Category Archives: Support workers

The importance of Waffles: a guide to making a happy home

Posted on April 16, 2013 | Leave a comment

homealoneLots of after-dinner belly laughing, whoops and hollers the other night, along with a few expletives directed at the bad guys… it was Home Alone 1 and 2, back to back.

All staff and visitors were gone after our volunteer’s ‘Opening Day’ on the farm and it had been our first sunny 80 degree day…. what better time to watch Christmas movies? Tired from the hot but awesome hike to the creek after working,  we foraged on lunch leftovers and sat down for a spontaneous movie night and miraculously, everyone actually agreed on Home Alone as being worth their time. Life was Good.

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The trail to ‘Dylan’s Creek’

Superstorm Sandy blew through our corner of Pennsylvania without much fanfare last fall.  But here on the Hill, the anticipation of Sandy for the entire week DSC_0062before she arrived was pure torture.  The best thing to come out of it (besides Brent’s amazing ‘Pocket Radio Hurricane Mobile’ that he made to distract himself from the weather channel), was my inspiration to blog here about the importance of weather and all those other seemingly harmless things that get in the way of an independent life and make things difficult for these guys.

But now, after a hike to the creek and spontaneous Home Alone togetherness along with last week’s 500th birthday party of the year (well, not really 500),  I’m thinking a blog about all those little things that make an independent life so much better is a must. You see, these guys here and others like them, the ‘in-betweeners’, can survive in the community living semi-independently. With a knowledge of basic safety and microwave use, and a staff person that comes in regularly…. these guys can survive with that.   But in order to thrive, we are finding that there are lots of little things each day that make life better.

Take waffles, for instance.  Not the frozen kind… although they should be on thewaffles1 list as well because a quick breakfast of toasted frozen waffles when you are in a rush is pretty good. No, I’m talking about the kind made from scratch, right out of Joy of Cooking..thick but light and fluffy, and golden brown… a bit crispy on the outside….mmmmmm.

It all started the time we had our friend Dude I’m an Aspie Matt Friedman over for a Sunday brunch of Chicken and Waffles.  It is just an awesome combination and we are all still talking about it.  So I started mixing up the waffle batter (minus the chicken) and leaving it in a bowl next to the waffle maker on saturdays…. (the ‘if you build it, they will come‘ kind of teaching model :) ). It worked with Ray, he just started taking the time to cook them.  Around here, it only takes one person to start a trend.  Pretty quickly, ‘waffle envy‘ set in and everyone joined in.  Tonight when the leftover batter was gone, Jose said ‘These are much better than the ‘others frozen’. How do you make them?  I want to learn‘.  So I helped him step by step, wrote the recipe in the ‘NOTES’ on the house IPAD…. and I bet there’s going to be a lot of waffle batter in the fridge from now on.

Of course, you can learn to live independently without homemade waffles.  But why would you want to?! We started making a list of all the other things that add to our lives here, our ‘How-To’ Guide’ for other folks out there who are planning to live on their own someday (some of our list is more for the country living folks…there are different ones in the city!).  And here is our list below (starting with the obvious)

Holiday and birthday celebrations are a given, of course! Brent’s obsession with every holiday and Andy’s eye for important dates coming up on the calendar ensures a celebration for each and every one.  The crowd of friends DSC_0038who make it a habit to drop by on Wednesdays have pretty much all requested that their birthdays (and their staff’s) be celebrated as well. So we have been blowing out candles almost weekly all winter long this year. It’s just the best thing about Wednesdays !

A home where friends and neighbors drop by …now that spring has arrived, we look forward to Wednesdays when our friends come to volunteer… and the group continues to grow.

