Tag Archives: spectrum

Standing in the way of independence: it isn’t really the money.

funding‘Our son can’t live on his own, he doesn’t have government money for supports’  Our daughter doesn’t get enough in Social Security to be independent’ ‘They’ve cut funding for disabilities’ again, we are on the waiting list, our son is still living at home’  Funding. Funding. Funding.

The autism blogs and parent listservs are filled with information about transition and adulthood and the financial burdens that will come along with the desire to live an independent life.  In this economic climate, government funding is not prepared to support the overwhelming numbers of autistic young people coming of age. The unemployment of people with autism is higher than any other disability. So how will all of these young adults, these inbetweeners’ who could learn to live independently with some supports….ever be able to afford to live on their own, out of their parent’s house?

house_keysIt is a legitimate concern of course, and money will be tight.  But given a certain set of circumstances, it is not impossible to make ends meet.  Supplemental Security Income, or SSI, is almost $700/month and many people with autism will qualify for it. Sharing your home with someone will help to lower your rent. You qualify for SNAP, or food stamps…. around $200 a month if most of your income is from your SSI.  Sometimes your county will step up and award some limited dollars to pay for supports to come in and help a few hours a week. There are jobs out there… maybe not very many that will entirely support an independent life, but jobs that pay enough for some spending money after most of your SSI goes towards bills.

I really don’t think that money and funding are the main impediments to independent housing. They’re just the first consideration……. and just the tip of the iceberg.

What I really wanted to talk about here are all those other things…..

Here is my own personal ‘Top Ten (plus nine)’ list of impediments, after 14 years of helping people with disabilities live on their own.

Thunderstorm

Thunderstorms 

Support People who don’t show up

Transportation

Lost Mail

Support People who watch TV, text and read their email and are basically glorified babysitters

Not knowing what to do with leisure time

Junk Food

Too Much Food

Video Games

Support people who take you to the mall but don’t notice that there is no food in the house, a week’s worth of dirty dishes in the sink, and a negative balance in your checking account.

Landlords who don’t fix things

Your relationship with your housemate

Your Parent’s relationship with your Housemate’s parents

Medication..remembering to take them… refusing to take them… or improperly prescribed.

Broken Toilets, Clogged Drains, Lost Keys, Broken Dishwashers, Broken Washing Machines and Dryers

Porn. and mystery charges on the Comcast bill. Hundreds of dollars worth before you thought to put a PIN number in.

Self Control.. (with food and video games and porn)

Loneliness

Thunderstorms, really.

Take thunderstorms.  Alone in a house, your house.  Lightening and thunder happening seconds apart.. that means it’s close.  The power is out and you don’t know when it will come back on. What if it NEVER comes back on?

Or unopened mail.  or confusing mail.  or misplaced mail.  When you are living with supports such as SSI or food stamps, or prescriptions, or an ISP… you get lots of mail and it requires lots of RESPONSES in a timely manner or you will lose those benefits.

