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….

 

 

The not-so-lost art of negotiation…

Today we had a few errands to run.  Well, technically, we had three errands at two different places, but this still required negotiating with J.  If you have been reading about J for a while, you know we’ve come a long way in this area.  We’ve progressed from adamance to hesitation to outright quid pro quo to two-way-street meet-in-the-middle negotiation.  It is very comforting to not be dealing with someone who will cling to a doorframe with nails and teeth.

Of course, this has not been an easy thing to achieve.  J does know when he wants to be open to something, and when he is simply and irrevocably against it.  There was a time when I felt that winning the argument was necessary, but now I’m more concerned on trying to learn how to get to where we want to be.  This doesn’t necessarily mean that I am willing to cave in, but it also doesn’t mean that I won’t.

Every single day we negotiate something.  Some things are minor (no, you’re not having your pepperoni and cheese snack today; you can have it tomorrow,) and some things are major (no, I am NOT going to walk around without my glasses just because you don’t want me to see what you did in the laundry room!)  We negotiate anyway.  We negotiate whether we’re going to check the mail at 11:00, or if we want to wait until 4.  We negotiate whether we’re running with the Wii, or using the elliptical.  We negotiate whether we are going to take a bath at 3:30, or if we’re doing it before bedtime.  Timers are negotiated.  Snacks are negotiated.  Bedtimes are negotiated.  We have figured out that if J wants something he will be willing to find a way to let us know, and we will find a way to get him to wait for it.

For the most part it works.  J has attempted to throw a tantrum, but the close proximity in which we function these days has taught him that I know we can’t just succumb to hyperbolic behavior.  Last Thursday J was spectacularly angry, threw a significant tantrum, and then apologized and did his Wii run while arm-in-arm with me.  All because I said “I will accept that you’re pissed off, but I will not accept that you’re being an asshole about it.”  The whole incident lasted ten minutes; the apology was heartfelt and extended for an hour.  We were friends for the rest of the weekend.

Yesterday evening, after J made it clear that it was entirely too hot to leave the house all day, I explained that I had a doctor’s appointment today, and that he and Dada would be going to the DMV to get his ID done.   He looked anxious, but he trusted that I was telling him the truth.  We had to repeat ourselves twenty times over before bedtime, and twenty times over on the ride between here and the hospital (2.5 miles away,) but J accepted the scheduled activities.  I went into my appointment and, for the very first time, sent J off to do something long, boring, and public with just Dada.

You know how DMVs are on a Monday morning.  The line was long, Dada said.  The wait was boring, Dada said.  J was only upset when they took his old ID away from him, but the clerk allowed him to keep it after invalidating it.  An hour later (yes, I know…a minor miracle) they were on their way to meet me, and we headed out to J’s destination of choice: Target.

This is what I have learned about my son over the past two months: he is good company, but he likes his space and time to be under his control.  He is kind and charming.  He is funny and helpful.  He likes being around me, but he also likes being by himself.  The biggest lesson, however, has been that I’m perfectly OK with that.

We have good days.  We have days that, in hindsight, could have been better.  We have days that are definite scrap-pile material.  We try.  Today we succeeded.  In small increments, but we succeeded.  There’s not much else we can aspire to on a day-to-day basis.

We’re fine with that.

 

 

 

This just in…

https://www.theguardian.com/us-news/2016/jul/21/florida-police-shoot-black-man-lying-down-with-arms-in-air

Let us, for the time being, put aside the very real problem we have (in America) with people being shot by the police, and the police being shot by people.  Either way, it is a problem.  Police officers have a job to do, and it is a dangerous job; in the exercise of their obligations, they carry weapons, and -regrettably- there have been several instances of preventable deaths of innocent citizens at the hand of police officers discharging those weapons.  People have reacted to this viscerally.  I don’t just mean by protesting -which we are entitled to do because the Constitution guarantees us the freedom to do so- but by killing and wounding police officers who have been exercising their duties during public protests, or simply while doing their jobs elsewhere.

I am not going to address that aspect of the gun violence that permeates our lives because I feel that this is not the place to do it, but I will address an issue that -as the parent of an adult individual who is firmly placed in the more severe end of the Autism Spectrum- gives me daily pause.  I want to address the issue of training.

