Category Archives: Support workers

From housing model to home: five years later.

Posted on September 6, 2015 | 13 comments
IMG_4350

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

IMG_4343

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’

CCANgreen.021

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.

IMG_5137

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!

IMG_5743

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?

IMG_6861

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…).

IMG_5494

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.

IMG_6781

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!

IMG_6870

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.

13 Comments

Posted in Adults with Autism, ASD, Asperger's, Autism, autism and relationships, autism community, autism spectrum disorder, Farmer's markets, friendship, housing and autism, housing choice, inclusion, Living independently, Support workers

Tagged , , , , , , , , , , , , , ,

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

Posted on March 3, 2014 | 14 comments
DSC_0174 3

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

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

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

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

Be careful what you wish for.

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

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

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

And the rule-breaking event?

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

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

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

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

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

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

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

Here is another story.  This one is happier.

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

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

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

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

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

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

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

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

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

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

Setting up supports for yourself or your adult child?

Who are YOU gonna call?

DSC_0819-3

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

14 Comments

Posted in Adults with Autism, Asperger's, Autism, cooking, friends, friendship, Funding, housing, housing and autism, inclusion, Living independently, relationships, staff, Support workers

Tagged , , , , , , , , , , , , , , , , ,

Happy New Year! Reflections on three years together

Posted on January 26, 2014 | 7 comments

DSC_0173

The snow is falling softly at midnight and outside it is just stunning with the porch light reflecting on the white blanket covering our rolling hills.  Ray is making his way up the hill to his house with his dog, Hahli, who celebrated her first birthday yesterday.  Tomorrow we’ll be snowed in, here on Juniper Hill ….. and Andy and I will cross country ski across the fields, Brent will split lots and lots of wood and keep the fireplace going, and Oh Joy!  it is John’s night to cook and I am hoping for a repeat of the Beef Bourguignon that he made a few weeks ago. And maybe, just maybe… NO staff will be able to get here and it will be just us, all day. 

DSC_0286

Andy has been Special Olympics cross country skiing for years!

Our life sounds so idyllic… and actually, that first paragraph is pretty accurate. We have come a long way in three years!  But lest you think ‘Oh, that could never be my kid’ or… ‘it must be an easy group of guys’…. or… ‘they must have a lot more money than us’ or…. ‘my son just eats ramen, he would never be interested in cooking a meal’…. I’m also going to mention, of course,  the gritty details that go along with our idyllic existence here on the farm.

These days, it’s all about a comfort zone. An anchor.  Home. A safe place that we know, and trust. A place where familiar things happen over and over each day and week and month… with enough repetition so that when new and unexpected things occur, it’s not such a big deal because that comfort zone is there. The familiar people are there, the animals that we know, the same familiar food on the shelves, and that perfect size plate, spoon and glass that you like to use. It’s the comfort of being friends with your staff (even if the agency that sends them insists that you have a professional, not friendly, relationship.  Silly rule, yes.  More on that later). And it’s the comfort of being friends with your housemate’s staff, too.

It’s about routine.

It’s about weekday winter mornings when the fireplace is crackling and staff is arriving and everyone is getting up and ready for the day and the house is buzzing with familiar conversation and we’re talking about the dinner the night before and the leftovers are out for everyone to try.

It’s about that awesome time each weekday ~late-afternoon~ when staff leave and the screens go on …computer, television, IPAD, DS,…and the chips and popcorn fly off of the shelves .

It’s about the absolute best  after-dinner evenings anywhere. Music, The BigDSC_0108 Bang Theory, ice cream, slippers, tea, a cat on your lap and dogs sleeping at your feet.

And it’s especially about Saturday mornings. No staff.  Sleeping late.  Really late.  No responsibilities as long as the animals get fed. Nothing to think about or be reminded of until Monday morning.

It all sounds great… and it is, pretty much.  The comfort of the routine, the relationships, the extended Juniper Hill  family… it trumps the gritty stuff that happens.  It trumps the stuff that doesn’t happen also.

Because it is obvious to me, now, that being an adult with autism is just never easy. 

Not a day goes by for these guys, when they are not feeling discomfort, or frustration, or anxiety about something.

Yes, they are friends and they trust each other.  The familiarity is very comforting at this point. That does not mean, to them,  that the other’s voices are pleasant to listen to.  It does not mean that they  don’t say things to each other that are hurtful.  It does not mean that their taste in music and TV is acceptable to the others. It does not mean that they don’t find each other really annoying, at least sometime during the day. But having friends means compromising, and that can be SO difficult, how do we solve this?