560.twinkies.cm.111612

Food.  Eating too much of it.  Eating junk food… only.  It’s all just right there in front of you in the grocery store… and you have $100 in food stamps on your card.

~~~~~~~~~~~~~~~~~

Support People. Relationships. Medication.  and Porn.  These all deserve their very own blog post….   Better save these for next time.

and with all of these things to worry about, do I really believe this can be done?

ABSOLUTELY!

Waiting for Hurricane Sandy

Waiting for Hurricane Sandy

Fear and the fragile friendship

New York ComicCon 2012

Michael called tonight… thankfully at a very reasonable 730 PM, not midnight.  He touched base with Ray, as he does almost every day (too often at midnight).  They share the day’s HALO/Bionicle news, the latest on the Disney Star Wars’ purchase, and the plan for the next get-together, as distant as it might be.

On the Farm

Michael and Ray have been friends for four years.  They met by chance at the Goshen Country Fair, where Michael and his family volunteer each year.  At the time, Ray was living independently in the same town. They struck up a conversation, found they had many interests in common, were able to plan and get together on Friday nights for the next two years…and the rest is history. Michael lived here at the Hill for a year while he was finishing up his transition program in high school, and now lives back home with his family about 40 minutes away though he makes it down to the farm on weekends regularly for HALO marathons….

These two best friends share their interests, their possessions, often their money, and their secrets… and they happen to also share an autism diagnosis. They help each other through their sensitivities, annoying habits and meltdowns, and almost always remain true to the other, no matter how disruptive they become.  They have two very very different dispositions, yet it works….  They are a couple of lucky guys, and they know it.  Many folks, with or without a diagnosis, could benefit from their recipe for true friendship.

What is this recipe exactly?  Patience, trust, familiarity, tolerance, compatibility, convenience…. and TIME……all of the qualities that one would guess….. plus a healthy dose of luck and  ‘perfect timing’ no doubt.

Now if only we could replicate this recipe again and again.

Too often, what I see with folks on the spectrum and other disabilities is a desire for friendship, but an overwhelming fear of intimacy, change, and sensory overload. Confusion about what friendship is, and what expectations are involved. An ambivalence about leaving that comfort zone where one can immerse themselves in special interests without interruption…. and a need to be alone to control all input. Sometimes it can be just a simple preference for convenience over company.  The fear of disappointing, and disappointment. The fear of the unknown. The fear of vulnerability.

FEAR.  That’s a big one.

Things don’t always go as smoothly as Ray and Michael, when forming a new friendship.  And this week, I have a new respect and appreciation for the bond that they share, because I tried to help a couple of other guys get started with a new friendship.

Check out this wonderful movie about a friendship like this…
http://www.youtube.com/movie?v=tDJZO-QUS2A&feature=mv_sr

Several months ago, nurturing these types of friendships became my livelihood, when I went back to helping others …. young folks just like Ray and Michael and the Juniper Hill guys….  set up independent living in the community.  It’s not so difficult to find a place for people to rent, or to make sure they have the supports needed (help with cooking, cleaning, budgeting)….. or even to find two or three people who want to live in the same place at the same time. Sounds complicated?  It’s the easy part.

After the furniture is moved in and the kitchen is stocked, real life begins and new housemates unfamiliar with each other have to spend lots of time together. It’s not so difficult, when the support people are there too.  Helping with decisions about what to eat for dinner, where to move the couch, what to watch on TV.  Helping with facilitating conversation, especially. But then the support people leave, and the chores are done, and no one is reminding anyone of what ‘s next.

It’s scary, but it’s fun.   It’s confusing….but it’s exciting.  Its empowering, but at the same time old insecurities surface.  It’s evolving, and it takes time… lots of time… for trust to develop.

And sometimes before that trust develops,… the whole thing just blows up. And then you have to help them pick up the pieces, and figure out how to help them move on. And that has been my life these past two weeks.

Ray and Michael, you sure made this look easy.  Keep taking care of each other, you are truly lucky.

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

Shelly, the crayfish

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?

Autism and the extraordinary power of peers

Andy’s Chicken Cordon Bleu

Motivation…. it started out as competition, before they cared.

Brent cooked independently …. and got lots of attention from visitors for it.  The other guys started cooking.

Ray brought home a paycheck and bought himself his own junk food and CD’s.  The other guys requested that their support workers take them job hunting.

Jose made a conscious effort to change his eating habits and lost a ton of weight…. everyone who knew him before showered him with compliments.  The guys started dropping waist sizes and talking about food choices at dinner .

Andy volunteers at the library and checks out books that he reads each night  after dinner.  The others wanted their own pile of library books.

