Seventeen days in…

Habemus groovus…  Or, in plain English and not that freakish attempt at Latin, we have a groove!  It’s not the best groove, and I’m sure it will be fine-tuned further as time goes by, but it’s a groove nonetheless.

J’s newest obsessions are simple and vaguely familiar: organizing MY closet, saving electricity at all costs (to the point of people suddenly finding themselves showering or shaving in the dark,) and making sure Dada is out the door without fail on days when he’s supposed to be heading to work.

The binder with the breakfast selections is a hit, and we’ve only had issues one morning when Dada was in charge and J got yogurt and pear chips for breakfast.  To hear Dada tell it, J gave him the most amazing WTF look ever.  That’s what happens when mother has a headache and stays in bed until her Tylenol kicks in…

J now has his own apron and chef’s beanie, and he happily dons them when it’s meal prep time.  He has opinions, too.  It’s a little like having Christopher Walken in the kitchen…61659035

This applies to things like mushrooms, garlic, cheese, basil, and chicken pieces.  Pasta, also, elicits a hand movement that beckons greater amounts to the cooking pot.

We have discovered that he sometimes doesn’t want to go out.  It’s not that he’s upset, but he wants to stay home.  Maybe he’s just happy in his lounge pants, or maybe he doesn’t want to be hassled by getting in and out of the car and sitting in traffic.  Sometimes he’s just happy doing whatever it is that he has decided to do.

For the past three days J has been sorting a two-cup container of glass and resin beads.  He does it his own way, and it’s more efficient than the way I showed him for doing it.  He watches movies or listens to music while he sorts, and he lets me come in and look, and then he benevolently waves me away.  When he’s done with that container, there’s a second one of equal size filled with a greater volume of smaller beads.  I don’t know if that will make him happy or not, but we will find out soon enough.

We are learning a little more about how to navigate this post-school world each day.  Some days are easier than others, and some days our nerves are frayed while other days we seem to be fine regardless of the difficulties.  Some days things are truly overwhelming for all of us because, well, it’s three adults living in the same house, and some of us are parents while one of us -in spite of being an actual adult- cannot always be left to make his own decisions.  Other days we deal a lot more easily with the limits that have to be set to make things function properly.

Life is complicated.  We try to find balance at home and things start unraveling elsewhere. We have always been an independent unit; we have not really had a network of relatives and friends supporting us every step of the way.  Yeah, people ask…  Yeah, people call for the holidays.  Yeah, we get an e-mail here and there, but people don’t “get” what this is like here.

Take, for example, a recent family event.  One of Dada’s nephews got married, and I had to repeatedly explain that no, we weren’t going to the wedding.  A) It was out of state, B) if we couldn’t manage to travel as a family for my father in-law’s funeral, why would we then make arrangements for A PARTY, and C) J wasn’t invited.  What are we supposed to do in that case?  Not take J and leave for a few days so we can partake of some social event?  Or take J and find someone to watch him for us while we go to the wedding?  When we said no, we weren’t going, the next question to arise was “well, isn’t Dada coming?”  My reaction, basically, was this…


I asked Dada anyway.  His reaction was this…


We sometimes wonder (I mean REALLY wonder) why people don’t “get” why this is not a practical request.  We have actually caught ourselves sitting around at the end of the day pondering this…



We’ve reached the sad conclusion that people are just not that invested in us.  Not that they have to be, but it would be sort of nice if they put just a teensy weensy bit of thought into why traveling 2500 miles each way might not be something ONE of us wants to do just to attend a wedding.  Seriously, how would it look if my husband of seventeen years hopped on a plane to go to a black-tie wedding at a ridiculously expensive venue with an open bar while I sit at home single-handedly taking care of our 21 year-old disabled son?

It’s not that he can’t, mind you.  He’s had to travel before.  His father’s illness, the funeral, work…he is OK with doing that because, well, how can he NOT go…but do we REALLY think he’d want to go to a party without me?  This is the man who asks me if I want to go to the hardware store with him because we can grab a coffee on the way back, we can talk and hang out.  He wouldn’t enjoy being there stag when he has a wife who is at home trying to negotiate with a person who uses an iPad to communicate his wants and needs.  In what world is this logical???

People KNOW we won’t go.  We really are not particularly social (hello?  I’m the one who waited for the bus wearing a t-shirt that reads “Do I Look Like a People Person?”,) and when we do go to a party we tend to stay together, chatting with each other, basking in the opportunity to not be wearing yoga pants/track pants/t-shirts/slippers.  We HAD to get invited (ah, social obligations…they will be the death of us…just send us an announcement and we’ll send you the same exact gift as if you’d sent us an invite, thank you,) but did they have to NOT add J’s name in there?  Do we really seem like we would show up with Brother Kong wearing a tux and making a spectacle of himself thus ruining everyone’s expensive good time????

Come to think of it…it does have its appeal, doesn’t it?


So, in conclusion, people don’t GET it.  We don’t live like they live.  We don’t have the luxury of hopping on a plane and showing up for a wedding just because there’s an open bar.  For one: how easy would it be to find a truly trustworthy person to take care of a 21 year-old developmentally disabled individual for a whole weekend?  For another: how would HE feel when suddenly thrust into the care of others so we can disappear for a few days?  It’s bad enough that we have to arrange for someone to help watch him while I’m in the hospital for an outpatient procedure…can you imagine for a weekend????

We are falling into the groove.  We are making this work.  We are figuring it out.  We are still surprised that people are so clueless, and we can’t help but feel comfortable in our isolation.  Explaining, obviously, doesn’t work.  People don’t get IT…

The sad thing is we are starting to think they’re really not supposed to after all.





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