DSC_0281

yes, everyone has their own favorite plate….

The staff are great, they have become part of our family and we love them.  It’s been a year now since the ‘new’ group of staff joined the staff who had been here since the beginning, and things have fallen together and the farm runs fairly smoothly.  But at 930 AM… when everyone is in the kitchen… (including the guys who live in the top house because they want to be eating breakfast where everyone else is)….when five staff have just shown up and are talking and moving around and in your way and bumping into you and going over what has to be done and LAUGHING and TALKING too loudly…  it’s JUST TOO MANY PEOPLE.   The guy’s funding works in a way that does not allow staff to work with more than one person at a time. Everyone needs ‘encouragement’ to get out of bed in the morning, and wants THEIR staff to be there   … how do we solve this?

The ‘system’ is supposedly set up to ‘support’ people with autism that live independently.  To support them in their dreams, their goals, their basic needs. In three years everyone here has come a long way in learning how to cook and make healthy ENOUGH choices, how to be organized and clean ENOUGH, how to be considerate ENOUGH  of others, how to think about finances ENOUGH to be kind of responsible….. but doesn’t this sound pretty much all ‘basic needs’?  What about dreams?  How does a support person make DREAMS happen?  What about love?  What about a life?  What about a bucket list?  It’s REALLY complicated, and REALLY hard to make happen for someone else….. how do we solve this?

How can you focus on dreams, when it takes ALL of your energy just to get through each day?

Basic needs…we’ll keep working on all that stuff as we go along.  And there’s more besides… there’s the continuing saga of the correct medication, or just having a job that you like, that you’ll keep, and that will pay.

The days are full here, and fulfilling.  Our family keeps growing… sometimes things happen and the living situation will change for someone …. so some of the guys have come and gone, and then come again… and gone again….

but always… they remain part of the family… and still remain part of the week’s activities, or the weekend excursions

and so the family grows…. and having this family, well, it makes our lives way more than ENOUGH.

But this coming year, in 2014…. we’re going to think about DREAMS….

dream-big

7 Comments

Posted in acceptance, Adults with Autism, Asperger's, Autism, cooking, friends, friendship, Funding, housing, housing and autism, Living independently, staff, Support workers, tolerance

Tagged , , , , , , , , , , , , ,

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

Posted on October 30, 2013 | 20 comments

DSC_0313

Imagine this.  A place where inclusion just happens.

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

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

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

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

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

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

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

tumblr_lztq6cC8Ok1qfrx9so1_500

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

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

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

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

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

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

They do not define people by their disability.

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

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

DSC_0231

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

Here is why this is inclusion..

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

And who else was here with us today?

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

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

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

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

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

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

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

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

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

DSC_0185

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

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

And then everyone took a nap til dinner.

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

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

DSC_0301

20 Comments

Posted in acceptance, Adults with Autism, Asperger's, Autism, Farming, friends, friendship, housing, housing and autism, inclusion, Living independently, Support workers

Tagged , , , , , , , , , , , , , , , , ,

From Tolerance to Acceptance…. getting through the rough parts

Posted on May 20, 2013 | Leave a comment

IMG_0930

EVERYTHING WORKS OUT IN THE END.  IF IT HASN’T WORKED OUT YET, THEN IT’S NOT THE END…. Tracy McMillan

It takes time… lots of time. It takes time to accept the fact that food has to be shared, that the TV has to be shared, that friends say hurtful things but often don’t know they are doing it, that friends say hurtful things knowingly but only are saying it because they are hurt and scared.  It takes time to learn to roll things off your shoulders, even if they really bother and annoy you… like being teased. or people in your personal space.  Or loud outbursts.  Or changes in plans. Or having to clean the bathroom, cause it feels like you do more work than everyone else because bathrooms are gross and should count three times as much as any other chore.

It takes time.. to get past TOLERANCE, and move into ACCEPTANCE.  There’s a big difference between the two! Often, the folks with autism get there ahead of their parents.

As a ‘housing counselor’ to parents who have taken the leap and helped their IMG_0932young family member move out on their own, I’ve witnessed the fear and frustration and confusion and uncertainty of whether or not it was the right thing to do.  Remaining at home was  safer for your adult child in lots of ways…it is just so scary to allow the rough parts to happen and not give up.  You know that there are probably going to be more rough times for awhile. And it was easier and less time consuming too, to just have them living at home.  No worrying about staff not showing up. Their clothes matched, their room was cleaner, they brushed their teeth better, and you could keep track of what they were eating. Really, is this worth it??

