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An open letter to ASHA advocating for the right to a communication method of choice

Posted on June 25, 2018 | 2 comments

Recently the American Speech- Language-Hearing Association put forth the following statement:

“It is the position of ASHA that the use of RPM is not recommended.  Furthermore, information obtained through the use of RPM should not be considered as the voice of the person with a disability.”

Link to full statement: Here

Brent (an original member of Juniper Hill Farms) and I have submitted a response to this statement below:

To the ASHA Board,

This is a response to the ASHA committee’s statement regarding the use of RPM as a teaching and communication method.

I am the founder of a farm which has been home to five men with autism for eight years. For 40 years I have worked in the disability field, the last fifteen specifically in housing for adults wishing to live independently.  My family member, Brent, has been spelling on a letterboard for four years. He has little spoken language. He joined our family 30 years ago at the age of 18.

At 49 years old, Brent has a perspective on life that is different from his younger autistic non-speaking peers. He has been out of the education system for 30 years. Until four years ago, I believed that I had provided him with a fulfilling life of his ‘choice’. I now know that he is a poet, and a lover of math and science who wants a full academic education. He wants a loving relationship with a female partner. He wants what society considers a full life.

For him, spelling has not only been life-changing, but also life-saving. Two years ago, he spelled ‘STOP I AM IN NEED OF MEDICAL ATTENTION’. He described his symptoms, of which we were completely unaware. He was subsequently diagnosed with testicular cancer. Since then he has undergone surgery and regular medical exams with blood tests, Cat scans and X-Rays.

Below are his words, after being declared ‘cancer free’.

MY DESIRE IS TO ADVOCATE FOR COMMUNICATION SUPPORTS AND HOUSING FOR ADULT AUTISTICS. LIFE IS WORTH LIVING NOW THAT I HAVE COMMUNICATION. COMMUNICATION JUST SAVED MY LIFE. I FEEL GRATEFUL BECAUSE I TOLD MY DOCTORS WHAT WAS HAPPENING.

I AM THE MOST LUCKY MAN EVER. BUT THE ONES IN SILENCE ARE NOT SO LUCKY. THEY MIGHT NOT EVER BE ABLE TO TELL SOMEONE THEY ARE SICK. THEY MAY NEVER SAY I LOVE YOU.

I NEED TO MAKE SOMETHING OF MY TIME ON EARTH. THE WORST THING IS TO BE A VISITOR TO LIFE INSTEAD OF A PARTICIPANT. I WANT TO ADVOCATE FOR OTHER INDIVIDUALS WHO ARE TRAPPED IN THEIR OWN BODIES. THEY MUST FEEL THE SAME LONELINESS I DID. TIME TO JOIN THE CONVERSATION INSTEAD OF BEING THE CONVERSATION.

THE SAD REALITY IS THAT MANY HAVE GIVEN UP ON ADULTS. OUR LIVES MATTER. THIS IS MY MISSION NOW. THE ADULTS HAVE GONE SILENT TOO LONG. MY QUALITY OF LIFE HAS CHANGED DRAMATICALLY SINCE I STARTED SPELLING .

NOT WITHOUT SPELLING WOULD I HAVE BEEN ABLE TO GET THE MEDICAL HELP I NEEDED. JUST HOW MANY HAVE DIED OR SUFFERED JUST BECAUSE THEIR OWN BROKEN BODIES CONDEMN THEM TO SILENCE?

THERE IS MUCH WE NEED TO DO. LET’S REACH OUT TO SILENT ADULTS AND TEACH THEM TO SPELL ON THE LETTERBOARDS. TEACH PARENTS, CAREGIVERS AND THOSE WHO WORK WITH MENTAL EDUCATION THAT ONE IS NEVER TOO OLD TO LEARN.

We respectfully ask you to consider withdrawing your statement on RPM.

Sincerely,

Diane Belnavis

Brent Sullivan

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

Posted on August 27, 2014 | 15 comments

cream-puffs-and-chocolate

 

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/

krispykreme

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!

dinosaur disc

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

Posted on May 24, 2014 | 10 comments

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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

 

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Posted in Adults with Autism, ASD, Asperger's, Autism, cooking, Employment and Autism, Farmer's markets, Farming, Fiber, Fiber and Felting, happiness, housing, housing and autism, organ transplant, relationships, staff, Sunflowers, tolerance, travel, Uncategorized

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Juniper Hill two years later.. a reflection on what we’ve become

Posted on September 30, 2012 | 3 comments

Shelly, the crayfish

Happy Anniversary to us!  Tomorrow is Ray’s 27th birthday… and it is this weekend that he moved into the green house on Juniper Hill, just two years ago.

