We are having some gloriously sunny early fall days …
Check out our ‘Feeling like Fall’ video!
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
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.
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! 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.
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.
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.
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 bigger’ 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.
First cookout tonight. First time eating dinner outside, first deviled eggs from our chickens. First bonfire, first roasting of marshmallows, first toad eating the insects at the porch light. First bright orange tulip this morning! The predictability of each season is always a cause for celebration here. All house and car calendars have the pages turned by noon on the first of each month, and the day’s discussions are centered around the month to come. April 1st brings t-shirts and shorts, no matter the weather.
Tonight was joyous.
Springtime, food, fire and long time friends.
Oh, and marshmallow peeps.
We learned that in an emergency situation… when there is a bonfire and no marshmallows… that marshmallow peeps will do.
First, we feasted on Patrick’s grilled steaks, pierogies, salad, and deviled eggs…look how yellow the yolks are from our chicken’s eggs!… We still have 4 dozen eggs from them in the fridge, and John Pags actually sold 2 dozen at work today! It’s their first year laying, they must be very excited.
Then Patrick, man of the evening, built us an amazing bonfire from all of the downed branches from the winter storms. We have plenty of wood for the entire spring, summer and fall weekly bonfires. This called for a celebration!
I donated my hidden stash of Easter season marshmallow peeps, and we just so happened to have 4 Hershey chocolate bars in the closet. No graham crackers, we improvised. We collected roasting sticks, and got down to business.
And Ray sharpened his stick…..
Pete tried out roasting
Ray.. still sharpening….
Ray’s stick is almost sharp….
Patrick made a great one… the sugar caramelizes it so nicely….
After he dropped the first one…
By the time his stick was sharp enough… Ray had almost missed the peeps.. but he got one last one…
I could end the story there… but there’s a little more….
People often ask us how we deal with alcohol, etc. here. And I can honestly say that alcohol, with this crowd, so far is never an issue. For various reasons, the guys are either adamantly against it because of experiences in their lives, can’t have it because of medications, or they are just plain moderate about it and barely interested. I, for one, look forward to having company over for dinner, when I can have a glass of wine without my housemates lecturing me!
Tonight, no company. But it felt like a wine kind of night. So after the peep roasting, I broke into the Sutter Home Chardonnay cooking wine (OK really, we buy little bottles of pretty decent wine for recipes) , brought out a hidden 6 pack of Vernor’s (really amazing) ginger ale, and had one bottle of Heineken saved for a special occasion. I gave them their choice. They chose the ginger ale. I chose the chardonnay.
Happy Spring Everyone!
All stories and pictures of the guys shared not only with their permission, but with their constant insistence on using every possible photo of them in each and every story on this blog…
It was a great day last Wednesday, our weekly get-together with friends day. It was a Hang Out Winter Wednesday (‘hang out’… because we are definitely NOT getting any work done these days !) and we played Bingo with our friends. New prizes from the Dollar Store made it a hopping competitive afternoon, and everyone had fun. Almost.
We’ve been together here for awhile now, this Wednesday crowd….our extended Juniper Hill family. Sometimes it feels that here at the farm, we can be happy in our little group and… for a little while …. we can ignore the politics going on outside of our boundaries, the discussions that ultimately affect all of our lives with policies that dictate what the ‘best life’ for a person with a disability should be.
There are two stories told below. Two very different, and very real scenarios. Both can be acceptable in the adult system that provides services to you or your adult child with autism. Make sure that you truly understand the ‘vision’ of the agency that you choose, and how they carry out their mission.
Be careful what you wish for.
Our Bingo afternoon began a bit rough.. Very rough actually. And very sad and upsetting for all of us. Our friend Debbie (I’ve changed the name for privacy’s sake) arrived with a new staff person, and she was visibly upset from the first minute. ‘I miss Anna’ (former staff person whose name was also changed here). ‘She isn’t working with me anymore’. Why can’t I talk to her?’. I MISS Anna!’. I NEED to hear her voice!’ Why won’t they let me see her?!’ and screaming ‘GET AWAY FROM ME!’ to the new staff person…. and screaming ‘I hate %&*@!#$!! (the name of her provider agency ). It escalated to the point where Debbie threw herself on my bed sobbing, calling out Anna’s name. I held her in my arms and she squeezed me until she calmed down. She eventually joined the Bingo game and seemed to enjoy it, though she was quiet for the most part. She left early.