Fun trips to cool places.  Trips and leisure time activities off of the farm, with the Juniper Hill gang all together…  shared experiences truly build friendships.  We know that here.DSC_0357

Dessert ….. especially if it involves whipped cream and fruit served in stem glasses.

and Puppies… or other pets.  Nothing like puppy cuddles.  Now that Ray’s puppy Hahli is here, our Juniper Hill ‘village’ is helping to raise her together. Alice, our wonderful dog-like tuxedo cat, is always looking for a lap to nap on (which is very easy to find here.) and Bruno, our almost 30 year old cockatiel, always chimes in along with the dinner ruckus.

and there are lots of less obvious things that make us feel like we are Home:

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Andy keeps the bird feeders full

Bird-feeders (cardinals in the snow, squirrels doing acrobatics to steal the bird seed)

Bingo tournaments (with prizes from the dollar store)

House plants (especially if they flower, like Christmas cactus)

Your own seat at the dinner table

Your favorite fork, perfectly sized and bent (and favorite cup, knife, and spatula.. )

A Water Cooler… because for some reason, a water cooler makes it more fun to drink water.

A Creek to walk toDSC_0212

Rubber boots (to walk in the creek)

a House IPAD  …this needs it’s own blog post, so many uses!  Fun apps (Math Bingo!), email, facebook, YouTube, Music, detailed chore lists for staff to use when teaching skills, privacy internet (explanation?  some other time), and now waffle recipes at the tip of your finger.  Wow.

Photos on the fridge … family pictures, pets, our trips

Bus charts.. and other charts.  Visual lists on the fridge to check off.  Brent’s bus chart keeps him focused on going to work and helps him to board the bus, even when there is a new bus driver.

Christmas lights all year long.. just one strand?… OK so we changed the color and added red chili peppers so they don’t look Christmasy…  it sure makes it cozy in the evening. We don’t think it is tacky.

Little pads of paper or notebooks.. and pens…lots… because everyone likes to make lists, draw, and write down facts (that they are reading off the IPAD)

Chickens.  Highly underrated, entertaining creatures in your yard, especially the little bantams.  Fresh eggs every morning.  (well, probably will not be high on most people’s list,  not really at home in the city!)

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Saturday morning cartoons, forever….

Bacon.  self-explanatory.

Frozen strawberries in the freezer… so you can always make a smoothie.

Spontaneous movie nights.  A VHS collection and player (I don’t know why. but it’s true).  and also Netflix streaming all kinds of movies to please everyone… from Abbott and Costello to Anime.

TV Blankets…. to curl up with on cozy winter evenings.  Preferably a Brent’s Blanket .

Tray Tables… cause sometimes you eat dinner in front of the TV.

Picnic Tables… cause it’s great to eat outside in the summer.

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A Grill.. even a small one.  for the hotdogs and hamburgers that you are going to eat at the picnic table.

A Crockpot.  Throw in meat and vegetables at noon and cook it ’til dinner, and the house smells delicious all day.

A Vegetable garden.  with tomatoes, and potatoes.

Night lights, and a guy with OCD who turns them on at dusk, as well as turning on a light in each main room in the evening (and the Christmas light strand of course!) … absolutely wonderful to come home to after work.  Without him, the guys would sit in complete darkness with just the light from the television.  Really.

A Pond, with fish.  We have been working on this for two years, soon to be finished. We will let you know how nice it makes us feel, soon.

A Fireplace and someone who loves to build fires every night... and a place to sit by it with a book.

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A Fireplace that streams on Netflix. Apparently almost as good as the real thing around here.  Check it out!

Lots of tea choices, for a hot cup of tea on cozy winter evenings in front of the Netflix  or real fireplace. Especially Tension Tamer, Sleepytime, Peppermint and KAVA Stress Relief.

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and especially Music... really cozy when it comes from three directions in the house all at the same time… heavy metal from the basement, Christian rock in Spanish from upstairs, classical or jazz ‘soft music’  from the living room when it’s Andy’s turn for the IPAD.

We could keep going…

As time goes by  here on the Hill, with the same guys and staff becoming a family after two and a half years, new traditions/habits/routines continue to evolve. We realize them in retrospect!

So go out and buy a waffle maker. Here is our recipe (simplified from Joy of Cooking): Turn on the wafflemaker. Put 2 cups of flour, 2 teaspoons baking powder, 1/2 teaspoon salt, 2 tablespoons sugar in a bowl  and MIX.   Break 3 eggs into center of dry ingredients and MIX (just eggs), then MIX 2 cups of milk in with eggs, then MIX everything together.  Add 1/2 stick of melted butter and you guessed it… MIX. Put a cup of batter on the pre-heated waffle maker, and set the timer for 5 minutes.  If you don’t have syrup, yogurt or jelly works too!