Before they really cared about each other, they just wanted what the others had. Their motivation began as a competition… for attention, for money, for books. It got them off the couch temporarily, but that type of motivation just doesn’t go very deep.  The anxiety, anger, melt-downs, sensitivities, intolerance, mistrust… still front and center.  They just had more books.

Ray is working on his art and is showing it off at market this week

Almost two years ago…the guys started out as a group of pudgy overweight, unmotivated, anxiety-ridden gang of couch potatoes.  Except Brent… older than the others by at least 10 years….healthy, fit, and motivated to work from sun-up to sundown, had hobbies and filled his leisure time…  He has lived here on the farm for 18 years.

Brent has most of the same difficulties as the others …. anxiety and melt-downs, sensitivities and intolerance.  But he doesn’t have the mistrust that the others have, and his behaviors are rarely directed towards the guys.   He really likes his housemates, and he was the first to show that he cared, no matter how much the other guys were acting out.

Brent is also quiet…. he sits at dinner listening, rarely contributing to conversation.  Everyone else battles to get a word in. And every other guy has SOMETHING about him that annoys the others. But Brent?… there appears to be nothing about him that is annoying to the other guys.  So Brent became the one that everyone bonded with first.  Coming to his defense when it seemed like he might need it, always watching out for him and making sure he got his share…..they TRUSTED him.

But they also respected him.

They see how hard he works, without complaining … ever.  They can see that he doesn’t need to be begged, prodded or lectured to about adult responsibilities in a household.  They see that when the arguments are about whose dishes are in the sink and who should load them, he just gets up and does it.  And they see that he earns  a decent amount of money each week because of the extra work he does.

They also see that he keeps most of his personal ‘stim-stuff’ to himself when he is out in the community.  No one forces that issue. He wants certain things from those he comes in contact with… so he makes an effort to understand the people he meets and has learned to express his needs in a way that can be understood.  His desires are rarely ‘typical’…..they usually involve checking out the heating systems in people’s houses, or asking questions about their car keys.  But he has learned to do it in a way that endears himself to almost everyone he meets.. EVERYONE loves Brent.

Brent has been selling blankets every week at the farmer’s market

His maturity and work ethic shine in everything Brent does.  He makes the other guys want to better themselves.

There is a turning point in young adulthood, with or without a disability.  A point at which your motivation changes from doing something because someone older expects you to, to acting on something just because it’s the right thing to do.

A few weeks ago, Jose started getting up in the morning on his own, giving himself an hour before his staff showed up. He started making his own coffee, and real homemade oatmeal from scratch (with frozen strawberries blended in yummm), the way he has been taught over the past year.  and when he is finished now…. he loads his dishes and checks to see if the dishwasher needs to be run, and TURNS IT ON if it needs it.

He turns on the dishwasher now, just because it needs to be run. Seems like a small thing, right?

It’s not.

Jose cooks lunch for all of the volunteers every Wednesday

Jose’s Birthday September 2010

Who’s in Charge?

It seems like a simple question.  When a group of young adult guys with autism are living independently but require additional daily supports ……  who is in charge?   

It definitely is not such a simple question.

Everyone involved has a say, but who makes the final decisions?  The parents.  The support staff.  The support staff’s agency.  The bossy big sister roommate (that would be me).  The landlord (uh, that’s me too). Society. The guys?

Everyone wants to be in charge of his/her own life.  Everyone has that right. OK great.  Let’s say we try that.

Let’s stay up until 430AM playing this video game and then sleep all day.  Oh wait, it’s 9AM and my support person is here.  I don’t feel like doing anything, could you just go home?  What, you depend on the money, this is your job?  Yeah but I’m YOUR BOSS and I say go home.

You want to help me find a job?  I don’t want a job. I get enough money from social security and food stamps to pay rent and eat.

No, I haven’t showered.  No, I haven’t done the dishes.  No, I haven’t cleaned the bathroom.  Yes, I guess the garbage is overflowing.

no… this is not a real picture from the house

I don’t feel like cleaning up, you are my staff so please take me to the mall.

I’ll  just eat ramen, chicken flavored only.  And popcorn.  And drink Dr Pepper.  Yeah, I gained 75 pounds this year.

I feel terrible.  I’m going back to bed.

Hmmm… this definitely is not going to fly with the parents.  Be back home with Mom in no time.

OK …let’s try the parents.  ‘You have to go to bed by ten, are you brushing your teeth? wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night, and here, use this new quilt on your bed it matches the furniture better.’  ‘Oh, and I am calling your support staff to tell them that they have to teach you to cook  chicken cordon bleu.’

…What ABOUT the support staff? (or the ‘bossy big sister’ housemate?)… ‘You have to go to bed by ten,  brush your teeth, wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night,  and you have to learn to cook  chicken cordon bleu.’

ugh,  you  sound just like my mother….