Now, if you read this article you will see that the authorities were responding to a 9-1-1 call that stated there was a man in the street threatening to kill himself with a gun.  The young man in question is a 23 year-old in the Autism Spectrum who had wandered off from his group home.  He had a toy truck with him.  A white toy truck.  The young man, obviously, looks like a 23 year-old; he is burly, tall, dressed in the usual jeans and t-shirt outfit that many men his age select in the morning.  He has facial hair, and he looks like a dude…just a regular dude.  He is sitting in the middle of the street, and appears to be paying attention (but not particularly understanding) what is happening around him.  His stance is not aggressive or apprehensive; he doesn’t seem anxious.  He is not crying, yelling, expressing distress in any way.  He is, basically, sitting there with his toy truck in his hand, and we assume that his behavior therapist has caught his attention and was trying to negotiate with him up until the moment the police showed up.

I have been there.  I am sure many of you have been there, too.  Our child (whether young or adult) is determined to do one thing, not really resisting, and we are trying to gently but firmly persuade them that it’s time to do something else.  The person we are trying to communicate with is calm, but won’t budge.  Sometimes they react loudly, and wave their arms to keep us at a distance.  We are trying (sometimes when internally on the brink of tears) to keep calm and do what needs to be done.  Sometimes we are doing this while people stare and judge, and comment amongst them.  If the circumstances allow it, and the child (or adult) is not at risk, we take our time so as not to make the situation worse.  We are thinking of the child (adult,) and we are trying to comply with the demands of the place and population that surround us.  Have I picked J up (when he was light enough for me to do so,) and dragged him away from a dangerous situation?   You bet your sweet ass I have.

I also have patiently sat and waited until I could persuade J to move when it was clear that forcing him would only cause him, me and the rest of the planet severe distress.  The internal dialogue that takes place at those moments can be emotionally draining.

When I look at my son I see a 21 year-old man who weighs over 230 pounds, is over 5’9″ tall, has a mustache and a goatee, has powerful legs and arms.  I think he is handsome, and imposing.  I think he has a lovely smile.  I can tell when he’s about to do something mischievous.  I know he has ASD, and I see it in the way he moves and walks, scans the view while flapping his hands or waving his arms.  He dresses like an average guy; shorts, t-shirts, a hat…

I know the world sees a big dude who can crush them, and he has a weird attitude.  I know this because the world doesn’t stop to think maybe there is something extraordinary about my son.  People have told me they thought he was my husband, boyfriend, brother, or gay friend.  (Yes, someone thought the way he walks indicates that J could be my gay BFF…which I found interesting.  Not insulting, just interesting!)  There are several reactions that come with meeting J: awkward silence, hyperbolic enthusiasm, brief acknowledgement followed by a change of subject, and genuine acknowledgement followed by discreet questions about him.  The last category is not as frequent as it should be, but one hopes that this will change over time.

In spite of our best intentions (and, trust me, we’re just brimming with those,) J can be disruptive and/or difficult to manage.  Sometimes it’s not the right day to walk on a wet surface (the wet surface being the street or sidewalk;) at times it’s the direction of the wind.  There are days when dogs are a bigger problem than others, and -of course- there are flying insects, birds, and that pesky problem known as airborne seed dispersal.  Yeah.  That can make a good day not so good.  I’ve had to escort J home from the pool because a dragonfly touched the surface of the water…and he started screaming.  That J’s data bank includes the dragonflies in Mickey and the Beanstalk…well….

Unknown-2

The point is that I KNOW what I’m dealing with when I’m dealing with J.  I know what strategies to use when he needs refocusing, calming, disciplining.  I know when a situation is under control, and when it isn’t.  I know when to ask for help, but I don’t always know who to ask for help because people are either distrusting, fearing, commenting amongst themselves.  I worry that someone is going to look from a distance, make assumptions, and I will not have the ability (or opportunity) to explain to authorities that become involved what it is that is truly happening.

I have wanted, many times, to call the local police department and ask how they train their officers to interact with individuals with ASD.  I wouldn’t even begin to know how to start. It’s not that I don’t think the police would listen, but I don’t know if they would consider this being approached by an overcautious, busybody private citizen.  I don’t know if there would be eye-rolling taking place.  Some people, regrettably, believe that this would fall under “special treatment,” and think we’re angling for something because we think our kids are “better” than the average member of the community.

