When you’re only halfway up, you’re neither up nor down…

Thursday’s appointment with the psych left us with a decision dangling in front of us: J might need more med.  We are a house divided: I say we can figure this out by the end of July, and Dada wonders if we just have to give in to adding the .25 we took off six months ago.

The kid has been testy.  He has been obsessing about his right hand.  He wants bandaids on the base of his thumb and all the way to his wrist.  As a sign on compromise, I made him a wristlet out of an old pair of brown tights, and he’s been wearing it since last evening.  It seems to help him stay calm, but he still makes sure it’s there.  His hand calls to him like mermaids on the rocks called to Odysseus.

On Friday evening we took him for his weekly outing.  We came home with a Marilyn Monroe poster, a curtain for his bed (which he wanted up against the wall, creating a small island away from the bedroom door,) and a lava lamp.  On Saturday we added glow-in-the-dark stars to his bedroom environment.  I made him a pillow with some imitation sherpa fleece, and he really likes that.  He wanted another blanket on his bed, and we complied.

His TV room is a work in progress, but he is choosing more things for it when we go out.  A string of paper lanterns shaped like stars hangs in the TV room.  A variety of paper lanterns, poufs and such hang from his ceiling…he had fun assembling them.  He is now the proud owner of kinetic sand in two colors, but he prefers the sand-colored one…the green, I assume, will come into play some other day.  I have arranged for his TV to get mounted on the wall early next week, and we will start buying balls for his ball pit little by little.  That balls for ball pits (and ball pits themselves!) are so pricey is baffling to us, but if it has to be done, it has to be done.  And, FYI, J gets a say in all this…

Getting J to use his say is another thing entirely.  The first thing that has to be broken is the pattern of echolalia.  Until he is willing to not just repeat the last thing he’s heard, and he starts exercising his right to comment, we’re circling the field and never really landing.  To achieve our goal of getting him to tell us requires a great deal of patience.  Inventiveness helps a great deal, too.  Sometimes I have to suggest things that I KNOW will get a resounding NO to actually get J to participate in picking something he likes.  Other times, his response is so immediate and spontaneous that it makes me want to dance.  Thankfully, this has yet to happen in front of anything wildly expensive…

If anything, this summer has taught me that next summer will not be easy.  That transition from being a student to being an adult that’s aged out of the system will be a rough one for all of us. Looking ahead I can tell things are not going to be as easy as I had hoped, and I am starting to make even more adjustments to my plans.  On Monday (because this would be the week when everyone takes advantage of the holiday observance on Friday to take their vacation) I will call the college to inquire about posting a part-time job for a student who wants to work with individuals on the Spectrum.  It won’t pay much, and the hours won’t be many, but J needs someone other than me to interact with several times a week.

My hands are full.  Even when I seem to be just sitting, I’m doing something.  J requires my attention and I am inclined to acquiesce.  Until we can figure out the proper path to follow, I am, as it were, “it.”  Yesterday morning I had to explain to Dada that, sadly, neither he nor TGG fully understand the concept of “spending time with J.”  TGG takes him to the gym everyday, but all the while he wears his headphones and checks in on his brother periodically.  I explained (ok, it was more of a rant) that J is already isolated enough, and just being present in the same room with him isn’t anywhere near enough to what he truly needs.  Yes, J enjoys going to the gym, but I know -because I’ve seen it- that some of his enjoyment is merely because he is noticed and included.  He needs a little bit more than that.

I can’t referee every event.  I can’t always offer suggestions and model behavior.  I will, at one point or another, be incapable of ALWAYS being there.  I am not trying to wash my hands off the whole thing, but it would be nice to know that I have the luxury of not fretting about how things are at home should I need to NOT be at home at any given moment.

Sometimes I really wonder what people think I do all day.  I think all primary care givers wonder this because people seem to not fully grasp the complexity of our role.  I have three siblings, all older than me; one calls periodically, but has learned that I won’t always be able to pick up the phone, or even to return the call the same day, the next day, that week.  Another has learned that the only safe way to interact with me (because we have butted heads quite violently all our lives) is to keep things strictly on e-mail.  The third…oh, the third………

The only calls that compel me to answer IMMEDIATELY and WITHOUT HESITATION are from people who live in this household, the school, the bus driver.  I will VERY LIKELY answer when my stepmom calls, and she understands why I don’t always have a chance to pick up…she has my dad (who is bedridden and entirely dependent on her) to care for so we’re on a similar routine.  Everything else can wait.  I will check messages whenever I’m done with whatever it is I’m doing when the phone rings and I can’t immediately answer.  I prioritize.  And, mind you, I don’t prioritize because I’m doing something banal.

You might say “oh, but you’re sitting there typing right now…that’s banal!”  Yes, and no.  This is cheaper than therapy, and I am sitting a few feet away from J’s TV room door because J wants me here.  I take advantage of these moments to file paperwork, balance checkbooks, pay bills, organize lists of things I need to do, research things I need to consider for J, for me, for the whole family.  The rest of the time, I’m busy. Genuinely busy, not “I don’t want to talk to you” busy.

Last night, in the middle of a dinner that took twice as long to cook because J decided to have a mini-meltdown in the middle of prep, this one sibling called.  We DON’T answer the phone during dinner.  Dinner is sacred to us.  Unless there’s an emergency, or we’re expecting something important to happen, we eat through the ringing of the phone…  Once we were done with our meal, I checked the message: this person feels “left out” because I talk to “so-and-so, and this other so-and-so.”  Why don’t I pick up the phone????

Anger bubbles up, and I have to control it.  Yes, I speak to so-and-so WHEN I HAVE THE TIME.  And this-other-so-and-so and I speak via text message which I’m using while I’m sitting here doing something else.  This one sibling makes it sound like I’m burning up the phone lines chatting my little fanny off about all sorts of crap that is completely trivial.

The bulk of my human conversations happens with people in my household.  The next layer of frequent conversation happens with my stepmom and people who work with J.  I am famously quiet around the neighbors.  I am famously reticent, and reserved.  Only the anonymity of this page allows me the comfort of venting my feelings.

The person who called last night has never met J.  Never.  A nephew that has never been met, a child that isn’t understood, an embodiment of only goodness knows what misconceptions about Autism that receives nary a nod of recognition except when it suits this person.  This is the same person who keeps suggesting I teach J Morse Code so he can communicate, and who doesn’t listen to my explanations as to why this is not practical.  Because I am the little sister, and I’ve obviously not altered in the over 20 years since we last clapped eyes on each other…

But he/she feels left out.  I am trying to figure out what my son’s life is going to be like, and he/she feels left out because I exchange some text messages or brief conversations with another sibling.

I am baffled enough by the complexities of J’s future to allow my bafflement about this particular bit of self-absorbed behavior to override my main mission.  I do, however, feel like writing a very angry letter…but that would be a waste of time I can spend doing something more productive than beating my head against that particular wall…

Focus.  I am now going to focus.  Pricing ball pit balls…wall mounts…researching the effects of going back up on the Risperdal…

Yeah…trivial stuff like that…

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