Day Five of having iPhones…and life goes on in our usual way…with sprinkles!

It took about half an hour to figure out why one phone was ringing and the other wasn’t.  J was amused by this.  He walked past as his tech-unsavvy parents huddled on the loveseat tinkering with the Settings, the Volume, and all other sorts of things that weren’t working.  We must have called each phone from the house phone ten times before, after five minutes of struggling to release the iPhone that wasn’t ringing from its protective girdle, it became obvious that its ringer was turned to OFF.

That we closely (too closely) resembled Derek Zoolander and Hansel McDonald during the whole “the files are in the computer” scene goes without saying.

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The recovery period for the experience was an after-dinner nap on the couch in the library.  The phones were off and in the hallway closet all night, and only Dada’s is now out of the house and (I’m pretty sure) off and forgotten in his bag somewhere…

The weather has been unsuitable for any outdoor activity that doesn’t involve an umbrella and rain boots.  Thunder rolls past occasionally, and we go from minimal drizzle to downpour alternately.  J wants to be indoors, and he hasn’t expressed any desire to run errands last night or this evening.  Tomorrow will be a busy day: the annual book sale for Read Aloud lures us to the great wide world, and J is happy because then he will get his weekly treat of a kosher dog and fries from Five Guys.

Ah, you will be saying to yourself: aren’t they thinking of moving?  More books?  Well…yes…we have several television sets that are not going with us.  Several.  I shudder to think of how many TV sets there are in this house, and why.  The TV set we use regularly is the one in the dining/kitchen area.  We watch while cooking, or we sit on the loveseat to watch a movie or show that is streaming or playing in the DVD player.  There is a TV set in the garage (the sound is dead…it requires use of the iPod dock) that we have had for nine years…that is hooked up to the Wii and J’s workout-related DVD player.  It gets used once a day.  There is a TV that J uses in his TV room, and the one that he has in his bedroom for when he is sick and doesn’t leave his room.  And there’s another TV that used to be TGG’s and is just there, plugged in, but never turned on.  Of all these we would only take the one we regularly use, and J’s two.  The others will either be donated or TGG can claim them.  I still think we have too many TVs if we pare it down to the three.

We are looking at smaller houses, and are fascinated by the way they are laid out.  People, it seems, have rooms designed around the presence of a TV.  We have seen kitchens with TVs in them even though there is a TV in the room closest to them.  We saw a flat-screen TV installed in a bathroom,  and another in a walk-in closet (granted…that was a walk-in closet the size of a small bedroom.)  I’ve asked Dada if it would be practical to have the TV hidden behind movable bookcases.  He seemed intrigued and thrilled by the idea.  We are, it appears, definitely  birds of a feather.

Our hope is to find a house with a good finished basement that J can use for his own space.  A bedroom with a window, a nice sitting area, a full bathroom, and access to an area outside where he is comfortable and safe.  Space for a nice garden and a chicken coop would be lovely. We are focusing on what would improve J’s life.  We know he has a lot that others don’t have, and we understand that his difficulties are small compared to those of others, but…

We recently heard of a young man, in his thirties, who -like J- is in the Spectrum.  Like J he is non-verbal, and suffers from anxiety.  We heard about him because someone we know needed our advice.  The young man lives by himself in a one-bedroom apartment, and he has round-the-clock care.  He goes to a day program, and his family visits once a week.  The request for advice and guidance came from a person who is paid to be a night-time caregiver.  We asked “weren’t you trained for this?”  The answer was basically “sort of.”

That type of response is always scary.  We feel for the caregiver who is being paid (but not trained,) and for the person requiring caregiving.  No one’s needs are being met, are they?  If I, who have years of experience dealing with J, have a hard time from time to time in trying to figure out what he wants, needs, is upset about, what must it be like for people who work in shifts with a person who has trouble communicating?

How lucky are we?  We have the means (limited though they may be) to keep J living at home.  We have the physical and mental capacity to be there for him on an everyday basis.  We have gone through rough spots where we’ve been (all of us) on the brink of giving up, and yet…here we are.  J lives at home.  Home revolves around J.  No one (except maybe TGG) has ever resented this.  We understand what it means to be J’s parents, roommates, caregivers…  We don’t think this is extraordinary, but -apparently- it is not the norm.  At least not when the kid, like J, is an adult.

I don’t judge other families’ decision to send their adult children to live more independently if that suits their needs.  Some people are better equipped to adjust to semi-independent, supervised, unsupervised living than others.  Quite frankly, I think J is better at taking care of what needs to be done than TGG is, but that’s my opinion as a mother.  One’s judgement is better than the other one’s, and that with ASD thrown into the mix.  Maybe it is because J recognizes his weaknesses and admits them better than TGG does.  Maybe it’s because J is more of a follower than TGG is.  The truth is that I can tell J “this is what needs to get done today,” and it gets done with a minimal amount of hemming and hawing.

