Let’s call it an investment in the future…shall we?

Yesterday evening, with my patience at a very low ebb, I told J we were going to Urgent Care.  He had been hitting his head quite insistently, and his hand looked redder and angrier than usual.  The egg sized bump on the side of his head was not giving me any joy either.

Off to Urgent Care we went.  Our friendly neighborhood NP said “wow, it’s been quite a while since we’ve seen you!!!”  I admit I glared at him…  J was all too eager to leave, and I told him that he was having his hand and his head looked at because enough was enough.  J had to have tangible proof that his SIB is a medical situation.  Something has to help him get a shard of understanding about what he is doing to himself, right?  This was it…

To any outsider watching my interaction with J I must’ve looked like the worst mother ever.  I was very no-nonsense, very terse.  The average outsider will not know that this has been going on for a while and I have been fighting the good fight, working through meltdown after meltdown, witnessing SIB while trying to deflect it.  The average observer will judge me based on the lowest ebb of patience…

Explaining that our son has ASD and that he is anxious and has been hitting himself invites judgment whether we want it or not.  People, even when they are medical professionals who should know better, will wonder why the band-aids, why the SIB, why the haunted look on J’s face and the barely contained frustration in our expressions.  We ran the gamut of explanations: the band-aids are not for injuries…they’re comfort items; he hasn’t bled, and he seems to be fine, but we are concerned; he has been med-free since December, and this is just a prolonged period of anxiety that seems very difficult to resolve.  We want to make sure that he hasn’t broken anything…

I would love to attach to that “do you have kids?  Are they neuro-typical?”  I don’t because then I’d be just as judgmental as people are.  I can safely say that “if I’d known then what I know now” my life would be different, but we are young and clueless for a reason, right?

J’s hand is fine.  No fracture.  Just bruised.  Very bruised.  He must be in pain, or at least sore, the NP we had never met before told us.  The head is just a bump…it might break up sooner rather than later, and we might see bruising on the side of his face.  His skin is fine…dry and a little scratchy from all the band-aids…have we tried medical tape?  I tried to explain that there is a pattern to how each band-aid is applied, but then I realized that I was wasting my breath, and said I’d look into it…

J behaved for the X-rays.  J behaved while we waited for the results to come in.  J wanted to come home, but he could tell I meant business.  When Dada went to the grocery store I told J we were waiting in the car.  He was quiet, and he realized that I was concerned enough to put him through going to Urgent Care, and upset enough to just say “see what happens when you hit yourself?  We don’t want to do this, but we have to because if you get hurt it’s very important to us that you are properly seen by a doctor.”

He came home, had his dinner, and didn’t hit himself.  He tightened his wrist brace, and I had to loosen it…I know that’s another comfort thing, but we can’t cut circulation, can we?  So I’ve bought a new brace to replace this one that is looking frayed and forlorn, and this morning I made sure that I kept J busy doing the seasonal cleaning and rearranging of his room.  He is happy with the result, and he was calm and focused on that task until nearly 10 a.m. when we came downstairs.  At that time he wanted fresh band-aids, and I helped him with those.  He was going to hit his head, but he realized I was looking at him (quite calmly…I didn’t glare…I was very impartial, but I wanted him to remember where we were last night) and he thought better of how hard to do it.  He simply tapped the sore spot he has been dedicated to creating for the past couple of weeks, and then placed his hand where I could take care of the band-aids.

We’ll see how the rest of the day goes for both of us.  I admit I am frayed, shaken, worn out, baffled and grasping at straws.  The more I think about this, the more I am outraged at the lack of support so many parents can find out there.  We were discussing this last night, and I told Dada that no wonder so many parents of disabled adults seem so disenchanted.  There comes a point when you realize that it’s not that the creek has run dry, but rather that there is nothing other than the creek bed, and you live in the desert.

But we plod on…our feet feel heavy, but we’re not crumbling.  We are, if anything, even more determined to change things for ourselves and J.  We might end up packing up and moving to a kinder climate sooner rather than later, and we might end up changing our entire lifestyle to handle this better.  We are determined.  Shaken, stirred, frayed, scared, anxious, but determined nonetheless.

I do curse a lot these days.  I apologize for it…or maybe I don’t.  I have to do something, right?

Off I go to deal with everyday life…

A tremendously huge milestone…

Consider, please, that J is 21.  He is signed up for Selective Service, he can buy alcohol (which he doesn’t like,) porn (which I’m sure he’d enjoy)  and cigarettes (the smell of which he finds disgusting.)  He can go into the movie theater and watch any movie he wants…no restrictions.

And now, drumroll, he can tie his shoes.

Is it done prettily?  No.  Is it done quickly?  No.  Is it done without an intense look of concentration?  No.  But it’s done.

Not bad, I think, for a couple of people that the world assumes spend their whole day twiddling their thumbs.  No, dagnabbit, we get stuff done…and that stuff, right now, is shoe-tying.

Don’t ask me how it happened.  I’m pretty sure that it was as close to Eliza Dolittle surprising Professor Higgins by properly pronouncing and enunciating her way through “the rain in Spain stays mainly in the plain.”

First one shoe…then another.  After years of  trying and trying, and failing and failing….

You know how people say “in the end it was anti-climatic?”  It wasn’t.  It really, really wasn’t.  Two days running, it still isn’t.  We actually celebrate it every time he does it.  It’s almost up there with when he finally got potty-trained at the age of eight.  It’s a big, big, BIG deal.

