Sunday, April 13, 2014

The Positive Side.

Not much is written about the positive side of autism.  I know that I tend to be such a worrier that I sometimes do not look past my concerns enough in order to enjoy my gal for who she is as a person.  It's not that I am not completely head over heels in love with my older child, just as I am with my younger one.  It's that getting through the day to day stuff sometimes gets in the way of sitting back and objectively appreciating the little moments.  I got to do that yesterday.

Yesterday it was pretty much RJC and I for a good chunk of the day.  We spent time in the car traveling to and from the Aquarium, went to her favorite restaurant, and stopped at a cute beach for a short time to hang out near the water before heading home.  It occurred to me that while this autism world can be all sorts of things complicated, I am a very lucky mom when I focus on the positives. 

When we were visiting the Aquarium, I saw preteens and teens moping around, playing on their phones, obviously not interested in spending time with their parents - or at least not interested in looking like they were enjoying spending time with their parents.  My girl however, had no such qualms.  She would hold my hand and excitedly point out things of interest.  "Look, there's a fish!  And another fish!  And more fish! And a penguin!"  She was thrilled to be there and made no bones about it.  People around us were alternately amused and perplexed but she paid no mind.  She would go from one exhibit to the next, pointing out how cool everything was...loudly and with gusto.  We went to the 4-D movie (honestly, that's what it's called) and she was completely involved, yelling at the screen and squealing when she got wet from a mist of water.  Everyone in the theater knew she was there and knew how she was feeling about the movie.  Every bit of her was involved in the experience.  I honestly laughed out loud and felt no need to stop her from expressing herself.  She was not bothering anyone and was completely immersed in her own happiness.

Next stop, one of her very favorite restaurants where they know her and remember her, even though we are only there 5-6 times a year.  Employees make it a point to let her order on her own and repeat  back so I can clarify.  Those who are not assigned to our table will stop by just to say hi.  She touches people in a way that I do not.  Nobody remembers my name, but they all remember hers.  She is the "Norm!" of that restaurant and it warms my heart.

We then stopped off at this little beach where she watched a guy bring in his canoe.  He was having some difficulty balancing it and she laughed right at him.  He smiled back a bit sheepishly when he finally landed on dry land and did not seem the least bit offended.   She threw a few rocks in the water.  The bigger splash, the better.  It was not an expensive outing, just a stop along the way to appreciate the fact that warmer weather was here and enjoy the relaxing sounds of the water.  She didn't mind making the stop.  We didn't have any deep, long conversations but just enjoyed each other's presence.  She was calm and though she did not want to stay long (she was quite tired out by then) she was happy enough to make the stop.

The ride home was great as she watched her DVDs and sang along.  I knew exactly what scenes she was watching - over and over - and could hear her laughing at some of them and reacting to what was happening.  "Oh no, he fell down!" she would shriek as she laughed and laughed, watching it again and again. 

I realized, somewhere along the line that day, that most parents do not have their young adult child reach out for their hand or overtly express childlike joy.  For sure, they enjoy their adult children in other ways that I will never experience with my older gal (I certainly look forward to the conversations and time spent with my younger (also) over 18 child).  The difference is that RJC, while chronologically is an adult, is developmentally not anywhere near adulthood.  Therefore she has no filters in terms of her emotions.  While this is not a positive when dealing with the negative emotions, when I hit a day like yesterday, it's just awesome.  It's a reminder of how to look at the world.  A reminder to express joy and happiness over small things.  A reminder to let loose, let everyone know how cool things are so they take another look.  A reminder that you are part of a community and people enjoy your presence just because you are you.

Yep.  There is a positive side.  And we all have something to learn from my girl.

Sunday, March 9, 2014

Learn from My Experience.

Learn from my experience.  While it is true that we are all only human, those of us who parent vulnerable adult children sometimes need to lean just a bit more toward the superhuman.  We have lives in our hands, literally.  Our children's happiness and safety rest on our shoulders and this needs to be embraced.  It is a living, breathing issue, that needs constant monitoring and may include changes being made. 

