Tag Archives: adults

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.

It takes a year… to make a family

Over a year into our project here on Juniper Hill, and the guys are somewhat settled into a routine.  It is a Saturday morning in January, snowy and cold… and we have finished with the morning farm and animal  chores. Brent has made fires in the fireplaces and sits playing ‘Math Bingo’ on the IPAD.  Andy has cooked up a great breakfast on his own… scrambled eggs with cheese of course… but also onions, ham and mushrooms.  Ray is playing acoustic heavy metal music, and no one is complaining.  He is researching information on foxes and dogs on the internet. And Michael is talking about dinner ideas, Saturday is his night to cook.  Jose is with his family at a party this weekend, and Patrick went to his parent’s house to welcome his brother home from Afghanistan.

It sounds a bit like a bunch of college guys, and at first glance it looks that way as well.  Jeans and hoodies, gently worn furniture, popcorn and empty ramen containers in the trash…..and music going, all of the time.  Cluttered bedrooms that could always use a vacuum.

What a difference a year makes…

Just a short year ago... the guys were starting to get to know each other.  They hadn’t really ever cooked a meal, shopped for groceries, kept a house clean, gotten up on their own for a job.  They had never lived closely with peers… real peers…..and they weren’t really sure they even wanted to. As the months went on, they all went through periods of doubt.  Everyone here has ‘issues’.  Everyone here does something that annoys someone else here.  In many ways, it was easier just being home with parents.

But somewhere around early autumn, things started to change.  Two of the guys had already had a serious altercation in July.  That was when we all realized just how much fear and uncertainty was involved in the making of new friends…. and we started to talk about it at dinnertime.  So much trust developed over food!  Within minutes of the incident in July, both guys had been desperate to make amends.  It became obvious to everyone that they all just wanted the other guys to like them, even if the other guys were annoying.  They cared more about friendship than quirks and social missteps. Acceptance and trust, it’s what it’s all about.

Last night, Sunday evening, Patrick came home from being at his parent’s all weekend.  He lives with Brent and Ray in the rancher, with minimal supervision.  His sink was full of dirty dishes, the living room cluttered with Ray’s personal possessions, empty popcorn bags and banana peels.  Patrick and Ray had some angry words, and Ray came down to the other house in frustration.  The rest of us were all there, getting ready for dinner and hanging out.  Within minutes, Patrick came down to the house.  Together in the other room they talked it out, it took all of 2 minutes.  No one else got involved.  Ray went up to their house and cleaned up, and after dinner Patrick, Ray and Brent went up to their house together….  Patrick shared his Girl Scout thin mints that he had bought from his niece, and they polished off the entire box together.

Now that’s family…