Addressing the elephant in the room…now that we know it’s there

J’s tooth hurts.  J has admitted that something in his mouth is causing him pain and discomfort.  J now allows his face to show that he is not happy with this situation.  He keeps his hand wrapped up because, like I do when I have a headache that won’t go away, he’s trying to send the actual pain there…where he can handle it.

I know this because I have been doing this all my life.  For some reason, I learned early on to say “I am going to send the pain I feel in my tooth/back/whatever location is truly painful to my little toe…and it’s going to sit there and it’s going to stay there.”  I don’t know where I got that…maybe it’s something someone said to me when I was young and I misinterpreted its meaning.  But, yes, other than when I stub my toe while navigating a room in the dark (I swear the furniture moves to block my path,) I send pain to my little toe so that it becomes manageable.

Now that we know the hand is the lesser of his problems (but a problem nonetheless,) we can handle this better.  Early Thursday morning we’re having his mouth checked by the same surgeon who did the last extraction.  I’m trying to introduce the subject of how, from unpleasant experiences, we need to remember that good things can come…  The look of skepticism in J’s face says it all.

As for the hand…

The reading of J’s x-rays from the other night says there’s no fracture, but the words “apparent mild medial deviation” and “early degenerative changes” are in there.  They are referring to his fingers and the joint at the base of his thumb.  The hitting of the head isn’t, as we have known all along, harmless or easy to ignore.  That it’s still early days in J’s life and these things are officially on paper…well…you do the math.

Of course, that we know these things now doesn’t cancel the concern we feel about possible mental health issues for J.  We are not trying to, as they say back home, “cover the sky with one hand.”  The dreaded grunt was back last night, and all because I asked him to take off his band-aids while we did a family task together.  I even put a timer.  The grunt happened, as did the SIB.  It took some stern negotiating to get at the kernel of truth lying somewhere in his mouth…

None of this (meaning J, the future, his health, our health) will be easy.  If anything, complications will become the nonpareils sprinkled on top of everything.  We will have them in areas we don’t think they should be…nonpareils on meatloaf, tuna tacos, cake, coffee, Vicks VapoRub, weekends, holidays, a random Monday morning in the month of May.  Complications and surprises…

I wonder how many of us think about this when we’re hoping to have children.  I wonder how many of us think of it as our children get older.  Children are, for so many people, the culmination of a dream, the extension of  a life plan.  When you find someone you think you truly love you think “do I want to grow old with this person?  Do I want to have children with this person?”  Ours is not that scenario where the kids come back from college seeking asylum until life sorts itself out.

This is it.

Complications and surprises that we are half-expecting…half-hoping won’t happen…

We move forward, the elephant in the room is present and accounted for, and maybe on Thursday the view will be a little less blocked by it.  We move forward.

This could be as simple (and as complicated) as a wisdom tooth…

Yesterday was a gloriously quiet day.  Today? Not so much.

A side of J’s face is swollen, and he has asked for Tylenol.  I gave him an ice pack.  All this, of course, after quite a bit of SIB and anxiety.

Extracting the information of what bothers him is quite laborious, but I managed to persuade him that telling me is better than not.

There is a rather angry-looking wisdom tooth there.  It has come in crooked, and if that is what is causing all this ruckus, well, glory glory hallelujah, I say…

Of course, we still have to pass through the test of walking through fire and fighting the Gorgon…going to the dentist.

Wouldn’t it be nice if that’s all it is?  Wouldn’t it be horrible if that’s all it is?

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

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

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

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

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

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

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

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

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

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

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

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

Off I go to deal with everyday life…

A glimmer of hope…

I could hear the thunk of SIB before I opened the door.  I waited a minute before going to check because I wanted to make sure that J was not HAPPY as he did this.  When I opened the door he was sitting without bandaids, looking slightly forlorn, and halfway through his yogurt.

