Fighting the rising tide…and failing

We knew the weight would pile back on once the Risperdal returned to the mix, but it is nonetheless frustrating to see it happen.  We feel like semi-failures.  I say semi because we do all we can, and we know it…

Of course, the other part of the semi is that we wish we could do more.  J exercises every day, eats prudently-ish (I cannot say he is a role model for not eating anything he shouldn’t, but there is not a trace of salt-laden Ramen noodle, glow-in-the-dark-powdered-cheese macaroni, and so on…  He gets veggies every day, he has a limited amount of cheese, and still here come the pounds, forming a suit of armor around him.

We can tell he is hungry.  We can tell part of it is the Risperdal.  We know some of it is the appetite of a 22 year-old male body.  In order to control his weight in the way we wish we could drastic measures would be required: a ridiculously low amount of calories, a tremendously hectic pace of exercise.  It is, sadly, unrealistic.  We are hoping that the warmer days ahead will allow us to take him for walks on top of the exercise he does in our garage.

This, of course, will only go so far to help us keep his weight under control.  We are still on the “J’s wearing an XL instead of a L” portion of our frustration…we want to keep our frustration at that level.  Last evening, as we sat in the Urgent Care waiting for J to be seen (more on that later,) we were pondering whether he needs a whole milligram of the Risperdal, or if we’re just comfortable with that dose.

Did we go from .5 to a full mg because we’re chicken?  Or did he really need it then, but no longer needs it now?  Since we’re seeing the psych on Friday, I will pose this question. Before then we will do much inner monologuing, much discourse…  There is a certain degree of desperation that sets in when your child (regardless of whether he’s built like a  linebacker, or not) is hurting himself.  You want it to stop.  You might make choices at that moment than you wouldn’t in other circumstances.

Why are we thinking this now?  Is it just the weight?  No, not really.

Yesterday J wasn’t feeling well.  He wasn’t feeling well, and he was going out of his way to prove he was fine.  It was his left ear, see…and he is VERY TOUCHY about his ears.  Many years ago he had to go to the ENT to have a piece of earplug removed from each ear.  That didn’t go well.  At the school (never mind who the teacher was, or why he made such a stupid decision…regardless of whether he won Teacher of the Year for the state,) they had broken an earplug in half, and pushed it into J’s ear.  They were wedged in there pretty solidly, and the removal process was not painless, and it certainly did not lack in drama or trauma.

So our son was being stoic, and I knew something was wrong.  We had a wee bit of an argument.  I discovered how strong he really is, and NO, he didn’t hurt me, hit me, push me…he simply stretched his arm out to block my way (I was trying to Proloquo my way into a doctor’s visit) and I COULD NOT MOVE HIM…  There was no violence, no aggression, no anger…just sheer determination a la Gandalf that none shall pass…and none did.

Of course, J realized that he had done something wrong, and he then hugged me (thus proving his strength once more,) and said he was SORRY.

Anyway, long story short: I saw blood when I gently rinsed his ear with hydrogen peroxide.  A quick glance with the otoscope told me that, yes, there was something wrong in there…  He has an ear infection and, once he realized that it wasn’t going to go away just because he wanted it to, J accepted a visit to the doctor.  We did have a bit of an argument.  It was more along the lines of “I want to help” SCREECH “listen to me” SCREECH LOUDER “will you listen to me??” SCREECH AND HOWL “come on, dude…sit here, and look at me” HOWL SCREECH BYEEEEEE until we ended up huffing and puffing in opposite directions to calm down.  There wasn’t, however, any SIB…and the anxiety that TGG (code name Kylo Ren…seems apropos, no?) causes him is being managed positively.