RJC's new program has been a bit of an adjustment (we had the one really bad day the first week) but since then she has been moving right along, learning the schedule and the staff's expectations.  While it should come as no surprise that she is much happier and relaxed at home, it is amazing to me how big of a difference there is in her.  She is a different person - more relaxed, using more language, willing to be more flexible.  There's a part of my brain that screams, "WHAT WERE YOU THINKING IN WAITING TO MAKE THE CHANGE?" 

I know exactly what I was thinking actually.  Just some of my inner talking points:

What if we make a move and it turns out to be a bad move?
What if I cannot find another program for her?
What if I cannot find a way to transport her?
What if I just think she is not happy where she is, but she really is happy where she is?
What if the program has some of the elements I am looking for but not all of them?
What if the move confuses her? 
What if she thinks she did something wrong?

It's all of the unknowns that sometimes keep me stuck where we are and afraid to take the plunge and make a change.  But really.  What is not an unknown in life?  Nobody knows if they will have a job tomorrow, or a house, or their loved ones.  I find that when I make decisions for myself I can choose to make a change or just suck stuff up for various reasons and still behave in a "normal" fashion.  It's when I have to make decisions for RJC that things get dicey. 

While she is quite verbal about very concrete issues, the more abstract issues are impossible for her to express.  She is still not 100% reliable in her "yes" and "no" answers or in conveying accurately what she did during a specific day (she will sometimes say she went to the zoo when in actuality she is just wishing she went to the zoo).  The only thing I really have to go on is communication from the program and her behavior at home. 

Making the decision that the fit was not a good one took more time than it needed to because I was doubting myself.  Plus, I am not a fan of conflict.  I didn't want to upset the program, or my Caseworker, or the State of Ct. in general (yep, in writing that seems crazy).  I did not want RJC to feel she did anything wrong or that she wasn't good enough to stay where she was.  Maybe I was reading the situation wrong.  Maybe this is a phase (of 7 months? Really?) that she will get through.  Maybe I'm just tired and reading her moods wrong.  Maybe it will get better; after all, she had that one good day a few weeks ago.  Maybe if I ask to move her I'll seem picky and petty. 

Lesson learned.  As a parent, when you think something isn't working, it isn't working.  Cut your losses and move on.  Don't think about what could have been or what should have been.  Deal with the here and now, do the research, trust the people you know you can trust, trust yourself, and make a move.  Nobody's feelings will be hurt and if they are, they are taking the issue way too personally.  For the agencies this is a business.  For our children, this is their lives.

Whoa.  Let me say that again.  For the agencies this is a business.  For our children, this is their lives.

Once a child leaves the school system and enters the adult system there is, in some ways, more flexibility.  A family is not limited by the area in which they live.  If a family chooses to transport their child then it does not matter where the program is as there is no law stating you must stay in a specific district.  There is a right of portability - you can move your child.  It's probably the best aspect of the adult world - well, that and the fact that there are no longer school vacations to do deal with every eight weeks or so.  It's a bit of a mindset change but one to take full advantage of as soon as the need is evident.  It also recently occurred to me that if people start moving their kids out of certain programs, at some point somebody will certainly wonder why.  This is actually a quality control issue. 

When I started on the path to the adult world I had expectations.  Now that we are in the adult world, why would I lower those expectations?  Now that I have my happy, funny, quirky gal back I will not ever doubt myself on this issue.  Where and how she spends six hours a day matters greatly.  Not only for those six hours but for the other twelve or so waking hours.  It's not about her just being in a physical space.  It's about how she is perceived and her perception of how she is perceived (I am a very strong believer in that fact that she is very aware of whether or not people are comfortable around her), it's about what she spends her time doing and whether or not it moves her daily living skills forward, it's about her being able to have fun and interact with other people.  Bottom line, it's about the quality of her life. 

When you think of it in those terms...learn from my experience.