We’d had a good morning up to that point.  We made some lavender soap (commissioned by a kind cousin who loves J and wants him to have a project,) and we’d done a quick dash through our chores.  Beds were made, dishwasher has been run, breakfast burrito was consumed…

Now, at 11 a.m., a minor crisis.

BAND-AIDS! J said

Ok, go get them!  I’ll put them on you, I replied.

BAND-AIDS! he repeated.

Go get them, baby.  We’ll have those band-aids on you in a sec.

He got up a little slower than I expected, and as he reached the door he turned towards the DefCon board I placed there for easy access.  He took of the PECS that represents him, and moved it to FRUSTRATED.

It’s in poor taste to celebrate another person’s distress so I controlled that feeling.  I took J’s hand and said “let’s go get those band-aids right now.  Thanks for telling me why you need them.”

We climbed the stairs to the third floor, found a GREEN package of band-aids, and I asked if he wanted to sit on his bed to have his band-aids applied.  He sat down and we started unwrapping each strip.  I repeated how grateful I was that he had asked for my help, and told me how he was feeling.  I said he can always always tell me so that I can do my best to work on making things better.

Halfway through our band-aid routine, J said SORRY.  And I said “that’s ok, sweetie.  You told me you needed help, and I really appreciate that.  No need to be sorry.  We are here to help.”  I probably sounded like a flight attendant, and I tried to inject a soothing tone into what I was saying.  J helped me put the band-aids in the exact spots he prefers, and then he said HAPPY.  Instead of asking if he was actually happy I simply asked “you’re feeling better?”

We stopped at the supply closet and replenished all the band-aids in the baskets.  We packed up our trays and envelopes, and made our way downstairs.  I told him to put his share of the load on the table, and to finish his yogurt before refilling his band-aid packs.

On the way back into his TV room, J stopped at his DefCon board and said HAPPY while switching his PECS card to the corresponding emotion.  I know he’s more relaxed than he was when he first asked for help, and I know that it went a long way when I said I was here to help him and thanked him for communicating with him.  I also know that he is not yet HAPPY…but he’s working on it.

I did call Dada.  I figured an e-mail wouldn’t properly convey the excitement of the moment.  The sigh of relief was audible, and he said “that just made my day.”

The thing, you see, is that we know 100% happiness 100% of the time is an unrealistic expectation for anyone.  We understand that everyone goes through ups and downs, and that it is only fair that we acknowledge for J that he has a right to these things just like we do.

When I talked to his psych on the phone yesterday I asked if, perhaps, some of the mental illness that has plagued my family could be peaking at this point for J.  He asked some very important questions: has he stopped participating in the everyday activities he used to enjoy?  Does he seem listless and despondent?  Has he lost all spontaneity?  Can you still redirect him?  Based on my responses he said that it might be a cycle of anxiety, and we just need to observe J closely.  Should he hurt himself, and should we find it impossible to intervene in a positive manner, then the story changes, but J still has fun, still laughs, still participates in his and our everyday life with enthusiasm.  He certainly hasn’t lost his vanity, and he seems to be seeking a palliative for something that he can only externalize by hitting himself.  He knows it’s wrong, and he’s aware that it worries us…

And now he’s told us he’s FRUSTRATED.  He’s asked for HELP.

I think for today that’s a huge step.  We might slip back to being incommunicado tomorrow, but today we’ve done well.  It’s early, I know.  It’s a small thing.   A wisp of a thing.  A minuscule thing.  A microscopic thing.

It’s huge to us…

Covered in bandaids, but singing to himself…

I think (and I’m cautious in expressing that thought) that J has found something of a happy place…or some sort of balance.  As long as the Evil Hand is bound, he can manage.  He can even be bandaid-less for a while, but with limitations.

Yesterday was interesting.  We had expected less cooperation from J, but he did beautifully.  We went on an outing to meet TGG’s girlfriend and her children.  Because it was Sunday and J has been iffy we’d agreed to go shopping for baby clothes, and that way J would be able to entertain himself store hopping with Dada if he got bored.

