Tag Archives: Christmas

Autism Celebrations, Acceptance, and Community Living

‘There are new rules and guidelines for Home and Community Based Services being drafted that will dictate what type of living and working situations Medicaid dollars will fund for people with disabilities. There is language in the new rules and guidelines that is a threat to the farmstead model. There are disability advocates who believe that farms are by their very nature isolating and that people with disabilities living on a farm will be tantamount to living in an institution…..we at AACORN Farm disagree!’ (Catherine Pinto, founder).   And we at Juniper Hill Farms disagree as well!!

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50 candles on Pete’s birthday cake today!  Yellow cake with buttercream frosting with a banana cream pie on the side, as per Pete’s request that he made LAST week at Andy’s birthday celebration.  25 or so of Pete’s closest friends sang Happy Birthday and cheered as all 50 candles were blown out.  Presents included cans of crab, sardines and oysters as well as doggie treats for Shauna and Pete’s favorite Lemon Ginger Tea.  After cake, we pulled names out of a basket to see who our $5 Secret Santa will be for next week’s holiday party…. And then? Our bellies full of cake and homemade macaroni and cheese, we made the weekly mass exodus off of Juniper Hill for Winter Wednesdays afternoon bowling.

There have been birthdays almost every week since Jose kicked off the birthday season on September 20th… and now after the holidays in January we will have Karen, Patrick, Rebecca, John, and Aggie for 5 birthday weeks in a row.  We’re thankful that we are a community of mostly winter birthdays, or we would never get summer sunflowers planted!

lp.aspxCelebrations happen naturally here on the Hill. There is a momentum that can
not be avoided, an unspoken ‘rule’ … that HERE is where we celebrate.  Here in the loud, crowded, somewhat worn and disheveled dining/family room right off of the always chaotic Juniper Hill kitchen.  A poster on the wall quotes Emma from Emma’s Hope Book …. ‘Helpful Thoughts of Calming Kindness’… wise, poetic words reminding us all to STAY CALM. Through weekly meltdowns, drama, and anxiety… it all comes together somehow. It doesn’t exactly ‘STAY’ together… ever… but it does ‘come together’ each week,  and by the following week everyone is ready to do it again.

Four years ago … in the beginning…… the question ‘How does an adult with a disability celebrate holidays and birthdays once they are living independently in the community?‘ was not considered.  The first six months involved setting up services and support people , finances, pots and pans and furniture. Logistics.

Then all of a sudden, birthdays happened.  And holidays.

But actually … mostly nothing happened.

NOW WHAT?  This was not part of the plan! Families would call and make the effort, but it was often difficult to be available on an actual birthday.  Staff was gone on holidays and there was no guarantee that a birthday would fall on the same day as scheduled staff. And wasn’t I supposed to be ‘just the landlord’?  Who was going to make this happen? And whose responsibility was it to help the other guys acknowledge their housemate’s birthday?

Just HOW important was this, to make sure that celebrations happen for each person? It was glaringly obvious… celebrations were at the top of everyone’s list here. The idea of taking on that responsibility was overwhelming.

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How do neurotypical adults celebrate?  They call up friends, or friends call them. They’ve stayed in touch with friends from high school or college. They have gotten to know their neighbors socially, or their co-workers, or their church. They make plans.  They initiate.  They drive themselves home for Thanksgiving. There is an entire multi-generational community that sustains itself without too much effort.

But these guys, and many other independent adults with a disability… don’t.  They don’t initiate.  They don’t drive. They have rarely stayed in touch with school friends. It is difficult to pursue social relationships on their own, whether in the neighborhood or at the workplace. Their aging parents do their best to pick them up for family events and drive them back home again afterwards.  Sisters and brothers stay involved the best they can, but they are raising families of their own.

And for many many people, living independently in the community with a disability… they spend these special occasions alone.

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So why does this work here at the farm?

What we really DO have here is  a community… after 4 years of working together, 4 years of eating together, 4 years of living together or just being together for a few hours each week. That’s all it took.  Just real life…  and familiarity, true friendship and trust.

We have a community… and they want to CELEBRATE!

So we do, together.  ALL. THE. TIME.

Something else happened today, another incident that embodies the importance of the relationships that exist within the Juniper Hill community.

One of the guys kind of ruined the bowling event today, for most everyone there. It involved LOUD melting down, blaming and bullying of others.  Upon returning to the Hill, he disappeared for three hours.  Around the farm, into the woods, or up in the other house at the top of the hill…. he went somewhere (because on a farm, there is space. There is room to be alone, to have your quiet space, to reflect without interruption.  Another bonus of country life.)… The rest of us feasted on some pretty amazing leftovers for dinner, put up Christmas lights, and sang Christmas carols with YouTube videos.  Actually, I had absolutely nothing to do with the singing part, that was INITIATED (yes, they initiate now) by the others.

***(just a side note about having the word ‘bully’ in quotation marks.  This guy, this quotation marked ‘bully for an hour’ is the kindest, gentlest, most compassionate and generous guy you will ever meet.  But not during a meltdown. No one is. That’s why it is called a meltdown).

They were rocking the Christmas Spirit here… when the afternoon melt down **’bully’ returned.  And here’s how it all transpired….

No judgement.  No complaints.  No mention of the afternoon meltdown.  It was over, after all.

Instead, there was a pretty amazing welcoming reception because the leftovers that were the most coveted had been cooked by the ‘bully’ the day before.  Everyone raved about the ‘accidental chicken stew’ (he had intended to make soup!).  Then they served up leftover birthday cake, found enough space on the couches for everyone PLUS the dog… and watched three Christmas movies in a row.

It wasn’t that he hadn’t been wrong.  It wasn’t that it hadn’t been a big deal at the time it happened.  Feelings had been hurt, people had been made to feel uncomfortable.  Tomorrow, he’ll probably talk about it and think of some ways to possibly avoid it next time.

EVERYBODY here does this, or something like it.  There is such comfort in this knowledge. They all have their stuff (me too!) . We have all needed to be forgiven and accepted.  Regularly, actually. And everyone works hard every day to keep it together. Everyone is doing the best they can, and most of the time we all understand that…. three hours later.

We do community AND forgiveness, AND acceptance…. really really well here.

Dear Center for Medicaid/Medicare Services… Please don’t take this away from us, just because we live on a farm and not in what is considered a traditional ‘community’ setting.  Don’t change this life we have built here, just because most of the people here have autism and you think that we should be living closer to more non-autistic people.  This IS a community setting, and we do ‘community’ better than most anybody.

Please…

Rethink ‘Community’.

Opening Day of Winter Wednesday Bowling 3 weeks ago!

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Feeling A.A.L.I.V.E.

DSC_0052Last 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.

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Rockefeller Center, New York City

This past year we have had box seats at minor league baseball games (box seats IMG_0639so 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.

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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.

Priceless…

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!

Colleen, Frank and Brian Foti, Founders of A.A.L.I.V.E.

Colleen, Frank and Brian Foti, Founders of A.A.L.I.V.E.

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….

THANK YOU!

Holidays and autism: free-to-be age inappropriate

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

Brent as a Hershey’s Kiss

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

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

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

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

Dylan and Brent 2008

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

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

Not to worry, those days are gone forever.

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

Christmas 1998

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

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

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

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

Brent and Dylan, Christmas 2012

Brent and Dylan, Christmas 2012

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