My concern, in general, is that there really isn’t more of a focus on training people to properly and effectively work as resources for those who need this type of service.  There IS a need.  There will ALWAYS be a need.  That funding, training, certification is minimal is what is troublesome.  Not every person who has a developmental disability is helpless, and not every person who works with them fully grasps this idea.  Communication is key, and there is more training being geared towards de-escalating a situation than preventing an actual escalation.  “I’m here to help you” doesn’t mean “I understand your needs.”  It means “I have been trained to provide a basic service that might/might not address your needs.”

We know that no one else is responsible for taking care of J.  We will always do this as long as we are physically and mentally able, but…it is a rather scary proposition when we realize that, when the time comes, he might be cared for by people who don’t really understand that there is an actual person inside that husk.  We are doing our best to find a proper environment, a comfortable home, a balanced lifestyle that will help J thrive, and we frequently stop to think that, once we are gone, he will lose everything that he finds familiar.  Not only will WE be gone, but the fact that he is counted as a cornerstone of our life will disappear.

Maybe other people have the right idea?  Maybe it’s best to not make life as good as we possibly can for our son?  Maybe detaching him from the comforts and solace of home is the best tack to take?

Who needs five TVs?  Who even needs three?  Who needs the cellphone on all the time?  Who needs space for all these things (yes, books are things…don’t go there with me…we could talk about it for HOURS!) when there is a person who has this life going on inside his mind that requires so much attention?  We want his world to be a happy one, and we realize how fleeting and dependent on our being there is…

That is a freaky, weird, scary thought indeed because we don’t really do “sort of,” do we?  We Yoda this thing…we do, or do not…there is no “try?”  And yet I wonder if we have, all along, been terribly ill-equipped for all this endeavor.

A fast-moving slow-motion life

Winter has slowly turned to something like spring, and the central heating is turned off for good (unless some freak alteration of the local weather conditions forces us to reevaluate the situation.)  The balconies off the kitchen and master bedroom have been “set to rights,” and we can now (if we are so inclined) sit out there to read when the weather cooperates.  The backyard will be getting a good cleaning in the coming days, but it will not get prepped for a garden.  If we are leaving this area (and we wholeheartedly hope this happens in the shorter term rather than in the longer,) we don’t want to have anything more than lettuce and herbs to deal with as we pack and organize for a move.

Just like that, in the blink of an eye, it has been a month since J’s dental surgery.  He is fully recovered, and as interested in whatever we serve him as ever.  His stubbornness has caused one semi-tantrum that we quickly dissipated by telling him to TELL US what he wanted.  Amazing what a willingness to communicate will do for the atmosphere and interaction in a household…

We have re-established a routine that J finds more appealing to him.  He takes care of laying out Dada’s clothes for work from Sunday to Thursday, and we have pushed back lunch, snack, bath, and dinner.  It seems to work better.  The days don’t seem as long and dull now that the sun is out for longer hours.  And Wednesdays, yes, are Lego Day.  J has chosen to alternate his workouts, and one day he does his elliptical (this week he discovered Fiddler on the Roof...he sounds very joyful as it plays…of course: he only gets to the part where Tzeitel and Motel get Tevye’s permission to marry.  That in itself is a pretty good workout, and he seems happy and energized when he’s done.

We are very glad he’s still exercising, and still enthused about it; we don’t know how much it’s working, but between his better choices about food, and the fact that he does concerted physical activity on a daily basis his weight seems to have leveled off.  The med, however, will always play a part in that issue, and we have to stick to it until J has, once more, “leveled off” in his behavioral issues.

Life is slow around here, but it is still hectic.  We are up early, and we do a lot of things during the day.  There are always chores to do, things to accomplish, tasks that crop up unexpectedly.  It seems like we finish one thing, promise ourselves a quick break, and then it’s time to start the next thing.  By the time J’s bath rolls around on the schedule we are reeling from so much activity.  It helps him, and it exhausts me…but that’s the nature of our life.  We deal with it as it comes, and (we hope) we will find a new groove wherever we end up after this decision to, once more, relocate.

In other news: we have joined the new millennium.  Yes, we know we’re behind by a long stretch.  Call this Day Three of Owning an iPhone.  Add to that: Day Three of the iPhones Being in a Closet, Turned Off.  Yes, we are THOSE weirdos.  Our cell phone service provider (it’s a pay-as-you-go, people) had a sale on iPhone 5S, and I bought two…one for Dada, and one for me.  They are set up.  They have minutes.  They are synced to our Cloud and our iTunes, and so on and so forth.  Dada turns his on when he gets in the car to leave for work, and turns it off when he gets there…same thing for the trip home.  Mine is in the closet until we decide to leave the house.  Why, you may ask yourself, did I even bother?  PROLOQUO!!!!  It’s now on the iPhone, and -should J not have his iPad on him because we’re just walking to the mailbox, or going for a short mosey around the neighborhood- we can still communicate.