I am sure that people think we do very little when we’re here all day.  I know this because people often complain that I don’t answer their calls, e-mails, text messages, and don’t have “time to hang out” with them.  I am tempted to do an auto-reply on my e-mail and text, change our voicemail greeting, and have a t-shirt made that reads “trust me, we’re doing important stuff.”

Life sometimes reminds us that we’re not just running on idle.  Life sometimes throws us a little gift like this miraculous shoe-tying development.  I would say we’re not worthy, but I firmly believe that we are because we try, people; we really really REALLY try.

In the middle of everything else (the tense negotiations about the PECS board, the echolalia that drives us to distraction) a little ray of “we haven’t been wasting our time” shines through, and J achieves something that truly makes him more independent.  And he is proud of himself.  This is not just about us not having to sit on the floor with his foot on our leg as we tie his shoes…this is about J being able to do a little more for himself.

Many of my friends announce their children’s achievements on Facebook.  I think that’s tremendously cool.  Moving away from home to start college, joining this or that organization, winning this or that competition.  Even those friends who have kids with disabilities share their successes, and -believe me- I rejoice with them.  I don’t feel envy, but I do have moments when I wonder “what would have J done if…”

I snap out of those.  I know he’s doing a lot.  I am aware of the effort he puts into everything he does.  I am tremendously proud of him (even when it’s a “I have to say this X number of times to quell my anxiety) and I tell him all the time.  He knows the sign for PROUD, and when I tell him I’m proud of him he smiles broadly.  J knows.  J is aware.  J accepts the recognition, and he values the time we spend working because he knows he’s going to figure something useful out in the end.

It’s not that we don’t get frustrated.  We do.  Some days can feel long.  Some hours spent working on a seemingly menial skill can feel even longer.  We have moments when we both get upset and have to take a breather from each other.  There are times when we set aside whatever it is we are trying to master (we…yes…not a royal we…both of us are trying to master it…he the learning, and I the teaching) so we can try again later…maybe much later…both of us refreshed and renewed.

We enter September with a new skill learned.  It’s a biggie.  We are thrilled.  We are thankful.  We feel empowered.  On to the next thing!  Bring it on!  We can do this!!!!

Of course, we’ll have to stop dancing little random jigs to get on with whatever comes next, but -for now- let us bask in the glow of the shoe-tying.

 

 

Ah…the weekend…

I have never claimed to have this whole thing figured out, but on Friday I pretty much kicked ass.  That is: I managed to take J to the movies, lunch and shopping without a major incident, and without regretting that I don’t make a habit of carrying a flask full of hooch with me.

On Tuesday J reorganized his PECS board to reflect a trip to the movies on Friday.   Then he switched to “watching a movie at home.”  This happened at least ten times over the course of Wednesday and Thursday, and I had to -very quickly- research WHAT movie, and when. I settled on Kubo and the Two Strings, and even showed him the trailer on You Tube.  As is my habit, I prepared for this possible outing by over-preparing.

I had money, a cab booked with plenty of time, clothes picked out, and a timeline that would make synchronized swimming look like disoriented ducks trying to swim out of a bowl of noodle soup.

I wanted to make sure that this would happen because J insisted (even when he was changing his mind,) and I used the expression “I PROMISE!”  He raised his eyes at that.  Goes to show how often I unequivocally promise that something will happen.  I usually say “we will try,” “weather permitting,” “if the opportunity arises,” “it is quite possible,” “we’ll see if that’s a possibility.”  This time, my friends, I made a solemn vow, and I wasn’t (under any circumstances) going to break my promise.

So after changing his mind, and assuming that I was all bluster and no filibuster, J was pleasantly surprised when I told him (at precisely 11:25 per my schedule) that we were getting ready to leave for the movies.  By 11:35 we were headed out the door to wait for the cab at the complex’s leasing office and, as I had requested, we were notified via text that our cab was running a little behind so it would be a while before we got picked up.

If there’s one thing I’ve learned over time is that you book cabs to arrive with plenty of time for your outing, and that way you won’t be disappointed if they’re running late.  J, who was impressed that I was this committed, patiently sat annoying anyone within earshot with his Proloquo and I WANT TO GO TO THE MOVIES, I WANT POPCORN, I WANT A SODA, I WANT CANDY.  When the cab arrived I think people danced around why taking shots of whisky.

We made it to the mall with plenty of time to go to lunch.  I’m not big on going to lunch at the mall, but I figured since J had done it with his classmates, and he no longer has classmates, it would be fun to see that those outings are still possible.

When we walked into the Chinese buffet, the lady at the counter addressed J by asking “two for lunch?”  He turned to me and handed me the iPad.  I explained that, yes, we would both be having lunch.  We ordered our drinks, and sat there for a moment before I realized that J was looking at me like I’m the dumbest person in the world.   I asked what was wrong, and he rolled his eyes and pointed to the buffet.  Ah…the lady who never goes to lunch at the mall didn’t know that you just get up, grab a plate, and serve your food.  He patiently led me through the buffet, and we sat down to eat.