What happened? It seems that Anna, the beloved staff person, broke a rule. She was suspended, probably fired. She is now forbidden to have any contact with Debbie, with whom she has been working closely for months.
And the rule? Your personal life MUST be kept separate from your work. This means that the person with autism must not meet your family, visit your home, or be involved in your life in any way. There must never be contact with the ‘client’ while not at work. (ugh.. how I abhor the term ‘client’…)
And the rule-breaking event?
We have had quite a winter here in the northeastern U.S. Back to back snowstorms with power outages lasting days in some instances. Power outages, with autistic people. Families have been scrambling to make it as easy as possible for their family member…. taking precautions, buying generators, leaving town. Debbie’s area of the county was hit hard, and their power was lost for days. Debbie can NOT handle power outages. Anna lives nearby and had power, and she volunteered to walk over and get Debbie and bring her to her house until power was restored. Debbie felt safe with Anna.
The program found out that Debbie had been to Anna’s house, and Anna was suspended.
The other rules of this program? Do not form a personal relationship with your client, be professional at all times. Do not touch their money, or their meds or personal belongings. (Debbie’s family bought a power generator and could not get it to their house in their car, so Anna helped them by putting it in hers… Anna was also cited for that). Do not eat their food. No photographs. Do not ever transport another person while you are transporting your client.
This is the way that this program keeps their ‘clients’ ‘safe’.
and then there is this rule: ‘Do not do anything for them. You are not there to do their work for them. They must do it themselves. If they don’t want to do it, they don’t have to’. I guess this means that they already have to know how to do something before you try to teach them how to do it. (Whatever happened to ‘modeling’ a skill as a step in teaching someone?) Unfortunately, what this approach often translates to is an excuse for the staff to ignore the bathroom.
This is the way that this program ‘promotes independence’ in the name of ‘self-determination’.
**just as an aside here… it is true that everyone should be able to ‘self-determine’ NOT to clean their bathroom. Unfortunately, a lot of these guys that are supported by these agencies do not fully understand the consequences of a decision like this. This is not fair to them. It is absolutely necessary that ‘understanding consequences of your decisions’ HAS to be part of the support that is provided. It rarely is. The consequences of not cleaning your bathroom when you are an adult are that your housemates will be mad at you. They will have to do your part of the work in keeping up the house and their staff will have to take time out of the regular routine to help them. This makes the staff frustrated that the work is being dumped on them. In a rental situation, the landlord will not want tenants that do not take care of their place. Self-determining to not clean your bathroom puts you in jeopardy of eventually losing your friends, having your friends lose their staff, losing your housing because your housemates don’t want to live with you or because the landlord no longer wants to rent to you, and ultimately affects the way landlords view renting to people with disabilities… . This is an entire blog post in itself.**
Here is another story. This one is happier.
Pete is here visiting us at the farm for a week. He is a good friend who has known us all for three years. He knows the staff people of the other guys here as well, and he receives support services from the same agency as Ray, who lives here. This morning, Pete had no scheduled staff while all of the Juniper Hill guys did. Ray asked his staff if Pete could come with them to his volunteer job at Comp-Animals, the animal rescue organization where Ray walks dogs and does some cleaning a couple of times each week. Pete went along… in the same car…. with Ray and his staff.
It was really nice for Pete to be able to tag along with Ray this morning. They also cooked a meal together this week with Ray’s staff, they made an awesome couple of seafood pies.
But it was tonight’s events that really made us realize the importance of having an unwritten policy of friendship and ‘inclusion’ with your staff members.