When we both came down from the argh moment we were having, and it was not easy because one party was dealing with worry and urgency while the other was sorting through anxiety and stubbornness, I explained that I wanted to help, and asked if he trusted me.  We called Dada and off we went.  A promise of a trip to the grocery store didn’t hurt, let me tell you…

We are home today, and he is happier than he was yesterday.  I know his ear still bothers him (I don’t know WHY this child has so much wax in his ears, or why this particular ear got infected,) but he knows the antibiotic will help.  That is enough for him.  He insisted on doing his elliptical (to the tune of The Sound of Music, a switch from Fiddler on the Roof…maybe because it’s Passover?  He wants to give Tevye a break?,) and he has been in a nice mood all day.  We worked on vocabulary, and we did some chores.  I’m sure we’ll work on a pending project after lunch…

There you have it: the kid is gaining weight because of the med, the parents feel guilty, I’ve learned not to try to move the immovable wall that is my son…

We’ll see about the med reduction.  Yesterday’s medical semi-crisis was a lot more manageable than I would have expected before we went back to the med.  I am sure that, stubbornness and anxiety notwithstanding, J can manage himself better, but it’s a subject for the doctor to ponder with us…


The problem with ointment? That one single, solitary fly…

It has become part of the morning routine: a brief, inexplicable tantrum.

By now I should be immune to the stuff, but it is more unnerving because it had stopped completely.  So the past few mornings, when J turns into an asshole for no good reason, I am left sputtering and breathing so deeply I get dizzy.

This too shall pass, I’m sure.  And come around again, of course.  Only to pass one more time, and so on and so forth ad nauseam.

Is it like this for everyone else out there?  Or is this just in the realm of those who don’t have services available to them?  The tension headaches are a lulu.

So we now have expanded our conversations with the Proloquo2Go, and that helps.  I ask J to “talk” to me, and he realizes that he’s done something he shouldn’t have.  We then go into GOOD MORNING, I LOVE YOU, I NEED A HUG, KISS, LOVE, I LOVE YOU mode.  I tell him HIT WRONG TALK GOOD and we go back to the same GOOD MORNING, I LOVE YOU, I NEED A HUG, KISS, LOVE, I LOVE YOU loop until he finally gets that he should say SORRY.

We are learning something new about how hard this is every single day.  We adjust accordingly.  We fine-tune.  We repeat, and repeat, and repeat.  We go over things many times, and we try to clarify the message so that it becomes more accessible to J over time.

It would help if opportunities for activities were available.  We have made a habit of going to the movies just the two of us, and he likes that.  Tomorrow we might hit Miss Peregrine’s Home for Peculiar Children, but I’m not sure J will sit happily through that.  The book is awesome, and I have faith in Tim Burton’s ability to adapt the material, but I don’t know if J will like it.  Perhaps a bigger bucket of popcorn and his iPad with the headphones will do the trick, but it’s a 2-plus hour movie and that’s a lot of popcorn…

Yesterday J got fixated on the notion of a birthday.  We made cupcakes.  Most of them went to work with Dada this morning.  J was satisfied with the ones he got to keep.  He has only had one so that might be a treat later, or he might just be over the whole thing.

We’ll see.  We’ve passed the tantrum point for today.  I am exhausted and frustrated, but he seems to have settled down nicely.  The trick is to see how long he cycles through this particular routine, and to try to make it less overwhelming for everyone here.

We are, as usual, working on it.


We go to see the “Talking Doctor”

J makes a very clear distinction between doctors that worry him and doctors that don’t.  His psychiatrist doesn’t worry him…much.  That’s who we refer to as the “Talking Doctor.”  There will be no poking, prodding, auscultation, drawing of blood, use of any type of needles.  The only anxiety J feels when we go there is when he encounters other patients in the general outpatient waiting room.

As with every other mental-health facility, the one we visit is full of people with a variety of situations that, when gathered in one room, can be a bit overwhelming.  Some people don’t like crowded rooms, low ceilings, things that are not orderly…many anxieties in one room can bounce off each other, and the vibe can be overwhelming.  J puts off these vibes, too, so when they come back to him from someone else, it seems to emphasize them.  Yesterday he locked eyes with a young lady who stared at him in a way that unnerved him, and I’m sure he unnerved her too, but their responses were different: she started laughing nervously while fingering a rubber band she was wearing on her wrist, and J just burrowed into me and started squeaking anxiously.