From there we went to Old Navy.  J loves Old Navy.  He knows how to SAY Old Navy.  He asks to go to Old Navy.  He was so happy when he saw they had the pajama pants he loves that he let out a whoop.  I don’t know if other people get excited when they get Old Navy Bucks, but J was in seventh heaven…he handed them to me like they were a sure-fire winning lottery ticket.

We made it to the theater on time.  J ordered his snacks, handed his rewards card over, and off we went to watch Kubo and the Two Strings.  There were only six people in the theater.  This is good because we were comfortable, but it’s sad because it’s truly the best animated movie we’ve seen this year.  J loved it.  Not only was he happy that I kept my promise, he was thrilled that he liked the movie we went to watch.  He was so happy that he didn’t even mind that he only got a medium soda and popcorn, and that I ate half of his M&Ms.

After the movie we walked to Target, and bought the things we needed for the weekend.  Dada picked us up when he was done with work.  We headed home, and J had a happy, lazy smile on his face.  He was happy to be home and his new pajama pants for the rest of the evening.

On Saturday, however, he was a little less patient with us.  I’m sure the fantastic outcome of Friday went to his head, and he was expecting another solemn vow, but I had to say “we have cheese at home,” and “you are NOT having TWO hot dogs from Five Guys.”  We were not friends for a bit, but we managed to make peace without me losing my foothold on “I’m the mother, darnit!!!”

I know a lot of you are probably thinking “this is no big deal, lady!  We take our kids places all the time, and it’s not a huge production.”  Well, people, I don’t drive.  I am the crappiest, most unsafe, anxious driver ever, and I reserve my driving for “a life must be saved and it’s in my hands!!!!”  J also is used to getting to the movies via Dada or, formerly, TGG.  Going alone with me hadn’t happened in a very long time, and I believe TGG was with us then.  J was also significantly smaller, younger and lighter, and I could handle his squirming, screaming, thrashing, tantrum-throwing body a lot better.

So, Saturday was more of a low point, but Friday was amazing.  And I’m proud of us.  J knows that school has started for everyone, and seeing that life goes on outside that context is awesome for him.  We went to the movies…just J, Slinky and I with an iPad.  And  it was great.

 

Dear Boxing Gloves…

It was four years ago today that we saw you being left behind when J left for school.  We were stunned by this development.  I’m sure you were stunned also.  You had been his constant companions for two years, and he wouldn’t put you down voluntarily for anything other than his shower.

We saw J eat meals, sit on the toilet, get dressed, sleep, walk, do chores all while encumbered with the four of you.  Awkward though this was, you were a welcome presence.  Before you, J had been beating his forehead with his bare fists, and we’d seen boo, scabs, bruises and scrapes appear and disappear in an constant parade.

For some reason, his first comfort item was a balloon.  We had a shoe box full of balloons because, of course, they would pop or deflate, and J would get upset and, hands free of this item, he’d hit himself.  You, his Everlast boxing gloves, were part of his “uniform.”  He also had a sparring helmet to match.  We used to joke that kids at school wouldn’t mess with J because he is tall, big and was professionally equipped for a rumble.

We tried to make light of it because we had to; what do you say when your kid walks around with four boxing gloves and doesn’t let them go for any reason?

The day he got dressed for school and, rather valiantly, pushed you aside when we handed you over, we almost cried.  We didn’t cry because we didn’t want him to think we’re wusses, and we didn’t want him to hesitate.  He had made this decision, and we were going to be encouraging.  The moment J and Dada left to wait for the bus, I sat on his bed (with you,) and called his teacher.  I remember telling her to let us know if we needed to run over there with his comfort items at any time during the school day.

J came home and found you on his bed, waiting for him.  And he was fine.  He never carried you anywhere again, but he always makes sure that you are neatly placed by Raggedy Ann, Minnie Mouse and Daisy Duck when he makes the bed in the morning.  He also tucks you in next to him at night.  He is fond of you, and you still give him comfort.

Four years is a long time.  We know that Slinky has lasted as a comfort item way longer than you, but we also know that Sparring Helmet was soon replaced with Scrum Cap Covered By Rasta Hat.  By the way, you don’t see it during the day, but Scrum Cap Covered By Rasta Hat hangs on a hook near J’s PECS board in the kitchen.  It goes there when he comes downstairs in the morning, and doesn’t get picked up again until he heads up to bed at night.  He sees you more frequently, stopping by when he’s doing his chores, making sure you haven’t fallen off the bed.

I don’t think we’ll ever get rid of you.  J likes having you around.  When he’s sick, he curls up with you; when he’s well, he feels comforted by your presence.  Slinky is his wing…item, but you remind him of how far he’s come, and that it’s ok to sometimes need something to make you feel better.

I wanted to say thank you.  I also wanted to let you know that we remember all you’ve done, and we see your being left at home as a positive milestone, not a negative one.  We don’t forget that you were there when J was being harmful towards himself, and you stopped quite a bit of nasty bumps that might have happened.

These are usually given to the fighter, but we think you deserve them…

Golden_gloves

Sincerely,

J’s parents

It keeps you (sorta) running…

J isn’t an athletic sort.  I think anyone who sees his hefty frame, and watches him walk (gambol?) to the mailbox can tell that he’s more awkward than not.  His toes turn slightly in, and he doesn’t necessarily keep pace with anyone who walks with him.  Neither can anyone keep pace with him.  There’s a bit of a skip, and a bit of a sway.  He looks joyful when he’s walking, but he doesn’t look athletic.

