Category Archives: friendship

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

Feeling A.A.L.I.V.E.

DSC_0052Last weekend we visited the Wolf Sanctuary of PA  for the Full Moon Tour …  listened to wolf lore by moonlight, warmed our cold feet by a huge campfire, got to know 40 rescued wolves, gazed into their yellow eyes and heard their lonely howls.  It was under 20 degrees F, but we walked around for two hours and Jose still wanted to keep asking questions as we were leaving. We warmed up at Cousin’s Pizza at 1030 at night and told our favorite wolf stories.

Our trip to New York City last month was a beautiful unseasonably warm and sunny day strolling the pedestrian street at Times Square, eating lunch at the HardRock cafe, and seeing a ‘sensory friendly’ production of ‘elf’ off Broadway. We checked out the New Year’s ball that we had just watched on New Year’s Eve, does it sit up there all year long?!  and we watched the skaters at Rockefeller Center before we boarded our own private, quiet and not too crowded bus back home to Pennsylvania.

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Rockefeller Center, New York City

This past year we have had box seats at minor league baseball games (box seats IMG_0639so we can walk around, have our own bathroom, eat Crab Fries and be somewhat flappy without bothering others)….. watched the spectacular Disney on Ice, spent a week at the beach, seen the most amazing jelly fish at the Baltimore Aquarium, met the HARLEM GLOBETROTTERS!, gone to the China Buffet once a month or so where we can eat lots of fried dumplings and make ice cream sundaes with unlimited whipped cream for dessert…… and amazingly we got to geek out at the New York City Comicon where we talked Anime/LEGO/ Ninja Turtles non-stop for 6 hours.

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We’ve learned to tolerate … maybe even enjoy….each other in the van on the way to events; gotten comfortable in restaurants; learned to make it through (without meltdowns) the dreaded ‘getting ready and loading up’ period before each excursion, learned that new places and faces don’t have to be scary, and formed close, trusting relationships with our dear A.A.L.I.V.E. family and friends who we see on many of our trips.

Priceless…

And just how do the guys get to do this on $698 dollars a month?

A.A.L.I.V.E.  Adults with Autism Living with Independence, Value and Esteem.

Money is tight for many people who have a disability and who are trying to create a fulfilling, productive, independent life for themselves.  Even when you’ve been able to put some money aside for a fun trip, it is difficult to structure an outing to meet the needs of folks with severe sensory issues and a fear of new environments. It’s a strange, scary, noisy, crowded world out there!

WE ARE SO LUCKY to live in southeastern Pennsylvania!

Colleen, Frank and Brian Foti, Founders of A.A.L.I.V.E.

Colleen, Frank and Brian Foti, Founders of A.A.L.I.V.E.

 

The A.A.L.I.V.E.organization has evolved into an amazing resource for adults with autism … and it’s such a GOOD IDEA… to structure experiences for folks like the Juniper Hill guys so that they can venture out of their comfort zone and see and do amazing things.

You COMPLETE us, A.A.L.I.V.E….

THANK YOU!

Friday Night Funnies with a bunch of autistic guys

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Jose Jalapeno on a stick

I sat by the fireplace listening tonight… quietly… but laughing laughing laughing inside, at times just marvelling at the magic… as I wished, as always, that I could record the after-dinner conversations going on in the room. Some of the conversations were an exchange between two friends, some were a give and take with characters not visible to me, and some were just musings, no audience necessary.

These guys are FUNNY.  Deliberately funny.  They play off of each other like a seasoned comedy team.  They take each other’s quirks and they run with them.  They accept the jokes about their own quirks that others are making, and they make them even funnier.  They interject pop culture humor, so SouthPark and Family Guy and Jeff Dunham are often partners in their act.  (…Jose aka Jose Jalapeno on a Stick thinks his nickname is pretty cool.) And when the comedy routine takes a turn for the intellectual as Ray expounds on a joke in excruciating detail, everyone yells NO MORE, RAY!! and the comedic exchange returns to the ridiculous.

