Who’s in Charge?

It seems like a simple question.  When a group of young adult guys with autism are living independently but require additional daily supports ……  who is in charge?   

It definitely is not such a simple question.

Everyone involved has a say, but who makes the final decisions?  The parents.  The support staff.  The support staff’s agency.  The bossy big sister roommate (that would be me).  The landlord (uh, that’s me too). Society. The guys?

Everyone wants to be in charge of his/her own life.  Everyone has that right. OK great.  Let’s say we try that.

Let’s stay up until 430AM playing this video game and then sleep all day.  Oh wait, it’s 9AM and my support person is here.  I don’t feel like doing anything, could you just go home?  What, you depend on the money, this is your job?  Yeah but I’m YOUR BOSS and I say go home.

You want to help me find a job?  I don’t want a job. I get enough money from social security and food stamps to pay rent and eat.

No, I haven’t showered.  No, I haven’t done the dishes.  No, I haven’t cleaned the bathroom.  Yes, I guess the garbage is overflowing.

no… this is not a real picture from the house

I don’t feel like cleaning up, you are my staff so please take me to the mall.

I’ll  just eat ramen, chicken flavored only.  And popcorn.  And drink Dr Pepper.  Yeah, I gained 75 pounds this year.

I feel terrible.  I’m going back to bed.

Hmmm… this definitely is not going to fly with the parents.  Be back home with Mom in no time.

OK …let’s try the parents.  ‘You have to go to bed by ten, are you brushing your teeth? wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night, and here, use this new quilt on your bed it matches the furniture better.’  ‘Oh, and I am calling your support staff to tell them that they have to teach you to cook  chicken cordon bleu.’

…What ABOUT the support staff? (or the ‘bossy big sister’ housemate?)… ‘You have to go to bed by ten,  brush your teeth, wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night,  and you have to learn to cook  chicken cordon bleu.’

ugh,  you  sound just like my mother….

Wait, I thought I was going to live independently?

Maybe it should go something like this……

‘My parents spent a lot of time and money helping me to get set up in my own home, I should make an effort to be responsible and considerate.  I’ll put some time in every day to learn how to take care of my home, but then I’d like my support person to take me to the mall. I hired my support staff, so it is my responsibility to be available (and awake) during the hours they are scheduled.  But on Friday  nights, I am going to stay up most of the night playing video games, and I just might sleep all day on Saturdays.’

‘I hate taking showers because I don’t like to be wet. But nobody wants to be near me when I stink ,and I do want friends.  I live in a house with other people, it’s not fair to make them put up with a smelly house.  But I refuse to shower every day, three times a week is enough’.

‘I am NOT making my bed, I’m keeping the old sweatshirt, and I am having dessert every night … but only after I eat a real dinner, because I do feel better when I eat real food. Sometimes I am going to eat dessert first. And there is no way I am using that ugly quilt from my mother’.

It’s all about compromise.  And when the rewards are an independent life and new friends, it feels worth it in a very short time (give it a year, that’s not so long).

Mom, however, may never get over the quilt thing.

As for the landlord, she gets to insist that the garbage gets removed. She cannot tell you what time to go to bed.

this isn’t a real photo from the house either. We only have one trash can… but sometimes, that one trash can looks like this

And society? the rules say that you have to drive on the right side of the road in the U.S., and you cannot walk down the street in your underwear.  You don’t get to change that just because you have autism.

and these are the things that we talk about during dinnertime around here….

Just for the record…..  It took a year or so, but here at Juniper Hill we are resigned to the fact that we just can’t stay up all night and still function with our staff the next day, so we make an effort to get some sleep.  We like the attention we get now that we’ve lost some weight because of a better diet.  And we’ll shower a few times a week just so the ‘bossy big sister’ will let us in her van to go grocery shopping.

‘More Rules than Jesus’ (today’s Juniper Hills quote of the day)  …Last night we were talking about the new ‘house rule’ that the TV, computer and video games have to be off during the week when it is before 2PM, (which is the time when the support staff all leave), to be considerate of others who are working around the house.  So Jose, one of our devout Christians, says…’ I wish I lived with Jesus, he doesn’t have so many rules’.