J only actually runs (the proper definition of “run”) when there’s some sort of thing that freaks him out; dragonflies, moths, butterflies, dogs, birds, or any other imagined threat will make him break into a trot, canter or gallop.  There isn’t, let’s face it, a single chance in this world that he will ever excel in track-and-field events.  He cannot keep up a proper pace, and his breathing is laced with laughter and humming.  He sometimes runs out of breath and coughs, all while smiling broadly and laughing.

J running is reminiscent of the screaming boy in Robin Hood: Men In Tights, or Phoebe Buffay jogging in Friends.

As you all know, if you’ve been reading this, J is a fan of using his elliptical machine while watching musicals.  I have to leave the garage because this is a thing he likes to do by himself.  Whether he’s watching Guys and Dolls, The Sound of Music, My Fair LadyOklahoma!, Gigi, South Pacific, or The King and I, I am not allowed to burst in and sing while he’s working out.  I get a firm (but broadly smiling) BYE!  While out on our walks, I am his personal jukebox, and I take (of course) requests, but while he’s exercising…nope…not allowed.

J alternates his elliptical machine workout with his Wii Fit.  This, my friends, has been tricky.  A) The Wii Fit isn’t smart enough to know that it’s dealing with a person who doesn’t understand some of the instructions, B) J has trouble fulfilling some of the requirements of the correct form for the exercises, and C) running was something we had to do with him whether we wanted to or not.

Ah, yes…aging is not easy, friends.  Aging after you were an extremely active youth who had very little respect for all the fine mechanisms within one’s body is a pain in the ass.  Our knees (oh, our knees!) creak, crack, snap, squeak, and make us yelp.  There are days that, as with life in general, easier than others.  On those days, we are as bouncy, flouncy, pouncy, trouncy as Tigger himself.  Other days are laced with groaning and dread at the thought of running.

It was on such a day, not that long ago, that J insisted on running with the Wii Fit, and I had to accept that, unless the Wii Fit was the thing to use, exercising wouldn’t happen.  After slathering myself with Tiger Balm (which promises to become the fragrance that my body exudes as I age further) I told J “we’re going to figure out how to run with this thing.”

When I say “figure out how to run” I really mean it.  J, left to his own devices, will get the Mii to stand there while the clock keeps time, and every other Mii in Wii Fit Island passes him while looking over a shoulder.  So teaching J to “run” (something we all basically take for granted) had to be done.  Stability, something to anchor him, was the key.  The first time (after the Tiger Balm and some Tylenol,) I ran next to him as he held on to…drumroll, please…a stepladder!

Look, it’s not the most gracious running you’ve ever seen.  It’s nowhere near a cheetah, a gazelle, or Usain Bolt.  The pace continues to be choppy and less than consistent, but now J runs with the Wii Fit, and he listens to his music while watching his Mii being waved at by his relatives’ Miis.  The musical selections are eclectic: some days he starts out with Lou Bega’s Mambo No. 5, and works his way through Christina Aguilera’s What a Girl Wants, and sometimes he’s bouncing around to Todd Rundgren, The Spice Girls (don’t tell him I told you that,) Beck, The Cars…  He started running for five minutes, and now he’s up to 30 minutes.  He covers about five miles in that time.  He sweats and drinks lots of water.  He laughs as I do the chores in the kitchen and dining room, or take care of the plants in the driveway.

Like I said: not the most elegant runner in the planet, but he works at being fit.  He knows he’s doing better than we (the old, creaky people) are doing in that department.  He actually stands on the doorway and giggles when he sees us doing our run in the evening before we cook dinner.  He peeks in on us, and shakes his head as if saying “that’s all you’ve got???  HA!”  And off he goes to set the table for dinner, or to get things lined up for dinner prep.  J will never be thin, or graceful.  J will always go into interpretive dance when telling me if he wants to do the elliptical or the Wii Fit.  Saying RUN sounds more like “WUHN,” but I can tell from his arm and leg movements what he means: expansive back and forth with deeply bent knees means elliptical and musical, and a quick back and forth of close-to-the-chest arms, and tiny, quick steps means Wii Fit and iPod.

We are, like just about everyone else on the planet, following the Olympics, but not with the TV…we know who has medaled by reading the news and following the medal count.  We know the greatest athletes in the world are out there achieving great things.   And then there’s Robel Kiros Habte, the Ethiopian swimmer who has received attention for being the least Michael Phelps‘-like swimmer in the competition.  Like Florence Foster Jenkins, he is probably the best example of doing what you do because you love it, because you want to, because you have a right to be there with everyone else.

Not everyone will live up to what they see in Michael Phelps.  THAT is why he IS Michael Phelps.  How long did it take for Michael Phelps to outdo Mark Spitz?  The thing is that the chubby kid, the uncoordinated kid, the awkward kid, the clumsy kid, the asthmatic kid, the kid who is afraid of water have as much right to dream, and maybe their dream won’t be to BE Michael Phelps, but rather to BE there, too.

So, yeah, J runs…sort of.  He doesn’t win medals outside of our home, our garage, our milieu (limited as it is.)  But he runs.  He didn’t before.  He does now.  You do what it takes, and you should be thrilled when it works out.  I know we are.

We can do this your way, or we can do this the right way…

J has come a long, long way.  There’s no arguing that point.  I see it every day, and I can attest to the fact that leaps and bounds are the measure for his progress.

