We are having some gloriously sunny early fall days …
Check out our ‘Feeling like Fall’ video!
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
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.
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! 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.
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.
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.
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 bigger’ 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.
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.
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!
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?
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.
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?
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.
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!
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.
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.
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!!
(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!)
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!
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.
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 ‘
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.
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
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!
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!