All parents worry about their kids.  All parents have fears and concerns.  All parents have something that they mull over from time to time, and then discuss with their kids.  This is true of parents that belong to minorities, parents who live in high-crime areas, parents who are not home when their kids get out of school, parents whose children walk home from school.  It is not less true of parents of adults with ASD.

During the day, school age individuals with ASD are in a more-or-less controlled environment.  When we take our children out shopping, or dining, or walking, or to the doctor, or to the bank the environment is less controlled; we are the ones who are the first intervenors if an unexpected situation arises.  When the school organizes an outing, the people who work with our children assume the role of first intervenors.  I don’t know of a single parent who wishes ill for anyone who works with their child.  If the aides, teachers, therapists, drivers cannot count on being listened to when they explain a situation, what would that mean for the children themselves?

I understand that our social mores are stilted and broken.  I understand that law enforcement officers have a right to be concerned about their safety in the current emotionally-charged social climate.  I understand that private citizens have a right to be scared.  Fear is the overwhelming factor, and it is -more often than not- propelled and supported by ignorance.  Whatever reasons have led us to where we are, my friends, the place where we’re at is bad.

I don’t know how this should be addressed, or if it can be fixed.  I just know that I am feeling a little more trepidation when I step out there.  People are scared enough to confuse a toy truck with a gun so imagine what they would “see” if J is wearing his wrist brace because “it’s a bad day?”

Yeah…

 

Truth is the daughter of time…

I have stopped paying attention to the current presidential election cycle in the United States.  You can say “aw, you’re what’s wrong with this country,” but the truth is that I think there’s so much wrong with this whole process that it’s best if I just step aside and let history take its course.

I grew up in a very political household.  My great-aunts were flag-waving, foot-stomping, phone call-making members of the pro-Statehood party in Puerto Rico.  That environment was fervent, involved, loyal to a fault, and yet…it never lacked civility.  Sure, they would think you were an idiot if you didn’t agree with their views, but they didn’t think that tit-for-tat should be taken beyond a few opening salvos that stopped the moment it got too heated.

This is not to say that blood pressure didn’t rise, or that they didn’t have choice words when it came to yelling at the TV or the newspaper.  They would get angry.  Seriously angry.  They would be sprung to action by what they thought required their immediate rattling of cages filled with dormant voters who were not invested enough in the process.  They never, however, resorted to vileness, and they never relinquished their innate respect for others.

I was raised by three elderly, conservative, religious, traditional women in what many consider to be a rather backwards Hispanic society.  The funny thing about that is that it was those same women who encouraged me to read, question, doubt, research, ask, discuss, challenge.  Yes, even them.  While their political views were very specific, they would try to persuade them about their soundness rather than force me to agree with them.  This from women born within the first two decades of 20th century.

What would they have made of the circular arguments, mendacity, subterfuge, vitriol, disenchantment we face these days?  I have often asked myself this as I read the news (from every media outlet possible, people, because I REALLY read,) and see what passes for dialogue these days.  Discourse is lost.  And this goes for both sides.  Once you say something that people disagree with, all is lost and it’s over.  Insults are, sad to say, frequently are the response you will get.

We seem to have lost the ability to disagree civilly.  We seem to have lost the ability to listen.  We seem to have lost the ability to give our opinion without trying to denigrate each other.

It is bad enough that I read the news online.  If you read any comments under any news item, you will see the world descending into the worst sort of anger: anonymous, unfiltered anger.  We relinquished cable TV so we wouldn’t be compelled to listen to the news (24/7…relentlessly…minutely detailed…,) and yet we cannot turn away from world and national events.  Being uninformed and remaining quiet is almost as bad as being misinformed and yapping away uncontrollably.  We remain committed to being informed, but we can no longer be invested in the way politics have become, more than ever before, entertainment.

I understand feeling strongly about one’s beliefs.  I understand passionately defending one’s opinion.  I understand feeling distaste for one or another candidate’s views and actions, but I don’t understand why anger and hatred seem to be the primary forces at work here.  People can no longer say “well, I don’t trust him/her because it seems to me, from what I’ve read/witnessed/researched/heard that his/her views on this/that/the other subject are not the soundest.”  Any opinion you give will get you a mighty tongue-lashing from just about anyone.

