Tag Archives: adults

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!

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

The WC Press features Ray for Autism Awareness Month

   

     Ray works every Monday and Friday, cleaning two different gyms in West Chester PA.   He takes public transportation home on his own …we actually have a bus line that comes all the way out here to rural southern Chester County…. and gets dropped off in West Grove (about 6 minutes away from the farm).  He deposits his check each Friday in his local bank before getting picked up by someone to take him the last leg home to Juniper Hill.

He was featured in this month’s WC Press, a West Chester magazine.  Check it out!  Yay Ray!!

Click on this link to read Ray’s article!

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

The Loss of a Pet

Living on a farm… death happens.  

It happens fairly often, actually.  We have five new baby chicks, and one of them drowned in the waterer last week.  One night a raccoon got into the adult hens, killed one of them and left most of its body.  Ray has lost pet mice, tropical fish, and a very long-lived crayfish.  Last year, our old goat passed away. 

But none of these events were anything like losing the family dog over Christmas week this year.  Soon afterwards, I wrote the story of his last days because the guys’ reactions were so moving.  Here it is below.

Nemo passed away yesterday.  Our old, smelly, incontinent, hairless chihuahua mutt who lived in a crate in our dining room for the past year.  No one knows how old he really was… he had been rescued from a dark basement, starving and without water… and he became part of the dog family on the hill after we read his sad story on Craigslist.

His basement experience led him to drink as much water as he could find…. hence the incontinence when the gallon of liquid moved through his tiny body.

So he lived in the crate….

But a funny thing happened. This smelly and quite unattractive creature somehow won the hearts of these guys here on the Hill. Jose always entered the house calling to Nemo, so he could hear him howl.  Michael lifted him out of the crate each evening to sit in  the rocking chair with him and tell him stories of the day. The dining room is the center of social activity, and everyone was in tune with Nemo’s needs.  ’Nemo do you need water?’ ‘Nemo needs to go out…..get him outside quick!’ ‘Where’s Nemo, he’s been outside too long’. ‘He’s cold’.  ’He’s hot’. ‘He’s still hungry we need to feed him more’. ‘Give him chicken’.  ’Nemo’s at the door, someone LET HIM IN!!!!!’

Six guys with social issues, coming together over an unlikely mascot.

We all watched Nemo fade away these past weeks; he was treated with such gentleness and compassion.  And when it came time to say goodbye, everyone came together to prepare his gravesite, our first here at the house.  The guys dug a hole together, taking turns…. the goats and pigs watching from the other side of the fence.  We told our favorite Nemo stories and laid him gently down.

Then Jose howled.  And we all joined in.

And today, the day after, the guys are still howling… and visiting Nemo’s grave.  And saying how much they miss him… and giving each other HUGS for comfort.

Genuine empathy transcends all social missteps.  Social issues on hold for now.

Nemo and Kit 2010

Autism and agricultural communities: a reason for keeping it small

So much talk this week about agricultural communities and autism… the autism blogs and listservs are buzzing about the  FRED conference that just happened in California (Farms and Ranches Enabling people with Disabilities).  There has been an overwhelming response to the conference nationwide.  It is so inspiring to see some of these long-term communities continue to grow and succeed… check out these agricultural communities of adults with autism.  Families are talking about working together with others to create their own farm for their family members.  Again and again, the talk ends up focusing on the lack of funding, the lack of support for projects like these from the very organizations that should be helping.

For those of us whose lives are affected by autism, we ‘get’ why the farmstead model is such a good option when thinking about a life of independence for many adults on the spectrum.  Tranquility.  SPACE.  Animals.  Nature.  SPACE.  The freedom to be who you are … free to hoot, jump, pace, flap, stim, and talk talk talk …. without judgement.  The freedom to CHOOSE when and how you want to interact with others.  Life on a farm does not have to be isolating, there can be many opportunities for socializing with very little effort.  But having that CHOICE to be alone when there is a need to recharge without interaction with others… that choice is priceless for many with autism.

But since the 1970′s, the movement has been towards non-congregate living for people with disabilities.  It became the accepted belief that a life mainstreamed into society was best… that the ‘least restrictive’ environment was an environment where the individual with a disability was part of a community that consisted of mainly non-disabled individuals. The pendulum had swung all the way over to that other side, and now for many years the government and other funding streams have not wanted to consider new ‘congregate’ settings (settings where non-related people live together)  as viable options for independent living.

My own personal (and very controversial) belief is that this has been extremely over-simplified… after 35 plus years working in the disability field and 15  years in housing…. I have seen many many desperately lonely people living in the ‘community’ with few friends or connections and whose families have long since let them go.  On the other hand, some of the happiest people with disabilities that I have met either live or work in fairly large congregate settings with their best friends. It really depends on the specific nature of the ‘community’ or the ‘congregate setting’, and the quality of the support people in each. It is an oversimplification to call one situation ‘good’ and the other ‘bad’.

The guys at Juniper Hill are very attached to one another, yet also very different from each other;  they share only limited interests.  And they miss each other whenever they are apart. They are also attached to the 10 or so people who come regularly to visit or help out on the farm.  They all like each other because they are wonderfully kind, interesting people, not because they are autistic.  What right do we have, as a society, to tell them that they can’t live together just because they share a diagnosis?

courtesy of Handi-crafters

At any rate, it has become evident that creating an independent living situation with as little assistance from the government as possible may be the most practical and sustainable path for the majority of families right now.  With six guys living in close proximity here on the Hill, it borders on ‘congregate living’ in some eyes, and chances are we would have to argue this point if asking for government support for the project.  Our original plan here on Juniper Hill….. to create a working farm that would provide employment and a meaningful day for a number of individuals…. has now evolved into a simple independent living situation where the people living here just  rent their home and pay most of their bills with their social security checks.  They are learning to work on a farm, and this work will at least provide them with their spending money, and hopefully more, eventually.  It is a replicable model for many families…. and that was our goal.

We haven’t done any fundraising (yet) and the farm is not a licensed facility.  However, these guys are lucky in that they do have some waiver funding that provides the support people that come in at an average of 15 hours a week for each guy. It’s not very much but it gets the shopping, laundry, cooking and cleaning done and leaves time for volunteer jobs and even some leisurely trips to the nearby University town and weekly stops at the local library. A couple of times a month, the  AALIVE organization provides some amazing fun trips. And the guy’s social circle is continually growing, with friends dropping by to help out on the farm, just because they like being here. We recently registered as a host farm with  WWOOF, an organization that links volunteers to working opportunities on farms. We see this as an excellent way to provide some of the  supports for individuals who lack funding, while at the same time providing a valuable and enriching experience for volunteers. In just two weeks, we already have a local WWOOF volunteer coming weekly, and three more scheduled for long-term stays here.

So we think that we will just stay this size…. there is still so much room for growth in other ways, and that is enough.  And we are really looking forward to sharing ideas and guiding other families through this process.  Life is Good… here on the Hill!

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

Jose and his other girl, Kit

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

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

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

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

and it just works

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

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

let’s just hang out

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

Dude I’m an Aspie

Recharging

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

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

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

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

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

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

Patrick's first lasagna

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

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

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

 

 

 

 

 

 

 

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

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

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

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

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