That, however, doesn’t mean he’s not human, and it certainly doesn’t mean he won’t try to get his way if he thinks it’s possible.  But, heaven help me, I am the mother and I get to call some of the shots around here.  Not too many shots because I respect the fact that he can choose like any ol’ Tom, Dick or Harry.  I do, however, take out my thick marker and draw the random line here…or there…or maybe over there…

Many years ago, when Dada and I were choosing to make our lives OUR LIFE, we agreed that it was crucial (as we embarked in co-parenting these extraordinary children of ours) to not forget what it was like to be whatever age they were at any given point.  So, very often, the urge to punt a child over a balcony translated to “I remember being nine, and THAT thrilled about Christmas morning,” or “I remember being sixteen and wanting my license SO BAD!!!!”  With J, of course, the game is a little more complex…

We have in our midst a 21 year-old with a fully-grown body, and the sliding-scale emotional age that is par for the course in his situation.  He can be tremendously cool about some things, and he can be five and on a sugar high about others.  When the 21 year-old body (with the goatee and the deep voice) reacts with the thought process of a five year-old, well, it can be interesting.

J gets overexcited about things.  He hasn’t yet figured out how to react.  Sometimes, when he’s extremely happy, he goes into SIB, and all the while he is telling you how happy he is, and how much he loves you.  The strategy is now to control the SIB until I can get him to sit down and focus on telling us how he feels, and why.

This sounds a lot easier than it is.  We are, after all, also human, and we get frustrated with the brief spats that arise when J is overstimulated with something we’ve yet to identify.  But we’re getting there.  We’re figuring it out.

J has realized that school is about to start.  Anywhere you go there are reminders of the school year that is about to start, and we know he understands that it doesn’t include him.  That there would be a hint of nostalgia, some regret, a tinge of oh-man-why-not-me, and a definite undercurrent of “crap, I’m stuck at home” is totally understandable.  We know that is playing a part in the minor eruptions that take place from time to time.

The calendar is, for the first time since 1999, completely bare of school-related notes.  The only thing highlighted are the home-game Saturdays for WVU, and the days when parades and other activities might snarl traffic beyond all manageable proportions.  Friday is move-in day…we’re doing our grocery shopping/Friday outing today.  A) The store shelves won’t be bare, and B) we won’t have to deal with crowds.

My dad was a ham radio operator.  I remember sitting next to him as he gently turned the dials on all his equipment, seeking the signal he needed, wanted.  Sometimes the slightest movement would make him lose that signal, and he’d patiently go back and lean forward to listen for a voice (garbled though it might be,) or a bit of Morse code.  Even when I couldn’t make out what was being said, he would smile and feel satisfied that that was as good as it would get, and it was what he needed at the time, and he’d jump in and participate in whatever conversation was going on…

I’m taking that lesson and I’m running with it.  I turn the dial gently, and I listen carefully, leaning forward to get a better idea of what is happening.  I do the best with the signal I get, and I jump in and do what needs to be done.

Every single day.

 

I wouldn’t say “like clockwork…”

Once in a while (actually, once a week,) J gets anxious and has a “moment.”  It doesn’t last very long, but it is exhausting.  The PECS board is involved, and there is a rather dramatic insistence on scheduling things until he is satisfied that I (we) have paid attention to what he wants when he wants it.

J times this perfectly.  The moment that I am busy, rushing about, hands full of things, attention focused on something that requires me 100%, THAT is when J will want to go over the board in minute detail.

There is a lot of deep breathing involved.  There is a lot of me reminding myself that this, too, shall pass.  There is a lot of holding a PECS card up to my face, tapping it repeatedly and quickly with one finger, and expecting me to stay calm.  I do my best.  I don’t deny that there are times when I bark and say “yes, yes” because I have either something on the stove, or am slicing something, or am trying to get to the bathroom.

If J doesn’t get the EXACT quality of attention that he requires (because he has his standards and they are on a sliding scale that is unavailable for perusal from the rest of us,) he gets angry.  That’s when the chin-flicking comes in.  Once in a while there is light stomping.  Today we had soft fists hitting the chin on both sides.

My strategy was to say “yes, J…we will go to -insert place here- on -insert whatever day he was pointing at-.”  I said it many times.  J was either unconvinced, or the number of times he had to ask, point, demand attention was higher than on other days.  I said yes, yes, my dear…as you wish.  (Oh, Westley…it didn’t work for you, but eventually Buttercup did figure it out, didn’t she?)  I didn’t really have a problem with this insistence because a) I’m used to it, b) it’s pointless to have a problem with it, and c) I knew it would pass…eventually.

After ten minutes of chin-flicking and chin-hitting I decided to say, rather firmly, “ok, well…I understand that you are pissed off and want things your way, but I don’t think this is productive.”  I went to the balcony, and closed the screen door.  J decided that he should take this opportunity to become even more vocal about what he wanted.  I came back inside and he came up to me, quite close, and repeated the tapping of the PECS card, the chin-flicking, and the chin-hitting.

I don’t tell J he’s being bad.  Even when he’s being a brat, I try to say he’s being rude rather than bad.  Rude is an attitude; bad is character flaw.  So I said “J, you are being rude.  I understand that you want something, but we cannot get on with your breakfast and everything else until you stop this.”  He was shocked that I would take that tack so he got closer, flicked harder and tapped more insistently.