I began writing the Juniper Hill blog in the winter of 2012, and  my first post was about how much everyone was learning to accept each other, in just one year. Now, two and a half years since we started, there are still rough spots…. but the relationships have grown, and mellowed.  I am not a parent to any of the guys, and therefore have different feelings..  Less worry, less uncertainty.  But for me, I am quite sure. It is worth it.

Brent requested a family dinner at Red Lobster for his birthday last week… so we piled into two cars, made a grand entrance  and took over their largest table for two hours.  We had MORE FUN than anyone else in the restaurant that night, we were pretty sure that everyone wanted to be us.IMG_0931

We ordered fun drinks, our favorite seafood combinations, took silly phone pictures of ourselves, reminisced about past birthday celebrations, listened to everyone else’s requests for THEIR future birthdays …. and clapped to the Red Lobster birthday song for Brent.  And we ate cake, of course!

It didn’t start out like this, our life together.  Wow, not by a long shot.  And the meltdowns and frustrations and arguments still occur, but they’re different now.  They just don’t go as deep, are over more quickly, and are taken in stride by the other guys.  Two and a half years together, and I think the word here really is IMG_0948acceptance.  It just kind of happened…. over great dinners, fun trips to amazing places, cozy evenings by the fire, helping each other through frustrations, talking over problems, arguing about house rules, coming together and caring about each other in times like hurricanes and power outages, and celebrations of course, celebrations of accomplishments…. holidays… birthdays… milestones.

It was not always easy. There really  had to be lots of flexibility, and patience, and tolerance, and FAITH…to get through the rough parts. There has to be tolerance first, before you get to acceptance.  I’m not sure that it is ever easy, especially with autism.

First there was that fist fight on the deck that first year… and the time theIMG_0942 pitcher of iced tea got thrown all over everyone in anger (and panic no doubt)…. and the banging on the walls…holes and more holes… Hey!  that still happens!….. and the teasing over each others likes and dislikes and beliefs… and the stealing…. and the meltdown yelling at midnight… and the phone calls EVERY TIME I was out at night because somebody would always take it upon themselves to order the others around, and this was scary for the more submissive guys…

It’s difficult to write about negative things, it’s always easier to tell happy stories. I worry about discouraging people from taking the chance on independence.  But although these are true stories,  they are also HAPPY stories… just with some glitches….and somehow it puts the ‘lack of tooth brushing’  in perspective! (Keep reminding the staff, the tooth brushing will come).

And we love to tell the ‘pitcher of iced tea’ story… it’s become legend!

teaware-bodium-iced-tea-pitcher-IT-P-10011

The friendships are there. We really know how to have fun together…. and laugh….and we are one big kooky quirky eccentric amazing marvelous family…   It was great to be reminded of that, at Red Lobster last week.

IMG_0960

Leave a comment

Posted in acceptance, Adults with Autism, Asperger's, Autism, friends, friendship, housing, housing and autism, Living independently, Support workers, tolerance

Tagged , , , , , , , , , , , , ,

The importance of Waffles: a guide to making a happy home

Posted on April 16, 2013 | Leave a comment

homealoneLots of after-dinner belly laughing, whoops and hollers the other night, along with a few expletives directed at the bad guys… it was Home Alone 1 and 2, back to back.

All staff and visitors were gone after our volunteer’s ‘Opening Day’ on the farm and it had been our first sunny 80 degree day…. what better time to watch Christmas movies? Tired from the hot but awesome hike to the creek after working,  we foraged on lunch leftovers and sat down for a spontaneous movie night and miraculously, everyone actually agreed on Home Alone as being worth their time. Life was Good.

IMG_0853

The trail to ‘Dylan’s Creek’

Superstorm Sandy blew through our corner of Pennsylvania without much fanfare last fall.  But here on the Hill, the anticipation of Sandy for the entire week DSC_0062before she arrived was pure torture.  The best thing to come out of it (besides Brent’s amazing ‘Pocket Radio Hurricane Mobile’ that he made to distract himself from the weather channel), was my inspiration to blog here about the importance of weather and all those other seemingly harmless things that get in the way of an independent life and make things difficult for these guys.

