“I’ve Been Thinking”… it can be pretty damn tough.

Some days are good and others nowhere near good.  By “good” I mean there are no major tantrums, there are no problems or issues sleeping, the constant counting of days until “home” happen only a few times throughout the day, sleep is somewhat regular although he ends up in our bed at 2am anyway.  Those days can still be considered “good” days.  That’s about all we count on for Shane right now.  The change to Florida has been a big stresser for him as it has for all of us.  Being in a new house (although he’s visited here every year his whole life), not having any structure to each day and the everyday inability to communicate what he’s going through.  Bad days are ones where the tension, stress and anxiety are thick in the house.  Shane comes up to everyone in the house constantly to say “Hi” and expect you, in return, to say “Hi” as well and if not he gets mad.  Then, every screech and yell and outburst Shane makes in his bedroom (also his own man cave) comes out of frustration for something.  His appetite is even more diminished and limited than usual.  Shane will act out more often both verbally with protests of frustration and, physically, as he slams doors, hits walls and throws things with the occasional hitting or kicking of one of us.  His hand “stimming” (constant hand flapping, verbal repetition and moaning, pacing, etc) is usually non-stop.  These days are the hardest.  I hate these days; Brooke hates them and the girls do too.  We have to give Shane additional space, give in at times to certain requests (McDonald’s, golf cart rides, etc) and keep the environment as light and fresh as possible and focus on anything positive.  These days are tough though and they wear on all of us.  I can only imagine what it is doing to Shane.

I feel overwhelmingly guilty for putting Shane in this position now on top of other things he’s endured in his life.  And not having the resources to help him more is heartbreaking.  Not being able to provide more for Shane eats at me every moment of every day.  The guilt I feel also goes for Ryan and Delaney except they can voice concerns or challenges (when they really want to) and that helps to work through issues that arise as well as celebrate every success that comes their way.  It’s obviously different for Shane and his inability to communicate wants, needs and just converse in general.  We’ve hit a roadblock of sorts at the moment here in Florida.  For Shane we are still waiting for him to be selected in the next lottery at The Learning Academy at The Els Center of Excellence (being a charter school admittance is lottery based, regardless of need).  That, it seems, is going to take a bit longer than we initially expected, but at least he is on the list (again, keeping some positive vibes going).  On the home front, we are going to be in “limbo” (not the party game either) for a while longer now.  Our ability to move on to a new home for us has come to a halt and we will be living with my very gracious Mother and Father In-Law for the foreseeable future.  Yes, that’s right, 7 people in a 3 BR house!  But… we will manage.  I am still in awe of what Nanie and Boppy (Babo and Shirley) have done to help us in this process coming to Florida – in addition to so much more over the last 25 years!  Family helps out family and no expectations are needed – we just make it work.

Sounds like a sob story, doesn’t it?  It is.  And that’s not to say that this is being put out there for anyone else to sob or feel sorry for.  No way.  That’s for us to do as we wish.  And we do it often enough.  I guess what is behind me writing this is to say – “Hey, not everything is good in our house.  And not everything is bad”.  We put on the smiling happy faces for social media and that, truly, is not healthy.  We tell others “Yeah, things are going well.  We’re settling in great”.  However, there are circumstances beyond our control that make those statements untrue.  It is still our role to re-position our mindset and emotions to deal with the issues at hand and move forward.  My Dad would say “You have to play the hand you are dealt”… and we are, all of us are… and all of you are too.  Play it, go ALL IN every day and commit to every opportunity to make things better.  If not, you’ll sink and sinking just plain sucks and it is very tiring and will wear you down.