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Dylan’s Creek

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Posted in acceptance, Adults with Autism, Asperger's, Autism, cooking, friends, friendship, Holidays, housing, housing and autism, Living independently, Support workers

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Standing in the way of independence: it isn’t really the money.

Posted on December 5, 2012 | 2 Comments

funding‘Our son can’t live on his own, he doesn’t have government money for supports’  Our daughter doesn’t get enough in Social Security to be independent’ ‘They’ve cut funding for disabilities’ again, we are on the waiting list, our son is still living at home’  Funding. Funding. Funding.

The autism blogs and parent listservs are filled with information about transition and adulthood and the financial burdens that will come along with the desire to live an independent life.  In this economic climate, government funding is not prepared to support the overwhelming numbers of autistic young people coming of age. The unemployment of people with autism is higher than any other disability. So how will all of these young adults, these ‘inbetweeners’ who could learn to live independently with some supports….ever be able to afford to live on their own, out of their parent’s house?

house_keysIt is a legitimate concern of course, and money will be tight.  But given a certain set of circumstances, it is not impossible to make ends meet.  Supplemental Security Income, or SSI, is almost $700/month and many people with autism will qualify for it. Sharing your home with someone will help to lower your rent. You qualify for SNAP, or food stamps…. around $200 a month if most of your income is from your SSI.  Sometimes your county will step up and award some limited dollars to pay for supports to come in and help a few hours a week. There are jobs out there… maybe not very many that will entirely support an independent life, but jobs that pay enough for some spending money after most of your SSI goes towards bills.

I really don’t think that money and funding are the main impediments to independent housing. They’re just the first consideration……. and just the tip of the iceberg.

What I really wanted to talk about here are all those other things…..

Here is my own personal ‘Top Ten (plus nine)’ list of impediments, after 14 years of helping people with disabilities live on their own.

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Thunderstorms 

Support People who don’t show up

Transportation

Lost Mail

Support People who watch TV, text and read their email and are basically glorified babysitters

Not knowing what to do with leisure time

Junk Food

Too Much Food

Video Games

Support people who take you to the mall but don’t notice that there is no food in the house, a week’s worth of dirty dishes in the sink, and a negative balance in your checking account.

Landlords who don’t fix things

Your relationship with your housemate

Your Parent’s relationship with your Housemate’s parents

Medication..remembering to take them… refusing to take them… or improperly prescribed.

Broken Toilets, Clogged Drains, Lost Keys, Broken Dishwashers, Broken Washing Machines and Dryers

Porn. and mystery charges on the Comcast bill. Hundreds of dollars worth before you thought to put a PIN number in.

Self Control.. (with food and video games and porn)

Loneliness

Thunderstorms, really.

Take thunderstorms.  Alone in a house, your house.  Lightening and thunder happening seconds apart.. that means it’s close.  The power is out and you don’t know when it will come back on. What if it NEVER comes back on?

Or unopened mail.  or confusing mail.  or misplaced mail.  When you are living with supports such as SSI or food stamps, or prescriptions, or an ISP… you get lots of mail and it requires lots of RESPONSES in a timely manner or you will lose those benefits.

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Food.  Eating too much of it.  Eating junk food… only.  It’s all just right there in front of you in the grocery store… and you have $100 in food stamps on your card.

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Support People. Relationships. Medication.  and Porn.  These all deserve their very own blog post….   Better save these for next time.

and with all of these things to worry about, do I really believe this can be done?

ABSOLUTELY!

Waiting for Hurricane Sandy

Waiting for Hurricane Sandy

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Posted in Adults with Autism, Asperger's, Autism, Employment and Autism, Funding, housing, housing and autism, Living independently, Support workers

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Fear and the fragile friendship

Posted on November 13, 2012 | 5 Comments

New York ComicCon 2012

Michael called tonight… thankfully at a very reasonable 730 PM, not midnight.  He touched base with Ray, as he does almost every day (too often at midnight).  They share the day’s HALO/Bionicle news, the latest on the Disney Star Wars’ purchase, and the plan for the next get-together, as distant as it might be.