But now, after a hike to the creek and spontaneous Home Alone togetherness along with last week’s 500th birthday party of the year (well, not really 500),  I’m thinking a blog about all those little things that make an independent life so much better is a must. You see, these guys here and others like them, the ‘in-betweeners’, can survive in the community living semi-independently. With a knowledge of basic safety and microwave use, and a staff person that comes in regularly…. these guys can survive with that.   But in order to thrive, we are finding that there are lots of little things each day that make life better.

Take waffles, for instance.  Not the frozen kind… although they should be on thewaffles1 list as well because a quick breakfast of toasted frozen waffles when you are in a rush is pretty good. No, I’m talking about the kind made from scratch, right out of Joy of Cooking..thick but light and fluffy, and golden brown… a bit crispy on the outside….mmmmmm.

It all started the time we had our friend Dude I’m an Aspie Matt Friedman over for a Sunday brunch of Chicken and Waffles.  It is just an awesome combination and we are all still talking about it.  So I started mixing up the waffle batter (minus the chicken) and leaving it in a bowl next to the waffle maker on saturdays…. (the ‘if you build it, they will come‘ kind of teaching model :)). It worked with Ray, he just started taking the time to cook them.  Around here, it only takes one person to start a trend.  Pretty quickly, ‘waffle envy‘ set in and everyone joined in.  Tonight when the leftover batter was gone, Jose said ‘These are much better than the ‘others frozen’. How do you make them?  I want to learn‘.  So I helped him step by step, wrote the recipe in the ‘NOTES’ on the house IPAD…. and I bet there’s going to be a lot of waffle batter in the fridge from now on.

Of course, you can learn to live independently without homemade waffles.  But why would you want to?! We started making a list of all the other things that add to our lives here, our ‘How-To’ Guide’ for other folks out there who are planning to live on their own someday (some of our list is more for the country living folks…there are different ones in the city!).  And here is our list below (starting with the obvious)

Holiday and birthday celebrations are a given, of course! Brent’s obsession with every holiday and Andy’s eye for important dates coming up on the calendar ensures a celebration for each and every one.  The crowd of friends DSC_0038who make it a habit to drop by on Wednesdays have pretty much all requested that their birthdays (and their staff’s) be celebrated as well. So we have been blowing out candles almost weekly all winter long this year. It’s just the best thing about Wednesdays !

A home where friends and neighbors drop by …now that spring has arrived, we look forward to Wednesdays when our friends come to volunteer… and the group continues to grow.

Fun trips to cool places.  Trips and leisure time activities off of the farm, with the Juniper Hill gang all together…  shared experiences truly build friendships.  We know that here.DSC_0357

Dessert ….. especially if it involves whipped cream and fruit served in stem glasses.

and Puppies… or other pets.  Nothing like puppy cuddles.  Now that Ray’s puppy Hahli is here, our Juniper Hill ‘village’ is helping to raise her together. Alice, our wonderful dog-like tuxedo cat, is always looking for a lap to nap on (which is very easy to find here.) and Bruno, our almost 30 year old cockatiel, always chimes in along with the dinner ruckus.

and there are lots of less obvious things that make us feel like we are Home:

DSC_0011

Andy keeps the bird feeders full

Bird-feeders (cardinals in the snow, squirrels doing acrobatics to steal the bird seed)

Bingo tournaments (with prizes from the dollar store)

House plants (especially if they flower, like Christmas cactus)

Your own seat at the dinner table

Your favorite fork, perfectly sized and bent (and favorite cup, knife, and spatula.. )

A Water Cooler… because for some reason, a water cooler makes it more fun to drink water.

A Creek to walk toDSC_0212

Rubber boots (to walk in the creek)

a House IPAD  …this needs it’s own blog post, so many uses!  Fun apps (Math Bingo!), email, facebook, YouTube, Music, detailed chore lists for staff to use when teaching skills, privacy internet (explanation?  some other time), and now waffle recipes at the tip of your finger.  Wow.

Photos on the fridge … family pictures, pets, our trips

Bus charts.. and other charts.  Visual lists on the fridge to check off.  Brent’s bus chart keeps him focused on going to work and helps him to board the bus, even when there is a new bus driver.

Christmas lights all year long.. just one strand?… OK so we changed the color and added red chili peppers so they don’t look Christmasy…  it sure makes it cozy in the evening. We don’t think it is tacky.

Little pads of paper or notebooks.. and pens…lots… because everyone likes to make lists, draw, and write down facts (that they are reading off the IPAD)

Chickens.  Highly underrated, entertaining creatures in your yard, especially the little bantams.  Fresh eggs every morning.  (well, probably will not be high on most people’s list,  not really at home in the city!)