Hmmmmm…Not sure if the Pope would agree!

and guess what?  it was ANDY’s idea to learn how to make chicken cordon bleu (‘you know’, he says, ‘that chicken with the cheese and ham rolled up inside’) and he picked up the phone and called his mom for the recipe. IT WAS AWESOME.

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.

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!

Holidays and autism: free-to-be age inappropriate

Yesterday morning, Brent arrived at the main house at 700 AM to search for hidden easter eggs, something he has done with our family for 25 years.  He wore bunny ears, and found every egg but one (hard-boiled, and yet to be found, ugh) of the 3 dozen we colored the evening before.  His giant Easter basket (another 25 year old tradition) contained all the usual chocolate eggs and bunnies, jolly rancher jelly beans, and a few kitschy plastic Easter toys… but the best part these days are the things that he buys himself, wraps up, and gives to us the week before, to make sure the ‘easter bunny’ puts them in his basket.

Brent as a Hershey’s Kiss

As he has gotten older, he has taken matters into his own hands, refusing to take any chances that the holidays won’t happen the way he wants them to. He spent many years tormented with the possibility that something would happen before the big day came…. Christmas, Easter, Valentine’s, Halloween, May 10 (his birthday).  For a month leading up to any event, his anxiety was through the roof and he would melt down at the smallest disappointment. Not any more.  He has figured out that if he just does it all himself, he doesn’t have to depend on any of the rest of us to do it right.

He buys himself birthday presents and Christmas presents, wraps everything up, and hands them to people weeks before the actual day, and instructs them to give them to him on the holiday itself. It’s not that we would ever forget a present for Brent on any of these occasions, EVERYONE that knows Brent loves to get him things on holidays… he gets so much pleasure out of a box of Lucky Charms cereal, or a ball of yarn or a key to your car.

But he just has to be SURE. He remembers a time when he was told that holidays were for children, that he was getting too old to trick or treat…. he remembers a time when he heard rumors that Santa and the Easter Bunny were not REAL, and he doesn’t want those times to ever come back.

Twenty five or so years ago….. as a young and inexperienced student of ‘behavior modification’ for people with intellectual disabilities, I was trained to teach ‘QUIET HANDS’. …  and ‘age-appropriate’ behavior…. to facilitate ‘fitting in’ with society.  I didn’t question this, back then. (Oh yes, I question it, now.)

Dylan and Brent 2008

It was my son, Dylan, who made sure, long ago, that we preserved these holiday traditions for Brent.

Brent joined our family in 1984 when he was 16 years old, and by the time Dylan was born… almost 22 years ago… I had already begun to try and make Brent ‘understand’ that he was an adult (he was 21) and that adults celebrate holidays differently from children. There were a few years before Dylan knew what holidays were all about, and those years were frustrating for Brent.

Not to worry, those days are gone forever.

It began with Christmas Eve, with Dylan and Brent putting on their Christmas pajamas and listening to Grandma Bobbie read ‘The Night Before Christmas’ before they went upstairs to Dylan’s bedroom. Brent moved to the spare bed in Dylan’s room for the night.  They knew the rules… they had to wait until 630AM before they could go downstairs to see if Santa had come.  Sometimes they would sneak downstairs in the middle of the night together, anyways.

Christmas 1998

But it was Halloween where we REALLY got creative.  It was fine for a few years when Dylan was really young… but there came a time when I just couldn’t let Brent trick or treat in the community anymore.  You can not imagine how scary he is dressed up as a clown.  Clowns are creepy anyways, but with a stiff autistic gait and no response when spoken to….

So we solved this problem. Brilliantly, I might say.  We had two houses on our lane (and now we have three houses!  last year was great fun!).  Each house has 4-5 doors to the outside, counting the garage, basements, playroom, etc. Brent gets dressed up in his costume (actually, Brent wears his costume for at least three days, everywhere he goes ).  We stay inside the house, and Brent runs around outside of the house knocking on each door and exclaiming TRICK OR TREAT! when we answer with a bowl of candy.  So now Brent gets to Trick or Treat at 13-14 doors, and ends up with a bag full of Halloween candy.  Last year, the other guys on the Hill wouldn’t join him, they thought it was childish.  Guess what?  This year they did.