I grabbed the keys, took the security bar with me, and stepped out on the porch.  I grabbed the keys in case J decided to lock the door.  Ditto for the security bar.  I could see him because the door has a window, and I know he could see me.  I locked the door, and stood there looking at the tomato plants on the driveway.

I was more irritated than angry.  I know my son has difficulties communicating how he’s feeling, and I know he can get tremendously anxious, but (as I said to him while he was stomping around the kitchen protesting against life and its hiccups) we are stuck together and all the chin-flicking and PECS-tapping doesn’t help.  “I will help you, but you have to listen when I say whatever it is I’m saying.”  On the way down the hallway towards the door I said “I will come in when you’re ready to listen.”

J’s silhouette filled the window.  He was still standing in the kitchen, his snack portions ready to put in the box, the packages ready to go back to the pantry.  I gazed at the tomatoes and took a deep breath.  I counted to 100.  While I did this, I could hear J walking back and forth between kitchen and garage as he put away the snacks, and then stored the box on top of the fridge.  When I got to 100 I opened the door, replaced the security bar, and hung my keys.  J was standing in the kitchen with his binder, and he was obviously done being upset.

I asked him what he wanted for breakfast, and he showed me the breakfast burritos.  I told him to get the things ready, and stood back in case he needed help.  With very little intervention on my part, he made and ate his breakfast.  He kept looking at me between bites, and I smiled at him in a conciliatory manner.

After that we tidied up the kitchen, made beds, gathered laundry and headed to the basement to do whatever it is we do in the mornings.  Every time I stepped into the TV room, or he came out to the sitting room, he told me he loves me.

At 10:30 we did a few more chores, and then I asked him if he wanted to exercise.  He chose The Sound of Music for his workout movie, and climbed on the elliptical machine.  By the time intermission rolled around, I told him it was lunchtime, and he was happy and ready to eat.  We made lunch, and then he asked for his bath.  After his bath he wanted a shave, and after that he wanted his band-aids and wrist brace.

It is an anxious day.  I know that.  He has been “off,” but he has worked his way through it.  We didn’t start very well, but we figured it out.  Maybe it’s the weather.  Maybe it’s just the excessive togetherness of two adults in the house together all the time.  Maybe he’s just needing the reassurance that he has a say on what he wants to do, and when.

I understand what little I can figure out about all this.  I make sure that I am as fair as I can be, and that -because he was worried about me not being around the day of my surgery- I stay where he can see me if I have to “step outside.”  It is the same dynamic, but it has changed.  I don’t know if that makes sense, but that’s the way it seems.  New and improved?  Same formula and new packaging?  I don’t know how this would be marketed…

All I know is we’re trying to make it work.  It’s not quite running like clockwork, but if you’ve ever looked at a clock’s mechanism (not a digital one, of course) you know it’s quite complex and beautiful.  It takes years to become a master clockmaker.  It takes effort, and attention to detail.  It takes patience and skill.  It takes vision and an understanding of the way pieces work together.

We’re working on it….

 

 

Independence…it’s what’s for breakfast!

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Little by little, we make progress.  Scrambling eggs was not easy at first, but we’ve figured out the proper wrist movement, and now, instead of stirring the eggs, we actually scramble them in the bowl.  No more back and forth, or side to side moving the fork…nope…we now flick our wrist in a circular motion, breaking up yolks and perfectly blending with the whites…bubbles form, my friends…

We no longer blitz the eggs in an overheated pan.  We no longer throw the butter in and don’t let it melt.  We are cooking…wait for it…at medium-low heat, and gently stirring the eggs so they cook slowly, gently.

We’ve come a long way, baby.

There was a time, as you might remember, when breakfast was a package of ramen noodle, drained of the broth, eaten without cooling and in less than 15 seconds.  Inhaled noodles, we called them.

Everything J ate, in fact, was basically inhaled.  No savoring.  No enjoying.  No taking his time.  Nope.  He would just sit in front of his food and it would disappear in seconds.  No joy there.  Just sustenance of the least savory, healthy kind.

Now we look through the Menu Binder and we choose our breakfast.  Pictures guide us through the process of making sweet potato pancakes, breakfast burritos and quesadillas with things like spinach, mushrooms, sliced chicken.  We no longer need a panini press to make a grilled breakfast sandwich…we can now grill it on the crepe pan.  WITHOUT BURNING IT!

We inch forward.  We learn something new, and keep at it until I can just be an observer, or -better yet- an assistant.  There is joy in being shown the ham and being asked to slice it, rather than having to point J in the right direction.  From being taught, he is now showing he has learned what to do, and he just needs help because of the timing of the whole thing.  Timing is the hardest thing to master.  I have, after over thirty years of cooking for others in the small scale of a home kitchen, found myself running around trying to make sure all the food is at the right temperature at the same time.  So  J is definitely making great strides towards feeding himself and helping me feed us.

The prospect of assisting with meals is exciting to J.  The prospect of setting the table because dinner is just around the corner makes him happy.  Emptying the dishwasher, doing laundry, choosing what he wants at the grocery store.  Hesitation is at a minimum level these days, and it is so nice!  I can tell him to go get his popcorn, or his chips, or to find three onions, and J walks away and does it.  I can see him.  I am close enough to assist him if he gets overwhelmed, but he feels confident enough to take over those tasks.  Never mind that he follows me closely at home because one morning he woke up and found the sitter here.  I mean “at home” to him.  I get that, but I also am someone who works side-by-side with him.  That’s kinda cool, isn’t it?