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There’s magic here. We love and accept some of the guy’s imaginary friends.  The imaginary friends are funny too.  They have names and voices and places they like to sit or sleep and rules they think we should all follow and lots and lots of things that they do that are WRONG and it’s a good thing the imaginary friends can’t really get in trouble because EVERYONE would get them back for it.

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and I just can’t imagine anyone else’s dinnertime being this much fun.

Of course… things are not always this way.  Sometimes a glance at the wrong instant becomes a serious insult, or the timing of a joke sends anxiety through the roof.

But there is something about Friday nights.

Maybe it is the anticipation of a lazy Saturday morning with bacon… and NO STAFF in the house.

Or the complete and utter shutdown after a week of intense thinking about how to load a dishwasher … or worrying how not to drink more than your share of DSC_0192orange juice … or the guilt about how you should save money towards something practical when all you want to do is coerce your support staff to drive to WalMArt IMMEDIATELY because that $5 in change in your pocket needs to be spent on a LEGO or there is no future and you can’t relax until that money is GONE.

OHHHHH the pressure!

DEEP BREATH.  It’s Friday night. All those things you tried to learn this week, already a distant memory.  Let the dishes pile up.  Bring on the OJ.

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Fear and the fragile friendship

New York ComicCon 2012

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

On the Farm

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

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

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

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

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

FEAR.  That’s a big one.

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

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

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

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

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

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

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

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

Shelly, the crayfish

Happy Anniversary to us!  Tomorrow is Ray’s 27th birthday… and it is this weekend that he moved into the green house on Juniper Hill, just two years ago.

He moved in with a blue crayfish, giant bins of LEGO/Bionicles, plus one GIANT bin which contained the cardboard /packaging of all of his LEGO/Bionicles …. because they have information on the cardboard that he wants to remember… just in case.

Jose had also just moved in,  to the cottage at the top of the hill where he  joined Brent who had been alone since his housemate of 12 years had moved out three months before. Andy had been visiting for weeks at a time during the summer, and had decided that he, too,  could leave his parent’s home after all, and move out on his own.

And so the ‘core four’ began their life together on the hill…. navigating social interactions  and the well-stocked pantry of available food. That first weekend all together, Ray asked if his best friend could visit for the weekend … and so we met Michael. He became a regular visitor, and moved in some months later while he finished out his last year at school.

October, 2010

We had a plan, my friend Mollie and I.  We would all live happily together and grow giant fields of sunflowers and other cut flowers for bouquets, and we would work the fields with help from all of our other friends who happened to have a disability.  Our flower business would thrive, and we would make flower arrangements for events, wreaths for Christmas, and hand deliver bouquets for all holidays. We would have herds of fiber animals, and after we sheared the alpacas and combed the cashmere goats and angora rabbits, we would process the fiber and spin it into luxurious skeins with our spinning wheels as we sat by the fire on cozy winter nights. And then come spring, we would travel all over the East Coast selling our wares at farmer’s markets…. and we would earn enough money for all the guys to have a decent income, plus become a non-profit and get start-up grants to get it off the ground.

Ready… set… go!

Go?

Reality check.

Live happily together?  But he’s LOUD.  He hurt my feelings. He stole my … _____ (LEGO, money, chips, favorite shirt).  He hogs the TV.  He hogs the computer.  He swears. I hate his music.

Grow giant fields of perfect flowers?  Not if the groundhogs and deer, weeds and stinkbugs have anything to say about it.

Work in the fields? In the dirt?  With bugs?  In the sun? For how long?

The toilet’s broken again…. a gallon of milk, a dozen apples, and two bags of chips just disappeared in an hour…… and there is a mystery $300 dollar overcharge on the Comcast bill.

Farmer’s  Markets all over the East Coast? You mean, like when we are not busy weeding?  Like on Saturday mornings? When we are sleeping until noon because we are tired from our busy week?