We have come a long way because I simply had to say “I have you, dear.  I will make sure you’re fine,” and he allowed the nurse to lead us to a smaller waiting room closer to our doctor’s office.  This smaller waiting room is divided into an area for older patients and an area for children.  J likes the rug in the children’s area so he sat in one of the bucket chairs while I sat next to him with a low table between us.  While we waited I read stories to him; I am in the habit of carrying several of his books with me when we go somewhere that involves a wait.

People started coming in to wait for their doctors, and there we sat reading and giggling.  I realized that in this scenario we were the odd birds: two adults happily sitting where the more colorful rug dominated the room with The Fat Cat Sat on the Mat, Froggy Gets Dressed and Peek-a-Boo! for entertainment.  The other patients, many of them children under the age of 12, sat with cell phones in their hands; their parents were also on cell phones.  J had his iPad, of course, but he was turned towards me, and we were both looking at the book and animatedly interacting over the words.  When we ran out of books, we both looked at his Hugless Douglas and Charlie Brown apps on the iPad. Several times we looked up to see people giving us strange glances, as if we were doing something terribly unusual.

This was our next-to-last visit to the psychiatrist.  He is pleased with J’s progress and development, and since he has been med-free since last December, we agree that we have moved past the more serious issues that used to hinder our young man.  A calmer, more focused J went into that office yesterday, and sat calmly listening to what we had to talk about.  He didn’t interrupt or ask to leave as he usually did in the past.

The doctor and I talked about how TGG’s absence has affected J.  We also talked about how the sudden integration and equally sudden disappearance of his nephew from our family life has affected J.  The doctor agrees that these things are very difficult for J, and that it may take him a very long time to overcome the resentment and antipathy he seems to feel for his brother now.

I also explained to the doctor that TGG came to visit for Dada’s birthday and announced that he is about to become a father again.  He also has decided to get married.  He had known about the pregnancy for a while but had opted not to tell us.  We don’t know if the marriage proposal was the result of finding out about the pregnancy, or if that came first and the other second.

Were we upset?  I don’t know.  We were not surprised.  TGG has moved so fast on all these life-altering decisions over the past three years that we cannot say any of this comes as a shock.  We have never met his girlfriend, or her two children.  We have never met her family.  We are still recovering from the previous girlfriend pulling a rug from under us; we opened our hearts and our homes wholeheartedly, and then discovered that there were many conditions to our involvement in our grandchild’s life.  Things got emotionally messy, and  it was proving overwhelming for J.  We had to tell ourselves that, while we are probably being horribly selfish, we have to think of J’s well-being first and foremost.  He has no one else to look out for him.

We asked TGG to please understand that an instant family is not an easy thing for J to adjust to, that it’s been a rough year, and to give us time to see how we can navigate this situation so that we don’t have any regression that will affect J’s transition into a more independent life.  We don’t think TGG gets it, though.  That very night he was asking when we could get together for lunch or ice cream to meet everyone.  Dada and I have spent many hours talking about how this is going to affect everyone, and we don’t see J taking like a duck to water to two toddlers, a baby due in February, and his brother’s soon-to-be wife as frequent fixtures in our home.  The year-old baby we introduced last year who disappeared shortly after turning two was heart wrenching for him; I had to make the PECS that indicated his visit disappear, and J spent a good long time not wanting to watch The Three Little Pigs because that is what he and his nephew used to watch together.  The high-chair we have stored in the garage is now covered with a blanket because J would stand there and stare at it when he went in to get his snack box ready in the mornings.

The doctor agree with me: J’s equilibrium and mental health are a priority.  We need to make sure that we take him into consideration as we move forward with all these changes, and that might mean that TGG has to cool his heels for a while before introducing his whole family.  Of course, TGG has never been one to cool his heels, and he seems to have lost touch with what we’re up against here.  We know what it’s like to have small children; we know what it’s like to go from me to us to ALL OF US in short order.  We understand, but…we are middle-aged people looking at the shorter side of life while caring for a developmentally-disabled adult who has mental-health issues.  We have to tread with caution and exercise wisdom.