Ray spent the afternoon today with his staff in the town where he used to live independently, 45 minutes from the farm. He went to the library, his favorite one, and checked out some books and videos. He cruised his favorite stores, visited a friend. When it was time to go, his staff person brought him to the bus station where for two years Ray has waited by himself and taken the bus back each week to our neck of the woods.
Today, for some reason, Ray got on the wrong bus. He does not/will not carry a cell phone. He did not panic (maybe just a little!). He realized he was on the wrong bus, got off several stops down the line, and found another bus to take him in the direction back towards the bus station. Ray then walked for 45 minutes looking for his staff’s apartment, and found it. He had seen where it was only once, months ago. Somehow, he found it. She fed him dinner and drove him back to the Hill at 7 o’clock at night. Of course she did!
Wow, count the rules that would have been broken today if it had been this other program. Boundaries. Personal life. Being at the staff’s home, with her child. Riding in the car with another person to the animal rescue. Sharing food. Assisting during off hours.
And if Ray had been supported by this other agency, with all of its rules, he most definitely WOULD have panicked tonight. Because he would not have had the supportive, caring, inclusive community that he has now, after three years living here at the Hill. He has personal relationships with ALL of us. All of the staff, all of the guys, all of the guy’s families… some of the staff’s families. He has all of our phone numbers (which he would have used if he had not found her house). He has been to some of the staff’s houses…. including the other guy’s staff. He is skilled, self-confident, self-determining and independent, and he feels safe.
This agency would, in its defense, say that if Ray had been one of their ‘clients’ and somehow contacted their emergency hotline (staffed by unknown people) by asking someone on the street or going into a business and being confident enough to ask to use a phone (not sure how this fits with their ‘safety’ policy)… they would have sent a taxi to take him home.
Setting up supports for yourself or your adult child?
Who are YOU gonna call?
Banner photo at the top is of a few of the Wednesday gang with Alison’s (Andy’s staff) puppies
EVERYTHING WORKS OUT IN THE END. IF IT HASN’T WORKED OUT YET, THEN IT’S NOT THE END…. Tracy McMillan
It takes time… lots of time. It takes time to accept the fact that food has to be shared, that the TV has to be shared, that friends say hurtful things but often don’t know they are doing it, that friends say hurtful things knowingly but only are saying it because they are hurt and scared. It takes time to learn to roll things off your shoulders, even if they really bother and annoy you… like being teased. or people in your personal space. Or loud outbursts. Or changes in plans. Or having to clean the bathroom, cause it feels like you do more work than everyone else because bathrooms are gross and should count three times as much as any other chore.
It takes time.. to get past TOLERANCE, and move into ACCEPTANCE. There’s a big difference between the two! Often, the folks with autism get there ahead of their parents.
As a ‘housing counselor’ to parents who have taken the leap and helped their young family member move out on their own, I’ve witnessed the fear and frustration and confusion and uncertainty of whether or not it was the right thing to do. Remaining at home was safer for your adult child in lots of ways…it is just so scary to allow the rough parts to happen and not give up. You know that there are probably going to be more rough times for awhile. And it was easier and less time consuming too, to just have them living at home. No worrying about staff not showing up. Their clothes matched, their room was cleaner, they brushed their teeth better, and you could keep track of what they were eating. Really, is this worth it??
I began writing the Juniper Hill blog in the winter of 2012, and my first post was about how much everyone was learning to accept each other, in just one year. Now, two and a half years since we started, there are still rough spots…. but the relationships have grown, and mellowed. I am not a parent to any of the guys, and therefore have different feelings.. Less worry, less uncertainty. But for me, I am quite sure. It is worth it.
Brent requested a family dinner at Red Lobster for his birthday last week… so we piled into two cars, made a grand entrance and took over their largest table for two hours. We had MORE FUN than anyone else in the restaurant that night, we were pretty sure that everyone wanted to be us.
We ordered fun drinks, our favorite seafood combinations, took silly phone pictures of ourselves, reminisced about past birthday celebrations, listened to everyone else’s requests for THEIR future birthdays …. and clapped to the Red Lobster birthday song for Brent. And we ate cake, of course!
