Thursday, July 18, 2013

Looking to the Future - A Visit to a Residential Farm

I am not ready to have RJC live away from us.  I feel I should say that up front.  We are not currently looking for a residential placement.  More like...searching around and dipping a toe in to see what's out there.

I do know that when that day comes and she is ready to be more independent from us, that I want it to be a place of my choice and I want her to have had enough of a transition (a REAL transition) to be comfortable with the move.  There's a few issues of course, not the least of which is that we have no idea where we will retire...and wherever she is, we'd like to be close by.  Yep, I will still be hovering.  Even when I'm in my golden years.

Our first step toward to considering her future was to check out a residential farm we had heard about that is located in another state.  I was nervous about the visit.  I checked out the website about a hundred times and called to make the appointment for the tour.  Of course, I asked a bunch of questions when I called.  Still, driving there and knowing we were going to see an actual residential possibility was nerve wracking.

The drive there was beautiful.  It was certainly in a nice area with lots of trees and wildlife around.  There wasn't traffic.  The day was clear.  And hot.  Super hot.

We arrived and immediately noticed construction going on.  We found a parking spot and went into the main building where they welcome their visitors.  The woman at the desk was nice and when our tour guide came in she left us to her.  The tour guide was one of the "villagers" (what they call their residents).  It was just my husband and myself and a recently arrived "coworker" (what they call their staff) from overseas.  Off we went.

Our tour guide was very sweet.  She answered all of our questions, but was not particularly forthcoming about where we were headed.  I asked her if she liked living there and she said something like, "It's good once you get to used to it.  It's kind of like a group home but different."  As our tour went on, I was amazed at how well she knew her way around!  She took us on "shortcuts" and while I totally lost track of where we were, she totally knew every nook and cranny of that farm.  She also knew almost everyone we came in contact with - villagers and (most) coworkers (though many coworkers were very recent arrivals so really, she knew everyone who had been there for more than a few days).  People were very friendly.  Residents always asked us where we were from (probably because they thought we may be new coworkers), and the coworkers introduced themselves and answered any questions.  We saw many different workshops, along with a few that were closed due to people being on vacation.  Still, there were so many businesses that we saw and everyone - villagers and coworkers - were proud to show us their work and explain what they do.

The farm itself was impressive, with many improvements going on to the physical set up. There were many businesses involved so opportunities for the villagers were varied.  Our tour guide worked in two different settings and liked both.  She showed us some of the items she personally had made and we were quite impressed.  We were told that there are annual meetings held on the villagers' birthdays and any changes would be made to work sites when necessary.  It sounded as though the villagers played an active role in choosing where they want to work.  I like that.  It shows a respect for their individual choices which I sometimes think can get lost in the shuffle of paperwork.

We did not see the inside of any of the houses where the villagers and coworkers live together.  From the outside they looked nice.  Nothing fancy, but certainly functional.  It was explained that a few houses make up a neighborhood.  Villagers eat in their houses but sometimes circumstances are such that they eat in another house in their neighborhood or may join in some activity with their neighborhood.  There are house parents assigned to every house, and more than one resident told us about a set of house parents who live there with their younger children.  It seemed as though there was a "family" type atmosphere with house parents, coworkers, and villagers all sharing living space.  There is a rest time built in to the day.  It reminded me of how a day is set up in Europe, where one may work in the morning, come home to lunch and to rest, then go back out to work for a few more hours in the afternoon.

All in all this was an interesting setting, though there were a few concerns I had for my RJC. 

I wasn't clear on the supervision.  It appeared that most of the villagers, even those who did not seem to be particularly verbal, were able to follow along and find their way around.  Personally, I'd prefer much more overt supervision for RJC. 