So many things have happened this year: my father passed away, TGG moved out, we gained and lost a grandchild in a very short time, J finished school…and now we have more skipped beats, lost stitches, knots, and hiccups in our story.  It is inevitable, but it also has to be handled with a certain finesse.  The doctor wants to make sure that J doesn’t feel like he’s being imposed on and reverts to the unmanageable anxiety that caused his bouts of aggression, SIB, and depression.  We don’t want to go back to meds.  We want J to move forward, and that takes work.

I was recently told that I am a narcissist.  As a child I would run to a dictionary when a word I didn’t know what used around me; the definition I know of narcissist doesn’t really apply to me, but I suppose it could be used in a wider sense.  Because it’s what I do, I’ve gone back and read what this means, and I still don’t think it applies to me, but I am not as intelligent or successful as the person who called me this.  If anything, I think I simply am an introvert, and I focus on my family because, well, no one else outside of this environment will do it for me.  Our well-being as a unit, and the well-being of each of us as individuals is important to me.  I make no bones about not being a people person, and I know that people, in general, do not like me.  It is not a loss to either entity.

In the past weeks I have realized that, yes, we live in this bubble that is hard for others to understand.  I understand everyone has their own bubble, but ours seems to carry with it certain pitfalls that are outside the realm of understanding for outsiders.  I can easily empathize with people’s situations because they are more easily and readily accessible to human experience; our situation, unless you have experienced it more personally, seems to elude the grasp of those who don’t deal with ASD on a daily, non-professional basis.

The doctor gave me a measure of peace of mind.  He is concerned about what all this upheaval can do to J, and he wants us to be as sensitive to his needs and reactions as we possibly can.  Dada and I have talked about it, and we will set up an opportunity to meet with TGG and his family to explain in person WHY we need to take things very slowly.  Will they understand?  Ah, that’s another matter entirely…we’ll see.  We can only hope…

So…there you are.  Feel free to give your opinion.  I listen to all, and I do take them into consideration.



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….



Dear Bobby and Grace…

A lot has happened in the past month and a half, and I’ve been -I admit- cocooning and trying to navigate the changes.  My father died on a Thursday in mid-February, and the world has been a whirlwind of unexpressed grief since then.  TGG moved out to start his life as an independent household elsewhere, and that hasn’t made matters less complicated.  We’ve managed, mind you.  We don’t think TGG’s absence is a bad thing for anyone, but helping J adjust has not been the easiest task to handle.  Absence, it seems, has been the operative word lately.  My father’s absence from this world (although expected,) and TGG’s absence from our household (although anticipated) have brought on change that requires emotional fine-tuning.

I’ll say that J has gone through several stages of grief.  He skipped Denial because there was no denying TGG had packed up and left without having a conversation with his brother; the Anger went fairly well.  Target (the last place where J had seen TGG working) became an Angry Place, and we suddenly (and, thankfully, briefly) relapsed into impatient tantrums when at the store.  Never mind that it was J who wanted to go there; grief doesn’t really make sense at times, and our reactions to it don’t have to make sense either.  The Bargaining came in the shape of a very strict flight plan when visiting Target (even at J’s request.)  Depression, like Denial, was skipped and we went straight into Acceptance.  After a month of not seeing TGG, J felt awkward and uncomfortable when we got home from an errand to find our oldest packing things up into his car.  The hug was similar to Michael Corleone kissing Fredo Corleone…the lines had been drawn, and TGG now knows that J felt betrayed, not so much by the “moving out” as by the not having a conversation about how things were going to change and why.

Let’s say that TGG doesn’t owe J explanations.  Explanations, however, would have been nice.  TGG made the classic mistake of thinking that J wouldn’t understand, and J -obviously- felt slighted and will take his time in finding a happy medium between the way things were, and the way things are now.  He is, however, finding a new “normal” here, and we live in a household of three quite contentedly.