It didn’t start out like this, our life together. Wow, not by a long shot. And the meltdowns and frustrations and arguments still occur, but they’re different now. They just don’t go as deep, are over more quickly, and are taken in stride by the other guys. Two and a half years together, and I think the word here really is acceptance. It just kind of happened…. over great dinners, fun trips to amazing places, cozy evenings by the fire, helping each other through frustrations, talking over problems, arguing about house rules, coming together and caring about each other in times like hurricanes and power outages, and celebrations of course, celebrations of accomplishments…. holidays… birthdays… milestones.
It was not always easy. There really had to be lots of flexibility, and patience, and tolerance, and FAITH…to get through the rough parts. There has to be tolerance first, before you get to acceptance. I’m not sure that it is ever easy, especially with autism.
First there was that fist fight on the deck that first year… and the time the pitcher of iced tea got thrown all over everyone in anger (and panic no doubt)…. and the banging on the walls…holes and more holes… Hey! that still happens!….. and the teasing over each others likes and dislikes and beliefs… and the stealing…. and the meltdown yelling at midnight… and the phone calls EVERY TIME I was out at night because somebody would always take it upon themselves to order the others around, and this was scary for the more submissive guys…
It’s difficult to write about negative things, it’s always easier to tell happy stories. I worry about discouraging people from taking the chance on independence. But although these are true stories, they are also HAPPY stories… just with some glitches….and somehow it puts the ‘lack of tooth brushing’ in perspective! (Keep reminding the staff, the tooth brushing will come).
And we love to tell the ‘pitcher of iced tea’ story… it’s become legend!
The friendships are there. We really know how to have fun together…. and laugh….and we are one big kooky quirky eccentric amazing marvelous family… It was great to be reminded of that, at Red Lobster last week.
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.
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 before 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 the 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 who 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.
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:
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.
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!)
Saturday morning cartoons, forever….
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.
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.
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.
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!
Last weekend we visited the Wolf Sanctuary of PA for the Full Moon Tour … listened to wolf lore by moonlight, warmed our cold feet by a huge campfire, got to know 40 rescued wolves, gazed into their yellow eyes and heard their lonely howls. It was under 20 degrees F, but we walked around for two hours and Jose still wanted to keep asking questions as we were leaving. We warmed up at Cousin’s Pizza at 1030 at night and told our favorite wolf stories.
Our trip to New York City last month was a beautiful unseasonably warm and sunny day strolling the pedestrian street at Times Square, eating lunch at the HardRock cafe, and seeing a ‘sensory friendly’ production of ‘elf’ off Broadway. We checked out the New Year’s ball that we had just watched on New Year’s Eve, does it sit up there all year long?! and we watched the skaters at Rockefeller Center before we boarded our own private, quiet and not too crowded bus back home to Pennsylvania.
This past year we have had box seats at minor league baseball games (box seats so we can walk around, have our own bathroom, eat Crab Fries and be somewhat flappy without bothering others)….. watched the spectacular Disney on Ice, spent a week at the beach, seen the most amazing jelly fish at the Baltimore Aquarium, met the HARLEM GLOBETROTTERS!, gone to the China Buffet once a month or so where we can eat lots of fried dumplings and make ice cream sundaes with unlimited whipped cream for dessert…… and amazingly we got to geek out at the New York City Comicon where we talked Anime/LEGO/ Ninja Turtles non-stop for 6 hours.
We’ve learned to tolerate … maybe even enjoy….each other in the van on the way to events; gotten comfortable in restaurants; learned to make it through (without meltdowns) the dreaded ‘getting ready and loading up’ period before each excursion, learned that new places and faces don’t have to be scary, and formed close, trusting relationships with our dear A.A.L.I.V.E. family and friends who we see on many of our trips.
And just how do the guys get to do this on their $698 dollars a month?
A.A.L.I.V.E. Adults with Autism Living with Independence, Value and Esteem.