Second, the farm was so mellow that it was missing a feel of...oomph.  Now it could certainly be that the day was beyond ridiculously hot (I was seriously sweating - I'm talking the run-down-your-back icky kind of sweat) so perhaps there was a lack of overall energy due to the heat.  Still, I would have preferred to see more lively interactions/conversations.  Mostly, everyone did what they were supposed to do and seemed happy to do so but it was awfully quiet.  Don't misunderstand.  I like peace and quiet as much as the next person but it was just so very mellow and quiet that it was a bit unnerving to me.  It may just have been my personal "take" on the atmosphere, but I like to see and feel more energy.  There also did not seem to be much air conditioning.  We only saw air conditioning in the office when we first arrived, and this was a small window unit.  While I am sure the fans were acceptable, I'd have preferred air conditioning for days like this.  It was pretty brutal.  Not that she needs to live in a palace, but I'd like her to be comfortable in her living space and her work space.

Third, from asking questions, I got the impression that the coworkers generally stay one year, maybe two, with a few who are there longer.  When we were visiting, it seemed there was talk of new arrivals and people who were also getting ready to leave.  I didn't ask how long the villagers stayed, but our tour guide said she was there "a while."  I would prefer a more stable staffing situation for RJC.  I think it is difficult for new people to learn how to most effectively work with her and I like her to make lasting connections. 

All in all, there were so many great things about this type of setting and living arrangement.  If I could use this as a blueprint and wave my wand to make some changes, I could see this being an awesome setting for RJC.  As she gets older, I am sure her needs will change so I am open to returning again, especially at a different time of year when the coworkers are more settled and the weather is less oppressive.  I'd be curious to see a day in the winter, as we did see quite a bit of outdoor farm work, and I'd be curious to see what goes on when that type of work is not available.  There were plenty of indoor workshops as well so I'm assuming that the staffing of those get larger during the colder months. 

We did not get much information about weekends.  We saw a general outline of a schedule which included drama and bible study, though I assume those are voluntary.  If I do return, I'd ask many more questions about the non-work hours.  What happens after dinner and on weekends?  Are there various therapies available?  Do they go on trips outside of the farm and into the community?  How involved is the surrounding community with the farm?  How do they handle the boy/girl issues?  Medical needs?  Behavioral issues?  Those were not the sort of in-depth questions we could get answered on this particular tour with this particular guide, so we'd need to return to ask more detailed questions. 

I do not know of any residential settings like this in our state, and I wonder why.  The general model promotes a healthy lifestyle (lots of exercise in just walking around the farm, plenty of work to keep people busy, and the menu seemed healthy).  It appears to be almost self-sustaining (I imagine there are also grants, donations, and funds from the state).  I also left with the impression that most coworkers do not receive a salary.  Some receive a stipend or are attached to some type of social service program. 

For our first venture to see something different I thought we did ok.  It was overwhelming and I was tired and hot and really ready to leave by the end of the tour.  It was a bit odd that nobody was around when we came back from the tour to ask us if we had any questions or just generally chit chat about what we saw.  On the other hand, I wasn't surprised.  It was a kind of laid back place in that way.

We'll continue to look as we hear about programs.  I'm personally interested in settings that are not only the traditional group home settings, so definitely leave a comment if there is a place we should check out.  At some point if we need to relocate, so be it.  Just not anyplace too cold.  Or too hot.  It'd been to be "just right" on many levels.  Looking forward to the future.  A tiny step at a time.

Sunday, July 7, 2013

Continuing in the Face of Fear and Doubt (or) Mommy Worries

RJC is off to camp this afternoon.  It's an overnight camp for two weeks and though she has been there for two weekends this past year, this is the longest time she will be away from home...and from me.  A few years ago she did go to an overnight camp for a week and while it went pretty well, she also came home with a nasty, itchy, and unexplained rash.  It turned her off from ever going back to camp and made me very wary of letting others take care of her.  Looking back, I should not have let that scare me off from trying another camp experience but I did.  On top of that, it was easier for both of us.  Not the right attitude, I realize now, but it's where my head was at the time.

