Tag Archives: empathy

Autism and the Food Police… The right to eat too many doughnuts (or cream puffs).

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Oh MAN!  Someone just broke open the new box of cream puffs that were defrosting for dessert and ate 10 of them!  And now there are 5 more of us who are going to have to split the remaining 15… sigh.  Such is life here.  

I often feel like the ‘food police’ here at the farm… it is NOT my favorite role.  It is a constant goal of mine to find that place where I am not just the ‘bad guy’, that place where I can be the mediator, mentor, and EQUAL housemate… all at the same time.   It is an ongoing effort to maintain the budget while still making sure that everyone’s rights are respected.  Everyone’s.  THAT right there is the key, and what makes this a realistic situation from which everyone learns. There are six of us, we live together, we are friends and housemates.  Everyone here exercises their right to choose, within the constraints of a sharing household.  It’s complicated!  But each day I am reminded that the living situation for the guys here on the Hill is comprised of a set of ideal circumstances where I can allow many issues to take care of themselves at this point. That’s way better than being the Food Police!

Four years ago (FOUR YEARS!  WOW…) this would not have worked.  Four years ago, everyone wanted what they wanted when they wanted it… and had no interest in considering the others.  Food and drink, television, music, bathroom time … all came with an expectation. The expectation that things would remain showermanthe same as they had been.  No one had ever lived in a group situation like this before. The entire gallon of iced tea in the fridge? It could be consumed on a hot day in one sitting… (and without using a glass).  Same with that gallon of chocolate chip cookie dough. And on a chilly day, you could stay in the shower so long that you ran out of hot water, all by yourself. You could blast heavy metal music in the living room whenever you wanted, and you got to pick the car music on trips. And sit in the front seat. And at home when the football game started at 8PM you could pick up the remote and just change the channel…

NOT.

Actually, all of these things have happened.  Some of them still do.  At first it was frustrating for me. (Having someone walk into the room where I was watching a movie and just change the channel… really?) I struggled with ‘suppressing’ my natural responses… not easy with my blunt, straightforward and LOUD New York upbringing! The guys struggled as well. They struggled with changing their expectations… and at the same time they struggled with all the new, conflicting feelings of ……

1. REALLY REALLY wanting to eat as much as they wanted (and take long showers, and hog the TV…)

2. Not wanting to get ‘in trouble’ from not just me but five other people as well

3. Wanting to please the friends that they cared about (which probably wasn’t ALL of the housemates, but at least some!) and

4.  Caring about doing the right thing.

Some days I can’t believe this, but it is true. Four years really is time enough to learn trust.  With trust comes patience… and acceptance… and tolerance for the things that annoy you… and consideration.  We have all learned that here. When someone forgets these ‘social rules’  now… it’s OK.  Well kinda OK. Almost OK.

Tonight, after the initial cream puff shock (honestly, I was the only one that seemed upset about it…) we talked about being truly independent and learning impulse control even when no one is watching… just because it’s the right thing to do (for lots of reasons.. weight and health … respect for others… budget…). Impulse control, it’s a work in progress.  Here on the Hill, we are mostly still in the ‘not wanting to get in trouble from roommates’ stage.  But now, everyone is somewhat willing to at least admit that that’s the motivation, especially after an actual back and forth conversation based on mutual respect and trust (lectures don’t work!  and they shouldn’t..).    That’s progress, really!

But back to the cream puffs…. In 1990, as a reaction to the excessive amount of control that some service providers exert over the lives of the people in their care, a paper came out in the Journal of Applied Behavioral Analysis about the right of a person with a disability to ‘eat too many doughnuts’ if he or she felt like it, to be balanced with the need for efficient habilitation (habilitation=support from staff)  in making safe and healthy choices.  Here is the link to the article:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1286212/

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Although dated, the article itself makes some good points.  For a long time however, I have felt that the term ‘the right to eat too many doughnuts’ has been misused by well-meaning non-disabled ‘advocates’ who want to ensure the rights and self determination of people with disabilities.  It seems to me that it is over -simplification to encourage a person with a disability into choices that he or she may not have wanted to make if given more information about the consequences of that choice in the first place. (Yes, this is one of my soap boxes!).

It is a privilege now to be here at the farm, in this community with the guys, where the passing of time has allowed the natural consequences of our choices to be well-understood. And what are the results of this knowledge?  Sometimes we eat our share of cream puffs.  Sometimes, well, we sneak more than our share. And sometimes, we bargain our way into getting somebody else’s share if we have something they want more.  Fair is fair!

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And every so often, somebody blows his entire budget, or his diet, on a pig-out party and spends every last cent on large quantities of chips and soda and ice cream.  And the best part? Now the experience is always shared with others …. it’s way more fun that way….and it usually  involves a Dinosaur Discovery or Sci Fi Channel marathon and a big mess to clean up in the living room.  Tomorrow.

and THAT is CHOICE.

creampuffs

I just ate three cream puffs while writing this. I really want more.

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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

 

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.

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

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