Never you mind that it took us ten minutes to figure out how to open the case that I ordered to protect Dada’s iPhone (he IS accident prone,) or that we do a lot of squinting as we look at the screen.  Never you mind that we still tell people to call the house first…we now have a very portable Proloquo in case J and I go somewhere and the iPad stays home.  That’s all we cared about, really.

People don’t get this.  People think our lack of attachment to the television, the cell phone and the general hustle and bustle of life is odd.  We look at houses as repositories of life, books, family, not as a place where we want to add the demands of someone else’s idea of what our lifestyle should be.  “That wall…covered with bookcases!”  “That would be a great hangout for J!”  “Can you imagine sitting there to read on a nice afternoon?”  “I have one word for you: CHICKENS!  We can get a chicken coop!!!!”  “I can almost hear music playing in the background while we cook in that kitchen!!!”  Not once do we say “that’s a nice spot for a TV,” or “I wonder if we’d get good cell phone reception in that area…”  We measure distances by grocery stores, J’s favorite locations to visit, bookstores…

We don’t really know if this is a practical pace to set, or try to sustain.  We just know it’s OUR pace.  We have realized that we are not suited for too much of a rat race, or -perhaps- that we have lost our taste for trying to keep up.  The more we slow down, the more J seems to like the way things are.

So…there is a hectic quality to life (when you get older and you realize that you’ve less time ahead than behind you something happens to you…don’t ask me to explain) around these parts, but there’s also that desire to not give in to the demands of everyone else’s idea of what life is, or what it should be.

The med is working.  The communication resources and efforts are working.  The shutting out the madness of the world?  Sometimes yes, and sometimes no.  We’ll figure something else out, and we will put some elbow grease into it…now that we’ve decided what we DON’T want it’s a lot easier.

And so…another Lego for the town…it’s getting crowded there, and we need to find wider horizons…ain’t that always the way?

 

 

 

Once more…snow…

We woke up to a winter wonderland.  Of course, it still is winter, and we keep forgetting this, mostly because we want it to be over.  An 80-degree day in February gave us a false sense of spring, and now we sit here looking at the snow accumulating on everything our eye can spy outside.

J was up very early.  Up and raring to go.  I think he (and I know this is weird) heard the snow and thought it was best to just make sure Dada was going to work anyway.  School was cancelled, but there is Dada, sitting in his office, hoping the road is properly cleared by evening.

J and I have done all the chores already.  We had them done by 8 in the morning.  That isn’t, regardless of how early it seems, a record.  We’ve actually (on other winter mornings) had our chores done by 7:00 or 7:30.  He is now working on a puzzle while listening to music, and I am trying to catch up with everything I’ve put aside because I keep getting distracted by everyday life.

The lip has healed.  It is beautiful.  There will be a small scar that will show it was once a small wound, but it will not mar the beauty of J’s smile.  Interestingly enough, J’s little lip scar is on exactly the same spot where I have one from a cataclysmic fall when I was three years old.  Mine required emergency plastic surgery, and I was very self-conscious about it growing up…J is just now fonder of lip balm than he used to be…he wants that sucker to gleam when you look at it.

Yes, things are busy here.  We are working on our spring cleaning little by little.  We have realized how big this townhouse is, and how ready we are for less.  Is that odd?  Our nest will never be empty, but we do want a smaller one nonetheless.  It’s not just the cleaning and the keeping things in order; we have become less charmed by the idea of more of anything other than time to be together, enjoying the little things that make us feel happy and peaceful.  This is not, of course, a life without problems, but rather a life without added bells and whistles that make the problems more overwhelming.

We also think that J is ready for a change.  He doesn’t really enjoy this weather.  I think the greatest advantage he sees in not having to go to school is that he doesn’t have to brave the slippery surfaces from here to the bus and back.  He also doesn’t mind not having to bundle up in sixty layers on a daily basis.  Going out to appointments or for fun is one thing; the layers are manageable then…but day in and day out it becomes a huge encumbrance, and J really doesn’t miss it.  I can’t say I blame him.

