Category Archives: housing

The Pursuit of Happiness: Juniper Hill Style

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Ray was gone for three hours in the adjacent woods one afternoon this week. Three hours!  I was just about to go looking for him when he came trudging

Ray's pond in bloom, 2013

Ray’s pond in bloom, 2013

back in rubber boots, cart full of interesting stream rocks to put around his pond, net in hand, and his container with two crayfish and a salamander.  He added the creatures to his pond that we finished last summer, and told us his ‘fish stories’.

Michael called this week, excited about his new place… asking advice about laundry, budgeting, relationships, and planning our summer trips.

John, chef extraordinaire,  sat for an hour yesterday reading recipes from a new Mexican Cookbook and talking about ‘catering’ a private party for a friend.

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Brent’s potato harvest 2013

Brent and Pete rototilled and planted their own bed of potatoes at the top house on Thursday, even though we have a big bed of potatoes planted for everyone down here at the main house.  They just wanted their own patch of potatoes.

And Andy, well he changed his view this week. Each evening he sits outside on HIS chair at HIS table on the patio before dinner, quietly contemplating, with his various personal trinkets and pebble piles on the little tile table. For over a year now, he has been sitting facing the side yard where the angora rabbits are.  And this week, he rearranged and changed his seat to watch the evening sky and forested hills over the sunflower field… it really is pretty this time of year. He came in first and announced it. ‘I want a different view, I am rearranging the patio OK?’

These are the kind of things happy people do, I think.  Right?

I mean, these guys do struggle with anxiety and sensitivities and impulse control. They never have enough spending money.  They complain about their housemates.  They don’t have jobs that give them enough hours or jobs that are steady. They all have dreams that have not yet been met.

But I really believe that they are happy. There is always something that they are unhappy about each day. But lots of times if asked, they say they are happy with their lives. And happy people, they care about the view.

I’ve given this a lot of thought this past month, because we were asked to speak at a conference about ‘happiness’.  And this is what I truly feel, so I’m sticking to it.. for now! dff-logo Last Saturday the guys and I presented at the  ‘Autism and The Pursuit of Happiness’ conference given by Dragonfly Forest, a camp for children with autism and other disabilities.  When they called us a few months ago and asked if we would all ‘present’, I hesitated.  Well, the guys don’t actually … ‘present’,  I tried to explain. But I thought about it and decided to give it a shot.  I wasn’t sure how we would all have on our happy faces for that day…  but that’s not really what happiness is all about anyways, right?

So I came up with a powerpoint presentation highlighting the things that I think have contributed to the guy’s ‘life attitude’, be it happy or not, and piled everyone into the van for the ride early on a Saturday morning (a miracle in itself). We were lucky to have our own corner in a quiet side room, with a table on which we could put our important ‘stuff’ during the conference.  Michael arrived and announced that there was NO WAY he was going to stand up in front of a bunch of strangers and talk.  Rebecca wasn’t feeling 100%.  Andy had stayed up all night and didn’t come at all. Brent brought a blanket to sell, and that was all he was concerned about.  And Ray brought Lego creations.  He was ready and willing to ‘present’ his Lego stories. I told them all that I would pay them 10 bucks if they would at least sit in the room while I talked, that it would be nice for folks to see who they were and maybe ask a few questions and they could answer if they felt like talking.  So they all decided to make the effort and go outside of their comfort zone for an hour.. for 10 bucks.

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It. was. amazing.  It was either the most outlandish/uncomfortable presentation for the audience… or the most amazing /best ride ever.  The guys mostly did it themselves… with me just clicking through each powerpoint slide and saying a few words before the guys cut in and told everyone the story behind each slide. Michael, who had intended to leave as soon as he arrived because he ‘was not going to stand up and talk in front of people’… jumped up at the first slide to talk about the photo and how it was one from the first year we were together … and he was the one who led everyone else, standing the whole time in the front of the room leading the conversation.  Really. I loved it.  These guys rock.

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They reminisced about good times.  They were unorthodox.  They argued. In the middle of the presentation, they excused themselves and went outside to work out their differences and came back in five minutes best friends. They talked over each other.  They laughed with each other. And they were occasionally R-rated… talked openly about sexuality, bullying, abuse, and living in a residential facility.  Rambled on and on in detail about Lego creations and why each part went where. And they told the story of their lives together the past four years, talking off of the slides that had the memories…  the trips we have taken, the meals they’ve learned to cook, our animals, selling sunflowers at the Farmer’s Market, and their staff, their wonderful support people.

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And every so often during the presentation, Brent would raise his hand.  And then he would come up to the front of the room and stand next to Michael… holding the blanket that he was crocheting….  and he would say ‘I making blanket IMG_1375bigger’ and then look at me… and I would tell the audience, each time, that Brent crochets blankets and sells them, and he wanted everyone to know that he had one for sale for $35 at the table in the hallway.

And of course, after the presentation someone bought the blanket.

It was a great day. I am very very happy.

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Andy’s view

 

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

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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?

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

Happy New Year! Reflections on three years together

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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. 

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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?

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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….

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

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Imagine this.  A place where inclusion just happens.

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

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

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

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

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

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

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

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

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

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

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

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

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

They do not define people by their disability.

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

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

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

Here is why this is inclusion..

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

And who else was here with us today?

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

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

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

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

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

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

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

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

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

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

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

And then everyone took a nap til dinner.

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

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

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From Tolerance to Acceptance…. getting through the rough parts

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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!

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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.

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

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.

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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:

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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.

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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!)

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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.

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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.

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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.

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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!

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Dylan’s Creek

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.

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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.

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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.

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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