Considering that we didn’t start our outing until later than expected, and that it took longer than anticipated, J held up nicely.  Dada, of course, had to divert him to do our shopping while I shopped with TGG and family, and then they went to other stores to get things WE needed for home, but J stayed calm.  When he said he was done, we took our leave, and we came home to let him decompress.

This took the form of hitting his head a few times, requesting fresh bandaids, and then saying he was HAPPY.  He had his lunch, changed into his lounge-at-home clothes, and watched TV for a while.  The rest of the day he was content with taking it easy and helping around the house.

Today he woke up happy.  He was singing to himself as he micro-managed Dada’s morning routine.  He very specifically asked for a breakfast quesadilla, a puzzle, and fresh bandaids.  And he has done all of it while looking relaxed, calm.

Yes, the day is young.  Yes, the bandaids are something we’d jettisoned a while back, but now have embraced passionately once more.  Waxing and waning, I think it’s called…and waxing again…and sooner or later it might wane…  Who knows?

We’re going with the flow.  We know there are rocks in the bottom of the stream, and that sometimes the water rises.  We’re working on it.  We’re doing all we can to make things better for him, but we have to accept that his idea of better might not match ours…

We’ll see…

Dear Apple…a big…fat…you know what to you…

Oh, Tim Cook…why, oh why…oh, WHY????

Not every update is an improvement, and -quite honestly- these now frequent Software Updates are making me wonder why I switched EVERYTHING to Apple products.  It’s so Microsoft these days!

Our beloved CLOCK…the TIMER that J was so familiar with is now an ominous looking black screen that he cannot make heads or tails of BECAUSE HE CANNOT READ NUMBERS!!!!!!!

Shit.  Fuck.  Dammit.  (Repeat until blue in the face as you try to figure out how to turn it back to the beloved diminishing circle that would comfort him when he was watching the time tick by.  Repeat when you realize that this is irreversible.)

Mother of the Kraken, Apple.  REALLY????  Not only are we spending plenty of money on your products, now we have to endure a change in routine that was completely avoidable and that is disrupting a person’s soothing routine????

His MUSIC has changed.  His iTunes has changed.  Now his CLOCK has changed.  This, stupid people at Apple, is not at all soothing for a person with ASD who finds the ease with which he used to navigate any of the TWO iPads in the house very calming.  Now he sits there and wonders why the numbers look like they are speeding by, and there’s NO DIMINISHING CIRCLE!!!!!!!!!

“Oh, well, you can purchase an app that will…”  Let me stop you right there, stupid people at Apple.  How much more money do you want us to spend?  Do you realize that this individual has a very limited income and that his Social Security Supplemental Income goes down when they consider we are covering his expenses?  Never you mind the logic of THAT…”well, he doesn’t pay his share of the rent…which should be one-third.”  “Yes, but he doesn’t receive enough to pay one-third.  Does that mean we should move to a cheaper abode?”  “You gotta do what you gotta do, but since you’re paying for his shelter and food to the tune of -insert amount here- we have to dock that from his benefits.”  “So we have to buy less food and move to a cheaper place?”

And now his diminishing circle of soothing time measurement is gone.  Gone, baby…GONE!  Just a black screen.  (OMINOUS.  Horrible.  Oh, shit…those numbers move SO FAST and I don’t understand them…self-injurious behavior, self-injurious behavior…)

Yes, Tim Cook…eternal gratitude for this “update.”  Yes, it’s AWESOME for anyone who WANTED IT!  We didn’t have any complaints!  We don’t think the damn thing works better?  What in the world makes Apple think EVERYONE wants to operate thermostat, locks, whatever through their iPad?????  Did you never watch the 70s classic made-for-TV movie This House Possessed with Parker Stevenson and Lisa Eilbacher???????  It was the Fatal Attraction of artificial intelligence operated houses, and I admit I will NEVER want a house that locks itself, thank you.  And, as if THAT movie wasn’t enough, the classic 1984 sci-fi rom-com drama Electric Dreams with Lenny Von Dohlen and Virginia Madsen is yet another cautionary tale.  So…NO…the HOME feature on this Software Update is NOT welcome either.