On the Farm

Michael and Ray have been friends for four years.  They met by chance at the Goshen Country Fair, where Michael and his family volunteer each year.  At the time, Ray was living independently in the same town. They struck up a conversation, found they had many interests in common, were able to plan and get together on Friday nights for the next two years…and the rest is history. Michael lived here at the Hill for a year while he was finishing up his transition program in high school, and now lives back home with his family about 40 minutes away though he makes it down to the farm on weekends regularly for HALO marathons….

These two best friends share their interests, their possessions, often their money, and their secrets… and they happen to also share an autism diagnosis. They help each other through their sensitivities, annoying habits and meltdowns, and almost always remain true to the other, no matter how disruptive they become.  They have two very very different dispositions, yet it works….  They are a couple of lucky guys, and they know it.  Many folks, with or without a diagnosis, could benefit from their recipe for true friendship.

What is this recipe exactly?  Patience, trust, familiarity, tolerance, compatibility, convenience…. and TIME……all of the qualities that one would guess….. plus a healthy dose of luck and  ’perfect timing’ no doubt.

Now if only we could replicate this recipe again and again.

Too often, what I see with folks on the spectrum and other disabilities is a desire for friendship, but an overwhelming fear of intimacy, change, and sensory overload. Confusion about what friendship is, and what expectations are involved. An ambivalence about leaving that comfort zone where one can immerse themselves in special interests without interruption…. and a need to be alone to control all input. Sometimes it can be just a simple preference for convenience over company.  The fear of disappointing, and disappointment. The fear of the unknown. The fear of vulnerability.

FEAR.  That’s a big one.

Things don’t always go as smoothly as Ray and Michael, when forming a new friendship.  And this week, I have a new respect and appreciation for the bond that they share, because I tried to help a couple of other guys get started with a new friendship.

Check out this wonderful movie about a friendship like this…
http://www.youtube.com/movie?v=tDJZO-QUS2A&feature=mv_sr

Several months ago, nurturing these types of friendships became my livelihood, when I went back to helping others …. young folks just like Ray and Michael and the Juniper Hill guys….  set up independent living in the community.  It’s not so difficult to find a place for people to rent, or to make sure they have the supports needed (help with cooking, cleaning, budgeting)….. or even to find two or three people who want to live in the same place at the same time. Sounds complicated?  It’s the easy part.

After the furniture is moved in and the kitchen is stocked, real life begins and new housemates unfamiliar with each other have to spend lots of time together. It’s not so difficult, when the support people are there too.  Helping with decisions about what to eat for dinner, where to move the couch, what to watch on TV.  Helping with facilitating conversation, especially. But then the support people leave, and the chores are done, and no one is reminding anyone of what ‘s next.

It’s scary, but it’s fun.   It’s confusing….but it’s exciting.  Its empowering, but at the same time old insecurities surface.  It’s evolving, and it takes time… lots of time… for trust to develop.

And sometimes before that trust develops,… the whole thing just blows up. And then you have to help them pick up the pieces, and figure out how to help them move on. And that has been my life these past two weeks.

Ray and Michael, you sure made this look easy.  Keep taking care of each other, you are truly lucky.

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Posted in acceptance, Adults with Autism, Asperger's, Autism, friendship, Living independently, Support workers

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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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Posted in Adults with Autism, Asperger's, Autism, Farmer's markets, Farming, Fiber, Fiber and Felting, friendship, Funding, Living independently, Sunflowers, Support workers, Uncategorized

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Jose’s Life Worth Living…the success story of a new kidney, and new life

Posted on August 17, 2012 | 2 Comments

Next month we celebrate six years of Jose’s new life, given to him with a kidney transplant on September 20th 2006, his 18th birthday.

You might have seen the national headlines this week, about a young man here in Pennsylvania being denied a heart transplant because of his autism… yes, it actually states ‘autism’ as a reason in the doctor’s report.