Change looms over us.  It hasn’t been easy, but it’s getting done.  We are looking at the brighter side of absences.  My father, I tell everyone, is no longer suffering the overwhelming helplessness caused by a stroke.  The last few months of his life, within the framework of the last two years, were grueling for him and his wife, and there is a strange sense of peace that comes at the tail end of loss.  No, I’ve not yet reacted to it, thank you.  I’ve almost  caught myself about to crumble, but day-to-day life suddenly takes over, and I refocus.  It annoys me that I have to refocus, and I have promised myself that I will let go of the need for some control soon, but it keeps getting re-scheduled due to the impending end of the school year (the last school year ever,) and the re-structuring of our home life.  I have been trying to make sure that J understands that “being us three” is not a tragedy.  It’s just different…  This takes a lot more effort and energy than it would for a “regular” family.

I tend to introspect about that, as you well know.  I think about the whole “regular” family idea, and I try to make sense of how it would be “easier” for us to be one.  The conclusion I reach, again and again, is that I don’t know how it would be if we weren’t as we are.  We don’t know what life without Autism would be.  We’ve never really lived that way, but we’ve seen it done.  Take away the minivan full of kids being carted to and from extracurricular activities, the sleepovers, the vacations at Disneyland, the hopping on a plane to go on a family trip, the Christmas mornings, the once-a-year visits to the doctor, the tantrums at the store because a Lego isn’t being purchased, and you have our life…  Well, leave the tantrums at the store.  They don’t usually have a reason, but there are store tantrums…and they are judged like the tantrums of the neuro-typicals aren’t because, in our case, they are obvious reflections of a distinct inability to parent.  (It couldn’t possibly be a disorder that affects neurological development that causes them, could it?)

On Friday I read, with the same interest as anyone else who has a child in the Spectrum, that Robert De Niro and Grace Hightower have a child in the Spectrum.  I read this in the context of Mr. De Niro asking to include, for the first time in the history of the Tribeca Film Festival, a documentary called Vaxxed: From Cover-Up to Catastrophe.  The documentary was directed by Andrew Wakefield, and Mr. De Niro was hoping to start a conversation regarding what is a very personal matter to him and his family.

The backlash didn’t take long to start.  I admit I was not particularly impressed by Mr. De Niro’s willingness to give Wakefield yet another platform from which to spread his views.  Having Mr. De Niro, who is respected and admired in his field, give credence to a documentary of this nature would support the arguments used by the anti-vaxxer movement to justify skipping immunizations.  Pulling the documentary, after reviewing its content and finding fault with it, supports the conspiracy theories espoused by the anti-vaxx community.  It has become a damned if you do, and damned if you don’t quandary.

This is what I want to say to Mr. De Niro and Ms. Hightower…

Dear Bobby and Grace,

We know how you feel.  This unexpected bomb of inscrutability was dropped in the midst of your lives, and you’ve been trying to figure out why since then.  We’ve all been there.  We all wonder.  Some of us blame it on one thing; some of us blame it on another.  We are all being, whether we realize it or not, judged by people who don’t have this situation, and there is -even if it’s not called THAT- a pointing of fingers because we vaccinated our kids, fed them gluten and casein, had a glass of wine before we knew we were pregnant, lived near contaminated water, didn’t feel overjoyed when we realized it wasn’t the flu but rather a baby we were not yet ready for, and so on and so forth…

We all want to have the conversation.  We all have, in one way or another, tried to have the conversation.  I don’t know about you, but I have often been questioned as to why my son is in the Spectrum.  People often have offered explanations and reasons they have read/heard/surmised from other sources.  If you’ll notice, a lot of these people who have all these opinions don’t have children in the Spectrum.