And as for all of us boring neurotypicals who tried to end this childish behavior?  We are embracing Brent holidays…. and now we get dressed up in our costumes and run around on the INSIDE of the houses…and change our wigs and hats and masks for each door that Brent knocks on.

And yes, each Christmas Eve Brent still packs his overnight bag and walks next

Brent and Dylan, Christmas 2012

Brent and Dylan, Christmas 2012

door to our family home where Dylan is…. to spend Christmas Eve in Dylan’s room.  And my absolute favorite moment of the year is STILL the time that comes on Christmas Eve after Brent reads us ‘The Night Before Christmas’ in honor of Grandma Bobbie… and he and Dylan go upstairs in their Christmas pajamas, and Dylan tucks Brent in and reminds him to wake him up at 630AM (Dylan needs a little help getting out of bed that early now)… so that they can go downstairs and sit together by the light of the Christmas tree lights…. playing with that kitschy singing toy Santa that Brent had on his Christmas list.

 

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!

Entrepreneurship and Autism: goats, sunflowers and giant blankets

Cashmere Cashmere everywhere…on our clothes and in our hair…..

It’s almost time!  Yesterday, clumps of cashmere came off into our hands as we reached out for Johnny CASHmere while feeding the barn animals.  Johnny the goat has the most beautiful thick white coat of curly cashmere, and he was the first to begin shedding last year. We were unprepared for the copious amounts of billowing cashmere in the air for two weeks last spring, as we had understood that we had 6 whole months to gather the cashmere.. not so! Although cashmere goats might begin to shed in December, it is barely noticeable until it all jumps ship within a couple of short weeks in mid March. If you blink your eyes, or if it rains a lot during that time, you’ll miss it!

So we are determined to gather the cashmere this year, before it lands on the fences and branches of the trees, or in the nests of house wrens and chickadees. We have two goat stanchions now, thanks to the handiwork of Brent and Mindy….  the stanchion holds the goat still while it is groomed.  We offer them treats for standing still for us, and we’ll comb them until the cashmere is all safe inside ziplock bags.

Brent in the workshop building a goat stanchion

We have big plans for Johnny’s and the rest of the goat’s cashmere this year! We have been experimenting with felting fiber this past winter, and we are finding that the cashmere felts nicely as a first layer with a top layer of our alpaca fiber.  How does it sound to have a felted alpaca hat with an inside layer of cashmere against your temples?  We think it sounds wonderful. So along with the hats, the guys are experimenting with felted water bottle bags, felted soaps, and felted phone cases.  Add that to our 20 varieties of sunflowers, some hand-built wren bird-houses, and a variety of hot and spicy homegrown peppers, and we ‘re sure to have a fun season at local grower’s markets!

Our first attempt at a felted phone case!

Living independently with autism isn’t just about learning to cook and get along with housemates.  The employment piece is one of the most difficult to figure out.  Paying bills uses up most of the guy’s monthly social security checks, so it sure would be nice to have some spending money! Plus, it just feels good to have a job.  Unemployment among adults on the spectrum is really high.  Navigating social situations…. overcoming sensory issues … finding a job and succeeding in an interview… and convincing an employer that you are worth taking a chance on,   in spite of your differences.  It’s not easy.

No, these are not our hats. We will pick one style and give it a try!

So we decided to take the entrepreneurial approach here on the farm. Last year we grew a small field of sunflowers… 20 different varieties, about a thousand flowers.  The guys were introduced to dirt… on their hands, on their clothes… and they were introduced to sweat!… it is really humid here in Pennsylvania in the summer.  and ….  they did OK!  We cleared fields, formed raised beds, and planted  seeds in rows.  We were rewarded with a beautiful field of sunflowers, and we harvested them, cut off the leaves, put them in buckets and delivered them to friends and local businesses.

We learned that EVERYONE loves sunflowers.  Sunflowers are easy to grow.   Sunflowers are easy to harvest.  We were convinced.  This year, we’ll try succession planting so they bloom over the entire growing season, and we are tripling the size of the fields.