He moved in with a blue crayfish, giant bins of LEGO/Bionicles, plus one GIANT bin which contained the cardboard /packaging of all of his LEGO/Bionicles …. because they have information on the cardboard that he wants to remember… just in case.

Jose had also just moved in,  to the cottage at the top of the hill where he  joined Brent who had been alone since his housemate of 12 years had moved out three months before. Andy had been visiting for weeks at a time during the summer, and had decided that he, too,  could leave his parent’s home after all, and move out on his own.

And so the ‘core four’ began their life together on the hill…. navigating social interactions  and the well-stocked pantry of available food. That first weekend all together, Ray asked if his best friend could visit for the weekend … and so we met Michael. He became a regular visitor, and moved in some months later while he finished out his last year at school.

October, 2010

We had a plan, my friend Mollie and I.  We would all live happily together and grow giant fields of sunflowers and other cut flowers for bouquets, and we would work the fields with help from all of our other friends who happened to have a disability.  Our flower business would thrive, and we would make flower arrangements for events, wreaths for Christmas, and hand deliver bouquets for all holidays. We would have herds of fiber animals, and after we sheared the alpacas and combed the cashmere goats and angora rabbits, we would process the fiber and spin it into luxurious skeins with our spinning wheels as we sat by the fire on cozy winter nights. And then come spring, we would travel all over the East Coast selling our wares at farmer’s markets…. and we would earn enough money for all the guys to have a decent income, plus become a non-profit and get start-up grants to get it off the ground.

Ready… set… go!

Go?

Reality check.

Live happily together?  But he’s LOUD.  He hurt my feelings. He stole my … _____ (LEGO, money, chips, favorite shirt).  He hogs the TV.  He hogs the computer.  He swears. I hate his music.

Grow giant fields of perfect flowers?  Not if the groundhogs and deer, weeds and stinkbugs have anything to say about it.

Work in the fields? In the dirt?  With bugs?  In the sun? For how long?

The toilet’s broken again…. a gallon of milk, a dozen apples, and two bags of chips just disappeared in an hour…… and there is a mystery $300 dollar overcharge on the Comcast bill.

Farmer’s  Markets all over the East Coast? You mean, like when we are not busy weeding?  Like on Saturday mornings? When we are sleeping until noon because we are tired from our busy week?

It’s midnight and the dishes are done and the kitchen is clean and the guys seem settled and getting along… guess I should write that grant now.

And weren’t we going to learn how to spin?

Sigh….

Here’s what we DO have here on Juniper Hill, after two years.

A growing community of friends who happen to have autism, or other disabilities.  A group of friends who care about each other, who trust each other, and who get together once a week to work for an hour or so, here in the fields and then hang out over a fantastic lunch made by Jose, who loves to cook and feed people.

A group of WWOOF (http://www.wwoofusa.org/index.aspx) volunteers who help out on the farm when the guys just can’t (those bugs and that dirt….)

A medium sized field of flowers, but sunflowers only, kind of weedy.

A place at the local West Grove Farmer’s Market, which runs on Thursday afternoons…. only. Close to West Grove’s ice cream shop, the library, and Chinese restaurant… for market breaks.

the market ….where we sold all of the sunflowers that the groundhogs didn’t eat. and where we show off our future with fiber (cause this coming year, the guys are really going to learn to love making things out of felted alpaca! Right?!)

One toilet fixed, one more to go.

No start-up grants or non-profit, went back to working instead.  So I now help other people with autism and other disabilities, to set-up their own independent housing in the community.  I have a regular paycheck, and it pays for fencing.

And here on the hill are a group of guys who have learned to live together, play together, share their space, their food, and the TV. They take care of the farm animals, do daily farm chores, learned to cook, have great support staff who have hung in there for the entire two years….

they have lost a ton of weight and learned what healthy eating choices are, found volunteer jobs and paying jobs… and they are happy, self-confident adults who are great ambassadors of autism when we are out on our many wonderful trips together, courtesy of AALIVE (http://www.aalive.org)

It was always supposed to be about the GUYS.  And it is.

And no, I haven’t learned how to spin.  But the WWOOF volunteers came with a spinning wheel and cozy winter evenings are coming up… who knows?

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Vacation at the Beach, Autism Style

Posted on July 8, 2012 | Leave a comment


The Juniper Hill Gang went to Sea Isle New Jersey for a week at the beach courtesy of the A.A.L.I.V.E. organization, and our friend ‘Dude I’m an Aspie’, Matt Friedman joined us and wrote about it in this song!

