Tag Archives: Home and community based waiver

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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