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.