It’s midnight and the dishes are done and the kitchen is clean and the guys seem settled and getting along… guess I should write that grant now.

And weren’t we going to learn how to spin?

Sigh….

Here’s what we DO have here on Juniper Hill, after two years.

A growing community of friends who happen to have autism, or other disabilities.  A group of friends who care about each other, who trust each other, and who get together once a week to work for an hour or so, here in the fields and then hang out over a fantastic lunch made by Jose, who loves to cook and feed people.

A group of WWOOF (http://www.wwoofusa.org/index.aspx) volunteers who help out on the farm when the guys just can’t (those bugs and that dirt….)

A medium sized field of flowers, but sunflowers only, kind of weedy.

A place at the local West Grove Farmer’s Market, which runs on Thursday afternoons…. only. Close to West Grove’s ice cream shop, the library, and Chinese restaurant… for market breaks.

the market ….where we sold all of the sunflowers that the groundhogs didn’t eat. and where we show off our future with fiber (cause this coming year, the guys are really going to learn to love making things out of felted alpaca! Right?!)

One toilet fixed, one more to go.

No start-up grants or non-profit, went back to working instead.  So I now help other people with autism and other disabilities, to set-up their own independent housing in the community.  I have a regular paycheck, and it pays for fencing.

And here on the hill are a group of guys who have learned to live together, play together, share their space, their food, and the TV. They take care of the farm animals, do daily farm chores, learned to cook, have great support staff who have hung in there for the entire two years….

they have lost a ton of weight and learned what healthy eating choices are, found volunteer jobs and paying jobs… and they are happy, self-confident adults who are great ambassadors of autism when we are out on our many wonderful trips together, courtesy of AALIVE (http://www.aalive.org)

It was always supposed to be about the GUYS.  And it is.

And no, I haven’t learned how to spin.  But the WWOOF volunteers came with a spinning wheel and cozy winter evenings are coming up… who knows?

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

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.

Autism and the extraordinary power of peers

Andy’s Chicken Cordon Bleu

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

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

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

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

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

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

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

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

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

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

But they also respected him.

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

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

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

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

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

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

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

It’s not.

Jose cooks lunch for all of the volunteers every Wednesday

Jose’s Birthday September 2010

Autism Acceptance… begins at home, here.

Six guys with annoying habits and quirky interests.  Six guys who have difficulty accepting other people’s annoying habits and quirky interests. But these guys love each other, they really do. They miss each  other.  They help each other.  They forgive each other.  They are good friends, loyal friends.  They ACCEPT each other……

Their musical tastes range from death metal to christian rock, 70′s music to broadway musicals. Someone gets up at 630AM and bangs around in the shower next to another’s bedroom who went to bed at 2AM.  One makes loud sudden sharp whooping noises when it is least expected, causing others to drop to the floor in shock, hands covering their ears.   One collects Barbie dolls and designs clothes for them.  One has Tourettes and swears often.  The Christian guys hate swearing and dislike any behavior that has a hint of femininity. Another melts down loudly at the word ‘WAIT‘, which is inadvertently repeated by everyone else, several times every day.  Two are very religious, another is an atheist and recites the historical significance of every religious event that refutes Christianity.  They are determined to convert each other, and very sure that they are right and the other is wrong. A deep monotone baritone that drones.. on and on and on about scientific facts in great detail is ever-present.  Often, impulse control is non-existent and they steal from each other.  Accommodating food sensitivities always makes someone else unhappy. Everyone believes in a right way and a wrong way for everything. But no one agrees on what that is. Television preferences include Anime cartoons, Sci-fi, History, Discovery, old Abbott and Costello, chick flicks with Brad Pitt or Tom Cruise, Mr Bean, and the Weather Channel.  No one agrees on what to watch.  Oh, wait a minute, except Mr. Bean.  They all agree.  Everyone thinks Mr. Bean rocks.

