place. Since then they bought and established two other homes.

    I believe there are 8 or 9 young adults on waivers now in the three houses! I thought I’d share a little about this project on this blog because there is hope for Physically handicapped Young adults to live relatively independently outside a nursing home! As i and friends visit Priscilla, we find joy at Richie’s Place, name of the first house. Two young women with very different needs live there being helped by committed aides and nursing staff! They get to go to places of their choice…movies, pet shops, Malls etc etc…and do what young people like to do. There was some talk about volunteering!

    Parents and friends of so many young men and women who
    “aged-out” of the child welfare system have very few living choices. They do not want their young people in very restrictive nursing homes. Many of these young people have elderly parents or no parents! Being an adult and thus find a home becomes even more complicated for all special needs folks, it is extra challenging for young adults with severe physical handicaps !

    They can qualify for an independent waiver, but they need a community member to open and retrofit a place to make such a place fully handicapped accessible. Additionally they need a person to manage their nursing staffing or regular attendants needs. Managing needs are not paid for by the independent waiver! these very dear young adults need committed providers and friends in addition to finding people who will open their house/farm and make it more than a rental…it must be a home!! THe Firelys and their staff and friends have quietly have done that FOR TWO YEARS, thanks to all! Irm Schoellkopf

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