What is best about all this is that now I can say “hey, get your breakfast going” while I’m getting other things done in the vicinity.  By the same token, I can now issue instructions without having to repeat, or oversimplify.  J is now totally fine with “would you please take the trash from the kitchen to the garage, and bring a new bag to put in the bin?”  He gets all that (because he stops to actually listen,) and there’s no need to follow him, use hand gestures, or worry that he will forget any of what he’s been asked to do.  I can send him off to gather trash from the small bins, and he will do it without me having to help him, AND he will replace the small bags we save from the grocery store to line the bins.

J is more independent.  J is more able to participate in the life of our household as a self-starter.  The other day he gathered the laundry without a word of guidance from me.  I can say “it’s time to clean bathrooms,” and he takes over cleaning his own.  Just like that…

So…

Independence.

It’s pretty cool.

I like it.  He likes it.  It’s good for us.  I think it’ll be for lunch and dinner, too.

 

Finally getting my Sally Field moment…

Very early on Wednesday morning, one of J’s substitute teachers arrived to sit with him while Dada and I drove down to the hospital.  I had tried to explain to J that we’d be gone for a good part of the day, but he wasn’t particularly interested in this tidbit.  When I poked my head into his room at 6:25, he was blissfully asleep, and I could only air-kiss him and head out.

On the short drive to the hospital I asked Dada if he thought J would be OK once he realized I wasn’t there.  The thing is, my friends, that J has seldom awakened to both of us being gone at the same time.  Ok, let’s be honest…if J has woken up to ME not being there it’s been rare, or -more accurately- nearly non-existent.  Dada, who was in “concern mode,” said it would be fine.  We arrived at the hospital and checked in at 7 a.m., and for the next five and a half hours, J was a concern, but not the most pressing.  I hate to admit that, but it’s the truth.  I was, quite honestly, too focused on getting general anesthesia for the first time in fifty years.  I can tell you that anesthesia has come a long way since then…not that most of you didn’t already know that!

I could go into details about how apprehensive I was about the whole “they’re going to cut into me” thing, or about how I have been so prudent about showing my breasts my entire life, and how it all flew out the window on Wednesday.  Instead, I will tell you that I was ecstatically impressed with the staff at Ruby Memorial Hospital in Morgantown.  Everyone was amazing.  Everyone was professional, efficient, skillful, and compassionate.  I don’t care if they saw my breasts, I love them all.

Now that my paean to “people who have, under totally professional circumstances, seen me naked” is over, I will tell you about my homecoming.  This is the part where I’m tickled pink.  I came home with the hugest wad of gauze I have ever seen tucked into what can only be referred to as an “institutional-issue bra,” and looking very much off-kilter in the chest department.  It was like half of a pigeon and then normal me.  I wasn’t groggy, or woozy, or even loopy.  I was perfectly  mobile, and perfectly rational.  I did not imagine J’s reaction to seeing me for the first time that day…

HE WAS HAPPY TO SEE ME AND HE SMILED!!!!!!!!!

I’ll give you a moment to imagine that.  J, who is perpetually saying BYE to me, saw me and grinned from ear to ear.  I went up to him and, offering my right side, asked for a hug…he could tell the mound of gauze had some sort of important meaning and side-hugged me with gusto.  It felt REALLY nice!

The rest of the day went as usual.  Of course, I have been following doctor’s instructions and being extremely good about my recovery.  Whenever I went into the TV room to say hey, J would smile.  If I sat next to him, he’d hug me gently.  It was all very nice.  I got the distinct impression that my son had…gasp!!!!…MISSED ME????

I figured the rosy glow of my return would have diminished by yesterday morning.  After all, I was so obviously “home” on Wednesday evening that I couldn’t possibly NOT be “home” on Thursday morning.

We slept in on Thursday morning.  The people who are usually up before six on a weekday didn’t actually sit up in bed until past 8:30.  The night had brought thunder so monumental that it seeped into our dreams and rattled us awake.  Although I was sleeping soundly, I could hear the thunder, and -because I’ve learned to check the weather for Tornado Warnings on a regular basis when things sound menacing outside, I dimmed the iPad and checked our status.  The rest of West Virginia was getting badly throttled, but we were relatively fine.  So at three in the morning I went back to sleep, and didn’t wake up until much after we usually do.

J had slept in, too.  I tiptoed down the hall and his light was off so I ducked back into our room, washed my face, brushed my teeth, and put on my robe so the bandage wasn’t visible.  I went back and found that J’s light was on, and I knocked on the door.  He was making his bed, and when he saw me there he smiled so brightly that it almost made me cry.

I know it’s not going to last.  I know it’s a reaction to what he deemed an unexpected absence on my part, but J missed me.  He was happy to see me on Thursday morning.  He behaved beautifully for the sitter, and she said he was wonderful and calm, but J missed me.  He liked seeing me at home when he woke up.  He hugged me.  He kissed me.  He spent the whole day smiling at me.