Here is the link to the story:

Autistic man denied heart transplant

We are thinking about this a lot here on Juniper Hill, and this is why.  Our wonderful friend, Jose, was given a kidney transplant six years ago, and now he has a  a rich, fulfilling life.  A life filled with friends, family, adventure, new experiences, a happy home, and so much more to look forward to, now that he has been given this second chance.

Jose also has an intellectual disability.

Jose is not on the autism spectrum, but his best friends and housemates here on the Hill, all are. And Jose would like everyone to know that his life is important and worth living, and if his autistic friends were in similar circumstances, they all would deserve a transplant as well.

Jose was not what a doctor would consider a ‘good candidate’ for a transplant, given the usual requirements. He had all of the same issues that Paul Corby has, the ones listed as reasons for denial.  Psychiatric issues, a disability, and an environment that did not appear to be able to handle the complexity of his life-long after-care. He was taking medications to help him deal with the stress of dialysis and not knowing if he would ever get a new kidney…. his immigrant family struggled financially, did not speak English, and did not understand the instructions that came with his medications.  But for some reason…. after years of dialysis at AI DuPont Childrens Hospital in Wilmington, Delaware, he received a life-saving kidney.

Jose struggled for some time after his transplant.  His home environment was not ideal for his recuperation, he gained unhealthy weight because of his medications, and he was sick quite often.

He moved to Juniper Hill in the Fall of 2010, and his first winter was filled with bouts of nausea and indigestion, migraines, and flu symptoms.  His new support workers, funded by his government disability  ’waiver’ that paid for people to come to his home and help him with medical and daily living needs…. kept up with doctor visits while teaching him how to cook, keep house, and get along with housemates.

Jose combing Cashmere off of Johnny the goat

Today, two years later…. Jose has lost all of his extra weight, no longer takes psych meds and has reduced his medications to basically just those that help with the kidney transplant.  He is strong and healthy and ready to take on the world.  It is inspiring just to be part of his life.

Jose received the ‘Against all Odds’ self-determination award at the annual luncheon this year

He volunteers at the local community center for after school children, mostly Hispanic, at The Garage in West Grove, PA. He is active in his church community and has made many friends.  He is passionate about singing… and his life long dream is to become a Christian singer. He is talking about moving to a nearby city in the ‘not too distant’ future… and getting his own apartment because he loves the hustle and bustle of city life.

Now that he has his health back, he goes out on weekends, by himself (without  his support workers) in his old neighborhood of Kennett Square PA and knocks on doors of businesses asking for work. He wants to work with young children and especially loves to be in hospitals making children laugh.

And home on the farm? …  he takes care of the farm animals in the morning, prepares his own meals, does his laundry, is an all around responsible young adult, considerate housemate and loyal friend.  He cooks lunch for a crowd of 15 volunteers every Wednesday with his wonderful support worker Carin.  And for breakfast, he makes a mean pot of homemade oatmeal.

He makes everyone laugh, every day.

Well lived, Jose.

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Posted in Adults with Autism, Asperger's, Autism, cooking, friendship, Funding, Living independently, organ transplant, Support workers

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Who’s in Charge?

Posted on May 31, 2012 | 2 Comments

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.

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Cooking and autism: If you want to build a ship…..

Posted on February 10, 2012 | Leave a comment

‘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.

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Living Independently with Supports, part 3: Happy support people

Posted on February 3, 2012 | Leave a comment

(Want to know what happened to Part 2?  Check out the ‘Facts and Figures’ page of this blog…. You’ll find lots of specific information on getting started!)

Patrick with JR on our fall crabbing trip

Today was the monthly meeting of the Juniper Hill gang… all of those people that hang out here on a regular basis…  the guys plus their support people.  Ed came early to bake chocolate chip cookies with Andy, it looks like it is a new tradition for meetings except they are going to have to double the recipe, at least!

Ed and Andy in the kitchen... it's potato soup night!

JR and Patrick brought in wood, Brent and Mindy built a fire. Liz and Ray planned tonight’s dinner while waiting for everyone to get their tea, coffee, and glasses of milk (to go with the cookies, of course!).  We talked about time sheets, dinner schedules,  and this blog… the guys are anxious to get their own page here, to tell their story and decorate it with pictures that they like (HALO and LEGO,  Eagles, Phillies and Flyers, dogs and insects, their favorite music) with the help of their support people.

