Sunday, June 1, 2014

Going Places

Going places... It just seems to keep getting harder and harder, both physically and emotionally. Here are the basics we might need IF we don't need to do a feed while we are out: wheelchair, Tobii, wheelchair mount for Tobii, PODD book, backpack full of diapers, extra clothes, snack, straw cup, chin dabbers for dribbling and drooling. If we are going out to eat we also need Lu's silverware that she's used to using, bibs, after-meal meds, and sometimes a tiny food chopper. And if we are going to need to do a feed while we are out then we also need her little backpack that holds her feeding pump, the bag with formula and other accessories.  It is exhausting. My goal is always to do my best to scope out situations and places before we go there to eliminate as much of the unexpected as possible and to hopefully avoid getting all prepared for something and then arriving and finding out a place is not accessible to us. It doesn't always work out for us though, and I understand that is bound to happen, but it still is hard to handle, depending on the day and my emotional stability on that particular day.

I joke sometimes about being a little "hermitty", but then sometimes I find myself out in the world and my tendencies to just want to stay home don't seem all that funny as I can get very overwhelmed by the world and I just want to go home. I know it's not a good thing. I am okay when we are going to a place that I know well, like the library. I know how we can get in and out there. I know the librarians, and they are so sweet and kind. We are just about pros at going out to eat, so that is seldom stressful.  There are a few other places that work well for us.  But mostly, home is what is most comfortable and where we can be most successful.

The thing is, we can't really keep up with busy gatherings, like birthday parties for others, and big picnics and things like that. We are just always lagging behind and so not really getting to participate like everyone else. Not getting to do things like everyone else isn't a new thing, but lagging behind everyone is something that has increased.  It just makes us feel like we're not really part of anything sometimes. In addition to that, the heartbreaking realization that the world is just not designed for people in wheelchairs has been becoming more and more obvious as Lu gets older, and heavier, and we want to take her more places. For example, we thought it would be fun to take her to Penns Cave and learn about caves beforehand...but it is not one bit wheelchair accessible.  There are TWO, let me repeat that TWO ADA (which stands for Americans with Disabilities Act) certified trails in state parks here in PA. Luckily for us, one is in Black Moshannon which is local, but the other one is in Warren. Lu loves being outside and enjoying nature, but her ability to do so is severely limited. 

It is my opinion that by not bothering to make a place wheelchair accessible, the owners are basically saying, "People in wheelchairs are not welcome." I don't mean personal homes of course, but public places that are meant for everyone to be able to enjoy. In the year 2014, would it be okay to leave any other group of people out of a place? Would it be okay to put up a sign at Penns Cave that says, "No homosexuals allowed" or "No children" or "No African Americans"?  Absolutely not! And even though there is obviously not a sign that says "No people in wheelchairs", by it not being accessible, it is certainly being implied. 

So, we nearly need a U-Haul (aka our minivan) to go anywhere. And then when we get there we may or may not be able to enjoy ourselves depending on the level of accessibility. And even if it is accessible, we will most likely be lagging behind everyone and just trying to help Lu participate in any way she can.  Most of the time I think we are real troopers about it and we just do the best we can. However, sometimes, like everything else, I just let it get me down. We went to a family picinic at Parker Dam over the weekend. That's what prompted this post actually. It wasn't an easy time and it wasn't anyone's fault, it's just how it goes sometimes. I cried the whole way home. It just was hard, and it is really hard to watch Lucy seeing what she can't do. However, she very seldom seems upset by it. And if she was, she would say so.  I guess probably because this has always been her life and she just accepts it as it is. I know I need to remind myself to take a page from her book sometimes. It is what it is. We can't go everywhere, we can't do everything. We can't keep up with groups of rambunctious children. We are slow and have to take mounds of crap with us everywhere we go. I know. 

Lately we have experienced some social situations that just make Lucy cry and cry.  It seems like maybe she is overwhelmed and she can't handle it and so she cries.  It is confusing though because situations that I think are going to be too busy and crazy for her are fine sometimes, and then other times when I don't feel worried at all she has a tough time.  So, lately we have been worrying every time we go somewhere where there will a group of people that Lu might get upset and we will have to leave. It just seems like sometimes her senses give her a hard time and she struggles with processing what is happening around her. 

 One final, and major obstacle that we face when it comes to "going places" is that Lucy is very, VERY rigid about bed time. It is just like her mind and body start saying, "Okay, that's enough for today around 5ish and she is falling asleep in my lap on the couch immediately after supper, around 6ish, and this is before she has had her Trazadone that helps her stay asleep through the night. If this routine is messed with, Lu can sometimes deal, but will often-times have a total meltdown.  There is nothing that makes her feel better until she is in bed.  So, the Shaffers pretty much don't go anywhere at night....ever.  And that's just how it is. 

I guess maybe I wrote this to help all of our friends and family understand what all goes into us simply showing up somewhere, not mention what we do once we get somewhere.  
The facts are: 
-We will usually be a tad late.  
-We will most likely need to leave early.
-Lu might get overwhelmed and cry without warning.
-I get tense sometimes because I am out of my comfort zone.
-If an event is after 5:00pm we won't be coming.  It is nothing personal, it just isn't possible for us.
-We need time to prepare for outings so we unfortunately can't just go somewhere at the drop of a hat.
-Lu has feeds at 7am, 11am, 3pm, and 7pm, so we need to always be working around that schedule. 
-Some places aren't wheelchair accessible so we can't go to there.
-And the #1, most important fact of all is that Lucy's comfort, well-being, and happiness are my very top priority, and we just have rules in our life that we need to follow to maintain as smooth of a ride as possible.  If those rules hurt anyone's feelings I will not apologize,  but I will ask that you try to understand how difficult it is for us to go places, and understand that, like I said, it's not personal. It's just what we need to do.  

Here is a homemade haircut I gave Lu after trying repeatedly to figure out a time I could manage to get her a mile down the road for a haircut:

Here she is enthusiastically riding her bike in our own driveway:
And here she is comfortably relaxing with her Daddy on our back porch:
It's just easier at home. I hate to leave, but I will for Lu's sake at least! 

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