Wait, I thought I was going to live independently?

Maybe it should go something like this……

‘My parents spent a lot of time and money helping me to get set up in my own home, I should make an effort to be responsible and considerate.  I’ll put some time in every day to learn how to take care of my home, but then I’d like my support person to take me to the mall. I hired my support staff, so it is my responsibility to be available (and awake) during the hours they are scheduled.  But on Friday  nights, I am going to stay up most of the night playing video games, and I just might sleep all day on Saturdays.’

‘I hate taking showers because I don’t like to be wet. But nobody wants to be near me when I stink ,and I do want friends.  I live in a house with other people, it’s not fair to make them put up with a smelly house.  But I refuse to shower every day, three times a week is enough’.

‘I am NOT making my bed, I’m keeping the old sweatshirt, and I am having dessert every night … but only after I eat a real dinner, because I do feel better when I eat real food. Sometimes I am going to eat dessert first. And there is no way I am using that ugly quilt from my mother’.

It’s all about compromise.  And when the rewards are an independent life and new friends, it feels worth it in a very short time (give it a year, that’s not so long).

Mom, however, may never get over the quilt thing.

As for the landlord, she gets to insist that the garbage gets removed. She cannot tell you what time to go to bed.

this isn’t a real photo from the house either. We only have one trash can… but sometimes, that one trash can looks like this

And society? the rules say that you have to drive on the right side of the road in the U.S., and you cannot walk down the street in your underwear.  You don’t get to change that just because you have autism.

and these are the things that we talk about during dinnertime around here….

Just for the record…..  It took a year or so, but here at Juniper Hill we are resigned to the fact that we just can’t stay up all night and still function with our staff the next day, so we make an effort to get some sleep.  We like the attention we get now that we’ve lost some weight because of a better diet.  And we’ll shower a few times a week just so the ‘bossy big sister’ will let us in her van to go grocery shopping.

‘More Rules than Jesus’ (today’s Juniper Hills quote of the day)  …Last night we were talking about the new ‘house rule’ that the TV, computer and video games have to be off during the week when it is before 2PM, (which is the time when the support staff all leave), to be considerate of others who are working around the house.  So Jose, one of our devout Christians, says…’ I wish I lived with Jesus, he doesn’t have so many rules’.

Hmmmmm…Not sure if the Pope would agree!

and guess what?  it was ANDY’s idea to learn how to make chicken cordon bleu (‘you know’, he says, ‘that chicken with the cheese and ham rolled up inside’) and he picked up the phone and called his mom for the recipe. IT WAS AWESOME.

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!!

Social Group.. Support Group… awww let’s just hang out

Jose and his other girl, Kit

No plan, no formal discussion, no agenda… just food…seems to be a fairly successful recipe for a get-together so far.  We had our third ‘hang-out’ day today at Juniper Hill, and it felt like a great day.  Seven or so very local folks on the spectrum, along with a parent.. stopped by for the afternoon, and it’s feeling more and more comfortable each time. The front half of the house now becomes the HALO/Lego area … with the pool table completely covered with figures, and surrounded by guys discussing the latest releases.  Others in the room sit on comfortable couches talking …… not everyone finds HALO fascinating!

Outside, some folks take walks to visit with the goats, the rabbits, the pot-bellied pigs, or to get more SPACE

In the dining room, the parents gather at the table and talk about navigating the ‘system’ after age 21 and finding support. Young people come in and out as they need to, when the Lego room starts to buzz with too much conversation… or when they just need to touch base with a parent…. or to sit by the fire with a book for awhile.

and in the kitchen… the island is filled with home made mac and cheese, fruit salads, biscuits, veggies and dip, homemade chocolate chip cookies… and more.  Everyone  forages for food when they feel like it, there is not a set ‘meal time’.

and it just works

We didn’t plan to not have a plan… it is just evolving this way.  Each month we say ‘let’s sit and talk about what we want from this group’ and ‘let’s go around and introduce ourselves and find out what other’s interests are’… and it never happens.  People show up and go about their business, and each time the young people spend more time together, away from the dining room and their parents.

So, it feels like it’s working… and relationships are happening without any extra forced effort on our part… so why mess with it?  This is what we hoped for… so

let’s just hang out

Afterwards, when everyone had left and the Juniper Hill guys had scattered to the far corners of the Hill to recharge after a very social day… I sat down to relax and read my email and had a good laugh at this new post by  Dude I’m an Aspie, with his version of a ‘support group’… click on the yellow link below, and check it out!

Dude I’m an Aspie

Recharging

Cooking and autism: If you want to build a ship…..

‘If you want to build a ship, don’t drum up the men to gather wood, divide the work and give orders. Instead, teach them to yearn for the vast and endless sea’ Antoine de Saint-Exupery (author of The Little Prince).  