Liz and Ray (and Adam the Cashmere goat) working on the pasture fence

Support people, they are the reason this whole project is working.  Everyone here is excited.  The room buzzed with conversation as we all planned the farm season coming up this spring.  Ezra and Brent made the first alpaca felt purses and cell phone holders this week, and now we can’t stop thinking about market days coming up! Patrick and JR want to learn to make wooden frames for Ray’s scientific illustrations he is working on,  and they’ll be planting hot peppers to sell… Noel and Jose planned a thank-you box of goodies from the Dollar Store, for volunteers that will come to help out at the farm.

Support people, the backbone of any independent living situation for individuals like the guys here at Juniper Hill.  ’It takes a village’… and we have one, here on the Hill.  How? Why? We talk about it every meeting, because that is what we need to figure out.  We need to be able to tell other families:  ‘do this, and you will have support people who care, who love coming to spend time with the person they are paid to help, who take initiative, will figure out what is needed and then do it.  Do this, and you’ll have people who will stick it out even when the person they support has a really really difficult day  ’

Jose, with support person Carin, tries to beat Brent at UNO. Probably won't happen.

Happy support people means happy guys…Here is a list of things we have come up with…..that help keep support people inspired

1. A salary of $15 an hour or more….the guy’s families here work hard to make it happen… and  the support workers can depend on the hours that they are promised.  It’s the bottom line, people have to support themselves. There is nothing more important than this one, no matter how much we talk about other perks of the job.

2.  There is a house/farm schedule to work with, and a weekly plan is laid out.  The guys have agreed to cook once a week for each other, so the support people are becoming cooks as well (it often doesn’t start out this way). The guys want to be paid for doing work around the farm and they need assistance, so the support people have a list of chores to work from. Laundry and cleaning have to be done weekly. Things just have to be done when living on your own. For support people, it’s good to be busy.

3. Several of the guys have made a commitment to volunteer activities in the community that they enjoy, and the support people have to make sure it happens.. and it’s fun!

4. The houses feel like home.  They are comfortable and welcoming. There’s music going, Kit the chihuahua is running around looking for attention, Alice the cat has sneaked inside, it smells like beef stew or chocolate chip cookies.

5. The guys are friends and care about each other.  They like being together and doing chores together. Long ago, our support people learned to care about the guys they were working with, and now they care about the other guys too.  It’s definitely a team effort, and that feels good.

6.  Extra credit: We have really cool animals,  and we grow sunflowers.  Hard to beat that! We are starting a new life all together,  working on creating something meaningful ….and there is much to look forward to!

(This is an added bonus here… we are not saying that you have to have adorable potbellied pigs for your support people to be happy… but it helps!)

And that’s about it.

But where did these people come from?  How do you find them?

Once you have registered with your appropriate Human Services agency (see the Facts and Figures page of this blog for step by step instructions), you will meet with a supports coordinator who will (hopefully) explain clearly your options and the services available. If you are lucky enough to be awarded waiver funding,  you will have a list of provider agencies to pick from. Interview a few!  Make sure that you ask what their salary range is for the various services… especially community integration, personal assistance, and home and community habilitation.  If they pay their employees $9.oo an hour, you are going to have difficulty getting (and keeping) good support people.   Ask your supports coordinator about FISCAL AGENTS, and if they have them in your state.  They are available for some waivers and services in Pennsylvania.

Mindy is teaching Brent how to loom hats, hopefully he will eventually have them as a market item along with his blankets!

The people who work here are from five different agencies. The guys and their families, with the help of their supports coordinators, hired them.  Each guy acts as an individual, and there is no interaction among the different agencies that provide support here. Two of the guys here have traditional ‘provider agencies’ who send support people when they are needed, and the guys work with them to see if they are a good ‘fit’.  In those cases, a few people have come and gone over the past year for one reason or another.