There are, however, little things that we keep discovering about each other, about J, and about ourselves.  J, for example, will always obsess about the weirdest things, but it makes sense to him and, when we put ourselves in his shoes, it makes sense for us, too.  J has come to realize that we, too, obsess over the weirdest things, and he has grown to accept these quirks.  He doesn’t always agree with, or understand, them, but he accepts them.  Negotiation between us has become easier, sort of, because we are more willing to understand the little things.  A hand extends to help me off the floor; more patience is exercised because an obsessive behavior needs to be expended.  Stopping in the middle of putting a Lego together because someone’s eyes are tired becomes easier; pausing to listen to instructions even though we really are in a hurry to be done so we can go back to whatever animated movie we are watching repeatedly becomes less grating.  Waking someone up more gently because a timer has gone off and we realize it’s bedtime but old people have taken a shortcut to that particular daily milestone is a recurring act of kindness.  Accepting a shorter timer because some people are more eager to end the day than others is no longer a Greek tragedy with chorus and all…

If we can translate all this into a way of living that stretches out for the next five to ten years we will feel like it’s an embarrassment of riches.  The moments when our lens refocuses and we are more realistic we get a little down in the mouth.  If this is not easy in our fifties, what will it be like in our sixties?  J is a young man now, but by then he, too, will have crossed another decade threshold, and there will be moments when we won’t be equipped to deal with what he requires from us.

We think about this more and more.  We worry about it.  We don’t agonize, but we do hear the wheels and gears clicking away relentlessly.  And so we plan on things being smaller, more manageable, more apropos to being able for a little while longer…

And it’s snowing, and it’s almost springtime, and time clicks clicks clicks…back to lists and plans, and culling and trimming.  Tomorrow, inevitably, is another day, and we have Legos to build because a Christmas village needs new buildings even when it’s no longer Christmas.  Yes, it grows out, and over, and around…  And while we can we will keep up.  It’s what we do.  It’s our concession to J’s idea of fun.  Pauses and all, it works for the three of us.

Until it no longer does, we will plug away at accommodating each other, at understanding, at adjusting.  Less spaces to clean, and rooms to organize will be nice.  Less disruptions that we are not prepared for will be convenient.  Is it possible?  We’re working on it…

 

It’s been one week…

(feel free to indulge in the ear worm that is The Barenaked Ladies’ song of the same name. I certainly am…)

since J’s surgery.  He should be, by all accounts, starting to work through the discomfort.  We are sure that this has been overcome, and all he wants right now is to go to the movies and eat a whole bucket of popcorn.  Last night he had very crispy (oven-fried) chicken, and he has no trouble eating his 12 Pringles crisps for afternoon snack.  If J had any pain or discomfort at all, we’d know it.

The blister on his lip is healing.  Lips are difficult things to treat because the tissue is soft and comes into contact with food, drink, and is impossible to bandage to protect from debris.  We clean it frequently, make sure it’s improving (it is,) and do all we can to keep it from getting hurt again.

Sleep pattern is slightly disrupted.  That is: since I don’t sleep much anyway (hello, middle-age…) I can hear J talking to himself, giggling, and basically waiting for morning to start.  It has been starting rather early.  Not just the waking up, but also the going downstairs and getting the day started in earnest.

J has started asking to exercise again.  It is comforting on the one hand, and exhausting on the other.  The cold weather that followed last Friday’s very summer-like day gives me aches and pains that announce my body is not what it used to be.  I accept this, and act accordingly, but J doesn’t always understand why his mother is not particularly excited about running for half an hour.  It must be done, though…it is a necessity.

We are all looking forward to the weather improving on a more consistent basis.  We won’t be growing a garden this year (if we’re considering moving it’s not a practical endeavor,) but we want to be able to open windows, go for walks, be outside.  This townhouse is (too) big, but it’s still not big enough for me to sit through J’s repeated playing of anything performed by Pentatonix.  Yeah, you can write it down and certify it: I might just be the only person in the planet who is absolutely annoyed, irritated, incensed by, and intolerant of Pentatonix.  I can’t stand them.  They hurt my ears.  When played on repeat, they assail my nervous system in ways that had been, until recently, reserved for Mariah Carey and Rick Astley.  Some time around Christmas a well-meaning soul told me “oh, you MUST watch this youtube video of Pentatonix…it will blow you away!”

Aside from questioning the person’s good taste and sanity, I started to wonder why they thought I, of all people, would find this appealing.  And then J realized how much it bothers me, and he plays it so I won’t go into the TV room.  We were putting a Lego together yesterday, and -since he realizes I understand there is no pause in Lego-building-  I would sit through whatever he was listening to…and he chose The Carol of the Bells (a song that I only can stand when The Sweeney Sisters do the Bells Medley on old SNL re-runs.)  The feeling of being trapped in a maze that kept shifting was pretty bad, and I actually told J “dude, you are better than this…seriously…”  He laughed and giggled, and started the song over again…

That’s where we are: J is back to his normal, mischievous, annoying, funny, brilliant self, and I am hoping that getting older doesn’t impair my ability to appreciate this.

And, yes, I cannot stand Pentatonix…even worse after I actually SAW them…  I know, I know, I know…I’m a horrible person.  So sue me…