There are often a lot of sensory issues that come with a diagnosis of autism.  Here on Juniper Hill, we have sensitivities to loud noises, sensitivities to the texture of food, sensitivities to voice pitch, sensitivities to materials from which clothes are made.  Sensitivities to certain words…WAIT, MAYBE, I DON’T KNOW….. to car engines revving, to water touching skin, to meat with bones, to high pitched voices and to total silence. To bright lights, to strong smells, to other people’s dirty dishes. Oregano.  Salt.  Pepper. ONIONS! The size of the pieces of food matters, and how soft, how crunchy, how sweet, how tart.  How hot.  How cold.

When the guys first moved in, they didn’t care if we ate meals together, and they didn’t care to experiment with unfamiliar foods.  They just wanted to eat what was safe and get it over with. The support people did most of the cooking while the guys pitched in when they could stand it. Mealtimes involved a well-balanced array of foods that sat on the table while the guys made their ramen, opened their cold cans of spaghetti-os, and poured frosted flakes. As the NT (neurotypical) housemate, I held in my ‘Jewish mother’  type tendencies and didn’t force the issue. Well, maybe just a little bit!  ‘Here, you like pasta, this is the same as those spaghetti-o’s, why don’t you try it?’  ‘Here, this chicken has no bones, no spices, no sauce… sure, go ahead and put ranch dressing on it, that’s fine.’

And then, 10 minutes after dinner the guys would come back into the kitchen and make popcorn. Then again an hour later.

As time went on, mealtimes became more popular.  It was the time to get-together and talk about the day and share stories.  We started making fancy-but -not-scary desserts.  There was so little junk food in the house anymore, because the bulk of the food money went towards meals and some healthier snacks, and the leftover spending money that the guys kept was now spent on other things.  Given their choice, it evolved from a giant bottle of blue soda and Doritos to a new HALO figure, Starbucks, or a music CD.  The spaghetti-o’s and ramen were still included in the weekly shopping, but often they were eaten in the first two days.  Without the constant supply of Doritos, the guys were hungrier and more open to eating what was cooked already.

Patrick's first lasagna

Then…. we got a weekly meal schedule, the guys made the request.  Brent had been cooking on his own for years, and he started independently making meals for everyone.  It all started with ‘Pierogie casserole’.  He read a recipe for it off of the Pierogie package, and the guys went wild for it.  Pierogies, tomato sauce, pepperoni and mozzarella cheese….. devoured in minutes. Brent got lots of attention for his creation, and all of a sudden the guys wanted to make a meal to share too.

Everyone signed up for a day of the week. The support people jumped right in and started researching recipes off the internet.  Lots of cheese, lots of pasta.  Variations of rice or pasta, chicken breast, cheese, cans of cream of mushroom or celery soup… and maybe (hopefully!) a vegetable. There was salad available every night, and with Ranch dressing, it began to taste OK. A few times,  we would make brave attempts to eat Ray’s concoctions that involved something scary from the ocean (eel, squid, mussels).  But eventually, Ray settled into shrimp dishes to satisfy his seafood cravings, and that was fine with everyone.

These days, the monthly menu looks creative and tasty.  Jose contributes food with a Mexican flair, and believe it or not everyone has come to appreciate beans and salsa.  Tortillas are now a staple in the house.  Pat is the casserole king, and this week he made chicken pot pie from scratch.  He and Jay-R came up with the idea of using frozen biscuits as the top cover and pizza dough for the bottom… it was amazing. Everyone now knows how to make homemade pizza, and on Saturday nights they are in the kitchen together, rolling out pizza dough (bought from the grocery store, a ball of dough ready to roll) without any support people.

 

 

 

 

 

 

 

Now the guys all know to cut onions REALLY TINY so they disappear when cooked… they know to always have a boneless chicken breast for Ray if they are baking chicken, Jose knows to make half the beans refried and half left whole,  because some can’t have the pieces of their food blended.   All cut meat has to be approximately an inch square…not too big, not too small. No ground beef. Potatoes can’t be mashed, so they too, get cut in one inch squares. No pepper, no oregano during cooking, but the center of the dinner table is full of condiments so that each person’s food has the precise amount added to suit him. It wasn’t really a big deal to consider food sensitivities while cooking… and now it is second nature to make the meat the perfect size.  And sometimes… the guys will still go for the ramen during dinner.  But they always sit down together,  everyone always compliments the cook, and they are so impressed with themselves that they are pretty sure they’re ready to publish their own cookbook….

and the Ranch dressing?  Still there at center stage, helping broccoli and other questionables make it into the main course.

So thank you, Antoine de Saint-Exupery, author of The Little Prince.  Thank you for your suggestion that the love of something is what inspires learning. Not only are these guys developing a love of real food, but they love creating a meal, they love the ceremony of a meal, and they love making their friends happy…. 

Now we just need a way to inspire them to do the dishes……

These potatoes? Too big... they will be cut in half at least one more time.

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