Saturday, February 8, 2014

And Another New Beginning

I am not always a fan of change and yet another "new beginning" was not on my list.  However, things were not going well at RJC's current program.  It doesn't matter why.  We needed to make a change and find a new program.  It had been in the back of my mind for a few months that this might need to happen, but I really wanted to make this work.  I wanted her to be happy and thriving.  She had just left her beloved school when she graduated in June, started a new program that didn't work out so we already had to make an adjustment, but things were still not going well.  Her behaviors were escalating at home and I was getting notes and phone calls from the program that were concerning me.  I knew things weren't going great but I kept'll get better.  In truth, not every program fits every person.  It was not my gal's "fault" nor was it the program's "fault.'  This was just not a proper fit and it was becoming very difficult.  Finally, there was the proverbial "straw that broke the camel's back" and I was on the phone to my Caseworker.  He immediately had a program in mind so I made the call and the wheels were in motion.

Hubby and I went to visit, along with our Caseworker and the Behavior Analyst who was now working with us at home.  We went for the tour and asked a slew of questions.  I was pleased to realize that we were speaking the same language - there were terms we used that we all understood.  There was an underlying philosophy to this program that I was happy we went for it.  It meant that hubby and I both needed to adjust our work schedules and that I would be spending over an hour in the car before I finally arrived at work but it didn't matter.  A change needed to be made and we all just needed to deal.  The wheels of change tend to move quite slowly, as there is an approval process that includes budgetary issues, so it was a very long month before all was approved and she could make the move.

Days 1-3 were great.  Then came Day 4.  Not so great.  In fact, it was really awful.  However, what WAS great was the communication around the incident.  It was immediate, it was thoughtful, it was about problem solving and not blaming.  Communication centered around what steps might be helpful in the future and our input as parents was not only encouraged but welcomed.  While I could have done without the situation, I was also reassured that when a situation comes up, it will be handled quickly and professionally.

We've now made it through 10 days and the last five days, all communication has been positive.  She is obviously happier at home which is a huge relief.  She's laughing and being silly and using her language again.  She has clearly communicated that she likes her new program.  The note that came home on Friday expressed that they were grasping her communication style (it's not always words, there are lots of nonverbal cues that can be tricky) and that they really enjoyed having her in the program.  They explained that she could now get her own little animal to take care of and suggested a hamster as they noticed she was drawn to the one they already had there.  Wow.  An active observation that leads to a suggestion.  How cool.  As a side note, I will say that the "animal care" part of this program was something I was immediately drawn to.  It's very, very cool.

And so...sometimes a new beginning is necessary.  It's scary, but when it's the only thing to do then it's what needs to be done.  I know I tend to procrastinate because it's the fear of jumping out of the fire and into the frying pan possibility.  On top of that, change is inherently scary.  Nevertheless, there comes a point when, if it's the best thing to do for your child, it's what you do.

Here's to another new beginning...

Sunday, December 29, 2013

Getting Through It.

I have started and deleted quite a few posts lately.  I worry about how things I write will be perceived.  I never want to sound as though I'm complaining about my life with RJC.  While it's certainly complicated at times, I am very aware that there are families dealing with much more than ours.  More than that, I would not want my life any other way - I adore, love, cherish, and need both of my girls, just as they are.  I started writing in the hope of bringing an awareness of our successful moments and less than successful moments, so that when our family or other families with a child diagnosed with autism ventures out in public and has an issue or two, there will be compassion instead of judgment toward us and our children.

As RJC gets older, I am incredibly aware of the responsibility of raising a child who will never be able to be independent.  It is beyond overwhelming.  When she hit the age of 21, it became super-duper overwhelming (yes, that is a Barney the Dinosaur reference).  Most of my days look like everyone else's days.  I go to work, pay our bills, do the grocery shopping.  I visit with friends, chat with family, and take care of business.  There is an underlying anxiety, however, that generally causes me to feel distracted and deal with stomach issues and sleepless nights (such as tonight - it is currently 4:30 a.m. and I've been up for an hour and a half) on a pretty constant basis.  I cannot remember the last day I had where I wasn't worried.  I've always been a worrier, I swear I was born that way.  Even as a young child I could take a small issue and turn it in to the world ending in my mind.  I've mastered that now, thank you very much.