It’s hard, I know.  Your child, whether people realize it or not, becomes a poster child for what you wouldn’t want your own child to be.  They don’t vaccinate “because of Autism.”  That totally sucks, you tell yourself.  You’re wondering why there can’t be a conversation and you realize that it’s because of the anger.  People who don’t have children in the Spectrum are angry that they might end up with one if they prevent communicable childhood diseases.  It’s a “conspiracy” because we, the “dissatisfied,” “burdened” parents of “damaged” kids, don’t want to be the only ones.  Big Pharma won’t rest until it makes ALL OUR KIDS damaged.

I don’t know you, or your son, but I know he’s not “damaged.”  He’s just the way he is, and it could be that there IS a link between a hereditary sensitivity to certain environmental factors, or that it’s just hereditary, but he’s your kid and that’s all that matters.  If he is, as the press has speculated, 18 years old, your work is about to change.  I’m sure your resources provide opportunities for him that are not par for the course with other individuals and families.  Still, the game is changing for you, too.  Your life, I know, hasn’t been the same since you were “told.”

We out here know.  You have resources we don’t have, but we are all the same when it comes to this “thing.”  We worry about the same exact crap, even if it is to different degrees.  Your heart, Mr. De Niro, was totally in the right place…because, like the rest of us, you want to know, and you want a conversation, and you feel like your hands are tied a lot of the time.

We know.  We hear you.  Our lives, just like yours, are full of constant route recalculations, fine-tuning, what-ifs, oh-nos, uh-ohs, unexpected alterations, quirky developments, head-scratching moments.  We live to the fullest, and some days it’s not in a way others -who don’t have “this” in their lives- can comprehend.

We are not less.  We are not bad parents.  We are not to blame.  We do our best to open a door that will help others understand, but…the world is designed for other things.  We have, in a way, adjusted our behavior, our worldview to that of our children, and we discover that we sometimes can’t quite communicate in a way that others understand.

You are getting flogged for one thing, and thanked for another.  You chose the give a quack a platform and you were slapped for it.  You are now being thanked for pulling that rug out from under Wakefield’s feet.

Yet, this morning, your day was just as it usually is with your son.  You have navigated, negotiated, tried to help, tried to encourage, tried to follow whatever goals you and your son’s team have decided to work on…

Life goes on…hobbling some days, and bouncing others.

We know, Bobby and Grace.  We know.  We are now listening to you.  Tell us what you think.  Help us say what we need to say about these young adults in the Spectrum…

You can totally do this, guys…





Suddenly, the end of the year is upon us…

How fast did the past few weeks go????  Sacrosanct bovine!  I could’ve sworn Halloween was yesterday!!!

Nope…it’s already December 7th, and we’re looking at 74 years since the attack on Pearl Harbor.  We’ve had several more mass shootings since I last wrote.  The world is an upside-down, very scary sort of place, and -after today- we have only Tuesday, Wednesday, Thursday, Friday and Saturday of J taking med.

And then the med is GONE.  Gone forever.  Gone for good.  Gone.  G-O-N-E…gone.

Are we ready for this?  Well…yes.  Is this the best time to do this?  Well…maybe not.

The tension with TGG continues.  He’s like the bull in the china shop that then turns around and says “what?  What did I do?” while standing in the middle of a sea of shattered glassware.  Sigh…

Dada has had to travel A LOT lately.  He was gone all last week, and things got a little topsy turvy with J’s schedule and routine, but we managed.  (By the way, nothing says “I missed you” in a person in the Spectrum like greeting someone who’s been gone all week by insisting they change out of their street clothes and put on their pajamas IMMEDIATELY!  Dada had to finish getting his stuff from the car wearing his fleece pants, his Mr. Incredible t-shirt and his fuzzy slippers.)

Of course, when we had looked at the calendar to calculate the date of the last pill, we hadn’t really let it sink in that it’s a Saturday, the day before the First Day of Christmas, three days before Dada has to do a day-trip for work, and two days before the class shopping trip for J.  As soon as my brain registered all this information, I hyperventilated a little.

After nearly six years of having that (shrinking) safety net, we now won’t have it at all.  As we stand on the edge of “one more change,” we look over our shoulders and wonder “have we done enough?”  It’s all in what we’ve done over time, you know.  If we’ve helped J develop the skills to handle his anxiety, fears, concerns and frustrations, we should all be fine.  If we haven’t, well, we’ll have a slightly rougher time of it.