For the other guys here, they are hired by the families themselves, through a fiscal agent …. check out the two that we use here in Chester County PA, it can be a valuable option for some families:

Agency with Choice    http://www.arcofchestercounty.org/awc.html   

Acumen   https://www.acumenfiscalagent.com/index.aspx.     

I’ll go into detail about fiscal agents on another post, it’s important to educate yourself on this one!   Here is link to a comprehensive report explaining how it works: http://www.cmu.cc/docs/pa-guide-to-pds.pdf  (it is a 2008 publication, so some info might be outdated).  Basically, you (or a family member) can become the managing employer of your own supports and hire who you want.  The fiscal agent is the intermediary that actually sends the paycheck.    For the guys here that use them, the support people were found by word-of-mouth, either by the guy’s families or by the people working here already. When you find dependable, responsible people with a good work ethic…. a fiscal agent is a great way to go.

Fiscal agents work really well in a place like Juniper Hill,  a group situation where flexibility is always needed.  Three of the guys use the same fiscal agent, so the support workers (who are all employees of Agency with Choice)  can help out the other guys if needed.  They don’t double up, but they can fill in for that other support person if they are not working with another guy at that time.  It benefits both parties!

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Johnny, our farmer neighbor, keeps us supplied with hay and wood

The meeting went on for more than an hour, and we devoured the chocolate chip cookies, a pot of coffee and almost a quart of milk….and then a knock came on the front door.  Johnny, the wonderful neighbor and farmer next door, had a giant bale of hay for us and needed help getting it into the barn. Everyone scattered immediately… Mindy and Brent got grain to distract the goats, JR directed the tractor through the yard, Jose held the gate open for Johnny, and Patrick herded in the escaped piglets…

Great ending to a meeting!  

Springtime in February walk on the Hill, Feb 1 2012... Andy, Mindy, Noel (who also works with our friend Chelsea and they come for visits), and JR

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Living Independently with Supports…setting it up step by step, part 1.

Posted on January 28, 2012 | 1 Comment

Andy's first independent grocery shopping choices

Living independently….they make it look easy, the guys here on the Hill.  The rent gets paid, the pantry is full, and several times a week support people show up to make sure individual goals are being met…. goals that are developing self-sufficiency as well as goals that are just plain fun.  Everyone here seems to be enjoying a rich, rewarding, healthy and safe lifestyle.  So why isn’t this model more common, you ask?  Why don’t more families just find a place to rent and call a moving company?

Ask Patrick’s mom just how easy this is.  Ask how many phone calls she has made this week, how many emails she has written…  To Social Security, or the Department of Public Welfare, or the Pennsylvania Department of Long Term Living,  or the provider agency that sends his support people,  or the supports coordinator that oversees the provider agency that sends the support people.  Ask her how many times she’s made the half-hour drive to the Hill… to bring medication, or a pair of snow boots, or to pick up Patrick for a family birthday party.

Getting set up is definitely not easy, not when it is absolutely necessary to have both Social Security benefits as well as 15 hours minimum of support coming in. Navigating the systems involved can be so overwhelming… many individuals and their families never get past just thinking about the possibility of an independent life. It shouldn’t be this difficult, but it is.

Andy's second attempt (oh well, we kept the cheez whiz and marshmallows too!)

But it can be done!… it’s not easy, but it is absolutely possible for many many people with autism and other disabilities who have not yet taken the first step. It takes the good part of a year sometimes, to get things into place.  But it does happen.  And it already has here… for Ray, Brent, Jose, and Andy.

The funding and support programs for these four guys are in place and functioning, with relatively little maintenance at this point.  They are set up with social security benefits, government waiver funding that provides supports, medical assistance, dependable support people, food stamps, some part time employment, volunteer  positions in the community, and snow boots.  Well, maybe not the snow boots, because they still seem to lose things quite often.

So coming next in Part 2 is a step by step guide of ‘nuts and bolts’ instructions on how to set up an independent living situation for a person with autism or intellectual disability in the state of Pennsylvania.  Once this is all done, there’s still the actual ‘getting along with housemates, new routines, and making my own lunch when I don’t want to’ part, but those stories will follow in good time.

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