So the question is - how to get through it?  Until I started to really focus on that question, I did not know the answer but I have discovered through a great deal of soul searching that the way to get through it is to count on the people around you for help.  That can be tough, but really, isn't that what the world is about?  Helping each other get through it. 

Here's who I count on:

1.  My husband.  He is much less anxiety ridden and has been known to talk me off a ledge here and there.  He tends to deal in facts and much more in the here and now.  While my imagination takes me to all sorts of bad places, he pulls me back to where we are at the moment.   I remember years ago when RJC was Kindergarten age, I was in high anxiety mode. "What about" and "What if" and "How will we" was just oozing.  He finally said something like, "Can we just get through Kindergarten?"  Ok, the man had a point.  While I find it beyond amazing (ok, and in truth, sometimes annoying) that he can be practical and logical, I am also grateful. 

2.  Moms of special needs children.  Over the years I have been blessed, and I mean truly blessed, to have met some amazing moms of children with autism as well as moms of children with other special needs (ok, on a personal note I don't care for that term but haven't found a good replacement yet).  We all parent differently, we all deal with different issues, but we all understand.  It is a deep understanding that brings with it an emotional connection.  We may not hang out the way other people do with their friends (we are often limited by child care issues), but we are there for each other.  It is amazing how caring a community this is.  When we do manage to get together, at some point talk is inevitably about our children. We don't offer sympathy, we listen and we empathize.  We don't offer solutions, we offer strategies.  We don't compete we support.  Communication is easy in that we speak the same language.  While it's not often we can get together, when we do, I leave feeling "I've got this."  And I know that on those days that I may need help, there are people I can reach out to for help.  There are also days that somebody will recognize that I need help and reach out on their own. 

3.  Family.  We have been very lucky to have a family who understands if we cannot be at a wedding, funeral, Bar or Bat Mitzvah, birthday etc.  Both my side of the family and my husband's side of the family are accepting, concerned, and supportive.  Nobody takes it personally if we cannot make a visit happen - we have never once had an issue with a family member who is annoyed by our limitations.  On the flip side, when we do attend a family event, there is no pressure.  Nobody expects our gal to behave perfectly nor does anyone flip out if she doesn't.  We've actually been to weddings (we never take her to the ceremony but we've partied with the bride and groom), family dinners at restaurants and plenty of visits at people's houses.  We've celebrated Passover and Thanksgiving together.  By far, the most memorable family understanding moment - when she literally went through a wall at a summer house that somebody was renting.  Um.  Yah.  True story.  AND that family invited us back the next summer and still invites us places!  We once spent a weekend with something like18 people one big house and subjected them to Barney videos...over and over and over again. They, in turn, helped us at the beach so RJC could play in the water and I could play Scrabble.  I sure came out ahead on that one!  Our first family vacation only came about because of a family member who insisted that we spend a week with him at the beach.  Before that we had never even attempted a vacation.  It is a cherished memory.  Our family has accommodated us in so many different ways - they've gone to restaurants that they know RJC can handle, even if it's not really where they want to be.  They've sent us articles or links to websites they've run across; not because they think she needs "fixing" but because they care about our gal. While our family is quite spread out now, we still find a way to stay in touch and best of all, get together.