There are several local grower’s markets that we will approach and ask to be vendors.  The sunflowers will be our main product, but we have a good strong start on the fiber items as well. Setting up a table at a market and selling our items and meeting people is actually what the guys look forward to the most… they love to tell their stories. It’s taken a year or so for the guys to embrace this idea…. this was not the dream job for most of them.  But watching Brent and Ray, who love being outdoors, work hard and make handfuls of cash on delivery days last summer… well that was all it took!  We shall see what this year brings, but right now we are all chomping at the bit to get started.

Brent with his new blankets ready for the fair tomorrow!

Presenting at the Reinventing Quality Conference in Baltimore, with the 'Lucky Charms' blanket

We can’t end a post on entrepreneurs without talking about our most amazing entrepreneur here at Juniper Hill…. our wonderful hardworking friend, Brent. Brent has been crocheting blankets for over twenty years.  Originally, he just wanted to crochet blankets for people who would trade him for car keys, his true obsession.  But these last few years, Brent has discovered that he can actually sell his blankets for money , and it has inspired him to work harder and choose his colors more deliberately.  You can learn about Brent on his Facebook page,  Blankets by Brent.  Last year, Brent presented at the Reinventing Quality Conference in Baltimore, MD.  And tomorrow, March 3rd, Brent will be selling his blankets at the ‘Celebrate Differences Film Festival and Art Exhibit’ in Media, PA. He just crocheted six blankets in less than 3 weeks, and they are just gorgeous. He is quite excited!  Although the uncertainty of not knowing whether or not anyone will actually buy the blankets is overwhelming at times for him, he has learned, through constant reminding, that there will be another fair along soon, and more folks to buy his blankets… and a space at a Grower’s Market this spring!

Update** Brent sold every one of his blankets at the fair!  Thanks to all who came out today!!

Bossy Big Sister Live-in Companion

Being the live-in companion to a bunch of guys young enough to be my sons, I had to make a concerted effort to not be the ‘mom’ of the house.  We came up with the ‘bossy big sister’ role instead.

It can be a difficult role to navigate, the live-in person to a bunch of guys who are old enough to live independently, want to make all of their own decisions as young adults, but who are still in need of support in order to succeed.  So I tried to imagine them as younger somewhat annoying brothers who leave their trash around the house, hog the TV, inhale all the good junk food, and who don’t really care if their socks smell or if they have gone four days with out a shower.  Once I got that picture in my head, our relationships fell into place. ‘Self-determination’ is a tricky balance of minding my own business and declaring my right to an odor-free living environment. I have now had a year of practice not saying the first nagging thing that comes to mind as I enter the kitchen and everyone’s dishes are in the sink…with food on them. I can’t ‘demand’..but boy can I whine!

I spent many years in a university setting getting various college degrees.  During this time, I lived with other students in big houses with lots of bedrooms.  Everyone has their own pet peeves in these types of living situations, I was the ‘kitchen police’.  I love to cook…. and I clean up as I go when I am preparing a meal.  I never had a lot of tolerance for housemates who trashed the kitchen, and I still don’t.  So when the guys leave food out, or they don’t throw away trash or wipe counters… I whine until they do. I am still learning to NOT sound like their mothers.

I also am the one to call a house meeting to talk about dinner schedules, household chores, or group trips coming up.  But it is the rest of them that bring up their own pet peeves, and that’s great.  They reprimand each other when the music is too loud…. or if someone takes a giant serving of lasagna or eats too many Clementines.  Trouble is, they sound like each other’s mother when they do it too! Still working on that one.

By the way, these 6 guys are absolutely the best housemates ever.  I have never laughed so hard in my life, or had so many inspiring things happen every day.   Somewhere around mid-summer last year, I began to realize that I was not here doing them a favor anymore, I was not just doing this for ‘other families’ to replicate. How lucky am I… to have not one, but six amazingly loyal, caring , interesting, hard-working and brilliantly funny best friends sharing a home.  Definitely worth a few smelly socks on the bathroom floor.

(coming soon:  how to find and keep a live-in companion for your family member!)  

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