To be quite truthful, there are days when I think that, yes, we’ve worked our asses off to help J, and there are others when I think we’ve fallen short of doing the best job we could do.  Second-guessing is an enemy we face often, and sometimes we smack it down, and sometimes it smacks us down.

One of the greatest problems I face (and this is ME admitting something that isn’t quite stellar about myself) is that I’ve reached an age when I feel I should be “done” with raising children.  I know I am NOT, but there are mornings when the alarms starts buzzing (and Dada’s alarm is very alarming…the volume and tempo of the buzz increase if you don’t promptly answer its initial beckoning,) I think to myself “crap!  Again?  I have to do this all over again?  And I have to have the same so-so results???  What if it’s a “bad” day?  Can I still navigate a “bad” day when I’m becoming increasingly achy and cranky????”

I know I can do this.  I am equipped for it by now, but it’s not EASY.  This is not a walk in the park for us, and J’s degree of dependency on us chafes at him, too.  Like any other adult, he bristles at having to ask for help with certain things, and I know it bothers him that he still requires help with things that other guys his age do independently.  The other day he was constipated, and having to admit this to me (his middle-aged, slightly cranky, glasses perched on the tip of his nose mother) is not easy.  I, after all, need to lean on him on days when I can’t walk without limping.  In the midst of tending to his digestive needs, I explained to J that I need his help from time to time, and some day I will need a lot more help in a lot more ways.

I know I can do this, but to that I have to add “for the time being.”  Eventually, I understand, it will all be “too much,” but right now I can do this.  J can do this, too.  J is beautifully equipped for this transition, and for continuing to develop skills and techniques for coping with life.  Of course, there WILL BE days when it’s all “too much,” but we all have those.  I’d rather have him try and fail than not try at all, and I have made sure that we all discuss this transition so that we can be helpful and supportive.

And here comes the one fly in the ointment: what do we do about TGG?  It seems to us that he has sort of “checked out” from our family experience, and we understand that this is part of growing up and wanting to be independent, but………..

Feel free to chime in; this is an issue that might ring bells in your minds if you have more than one child, and if you have children in the Spectrum and neuro-typical children co-existing in your family.

There is a balance that has to be struck when your family dynamic is altered by adulthood.  Ours is a home where communication is an issue because one of our family members is on the more severe end of the Spectrum.  We have had to jump through hoops, learn ASL, insert PECS into every room, go over things twenty-thousand times before we manage to nick the outer shell of J’s communication difficulties.  Talking about someone present in the third-person, or falling into awkward patterns that weren’t there before doesn’t help.

We had asked TGG to try to strike that balance while we take away J’s med, but I don’t think that TGG understands at all what we mean.  Deep in the throes of love, he has ceased speaking our language, and has learned another…one that belongs to a group of people who don’t truly understand what life in our tribe is really like.  Their customs, habits, rhythm, patterns are different from ours, and TGG has embraced them like a drowning man embraces a passing log.  In the process, he has discarded the language that would allow him to help his brother understand why so many things are changing at the same time.

So we are headed to territory that is somewhat familiar, but we are navigating a little blind this time.  Not a lot blind.  Just a little.

It’ll be fine.  In the end we’ll figure it out just fine because we always do, but we might experience a little turbulence along the way…or maybe not.

Let’s have a little faith until we get there.



The Last First Day of School Ever…

Today is the beginning of the end.  Sounds grim, huh?  Well, it sort of is.

J started his last year of school this morning.  I made sure to remind him that he is to have as much fun, learn as much, enjoy as much, grow as much as possible from today until the end of May 2016 because then school will be over for him.  He looked at me as if part of him understood, and as if part of him just wanted to dash out the door for the bus.