So, about this autism and empathy thing….

People with autism lack empathy.

Really?? ….I’m confused. Do the people who say this actually live with a person with autism… do they spend a lot of time getting to know people on the spectrum?  Have they experienced sad events together with their friends who are autistic?

I have.  Many many times over the years.  I’ve seen their anguish when a friend or animal is sick or hurting…. and I’ve seen how quickly they respond when a stranger needs help.  I see …and yes, I can feel…their pain when they have unknowingly hurt someone’s feelings or disappointed someone that they care about. I hear their apologies, and those apologies come from a place so deep and sincere that I expect that any second they will shut down completely out of sheer empathy OVERLOAD.

Lack empathy?  Not a chance.  But I do understand why so many neurotypical folks PERCEIVE a lack of empathy in their students or acquaintances with autism.

The other night around 10… Ray and Michael grabbed the lantern and headed up the hill to Ray’s house.  Down at the main house, I was checking Ray’s mouse live- trap, since we have had an influx of cute little meadow mice lately with the coming of spring.  I opened it up, and one of those cute little meadow mice jumped out of the trap and into the sleeve of my shirt and ran up my arm and onto my stomach… under my shirt. Now… I am not afraid of mice. Or snakes, spiders, rats or scorpions.  I live with them, Ray collects pets like this. I like all these critters almost as much as Ray does.

courtesy of bluebison.net

But it caught me by surprise and I screamed… LOUDLY.  and CONTINUOUSLY for what seemed  a very long time… because I could not get the thing out of my shirt and it was running around on my body.  Andy and Jose just watched me jumping around… and afterwards, Andy says ‘WOW! You scream like a girl!’

Ten minutes later, Ray and Michael return, carrying LEGOS of course.  Still excited, Jose and Andy tell the mouse story…. and Michael says…..

‘we heard you screaming all the way up the hill when we were walking up.  It sounded like you were really hurt, or like something was attacking you’

and I said ‘then why didn’t you run back?’

and Michael says..’ well  we were pretty intent on finding this LEGO piece that we were missing.  We’re back now.’

Uhh OK.

This is not lack of empathy.  It’s something else, hyper focus …or something.  To their credit in this particular case, I truly believe that sometimes the guys here assume that I am some kind of super human that can not be physically hurt… similar to a Bionicle or HALO individual perhaps, guys?…. (perhaps it is my ‘Bossy Big Sister‘ New Yorker attitude).

I am neurotypical but have lived with adults on the spectrum for 30 years. This kind of focus is going on all the time here.   Often, a problem will arise around a disruption of focus…of hobbies… or computers, televisions, or music…. something in the present environment that has to be shared with others.  And when this kind of focus is interrupted, these guys often have little tolerance or understanding of the person who is interrupting them.

I have tried to get them to explain to me how they are feeling, but I’ve never once succeeded at the time it is happening. It is during these instances that you see another side of these generally kind and gentle, compassionate guys. No matter how many times they are asked ‘how would YOU feel if …… ‘   or… ‘don’t you think it’s time for someone else to get a chance, you’ve had your chance for 4 hours’… there’s just ALWAYS a reason (actually, many reasons) why they shouldn’t have been interrupted because what they were doing was very important. So sure, in that particular moment, there is not much empathy… anywhere.

but by the next day…. they always rationally discuss possible solutions to the problem… and they apologize to everyone involved.

So am I missing something here?  Is this what is meant by ‘lacking empathy’?  I respectfully disagree.

April is Autism Awareness month, and tomorrow is April 2, World Autism Awareness Day.  The numbers are out and autism is now 1 in 88 births… we are past ‘awareness’.  Isn’t it time it became ‘Autism Appreciation and Acceptance’  instead?

And that is my rant for the month.

The border collie puppies visit the Hill

P.S. And speaking of empathy… in case you missed it, the family dog passed away recently, and I blogged about it here