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.

 

 

We go on a family vacation…

Spoiler alert: we survive.

On a sunny Saturday morning, and after lengthy and detailed preparations that would qualify me to participate in organizing D-Day (if I’d had a past life,) we hopped in our car and drove east to D.C.

J packed enough stuff to stay a month.  He wore all of it.  His suitcase was heavier and better equipped than any other suitcase I’ve ever seen.  At some point during his childhood he must’ve heard me say “always pack more underwear than you think you’ll need” because he only left enough underwear at home to use while his post-vacation laundry was being done.

This was the very first time we took a trip without TGG.  We were cautiously optimistic about how this might turn out, but we were also ready to graciously accept defeat and head home early.  A Saturday-to-Wednesday didn’t seem significant when we originally planned it, but once we got to our hotel we started wondering if we’d bitten off more than we should chew.  Notice I didn’t say “could.”

We timed our drive in such a way that we arrived at the hotel shortly after check-in time.  We suspect that his hotel has only one set of adjoining rooms because we got the same ones we were in the last time.  This is not a bad thing because J was familiar with the set up, and even looked around as if to say “ah, yes…MY room.”

It seems that we are the bringers of heat waves.  Our trip last year was in June, and it was pretty toasty.  Our first day this time around was very much in the same vein.  We have decided that we will plan for either earlier or later in the year the next time around.  Maybe that way we will have cooler weather, or we will bring a much needed spike in temperatures to the area.

We walked all over D.C.  J was so happy to be out and about!  Of course, I took both iPads, and I bought him a set of headphones that worked a charm.  September is a lot less crowded, and we managed to experience things that we had to skip last time.  Last year J had problems with the crowds at the Smithsonian Air and Space Museum, but this year we walked around the Smithsonian American History Museum and the National Portrait Gallery.  I made sure that one of the iPads was fully charged up when we left the hotel, and then I’d swap it for the other one as it reached 10%  charge.  This allowed us to be out for hours, and J could drown out the noises that tend to cause him anxiety.

We had Sunday brunch at the very crowded but very much worth your while Founding Farmers.  We had a reservation for ten a.m. and, should you want to go there, get a reservation because the lines can be long, and the wait can be exhausting.  After a hearty meal, we set out towards the National Mall, and ended up circling around the Tidal Basin and sitting for a while at the Jefferson Memorial.  There is a very friendly squirrel there.  This, and birds, were the only living creatures that gave J pause.  The first day he was a little overwhelmed by the birds, but by the second day he was much better.  I don’t know if he just thought to himself that they were as much a part of the environment as the buildings and people.

On Monday we made our way to Dupont Circle and explored a couple of bookstores that we had been hoping to visit last year.  J had fun walking around.  He also liked eating a mid-morning snack at Panas, a small place where they make delicious Argentinian empanadas. Tuesday was museum day, and J was relaxed and happy in spite of the seeming not-very-J theme of the day’s schedule.

I will now take a short moment to tell you about the one fly in our ointment.  We took him to dinner too early on Saturday.  I had mistakenly thought he was more tired than hungry so we went for tapas at a fairly early hour.  In the middle of the night he was grumpy and disruptive, and we had to get out of our bed to deal with his anger.  He went through several packages of bandaids, and he was complaining in spite of the snacks I gave him.

At around four in the morning I had to sit him down and tell him “these are all the bandaids you have left.  If you use them all up, we will have to go home because I didn’t come here to buy you bandaids.  When we get up, we will go to breakfast.  If you want to go home then, fine…it would be nice, though, if you told us why you’re unhappy so we can help you.”  Dear reader, that was the end of the bandaids issue.  If I tell you that we came home with the packages of bandaids I showed him in those early morning hours, would you believe me?  You should.  He didn’t ask for any again.  After this incident, J was very communicative about his needs and wants, and we ended up being thoroughly impressed with his behavior.

Now, the other thing I want to tell you about: we are SO GLAD we have made a habit of setting the table each evening and eating together!  We took J to several very nice restaurants, and it was wonderful to see how well he navigated the sea of glasses, cutlery, trays with bread, etc.  I know it sounds snobbish, but we wanted to take him somewhere nice so he would see that all the effort he puts here pays off.  We took him to dine at a lovely restaurant called Casa Luca.  We made an early reservation and it was wonderful!  J ordered the gnocchi, ate his bread after dipping it in olive oil, tried the prosciutto…  We then walked back to the hotel.  It was awesome!

For lunch on Tuesday we went to Rosa Mexicano, and he loved it!  The tapas at Jaleo were out of this world, and they had his favorite sausage: chistorra.  If you’ve never had chistorra and you see it somewhere, try it.   Dip it in something sweet like honey…J highly recommends it.  We made sure we took him to places that might be crowded and noisy, and the headphones did the trick.  We didn’t do this out of meanness; we simply wanted to show him that we cannot always go somewhere where he will have the absolutely perfect conditions.  He adjusted very well.

We drove home on Wednesday and, after a one-hour delay in very slow traffic on the interstate, we made it back with plenty of time for J’s sitter to come see him.  We had her over for dinner and he was very happy to start swinging back into his routine.  The rest of the time until today has been dedicated to settling back into the everyday drudgery that is our life.  He has been happy.

So that’s the recap of the Great Family Vacation of 2016.  We hope to repeat it next year.  We know now that J will happily go along with plans as long as we address the issues that can cause him anxiety.  I cannot get rid of birds, but I can make small adjustments that will make him feel comfortable, and help him realize we care and are trying to help him.

On to other news and comments tomorrow.  For today I’m basking in the glow of a successful trip with our son.  🙂

 

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.