So why now?  It is becoming increasingly obvious, even in the very short time that she has been out of school and thrust into the world of adult services, that she needs to have more skills in the area of independence.  She has some impressive independent daily living skills, thanks to her most awesome school and our Board Certified Behavior Analyst!  She showers with very limited help (and that includes washing her own hair), she is capable of heating food in the microwave or making herself a bagel and cream cheese, she dresses herself and can amuse herself for hours between the computer and the iPad.  She can make her bed, empty the dishwasher, fold laundry (not that she does that very often) and will help take care of feeding the dog or letting her in and out of the house.  The big area of dependence is:  me.  It's like I'm her very own teddy bear.  She may not need me to do anything for her, but her preference for my physical presence is obvious.  In turn, I am secure in the knowledge that she is fine.  I can hear her computer in the background or can hear her buzzing around the kitchen and I have no worries about her safety.  We are codependent in that way.

There was something that happened in my brain when she lost the safety net of school and I watched her struggle to get used to her new setting.  In just the last two weeks I felt much older.  It became very clear, crystal clear, that she would need to be able to adjust to other adults around and be ok with that.  I had signed her up for camp before she graduated, and while I'm not thrilled that she is having anxiety around the idea of being gone for two weeks, I also know that this is the right thing to do.  For her. 

As her mommy, I do not want her to have a second of anxiety.  I always want her to be happy and secure.  I also know that it is part of the mommy job to figure out a way to give her that happiness and security when I'm not around.  And not to be morbid about it, but at some point there is a statistical chance that I will not be around for the duration of her life.  I would not be doing an important part of my mommy job if I did not prepare her for being with other people, in other settings, and finding a way to make that just as comfortable for her as when I am with her - or at least close to that level of comfort.

There are many positives in this new step.  I'm sending her to camp where her sister is working.  She has been there before so it is a familiar setting.  I will be sending some food with her since she's quite fussy, so I won't need to worry about her being hungry.  We've talked about some of the activities she'll be able to do and she seems quite thrilled about the prospect of horseback riding!  There is plenty to do to that will keep her busy and she is bringing her "big Barney" with her - is there really anything else she needs?

Having her at camp for two weeks means there are perks for me...I plan to sleep in the dark every night and wake up in bed with my husband.  We have plans to be away for three nights and though it includes a visit to a residential farm for adults with special needs, for the most part it's an honest-to-goodness few days vacation from work and house chores and just spending time enjoying my husband's company. 

But that is NOT why she is going to camp.

She is going to camp so that we can both learn that we are ok when we are not together.  That she can adapt, have fun, try new activities, maybe even try some new foods (gasp) and be able to find a way to communicate effectively with other people!  She is also going to have the opportunity to be with other girls in her age range.  Now that's exciting!  I'm also hoping she will learn to get through difficult feelings.  She's having some obvious anxiety about leaving for camp but learning to cope with that anxiety and finding out that she is an emotionally strong young lady who can make it through and come out happy and healthy on the other side of that emotion...well, what a gift.  A lifelong gift really, that I cannot give to her by reading her a social story or trying to tell her she'll be ok.  It's just a difficult emotional experience to get through.  But the key is that I believe she can and will get through it and come out with a heightened self-esteem and self-reliance.  What every mommy wants to give every child. 

I don't remember who used to talk about giving their children the gifts of roots and wings (probably Oprah or Dr. Phil - lol).  In any case, I get that now.  It cannot be my own doubts or fears that hold me back from giving my girls their independence which leads (in my opinion) to a greater quality of life.  RJC's independence will look different from my other child's independence, but nevertheless it is important to her emotional growth.  Learning to cope and find a new way to be happy - now those are life skills.

The next two weeks won't be without their challenges for RJC or for me, but we will continue on and get through it and grow in ways that may surprise us.  We never know what's around the corner, that's for sure, but the more tools in the toolbox, the better off we are for tackling the next challenge.  So here we go...