DSC_0288

Saturday morning cartoons, forever….

Bacon.  self-explanatory.

Frozen strawberries in the freezer… so you can always make a smoothie.

Spontaneous movie nights.  A VHS collection and player (I don’t know why. but it’s true).  and also Netflix streaming all kinds of movies to please everyone… from Abbott and Costello to Anime.

TV Blankets…. to curl up with on cozy winter evenings.  Preferably a Brent’s Blanket .

Tray Tables… cause sometimes you eat dinner in front of the TV.

Picnic Tables… cause it’s great to eat outside in the summer.

DSC_0053

A Grill.. even a small one.  for the hotdogs and hamburgers that you are going to eat at the picnic table.

A Crockpot.  Throw in meat and vegetables at noon and cook it ’til dinner, and the house smells delicious all day.

A Vegetable garden.  with tomatoes, and potatoes.

Night lights, and a guy with OCD who turns them on at dusk, as well as turning on a light in each main room in the evening (and the Christmas light strand of course!) … absolutely wonderful to come home to after work.  Without him, the guys would sit in complete darkness with just the light from the television.  Really.

A Pond, with fish.  We have been working on this for two years, soon to be finished. We will let you know how nice it makes us feel, soon.

A Fireplace and someone who loves to build fires every night... and a place to sit by it with a book.

tumblr_mfq1zq9Hu01qb8gfto1_500

A Fireplace that streams on Netflix. Apparently almost as good as the real thing around here.  Check it out!

Lots of tea choices, for a hot cup of tea on cozy winter evenings in front of the Netflix  or real fireplace. Especially Tension Tamer, Sleepytime, Peppermint and KAVA Stress Relief.

DSC_0003

and especially Music... really cozy when it comes from three directions in the house all at the same time… heavy metal from the basement, Christian rock in Spanish from upstairs, classical or jazz ‘soft music’  from the living room when it’s Andy’s turn for the IPAD.

We could keep going…

As time goes by  here on the Hill, with the same guys and staff becoming a family after two and a half years, new traditions/habits/routines continue to evolve. We realize them in retrospect!

So go out and buy a waffle maker. Here is our recipe (simplified from Joy of Cooking): Turn on the wafflemaker. Put 2 cups of flour, 2 teaspoons baking powder, 1/2 teaspoon salt, 2 tablespoons sugar in a bowl  and MIX.   Break 3 eggs into center of dry ingredients and MIX (just eggs), then MIX 2 cups of milk in with eggs, then MIX everything together.  Add 1/2 stick of melted butter and you guessed it… MIX. Put a cup of batter on the pre-heated waffle maker, and set the timer for 5 minutes.  If you don’t have syrup, yogurt or jelly works too!

IMG_0875

Dylan’s Creek

Leave a comment

Posted in acceptance, Adults with Autism, Asperger's, Autism, cooking, friends, friendship, Holidays, housing, housing and autism, Living independently, Support workers

Tagged , , , , , , , , , , , , , , ,

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

Posted on December 5, 2012 | 3 comments

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

3 Comments

Posted in Adults with Autism, Asperger's, Autism, Employment and Autism, Funding, housing, housing and autism, Living independently, Support workers

Tagged , , , , , , , , , , , , , , , , ,

Fear and the fragile friendship

Posted on November 13, 2012 | 5 comments

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.

5 Comments

Posted in acceptance, Adults with Autism, Asperger's, Autism, friendship, Living independently, Support workers

Tagged , , , , , , , , , , , , ,

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

Posted on September 30, 2012 | 3 comments

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?

3 Comments

Posted in Adults with Autism, Asperger's, Autism, Farmer's markets, Farming, Fiber, Fiber and Felting, friendship, Funding, Living independently, Sunflowers, Support workers, Uncategorized

Tagged , , , , , , , , , , , , , , , , , , , ,

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

Posted on August 17, 2012 | 2 comments

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

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

Here is the link to the story:

Autistic man denied heart transplant

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

Jose also has an intellectual disability.

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

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

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

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

Jose combing Cashmere off of Johnny the goat

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

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

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

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

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

He makes everyone laugh, every day.

Well lived, Jose.

2 Comments

Posted in Adults with Autism, Asperger's, Autism, cooking, friendship, Funding, Living independently, organ transplant, Support workers

Tagged , , , , , , , , , , ,