Money is tight for many people who have a disability and who are trying to create a fulfilling, productive, independent life for themselves. Even when you’ve been able to put some money aside for a fun trip, it is difficult to structure an outing to meet the needs of folks with severe sensory issues and a fear of new environments. It’s a strange, scary, noisy, crowded world out there!
WE ARE SO LUCKY to live in southeastern Pennsylvania!
The A.A.L.I.V.E.organization has evolved into an amazing resource for adults with autism … and it’s such a GOOD IDEA… to structure experiences for folks like the Juniper Hill guys so that they can venture out of their comfort zone and see and do amazing things.
You COMPLETE us, A.A.L.I.V.E….
Motivation…. it started out as competition, before they cared.
Brent cooked independently …. and got lots of attention from visitors for it. The other guys started cooking.
Ray brought home a paycheck and bought himself his own junk food and CD’s. The other guys requested that their support workers take them job hunting.
Jose made a conscious effort to change his eating habits and lost a ton of weight…. everyone who knew him before showered him with compliments. The guys started dropping waist sizes and talking about food choices at dinner .
Andy volunteers at the library and checks out books that he reads each night after dinner. The others wanted their own pile of library books.
Before they really cared about each other, they just wanted what the others had. Their motivation began as a competition… for attention, for money, for books. It got them off the couch temporarily, but that type of motivation just doesn’t go very deep. The anxiety, anger, melt-downs, sensitivities, intolerance, mistrust… still front and center. They just had more books.
Almost two years ago…the guys started out as a group of pudgy overweight, unmotivated, anxiety-ridden gang of couch potatoes. Except Brent… older than the others by at least 10 years….healthy, fit, and motivated to work from sun-up to sundown, had hobbies and filled his leisure time… He has lived here on the farm for 18 years.
Brent has most of the same difficulties as the others …. anxiety and melt-downs, sensitivities and intolerance. But he doesn’t have the mistrust that the others have, and his behaviors are rarely directed towards the guys. He really likes his housemates, and he was the first to show that he cared, no matter how much the other guys were acting out.
Brent is also quiet…. he sits at dinner listening, rarely contributing to conversation. Everyone else battles to get a word in. And every other guy has SOMETHING about him that annoys the others. But Brent?… there appears to be nothing about him that is annoying to the other guys. So Brent became the one that everyone bonded with first. Coming to his defense when it seemed like he might need it, always watching out for him and making sure he got his share…..they TRUSTED him.
They see how hard he works, without complaining … ever. They can see that he doesn’t need to be begged, prodded or lectured to about adult responsibilities in a household. They see that when the arguments are about whose dishes are in the sink and who should load them, he just gets up and does it. And they see that he earns a decent amount of money each week because of the extra work he does.
They also see that he keeps most of his personal ‘stim-stuff’ to himself when he is out in the community. No one forces that issue. He wants certain things from those he comes in contact with… so he makes an effort to understand the people he meets and has learned to express his needs in a way that can be understood. His desires are rarely ‘typical’…..they usually involve checking out the heating systems in people’s houses, or asking questions about their car keys. But he has learned to do it in a way that endears himself to almost everyone he meets.. EVERYONE loves Brent.
His maturity and work ethic shine in everything Brent does. He makes the other guys want to better themselves.
There is a turning point in young adulthood, with or without a disability. A point at which your motivation changes from doing something because someone older expects you to, to acting on something just because it’s the right thing to do.
A few weeks ago, Jose started getting up in the morning on his own, giving himself an hour before his staff showed up. He started making his own coffee, and real homemade oatmeal from scratch (with frozen strawberries blended in yummm), the way he has been taught over the past year. and when he is finished now…. he loads his dishes and checks to see if the dishwasher needs to be run, and TURNS IT ON if it needs it.
He turns on the dishwasher now, just because it needs to be run. Seems like a small thing, right?