4.   Friends, special needs organizations, synagogue, and various professionals.  Over the years we've built relationships with friends who do not have children with special needs but who completely and totally "get it."  They understand when we take our own car in case we need to dash.  They come miniature golfing or bowling because they know RJC can handle those activities.  They ask about our gal and are truly concerned, but not in a "poor you" sort of way.  In a true friendship sort of way.  They cheer us on and they feel our pain. 
We've been involved for many years with Special Olympics - cannot even begin to say what that has meant to our entire family.  That may need a separate blog post. 
Friendship Circle offers programs so she can participate in Jewish holidays as well as general fun stuff -  like cooking and drum circles.  There are program that are not only for our gal but for us.  We've met awesome teenagers who are incredibly capable of getting her involved in the activity of the day.  We've also met people who we can simply chat with while our gal is engaged in some fun and safe activity.  It's fun for her and serves as a bit of respite for us.
Our synagogue has also been an amazing source of inspiration and support.  It's a safe place for us to take RJC where she is accepted and appreciated.  She can actively participate in the service.  By far, the most unforgettable day that I still think of as a miracle - her Bat Mitzvah.  Amazing.  We'd have never attempted a Bat Mitzvah if we were left to our own devices but we were encouraged and supported and the people at synagogue never waivered on the idea that she would be successful.  I still look back on that day and can feel the emotion. 
We have spent years developing relationships with professionals who understand our gal.  Doctors, dentists, even hospital personnel (shout out to Ct. Children's Medical Center)!  In her younger, more volatile days, we were given appointments at times when the office was especially quiet as there was a true understanding of her needs.  We hunted around and found those professionals willing to accommodate or gal.  It's stressful enough to have a sick child or child in pain, so having people to make things as easy as possible?  Priceless. 
There are people who take RJC out and about in the community which gives her the opportunity to do things that she'd never do with us.  She meets new people and makes her own personal connection.  At the same time, this gives us a chance to spend time together as a couple or spend time with Naomi without the distraction of how to keep RJC amused and safe. 

5.  Work. Sounds strange, I know.  However, when I'm at work and focused on what I'm doing, it's a distraction from the worry.  As a side note, I also happen to be very lucky that I work with caring people and have some flexibility.  It can be overwhelming in some ways to hold a full time job while trying to take care of everything that needs to be done with RJC (there's appointments, phone calls, and paperwork galore) but work is also a place where the focus is on something other than autism. 

I think about the world as it is, the future of both of my girls, and what I can do to get us through the day safely and it is scary and overwhelming.  The key is to remembering that I am not alone.    And together, we will get through it.

Sunday, October 13, 2013

Catching up

Time for catching up.  I haven't blogged since RJC started her adult program.  In truth, it's been stressful and crazy and when I'm overwhelmed and feeling defeated it seems wrong to blog.  I don't think I'm honest when I'm in that kind of mood.  So I'm catching up on the last three months. 

Here it is in a nutshell...she was participating in two programs that one agency runs.  After about 5-6 days, they felt one of the programs was not a good fit and she is now exclusively attending one program.  She was assigned a 1:1 for a few hours of the day which I think has been incredibly helpful.  For the most part, this is a recreational program.  Is this my ideal?  Nope.  I strongly feel that we need to develop some work skills and proper behaviors so she can be out and about in the community, but I also strongly feel that until an agency understands her and her potential issues, taking her out and about is not safe.  So now what?  Well, interestingly, this agency is opening another program in a few months (hopefully) that is smaller and more geared toward what I think can work for her so I am biding my time.  RJC is perfectly content to attend the current program so that's incredibly positive.  She looks at the calendar and is aware of other participant's birthdays.  She's learned to play Wii games - I guess socially that's a positive.  Still, there's tons of other stuff I'd like to see happening for her and when the new program opens I'll be an active mama and make my voice heard.  Again.  My plan is to help them build an amazing program so her friends who have not yet graduated will join her there.  I miss her having her circle of friends.  So there it is.

Outside of the program, I'm thrilled to say that she is still thriving.  I think back to people who told me that once she was 5 years old she would not be able to learn as fast and her acquisition of skills would slow down.  They were wrong.  Very. Wrong.  Her language is still emerging.  I find that so much fun and just incredible.  She said "I love you" completely unprompted one night - beautiful.  She has developed into quite the little shopper.  While I loathe shopping of any kind, she is all over grocery shopping and clothes shopping.  Her self-help skills continue to develop and she is officially able to shower without my help - hair washing and all (though I pop in a few times a week...just to be sure).

Today was an awesome day.  We got together with a few of her friends from her old school and went to a trampoline place and then for ice cream.  It was a new experience but she plunged right in there!  When we went for ice cream, our kids sat at one table together and they all ordered for themselves (we moms only piped in for clarification).  It was...amazing.  I truly never thought I'd see the day. 

So there you have it.  All caught up in just a few paragraphs!

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...