Yesterday we started talking about today very early.  J was happy for the greater part of the morning; he listened to his classical music, smiled and chilled out for a long time…and then he got taciturn and moody in the afternoon.  Our guess is that he was happy school would be back in session while realizing that some of his classmates moved on last year and wouldn’t be there.

Transitions aren’t easy for people in the Spectrum.  Any change in routine comes with a healthy dash of caution attached to it; parents tend to overanalyze, worry, plan, cross fingers, knock on wood, and so on and so forth.  We’re not just thinking about how WE will deal with an upset child; we are thinking of the upset child.

I had long considered I would slowly introduce the idea of “this is the last year of school!!!!”  This morning I decided I’d be blunt; I decided to go with the same candor that I use on the kids’ birthdays: you will only be this age once…relish it!  Well…this is the last year…make the most of it…

Nostalgia, of course, hits me.  I remember the many first days of school, and how this particular one seemed such a long way off.  I remember TGG’s First Day of School, and I remember his First Day of College…and now he’s had Another First Day of College (and this time I think he means it.)  I remember J’s First Day of School, and every First Day of School after that one.  If at one time he wasn’t thrilled, J grew to love school…to be excited about going…to look forward to it…to dread the long lulls between end-of-school and summer-school.

This, obviously, is the time of year when people proudly display pictures of their kids dressed up for the First Day of School.  Kids in uniforms; kids in kicky outfits; kids driving their hand-me-down car; kids getting their Class Rings; kids transitioning from grade school to middle school, from middle school to high school, and kids leaving for college.  It is a joyous time of year regardless of how it ultimately unfolds academically, socially, athletically, extracurricularly…  The beginning of the school year always smells of possibility, of the future, of progress…

Over here it smells of the beginning of the end, and it’s not a nasty smell.  It’s just a sad smell.  Or, rather, a bittersweet smell.  Once the School Year 2015-2016 is done, school is done.  There’s no college; there’s no vocational training; there’s no buying school supplies, singing the Bus Song…  We reach the end of a road and we don’t have a map to guide us any further.

OK…the truth is I’m sad.  This is the apex, the climax, the swan song of J’s school years, and it sort of says “well, your productive, intellectually-absorbent years are over, kid.”  I know J has a boatload of potential, but I know the rest of the world doesn’t necessarily see it that way (even if they don’t come right out and say it.)  The truth is that the system can only do so much, and the corollaries of the system are equipped to do just a little more.  Both resources are overtaxed as is, and there is a (quiet, secretive, resentful) sector of society that says “WHAT are we supposed to do?  These kids/adults/people are not our problem.  Let the families deal with it.  We can’t carry them forever!!!”

It’s absolutely true.  The school system can only provide services for J until a certain point, and when he moves on it is to make room for others like him who will move up the ranks until there’s no more ranks to move up through.  That’s the way of the world.  I accept that, and I know that much progress has been made by J, and that people have put their hearts and souls into helping him.

But I can still be sad, can’t I?  I can be sad (even if it is a little stupid because I’ve always known) that this is it.  That this is where we get off the train and stay at this particular station.  I can be sad that there is no college, no parties, no Big Game, no tailgating, no college friends, no college sweetheart…  I guess, in some stupid and totally ridiculous way, I am mourning that I don’t get to see my son finish high school and move on to be…someone else?

Of course, I am also mourning the Empty Nest I’ll never have, and I foresee a lot of work in my silver and golden years.  I will miss out on Me-Time, and being a Happy Go-Lucky Empty Nester.  I will have to find time, once school is over and done with, to still be me in spite of J’s constant presence.  But I knew that already, and I’m sort of ready for it all…sort of, but not quite, not yet…

Getting there, though.  That speech this morning was as much for me as it was for J.  Take advantage.  Seize the day.  Enjoy the last year of rushing home to sit with a book while sipping tea on cold winter mornings, going for walks with the camera and immortalizing autumn leaves, napping for 20 minutes after finishing chores, taking a long shower and leaving the conditioner in for as long as the bottle suggests…

It was our Last First Day of School Ever…time to go wait for the yellow bus!