November’s last gasp…

Rain, rain and more rain.  It was a cuddle up and stay in his room morning for J, but his mood continues to be good.

The only thing I’m struggling with is how tightly he straps his wrist brace on; I tell him there has to be some wiggle room, and he refuses…respectfully.  I understand that compression is a soothing resource for him, but I worry about circulation. Once in a while we find a task that will require both hands and no brace, and we make sure that his hand moves around and blood circulates freely.

One of the happiest aspects of having the med back in his life is that J has returned to the kitchen to help.  Last night he helped sauté mushrooms, bacon, garlic and potatoes…it was lovely.  Not only was he actively involved in making dinner, he was smiling and joyful throughout.  Unless you’ve experienced surly, dissatisfied J you have no idea how wonderful it is to see him pointing at herbs and spices that he wants to sprinkle on what he’s cooking.

It being “baked goods week” in the bedtime story rotation, last night he had The Little Red Caboose read to him.  Dada goes off-book on that one, too.  J laughs and laughs.  We hadn’t heard that a few weeks back when the story was read to him.  He is not a barrel of laughs, mind you; he is not in a perpetual state of “hey, dude…life is AWESOME!”  Our son is not drugged out of having ups and downs.  Our son is now open to not being surly and moody, and grumpy and self-injurious all the time.

Now that Risperdal has entered the picture once more, we are working on J’s nutrition plan.  We know the med will make him gain weight, and we want to work on helping him regulate this as best we can.  Exercise is a big part of this; as long as we can control diet and exercise habits to the degree that his blood pressure stays at a healthy level we will be happy.  Right now his routine alternates between the elliptical machine and the Wii.  For the elliptical machine he gets on and watches a movie.  He’s usually on there for a whole hour unless he’s not really into it.  The movie has to be a musical, of course; yesterday he switched from Mary Poppins (a lifelong favorite) to The Music Man, which he has owned for a while but never really wanted to watch until now.  I have to say that Robert Preston and Shirley Jones seem to have charmed him because he was actually on there for an hour and fifteen minutes, giggling and laughing all the way.

When we do the Wii, we also do weighted balls, and resistance bands.  Mind you, J’s movement is limited, as I’ve mentioned before, but he enjoys the exercise.  We are not training for the Olympics here; we are, however, keeping our bodies moving and socializing at the same time.  Sit-ups, as I mentioned, are tricky because J doesn’t like to be flat on his back, but little by little we are adapting them so he works his abs, and leaves his comfort zone slightly.  I will not force him to do something that is scary to him, or that causes him anxiety, but I will try to soothe him into more effective positions for the intended purpose.

Since gloomier-weather days are upon us, we will be indoors more and more.  This has its downside, and we are hoping that, once we relocate, we will be able to provide J with a house that has an area that allows him to be “outside” while still being “inside.”  We spend a lot of time on Zillow and Trulia looking at houses in our potential new locations.  Thankfully, screened-in porches are not unusual there, and neither are fenced-in backyards where we can grow our garden.

We are, as usual, approaching this like D-Day.  We are studying the job market, the availability of services for J, commute times, accessibility of shopping for basics (Dada jokes that Target, Michael’s and a Five Guys are musts…but we know this is not entirely realistic,) and the affordability of homes in each area.  We have a list of things we want in a home of our own, and granite counters and stainless steel appliances don’t even figure in it.  We wouldn’t want a septic tank, but that’s still a negotiable point; we’d also like a gas connection in the kitchen…I hate glass- and ceramic-top stoves, but will live with an electric stove where I can see the burners and my pots and pans don’t slide as they get hotter.  Those are trivial requirements compared to what we want for J: a bedroom, an area for his daily activities, a nice bathroom with a tub and shower, and a space outside.

We don’t have to look at school districts anymore, but we do need a hospital or urgent care close enough in case of an emergencies.  We don’t have to worry about daycare, but we would like a park, or places where J could go and enjoy some outdoor time when he can see people other than us.  We would LOVE a place where there are opportunities for a day program for him.  If this all means we take a huge pay cut and simplify our life to the most basic things, so be it.  For J’s comfort and ease of adjusting to such a huge change, we would love to find a house that doesn’t need anything major done before we occupy it, or during the first year of us living in it.

Of course, it’ll be March before we make the formal first steps to achieve all this.  J’s dental work comes first, and we need to figure out what the underlying causes for his recent spate of anxiety and SIB are before we commit to uprooting our lives and relocating.  There are, of course, those “ifs” that we must keep in mind.

We end November in a more hopeful note than we had at its beginning, and we enter December with a list of caveats.  We have plans, and we have hopes and aspirations.  Their modesty, compared to what we had before now, makes them no less important than they deserve to be.  It’s all about the little by little, the one foot in front of another, the journey of a thousand miles, and the focus of our lives being where it has to be.

Deep breaths, November.  Inhale…exhale…you will soon expire, and we’ll still be here…breathing…doing our homework.  ALL our homework.



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