The ear is better, the mood is great…

My stubborn son is feeling much better.  He is happy.  He is taking his antibiotic and enjoying life…  I can’t ask for more, really.

Well, I can.  I can ask all I want, but I’m fine with not getting what I ask for…unless it’s continued health and good balance in our home.  That’s all one wants.

Yesterday was Lego Wednesday, and we completed yet another building for our village.  Dada is talking discretionary deforestation and train track rerouting.  Given the fact that we both have a bird’s eye view of how crammed things are in that smallish space the village occupies, I tend to agree.  That will be this weekend’s rainy day project.

J has been more spontaneously verbal of late.  Not only does he chime in with a THANK YOU without anyone giving him a pointed look after he gets something he wants (be it help, food, a movie, or anything else,) we now get regular I LOVE YOUs when we least expect them.  The first time we were thrown off trying to figure out what he was saying; his enunciation is not the best, of course, and he wasn’t signing when he did it.  We hear PEW-OVE-EW…and scratch our head for five minutes while trying to figure out what he’s asking for before J comes up, hugs us and says PEW-OVE-EW and a lightbulb goes off…I LOVE YOU.  HORRY, obviously, is SORRY.  TEK-EEYORE-BAFF is TAKE YOUR BATH.  What he doesn’t achieve with enunciation he makes up for with volume and intensity.  It’s a little like being in the path of Sam Kinison’s delivery of any line ever…but it’s spontaneous, and it is awesome.

I have good things to tell the doctor tomorrow, but I also have concerns.  The whole thing with not wanting TGG around worries me.  Will J ever want his brother back?  Is it something J needs to fix, or is it something TGG needs to work on?  We make sure that we mention TGG in a positive way, and we do our best to show J how present he is in our everyday lives, but…  J’s just not into it right now, and it feels wrong to force his hand.  We might have to?  Maybe?

I have list of questions.  I will try to address al of them without coming across as a weirdo.  It’s very easy to feel like one is being over-punctilious when trying to find out if the way things are being approached is the best.  As parents of a disabled individual we often need to hear that we’re not screwing up massively, or that we are not as hysterical and silly was we sometimes think.  This makes us come across as more hysterical and sillier than we would like.

We have resumed our walks to the mailbox.  We have to strategize so we don’t run into canines that J might find intimidating, but J is also working very hard at not immediately freaking out when he sees a dog in the distance.  Some days are better than others, but we can’t ask for more than that.  Well, yes, we can ask for the opportunity to someday have a dog of our own, but we’re not pushing that either.  (We just KNOW that J would get along with a kindly, sweet, soothing Golden Retriever named Mott the Hoople if given the chance…but that’s probably just our imagination.)

J had missed wearing his beaten up Panama hat, and he dons it with panache when we’re heading out the door for our walk.  He’s not ready for shorts (I’ve bought new ones to accommodate his newer waistline…hopefully we don’t need to go up another size, but we’re ready if it happens,) or sandals, but he has worn his lighter shoes to go out these past few days.  I am very glad of this as I’ve been stepped on with the snow boots more times than I care to admit over the course of our winter outings.

Our plans to move are reviewed and revised frequently.  We want to make sure that our prospects are positive, and our expectations are not so high that we fall flat on our faces. The focus of our plans is, of course, what is best for J, so we continue to review and revise, and fine tune, and consult…with each other, with the bank, with the job boards, with the universe.  We find, as we move along this process, that our requirements are more modest than we originally estimated.  It is a rather nice feeling.  Daunting still, but nice.

And now, off I go to use some time J allows me while he is on his elliptical (it’s still The Sound of Music) so that I can get some reading done…I think I’m good for thirty-odd pages and a cup of tea.

 

Advertisements

A tiny step is a step nonetheless. Even if it’s followed by a stumble?

We just had our first bandaid-less breakfast in weeks.  We just had our first SIB-less breakfast in weeks.  Granted, it was followed by SIB after about 20 minutes later, but it’s progress, isn’t it?

I knew you’d understand.

Continue reading

A return to calm seems iffier than expected…

The national mood is far worse than the mood at home.  J is still iffy, but he’s trying very hard to improve.  The country?  Not so much.  And, no, this doesn’t mean people need to “get over” Trump being president-elect…it just means that I disagree with the way this is being handled.  The unpleasant rhetoric hasn’t really stopped (it’s just shifted,) and now there are acts of violence sprouting in places.

I keep asking myself if this is productive.  I keep telling myself that people are THAT upset (it’s not like I’m bouncing through a field of wildflowers singing to the sky either,) but I wonder…does this advance the cause of disagreeing with the process?

Yesterday we walked to the mailbox after J exercised with the elliptical (while watching Meet Me in St. Louis) for an hour.  The small boards I attached to the fridge with magnets seem to be helping him, too.  He focuses on that part of his day with a healthy degree of attention.  On one is I WANT with all the food he gets that day, and on the other is ALL DONE.  In the morning we put up the snacks he’s getting, and as the day goes by he moves them to the other board.  It’s easy to forget sometimes, in spite of the abundance of pin-up girls on his bedroom walls, how visual J is.