Dada found me sniffling in the hallway after our son had gone downstairs to fix his snack box.  J had patted my shoulder and smiled at me as he carried his iPad to the kitchen level. I had remained in the hallway regaining my composure.  Unlike Sally Field, I wasn’t going to let my joy and emotion carry me away.

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Dada said “are you ok?”  I explained what had happened.  He said “that is extraordinary, honey!  See!  You always think he’s not going to miss you, and now you know he does.”

J does miss me.  He does care.  He likes me.  He really likes me.  As the mom of an individual in the Autism Spectrum, I don’t always get to relish this knowledge.  A lot of the time I speculate that he recognizes me for who I am rather than for what I do.  For a brief moment (which has extended to his doing all the chores today while smiling at me) I can bask in the glow of what he feels when I come back from a brief absence.  It’s kinda cool…

So, since I cannot react accordingly for the time being, I will let Roberto Benigni do it for me…

That about covers it…

 

I might have created a monster????

The new board is a no-go.  We gave it the old college try, and it resulted in such tremendous confusion for J that we threw our hands up in the air, called it a good-enough attempt, and returned to what was familiar and comforting to him.

Call us chicken shits.  We’re fine with that.

The truth is that the old board worked just fine, and we were trying to reinvent the wheel.  J doesn’t want to know what he’s doing today…J wants to know what he’s doing………..

So I simply went back to the drawing board on the organization of his PECS, and -seeing the old board set up with MORE options- it was good for him.  One minor, and yet annoying, crisis averted.

In the past week J has learned to lurk around the kitchen as mealtimes approach so that he can jump in and be my sous chef.  This is working just fine.  Of course, he is left-handed and I’m right handed so I have to remember to work across from him so he copies what I’m doing in a way that makes sense to him.  (I tried turning things around and he didn’t like that…we do what we have to do to make it easier for him.)

Like every other kid who is done with school, J would prefer vegging, but it’s just not in his nature.  As much as he wants to be idle, he can’t stand the idea of US being idle, and so he springs into action.  He leaves the comfort and relaxation of his TV lair to make sure that we are doing something worthwhile, and -upon finding us, egads, being idle-ish, he springs into action to make us bolt into action.  This is, my friends, how at 9:07 this morning I find myself with a clean kitchen, a load of laundry in the wash, another in the dryer, and four (count ’em!…FOUR!) clean bathrooms.

Today is not supposed to be Laundry Day, but autisme oblige and here we find ourselves…filling time with a task that is supposed to fill time tomorrow.  I’m not saying this is more difficult than I expected, but there are glitches in our plan.  And surprise, surprise, right?

I made J a cookbook.  It’s a simple book with laminated instructions for making meals he enjoys.  Our maiden voyage was breakfast, and J felt empowered and happy.  He wants to do EVERYTHING in the kitchen…chopping things is the trickiest task because, sadly, I’ve found a pair of chain mail gloves that will guarantee my son doesn’t slice his finger off while slicing mushrooms, but they won’t be here until tomorrow.  Until then we will exercise extreme caution, but it seems that J is so keen on being in the kitchen that he actually doesn’t want to do anything that might get him banished.

J has started to figure out that slicing mushrooms is something he enjoys, especially since the person that slices the mushrooms pretty much controls how many mushrooms are going into each dish.  Sautéing the mushrooms and sprinkling other ingredients into the pan makes him happy…oh, a little pancetta here, a little onion there…is that fresh basil you’re giving me?????  Well…thank YOU!  And so we end up with these fantastic forays into the world of “cooking is fun, please wait until I’m in the room to do it, mother.”  At this point, I cannot boil water without assistance.  Yesterday J spent five minutes looking at two packages of pasta to determine if he wanted spiral-shaped pasta or rigatoni with his turkey bolognese.  I don’t think I have to go into detail about how he has discovered that garlic bread, when made at home, provides the opportunity to do more things in the kitchen.

This morning, my friends, J almost sang with joy when he discovered that we were having breakfast burritos for breakfast.  He scrambled the eggs, sliced the leftover chistorra (if you’ve never had it, excellent Spanish breakfast sausage!!!,) stirred the eggs until it was viable to add the leftover potato-mushroom concoction from Sunday evening’s meal, and then sprinkled cheese on top with the same sort of flourish a magician uses to pull a bunny out of a top hat.  I don’t know if he enjoys eating because he’s learned to enjoy cooking, or if he’s enjoying cooking because he enjoys eating.  Either way, this is now J’s main source of entertainment.

Laundry, bathroom cleaning, arts and crafts, gardening…menial entertainment.  They pass the time.  They fill a space.  Cooking, on the other hand, is fun and exciting.  And those “chain mail” gloves can’t get here soon enough.

So that’s where we are…I am now the mother of Remy from Ratatouille.  If J enjoyed drinking wine while cooking, we’d be in trouble.  It’s bad enough that Dave Brubeck permeates the room as we’re tossing things in a skillet…that emboldens my assistant.  He wants the volume turned UP!  And he announces this with arms up in the air while smiling at the ceiling fan.

Now, if you don’t mind, I have to come up with something we can cook together this weekend.  The weather might allow for outdoor paella cooking, or we might throw down some Argentine empanadas…that will give him a chance to make dough.  Or a quiche for Sunday breakfast.  Or seared scallops…  Mac and cheese just doesn’t cut it anymore.  The board is full of other minor events, but mealtime prep is where we get creative and excited…

Who’d’ve thunk it!?