Ray works every Monday and Friday, cleaning two different gyms in West Chester PA. He takes public transportation home on his own …we actually have a bus line that comes all the way out here to rural southern Chester County…. and gets dropped off in West Grove (about 6 minutes away from the farm). He deposits his check each Friday in his local bank before getting picked up by someone to take him the last leg home to Juniper Hill.
He was featured in this month’s WC Press, a West Chester magazine. Check it out! Yay Ray!!
People with autism lack empathy.
Really?? ….I’m confused. Do the people who say this actually live with a person with autism… do they spend a lot of time getting to know people on the spectrum? Have they experienced sad events together with their friends who are autistic?
I have. Many many times over the years. I’ve seen their anguish when a friend or animal is sick or hurting…. and I’ve seen how quickly they respond when a stranger needs help. I see …and yes, I can feel…their pain when they have unknowingly hurt someone’s feelings or disappointed someone that they care about. I hear their apologies, and those apologies come from a place so deep and sincere that I expect that any second they will shut down completely out of sheer empathy OVERLOAD.
Lack empathy? Not a chance. But I do understand why so many neurotypical folks PERCEIVE a lack of empathy in their students or acquaintances with autism.
The other night around 10… Ray and Michael grabbed the lantern and headed up the hill to Ray’s house. Down at the main house, I was checking Ray’s mouse live- trap, since we have had an influx of cute little meadow mice lately with the coming of spring. I opened it up, and one of those cute little meadow mice jumped out of the trap and into the sleeve of my shirt and ran up my arm and onto my stomach… under my shirt. Now… I am not afraid of mice. Or snakes, spiders, rats or scorpions. I live with them, Ray collects pets like this. I like all these critters almost as much as Ray does.
But it caught me by surprise and I screamed… LOUDLY. and CONTINUOUSLY for what seemed a very long time… because I could not get the thing out of my shirt and it was running around on my body. Andy and Jose just watched me jumping around… and afterwards, Andy says ‘WOW! You scream like a girl!’
Ten minutes later, Ray and Michael return, carrying LEGOS of course. Still excited, Jose and Andy tell the mouse story…. and Michael says…..
‘we heard you screaming all the way up the hill when we were walking up. It sounded like you were really hurt, or like something was attacking you’
and I said ‘then why didn’t you run back?’
and Michael says..’ well we were pretty intent on finding this LEGO piece that we were missing. We’re back now.’
This is not lack of empathy. It’s something else, hyper focus …or something. To their credit in this particular case, I truly believe that sometimes the guys here assume that I am some kind of super human that can not be physically hurt… similar to a Bionicle or HALO individual perhaps, guys?…. (perhaps it is my ‘Bossy Big Sister‘ New Yorker attitude).
I am neurotypical but have lived with adults on the spectrum for 30 years. This kind of focus is going on all the time here. Often, a problem will arise around a disruption of focus…of hobbies… or computers, televisions, or music…. something in the present environment that has to be shared with others. And when this kind of focus is interrupted, these guys often have little tolerance or understanding of the person who is interrupting them.
I have tried to get them to explain to me how they are feeling, but I’ve never once succeeded at the time it is happening. It is during these instances that you see another side of these generally kind and gentle, compassionate guys. No matter how many times they are asked ‘how would YOU feel if …… ‘ or… ‘don’t you think it’s time for someone else to get a chance, you’ve had your chance for 4 hours’… there’s just ALWAYS a reason (actually, many reasons) why they shouldn’t have been interrupted because what they were doing was very important. So sure, in that particular moment, there is not much empathy… anywhere.
but by the next day…. they always rationally discuss possible solutions to the problem… and they apologize to everyone involved.
So am I missing something here? Is this what is meant by ‘lacking empathy’? I respectfully disagree.
April is Autism Awareness month, and tomorrow is April 2, World Autism Awareness Day. The numbers are out and autism is now 1 in 88 births… we are past ‘awareness’. Isn’t it time it became ‘Autism Appreciation and Acceptance’ instead?
And that is my rant for the month.
P.S. And speaking of empathy… in case you missed it, the family dog passed away recently, and I blogged about it here