Tag Archives: stimming

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

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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!