DUDE, I’M AN ASPIE.

Thoughts and illustrations on living with Asperger’s Syndrome.

Sunday, July 8, 2012

Summertime Aspies, Aspies in the Summer (Time)

Gather round, dudes… it’s time to sing along to the true story of summer vacation fun with a bunch of Aspies, to the tune of Summertime Lovin’, Lovin’ in the Summer (Time). Careful, don’t get it stuck in your head. It goes like this.Summertime Aspies, Aspies in the Summer (Time)

It’s Summertime, and you know what that means,
Take some Aspies to the beach, gonna do some Aspie things,
So come on down to the city of Sea Isle
It’s “Jersey Shore,” done Aspie style.

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
Nothing else could be more fine.

We got eleven people underneath one roof,
Gotta spend a whole week with all these goofs,
And the TV’s broke, and we don’t know who dunnit,
So we’ll have a quiet house, gotta go outside to fun it.

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
Don’t wanna hear nobody whine.

Fireworks on the beach, we are here to see,
But sitting in the sand does not please me.
Cause it’s full of shells, and they’ll hurt my butt,
And my knees don’t bend, and I’ll need help getting up,
How long does this last? I wish I hadn’t stayed,
I’d rather be on the boardwalk inside the arcade.

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
Anybody got a dime?

Now we’re goin’ on a boat with Captain Rick,
But the motor is loud, so we won’t go quick,
And the flies are attacking, and they wanna bite,
But I’m not goin’ down without a fight,
Flip flops and shirt make a good defense,
How you like me now, flies? It’s gettin’ intense,
WHAP WHAP WHAP! And the fly is dead,
But he’s back with reinforcements, and I’m full of dread,

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
You whapped me on the knee that time!

Now we’re jumpin’ off the boat at a beach we’ve come to,
And we hear a splash, and then Wolfie says “Ooh.”
He tried a cannonball in only three feet deep,
And nobody even saw him leap,
His ankle looks broken but he feels fine,
So we turn the boat around, cause it’s not a good sign,
And it’s off to the hospital to get him all fixed,
But Wolfie stays calm and up to his old tricks,
And it’s “Hello Doc! Hello Nurse! Oh, I like your hair!”
While the rest of us worry, he hasn’t a care,
Watchin’ Troll and QVC in his hospital room,
And we all hope Wolfie gets better soon.

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
In two months he should be just fine.

Now it’s off to Funland amusement park,
Gonna ride the Caterpillar till it gets dark,
And I’ll pat you on the head, then run away,
Why do I do it? Well, who can say?
I got my new ID, to go clubbin’ around,
But my picture’s from before I lost a hundred pounds,
But I don’t care, the ladies love my new physique,
And I’ll even take a shower, first time all week.
Down at the beach, the water feels so fine,
And I caught a kingfish with a fishing line,
But I threw him back cause he was too short,
So I’ll go and ride the waves on my spider boogie board.

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
And a playful slap on your behind.

Gonna trim my nails so they look like claws,
And walk like a dinosaur just because,
And it’s down to the arcade to scavenge for change
Till I get enough tickets for a prize to exchange,
And I’ll smash some flies in their front window,
They even offered me a job but I had to say no,
And I’ll tell you ‘bout Star Wars and sharks and blood,
And eating poisonous bugs and banister wood,
About my special interests, I could go on all day,
Even if you start to walk away,
I could go on and on, and on, and on, and on, and on, and on…

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
Does a cephalopod have a spine?

Now it’s time to go back home to Juniper Hill
Cause we’re all out of money and we’ve had our fill,
It was so much fun, and we won’t forget,
Look! All along that couch had a fold-up bed!
It was a trying week but we all survived,
And thanks to our hosts, the folks from AALIVE,
Living with autism can make you wanna hurl,
But it’s who we are, we wouldn’t trade it for the world.

Cause it’s Summertime with Aspie-ee-ees,
Aspies in the Summertime.
Summertime with Aspie-ee-ees,
Aspies in the Summertime!

The Summertime Song belongs to JG Quintel/Cartoon Network.

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Holidays and autism: free-to-be age inappropriate

Posted on April 10, 2012 | 9 comments

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.

 

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Entrepreneurship and Autism: goats, sunflowers and giant blankets

Posted on March 2, 2012 | Leave a comment

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!!

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Bossy Big Sister Live-in Companion

Posted on February 23, 2012 | 2 comments

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!)  

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

Posted on February 20, 2012 | 4 comments

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

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