I really don’t know what direction we’re choosing for the next four years.  I really don’t know how much of the decision will be made based on hate for one candidate rather than love for another.  I don’t know if we’re going with the “lesser of two evils” approach, or the him/her rather than her/him approach.  All I know is that, for the first time in all my fifty-plus years, I see our society behaving with a lot less civility and consideration for others.

Look, I really am not smarter than anyone else.  I do read a lot.  I do try to look at every situation from different angles.  With J as a member of my family, I have to accept that there are many shades of gray in every direction…this is not a line…it’s more of an orb…  I am concerned at how strict some people’s interpretation of things can be; I am concerned that most people in America have NEVER read any of the documents on which our nation was founded.  People don’t understand that history is a process, and that many things have changed over time as a result of events that created concerns, fears, shifts in perspective, etc.  I’m not just saying that because I’m an elitist.  I’m saying it because I have a degree in History, and am an avid reader.  I didn’t learn about Alexander Hamilton NOW.  Yeah, nerd that I am, I’ve read The Federalist Papers.  (Although you have to admit Hamilton is a pretty freakin’ kick-ass way of getting young people to realize that our Founding Fathers were, at one point, kids just like us, and that our history is not as dead a thing as people like to think…  Thank you, Lin-Manuel Miranda…)

What gives me pause about this election cycle is that we are accepting cardboard cutouts in place of actual people.  We are repeating without researching.  We are believing without confirming.  We are agreeing without knowing what it is we’re agreeing to, and that is pretty freakin’ scary.

Truth is the daughter of time, not of authority.  Francis Bacon said that.  He had a point.  At the end of this whole election period, whatever happens, the government we get will not be like the picture that has been painted for us in the heat of campaigning.  The real world doesn’t work that way.  Life is a lot more complex, and -newsflash!- we will be going through it together whether we agree or disagree.  I may not agree with others, but I will do my best to not be part of the screaming and foot-stomping.

My great-aunts would agree: it’s not worth having a stroke, and it’s not going to help us in the end.  Wednesday, November 9th, we all have to get up and keep going, and the dynamics that come into play when you wake up next to a stranger after an ill-advised sexual encounter shouldn’t be what we aim for.  We’re all in it together.  Whether we like it, or not.

 

 

 

Independence…it’s what’s for breakfast!

image001

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.

 

In the wise words of Miranda Hart: “Life, eh?”

Ours has long been a daily life of lesser and greater degrees of upheaval.  Transitions are always tricky.  We handle them with as much courage as we can, but I can’t deny that it’s mostly with one eye closed while bracing ourselves for some sort of backlash.

Autism presents certain challenges that can be quite a pain in the ass.  We’ve already established that point quite firmly so I’m not saying anything that will rattle your cages, my friends.  We all know that there are things that, in the regular, run-of-the-mill household, would come across as incredibly zany and ludicrous, but that make absolute sense in our homes.

Take, for example, Birthday Candle Survivor.  There was a time, in the now more distant past, when we would sing Happy Birthday in darkened rooms with all the candles in the cake lit, and -once the candles were blown- we’d remove one, light them again, sing Happy Birthday again, and so on and so forth until no candles were left.  When we’ve told this story to those not anointed with First Hand Knowledge and Experience of Autism the reaction has been pretty much the same: why didn’t you just get those candles shaped like numbers.  Sigh…  You’d think the thought didn’t occur to us.  You’d think we didn’t TRY this.  Well, the thought did occur and the attempt was made, but THAT is not the way J’s mind works, thank you.

That we can now get candles shaped like numbers is, trust me, a huge relief.  With people turning 20s and 50s left and right we’d be on the brink of passing out if we still had to do the Birthday Candle Survivor thing.