The SIB is abating.  There are sudden and unexpected flare-ups, but the intensity seems to be lessening.  It is becoming easier to redirect him, too.  I don’t think we’re out of the woods, but we might be approaching a clearing where things will be clearer and safer for a while until we can move on to the next stage of our progress through whatever this is.

Of course, our worries will never disappear.  If there’s one thing I’ve learned in life it is that we just change what makes us fret, or it gets bigger or smaller, but it never really goes away.  Maybe I’m just not enlightened enough?  I’ve heard people say “I don’t worry,” and I feel compelled to check their pulse…it seems such a foreign concept to us this “not worrying” thing!  I don’t know if they mean “I don’t agonize” or “I don’t let it overwhelm me.”  They just say “oh, I have no worries.”  In my book that is a non-existent utopian neighborhood in the realm of La-La-La-Dee-Da Land…perhaps I’m wrong, and it’s not, but I doubt it.

J, yes, is happier.  His digestion seems to be good, but I do keep a closer eye than I did a couple of weeks ago.  He is starting to accept my knocking on the door and saying I need to check before he flushes with a little less mortification.  He rolls his eyes.  If we can reach a point where he tells me if he’s having trouble this will become easier.  I am hoping that we can achieve that soon.  I understand how difficult this is for him even though he is pretty much used to being child-like in certain aspects.  Mind you, it’s not that J is a child, or that we treat him as such…it’s just that there are things where his independence is still in the early stages, or where -because of his difficulty communicating his needs- I have to intervene as if he is still a child.

J has discovered the joys of an adjustable massage roller we bought him during a shopping trip a couple of weeks ago.  He wasn’t keen on it at first, but he let me try it on his back a few days ago.  He was OK with that first try.  When I tried it on his feet he realized “hey, I like this thing!!!!”  He now asks for it…in the morning, before getting out of bed, he wants his feet and legs massaged; after his shower his back and shoulders get attention, and he will randomly request it during the day for his arms, shoulders and feet.

The variety in exercises we have introduced is helping J be happier.  I know that sounds stupid, but he feels the social interaction more than he does the actual physical benefit of working out.  His form needs work…lots of work, but he smiles and gets into whatever it is we’re doing each day.  Granted, he is still wearing his brace and bandaids while does this (which affects his form somewhat,) but he is varying his routine.  He likes to sit on the balance ball (even though his balance is not stellar…in spite of the attachment to keep him in place,) but there is just no way he will ever be comfortable while flat on his back.  We don’t know WHY he dislikes this, but it is a fact of life around these parts.  You can put J at a 15% angle, but you will never get him to lay down flat.  He will scream and struggle, and I suspect it harks back to when an ENT messed with some earplugs that had become wedged in his ear canal because someone at school had the brilliant idea to cut them in half before putting them in…  When I tell you there was blood coming out of his ears, and I discovered that -small though he was at that time- he could turn into the Incredible Hulk I am not hyperbolizing.

That was the day he discovered The Disney Store…I had to do SOMETHING for him to forgive me, no??????

Anyway…

We keep plugging away at our checklist of options.  We want to help him.  We are on this like hairs on a gorilla.  If anyone has any suggestions, please, feel free to chime in.  I will try everything.  At this point he seems to be cheered by his mother imitating Rip Torn’s Zeus from Hercules when he coos at Baby Hercules…

 unknown-1

and he also finds it hilarious when his mother lip-syncs to Mary J. Blige’s Work That or Gwen Stefani’s Hollaback Girl or Rich Girl (featuring Eve.)   The Monkees’ Little Bit Me Little Bit You is another favorite…because I do all the Monkee parts except Davy Jones.

Well…off I go.  Working on less iffy…regardless of how ridiculous things might get around here.

 

 

A small improvement, and we’re glad of it…

All my frantic printing, laminating, velcro-ing and reinforcing yesterday morning yielded positive results.  J didn’t have a tantrum last night.  He still asked for enough bandaids to immobilize a small animal, and he’s still wearing a piece of a leg of a pair of tights over his right hand, but no tantrum is progress.

Last night when we told him that Friday is a holiday from work for Dada he asked to go to the movies.  It was so spontaneous and unexpected that we said yes, and he went to the kitchen and put a movie on the schedule.  Dada, who was on his way up to the bedrooms with a basket of clean laundry, noticed that J was actually weighing the possibility of going to Target or going to Five Guys, and he opted for Target.

Still no word from the psych, but we suspect he’s out of town for the holiday and will reply as soon as he returns.  In the meantime, we’re going along with what we’ve put in place, and it seems to be working for the time being.  Hopefully, J will continue to feel encouraged by the hoops we’re jumping through, and he will modify his behavior without the need for more medication.

And now, off to do another chore so maybe we can go to the pool, or take a walk.