Wednesday, February 3, 2016

Where is "Here"?

Before I can begin to post about the journey that led us here, I should explain exactly where “here” is. 

A few years ago I started to look around me and realize that “here” was feeling very much like a small and dark room, which over the years had very slowly but steadily become smaller.  Our days reminded me of the movie Groundhog Day in their predictability.  The lofty goal every day was to make it through without something bad happening.  And when I looked at Tyler I had this increasing sense that there must be more out there for him as well.  We spent so much time building a protective wall around Tyler, and thus ourselves, that we lost sight of the fact that the walls that keep things out also trap things in.  Life needed to change for him and for the rest of us too.

Tyler was placed with a residential agency in November of 2015.  He currently lives in a nice small home less than 10 miles from us.  At present he is the only resident (along with staff) until he eventually gets a housemate.  His staff appears to be incredibly attentive and has a genuine affection for Tyler which is of great value to my wife and me.  They have also demonstrated that they are highly capable of making a plan and executing it well.  In his new home Tyler is expected to help around the house with dishes, picking out his clothes, and packing his lunch.  These are things that we did not require of him at home.  He also attends his day program which he has completely embraced.  He is also attending church programs twice per week which I’m told is quickly becoming a caring community around him.  Again, these were not experiencing he was getting at home.  He is even getting art classes now!

It might be easy to wonder why he was not as active with most of these things here at home, and that would be a fair question.  It certainly was not a lack of love for Tyler or willingness to give him attention.  It was more about that small dark room we had placed ourselves in.  What I mean is, we lost the ability to see past our limitations.  And as restrictive and dark as that room may have been, it was a safe place where we felt we were in control.  And….yes….it was easier.  Going out in public was hard, and there were risks of someone getting hit or kicked.  And remember, the goal had become making it through the day without something bad happening.  It became a self-fulfilling prophesy: the more we dug into our safe place, the smaller it got.  Now we are seeing how much that was inhibiting Tyler too. 

Of course the transition for Tyler was difficult at first.  Without any ability to understand ahead of time it must have been quite a scary experience.  But his courage was incredible and within about a week he improved in his acceptance of the staff and the routine and has been surprising everyone ever since.  He also has a doctor and behavior specialist team who are monitoring him closely and working toward using his medications to help him continue in his long term wellness.  When there is a health issue he is attended to in a swift and sure manner.

Overall there are probably a dozen people accounting for him every day in direct and indirect ways.  There are financial resources solidly in place for his long term care.  Those directly caring for him have ONE priority….and that is him.  These are the reasons why his level of care needed to change, and why we are so glad that we did.

That is just a quick snapshot of where we are today.  There are many subject here that will become blog entries of their own.  Anyone who is considering how their future could possibly look have similar questions:  What if something happens to me?  How would my love one survive a change?  How do I know when the time is right?  How would I deal with my own emotions?  The list goes on.  Many entries will hopefully address how we answered these questions for our situation, and hopefully help others to find their answers too.

Be well and good luck.    Tom

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