Last Friday I had a visit with my surgeon.  This was tricky.  J has been anxious about my absence, as I explained previously, and he is ALWAYS anxious about any interactions with the medical profession.  I sat him down and explained that we were going to the hospital for me, and -for the first time in possibly seventeen years- I showed him my breast so he could see the incision that the doctor was evaluating.  In spite of this, of course, J had to do something that doesn’t come very naturally: trust that I was being 100% honest with him about not being poked and prodded at the doctor.  He was hesitant, but he conquered his fear, and -when my name was finally called- he stood up to follow me.  The relief on his face when the nurse said “we only want to see your mother” was quite impressive.  He didn’t exactly shove me in the door, but he did bounce back to sit next to Dada.

I wasn’t expecting it to go as well as it did.  He tried to redirect us towards the grocery store (his escape from all medical situations,) and he did go to the restroom twice while we waited, but it was going pretty well for a while…until…

Have I mentioned that J hasn’t seen TGG more than once a month since TGG moved out?  Yeah.  TGG has not been visiting.  He’s been here four times in as many months.  J doesn’t ask about him anymore.  It was sheer dumb luck that, as we sat in the waiting room, TGG arrived with his partner, bringing  a patient to the clinic.  We had not told him that we were going to be there.  In fact, we had barely heard from him since June 8th, and he hadn’t really called for Father’s Day or after my surgery.  Now, suddenly, there he was; he went up to the counter, spoke to the nurse, and didn’t see us until he was walking out.  He waved.  We waved.  J raised his hand, and then dropped it.  That was the end of it.

When I was done (good news, I’m dying at a normal rate, and my incision is healing nicely,) J asked to go home.  When we got home, he took his evening plans off the PECS board.  He put on his pajamas, and he retired to his TV room.  No word about his brother.  Nothing.

Transitions are hard.  J has accepted that his brother is no longer a part of our household, but he had also accepted that his brother’s son was a fixture in our lives.  The shared affinity for The Three Little Pigs and Piglet’s Big Movie, and the shared meals on Tuesday evenings were something he had come to enjoy.  J loves his nephew, but he has had to learn to not put him up on the board.

Don’t worry: the kid is perfectly fine and happy and healthy with his mother.  We simply do not see him anymore.  It was a decision on his mom’s part, and we have to accept it.  She doesn’t want to overcome TGG’s immature behavior, even when he has tried, and we got ensnared in a strategy that has backfired.  We thought we were working together towards giving the kid as close to a family as was possible under the circumstances, but she never really meant to move past the part where TGG acted like an immature idiot.

When I was thirty-three my husband of ten-and-a-half years walked out of our marriage, and I was left with two small children (one of them disabled,) and I was pretty pissed off.  I felt like I’d wasted a lifetime, like I had missed out on all sorts of opportunities, and like I had been betrayed, but -and maybe it’s because I was older than she is now- I chose to encourage a relationship between my ex-husband and his sons.  Even after Dada and I got married, we made a point to encourage the children’s father to be there for them.  His choices, of course, are his choices, and I cannot do more than I did to encourage him to be close to the boys.

The fact that this whole situation with my grandson’s mother blew up through a post on Facebook (why do people think it’s ok to air this crap out on social media?) doesn’t help matters.  I told her I was disappointed.  She blocked me.  Oh, well…

You will be disappointed and angry with me, but I have to think of the two most important people in this scenario: the two year-old who cannot currently understand what is happening, and the twenty-one year-old who will never understand why this is happening.  A kid shouldn’t be exposed to people who generate anxiety and anger in his mother.  It sucks hugely, but I understand that she thinks -at this time- that she is right and she has found happiness with a new version of what she wants her son’s family to look like.

We are upset.  We are crushed. We are sad.  We are taking J’s best interests at heart.  This has already happened once, and we cannot sit here and open J to it happening again.  Every person that we introduce into our home is a chance we take.  We transition people in and hope that J is comfortable with them; change is hard for him.  Change is turmoil for him.  Change changes him, and not always in a good way.  Every bit of progress comes with a risk at backsliding, and if it’s stuff like bandaids, or tomatoes being evil and not allowed on his plate that’s one thing…

People are another.  Seeing J react to TGG in such a way on Friday told me something very important: J doesn’t want to open himself up to more disappointment from his brother.  We have to take into consideration that J has come a long way, but that regression is not an absurd scenario.

We are thinking of two kids here.  One might someday forgive us for giving his mother the space she clearly wants, and the right to choose what she thinks is best for him.  The other…well…

Life, eh?