Thank you, Apple, for this disruption of our son’s routine.  In a year when our household has altered in size, people have come and gone from his social circle, school is out forever, there are no programs for him to participate in, and his mother has had several health issues that have caused him anxiety, your Software Update has been a crowning gem in the pile of his seemingly petty ASD-related issues…

Seriously…A BLACK SCREEN!  That’s right there with the rather large, always flaming fireplace they’ve installed in the lobby of the hospital…very comforting…very, very comforting…

Not all change is good for EVERYONE.

Rant over.

A quiet-ish day…

It rained all night.  Copiously.  It has been raining on and off since this morning.  Autumn is rolling in its colors, its weather, and its need for soup and blankets.  Very soon J will be happy cuddling up to me on the couch while we watch movies…  For now, he just wants to hang out in his TV room without our interference.

What was blatant SIB a few days ago has turned into more subtle stimming.  The edge of anxiety that seemed to characterize these episodes has dulled; there is mild head shaking (Dada has witnessed it, too) and mild hitting, and the bandaids are still there and it makes him happy to see that we’re well-stocked in that department.

This morning he spent an hour putting together Green and Red envelopes, and this project filled him with purpose and happiness.  The Green envelopes have a total of thirteen bandaids in them, and the Red have eleven.  All in all, this morning J packed 218 bandaids. While I waited patiently for him to be done, he packed his envelopes with zen-like calm.  He was soothed by the thought of soothing things being available to him…

The hand that was sans bandaids for hours on end up until recently now spends more time covered than not.  Sometimes it even looks as if J is trying to communicate telepathically with the rogue hand that wants to hit him.  He looks at it intently, and he holds it gingerly.  I don’t think he is in pain, but I do think his hand “bothers” him.  At first glance you’d think it’s physical pain because of the way he holds it (almost as if it will fall apart if he doesn’t carry it gingerly,) but then you realize that he is favoring that hand because of something else that we cannot understand.  He is quite capable of opening and closing it; he uses it to hold things, to grab things, to carry things, to touch things…but he treats it with near-deference.

We continue to offer options for activities.  We continue to try to engage him.  We repeat how all sorts of feelings (even the “nasty ones” no one wants to admit they have) are acceptable and we’re here to help.  He still says he’s HAPPY, and we hope that he will start realizing that we really do mean it when we say we love him and want to help.  How convinced he is of this remains to be seen.  If there’s one thing we’ve learned over time it’s that J’s mind is a lot more difficult to decipher than we ever imagined.  We work on all these things, and we hope that we will be successful to one or another degree.

The progress we seem to have made is that the bandaids are brought to us with a peppy hop and a giggle.  It’s more of a Broadway musical “I want these” than a Kylo Ren “I want these…and I hate that I want them and that you are the ones providing them.”  The fact that the Kylo Ren quality of his requests for help has diminished greatly is of comfort to us.

We head into the weekend with DefCon boards on HAPPY.  We are fully stocked with bandaids.  We now know how to say FRUSTRATED, EXCITED and CONTENT in ASL.  We are now more accepting of the deep breaths we are asked to take before we sally forth into whatever fray is developing.  We put aside everything to focus on the moment itself…  This is all becoming easier and easier to predict…we can feel the need to take a step back coming on, and we adjust before we engage.

J knows we’re trying.  We can tell.  We are sure.  J is trying too, but perhaps is not as well-equipped as we are to succeed in the shorter term.  Our goal is to improve his coping skills before the weather turns colder and starts interfering with our ability to leave the house on a regular basis.  Boredom can cause so much anxiety for J, and cabin fever (that lovely sensation I hadn’t experienced except during hurricanes) is an enemy of our peace and balance.  So we’re working on making sure that we add variety to the mix, that we let him set his pace, and that he knows whatever he is feeling is legitimate, and will be valued and addressed with respect.

And we have bandaids.  Lots and lots of bandaids.