Tag Archives: support worker

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

‘If you want to build a ship, don’t drum up the men to gather wood, divide the work and give orders. Instead, teach them to yearn for the vast and endless sea’ Antoine de Saint-Exupery (author of The Little Prince).  

There are often a lot of sensory issues that come with a diagnosis of autism.  Here on Juniper Hill, we have sensitivities to loud noises, sensitivities to the texture of food, sensitivities to voice pitch, sensitivities to materials from which clothes are made.  Sensitivities to certain words…WAIT, MAYBE, I DON’T KNOW….. to car engines revving, to water touching skin, to meat with bones, to high pitched voices and to total silence. To bright lights, to strong smells, to other people’s dirty dishes. Oregano.  Salt.  Pepper. ONIONS! The size of the pieces of food matters, and how soft, how crunchy, how sweet, how tart.  How hot.  How cold.

When the guys first moved in, they didn’t care if we ate meals together, and they didn’t care to experiment with unfamiliar foods.  They just wanted to eat what was safe and get it over with. The support people did most of the cooking while the guys pitched in when they could stand it. Mealtimes involved a well-balanced array of foods that sat on the table while the guys made their ramen, opened their cold cans of spaghetti-os, and poured frosted flakes. As the NT (neurotypical) housemate, I held in my ‘Jewish mother’  type tendencies and didn’t force the issue. Well, maybe just a little bit!  ‘Here, you like pasta, this is the same as those spaghetti-o’s, why don’t you try it?’  ‘Here, this chicken has no bones, no spices, no sauce… sure, go ahead and put ranch dressing on it, that’s fine.’

And then, 10 minutes after dinner the guys would come back into the kitchen and make popcorn. Then again an hour later.

As time went on, mealtimes became more popular.  It was the time to get-together and talk about the day and share stories.  We started making fancy-but -not-scary desserts.  There was so little junk food in the house anymore, because the bulk of the food money went towards meals and some healthier snacks, and the leftover spending money that the guys kept was now spent on other things.  Given their choice, it evolved from a giant bottle of blue soda and Doritos to a new HALO figure, Starbucks, or a music CD.  The spaghetti-o’s and ramen were still included in the weekly shopping, but often they were eaten in the first two days.  Without the constant supply of Doritos, the guys were hungrier and more open to eating what was cooked already.

Patrick's first lasagna

Then…. we got a weekly meal schedule, the guys made the request.  Brent had been cooking on his own for years, and he started independently making meals for everyone.  It all started with ‘Pierogie casserole’.  He read a recipe for it off of the Pierogie package, and the guys went wild for it.  Pierogies, tomato sauce, pepperoni and mozzarella cheese….. devoured in minutes. Brent got lots of attention for his creation, and all of a sudden the guys wanted to make a meal to share too.

Everyone signed up for a day of the week. The support people jumped right in and started researching recipes off the internet.  Lots of cheese, lots of pasta.  Variations of rice or pasta, chicken breast, cheese, cans of cream of mushroom or celery soup… and maybe (hopefully!) a vegetable. There was salad available every night, and with Ranch dressing, it began to taste OK. A few times,  we would make brave attempts to eat Ray’s concoctions that involved something scary from the ocean (eel, squid, mussels).  But eventually, Ray settled into shrimp dishes to satisfy his seafood cravings, and that was fine with everyone.

These days, the monthly menu looks creative and tasty.  Jose contributes food with a Mexican flair, and believe it or not everyone has come to appreciate beans and salsa.  Tortillas are now a staple in the house.  Pat is the casserole king, and this week he made chicken pot pie from scratch.  He and Jay-R came up with the idea of using frozen biscuits as the top cover and pizza dough for the bottom… it was amazing. Everyone now knows how to make homemade pizza, and on Saturday nights they are in the kitchen together, rolling out pizza dough (bought from the grocery store, a ball of dough ready to roll) without any support people.

 

 

 

 

 

 

 

Now the guys all know to cut onions REALLY TINY so they disappear when cooked… they know to always have a boneless chicken breast for Ray if they are baking chicken, Jose knows to make half the beans refried and half left whole,  because some can’t have the pieces of their food blended.   All cut meat has to be approximately an inch square…not too big, not too small. No ground beef. Potatoes can’t be mashed, so they too, get cut in one inch squares. No pepper, no oregano during cooking, but the center of the dinner table is full of condiments so that each person’s food has the precise amount added to suit him. It wasn’t really a big deal to consider food sensitivities while cooking… and now it is second nature to make the meat the perfect size.  And sometimes… the guys will still go for the ramen during dinner.  But they always sit down together,  everyone always compliments the cook, and they are so impressed with themselves that they are pretty sure they’re ready to publish their own cookbook….

and the Ranch dressing?  Still there at center stage, helping broccoli and other questionables make it into the main course.

So thank you, Antoine de Saint-Exupery, author of The Little Prince.  Thank you for your suggestion that the love of something is what inspires learning. Not only are these guys developing a love of real food, but they love creating a meal, they love the ceremony of a meal, and they love making their friends happy…. 

Now we just need a way to inspire them to do the dishes……

These potatoes? Too big... they will be cut in half at least one more time.

Living Independently with Supports, part 3: Happy support people

(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!

********************************************************************

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