Working on “the new normal”

This morning I sent J off to summer school with only half his usual morning dose of medication.  The transition begins.  An auspicious sign is that J was overjoyed with the idea of going to school…he let out a loud, happy whoop when he climbed on the bus.  If I can somehow help him maintain focus and enthusiasm at a certain level, the rest of the summer will be smoother sailing than not.  Does that make sense?

As I type this I am listening to Boccherini.  I’ve done my yoga for this morning, and before J left for school he left the kitchen clean, the beds made and a load of laundry in the washer.  No, I’m not having him do my job, but I am making sure he has purpose throughout the day.  His leisure time is dictated by his own rhythm, but interspersed throughout the day are activities that contribute to the general flow of the household.  I’m breaking down “instructional time” into fifteen-minute chunks, and we have one craft activity we will work on each week, in stages, to not overwhelm and to reinforce the concept of process towards result rather than plain ol’ result.

Over the weekend, while J listened to music or watched movies, I worked on learning signs for some flash cards I found at Target.  These are the same sort of flash cards that one uses with very young children to help them expand their vocabulary.  I simply sat down and learned the signs for them, writing a directly-to-the-point description in the back so that Dada can use them too.  While I have plenty of time to practice the signs in front of a mirror, Dada relies on me teaching him and then having his memory refreshed by my notes.  Granted, this is not the optimal way to handle the situation, but it’s all we can do in light of how hectic work is lately.

Yesterday, Dada and TGG drove to Pittsburgh for a ball game.  It was their Father’s Day outing, and they had a fantastic time.  At home, J and I made home-made pasta and J had so much fun that I wish I’d had a camera handy, but one cannot really do both things at the same time.  The weather prevented us from taking a walk, but we got our exercise by dancing to music that J was choosing from his iPad.  After his bath, we worked on vocabulary, and J had a good time.  We walked around the house with the cards, found the items pictured and worked on new signs.  The news that he was going to school starting today filled him with energy when we told him on Saturday morning.  He danced around the kitchen level and repeatedly asked if he was going to school until I put the BUS on the schedule.


On Saturday morning we ran into his aide from school at Farmers’ Market.  J had stayed home with TGG, cleaning bathrooms and hanging out.  He didn’t want to go out just yet so we told him we’d take him out later.  This is the aide who works on Ceramics with him, and who usually works with him during summer school.  She is familiar and well-liked.  This summer, however, she doesn’t need the extra hours so she’s not going to be there.  She asked me if this worried me, and my brain (which can go into hyperdrive quite quickly) managed a swift calculation of pros and cons.  No, I said; we’d love to have you there because we know how much J enjoys working with you, but I think it’s good that you’re taking time off.  Of course, my brain had jerked back and forth between “but he’s going to be taking less med!  This is a disruption!” and “change is good.  It breaks up the too-strict routine and makes him fine-tune his expectations.”  I decided to lean in favor of this being a good thing, and Dada commended me on my level-headed response as we made our way back to the car.

Are you going to tell him, Dada asked.  No, we decided not to tell J, not to feed the “this is going to be different” feeling that might trigger some unnecessary anxiety.  Today, when he gets home and he’s happy with this new experience, I will ask him about who his aide is, and I will work with whatever reaction he gives me.  I am not going to rattle my own cage, and I most certainly will not rattle J’s.  It is enough that I’ve counted the amount of pills we have in this new dosage, written it down on the big kitchen calendar and calculated the window of opportunity for things going downhill, and when to call the doctor to let him know how it’s going.  Mind you, I am also keeping notes on this…and what I refer to as my “cage” is precisely this level of preparation and monitoring that I impose on myself as a way of molding “normalcy.”

J is all about routine.  It calms him.  It soothes him.  It focuses him.  It gives him something to hang on to when things seem rough.  I am all about the iteration of altered routines that become the new normal, and this is a moment in which I (as much as J) have to focus on what’s coming, and manage how to put it in place with as little chaos as possible.  I am only hoping that I don’t royally screw this up, that I don’t make a mess out of this particular “sewing” project like I tend to do when I actually sew.

I am famous for my skill at cutting patterns and fabric, for marking and pinning pieces together and for how neatly I prepare for every sewing project I choose.  Once I take my pieces to the sewing machine, the game changes completely.  I suck at sewing.  I’ve only ever completed ONE garment that didn’t look like Dalí’s interpretation of a sewing project…

I’ve cut the pieces, they’re pinned together…the new normal is about to get put through the machine.  It’s all inside out right now, and I am placing my faith on what comes next.  Let’s see what’s on the other side, shall we?


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s