The Monster Is Eleven

It’s scary, but true – the Monster turned eleven back in May during the long, dark blackout in my writing.  (Normally, this post comes out on his birthday, a tradition I’ve had back for almost a decade now.)

Now, to be wholly fair, being so close to things, I don’t notice the little changes.  That said, I don’t feel like there’s been much significant change in the last twelve months – he’s certainly been exposed to a lot of things, had a lot going on around him, but the changes have been evolutionary rather than revolutionary.  Certainly, in some spots, we’re even seeing regression – points where he was doing fine and he’s sliding backwards, like his pace of eating or his ability to handle standard tasks that he normally handles just fine – but I’m finding myself wondering how much of it is just his being a pre-teen, and how much of it is something that’s a side effect of how ABA’s been handling some of his things.

Speaking of ABA, my job-change really threw a spanner into things.  Despite having roughly the same insurance as the old job, it turns out that they shouldn’t have been billing our ABA as ‘in-network’ with this provider and… we were forced to drop ABA for the time being.  It’s a mixed bag really, because I felt like there were places that it was significantly helping him – he’s definitely gotten more independent in some self-care or picking things to do – but the turnover in supervising BCBAs caused issues with even having goals.  If we do put him back into ABA this year, it’ll be with an eye towards a constant BCBA and consistent goals for the technician.  But things we’ve gotten out of ABA – he certainly has better verbalisms for when he doesn’t know what he wants.  He asks for help now in a more discernible fashion.  He can handle most of his bedtime routine himself (including brushing teeth) and we’re starting now and again on having him help with simple meal prep like grilled cheese sandwiches when life permits.

On the other hand, we seriously now have to start talking about what he’ll do for his bar mitzvah, as it’s two years out.  Not that we’ve picked a date yet – we’ll do that this fall, I imagine, in meetings with our clergy – but we have to figure out what we think he’s capable of doing and what would be meaningful for him.  I’d like very much to build it around him having some singing or the like, which he can do very well… and then there are the times that he surprises me, like when he starts echoing my practicing a portion at least in terms of the melody.

One big positive for this past year – the Monster’s continued with youth curling at our club.  This year, the US Curling Association instituted (with little warning) a game that they threw across clubs in the US requiring a variety of skills to declare club winners.  There was no time to request accommodations for the Monster, so he competed as an actual nearly-eleven-year-old and… he actually came in second in his age bracket after a tie-breaker to decide who was our actual club winner.  (Okay, okay, there were only two of them, but still, he and the other child tied after the initial round and had to have a repeat draw-to-the-button to decide the winner.  And the Monster wasn’t too far off the mark just… on the next sheet over.  Alas.)

This coming school year (well, the one we’re really already in, since his school starts in July) finds him legally as a rising fifth grader.  We’re fortunate that his school’s now a K-8 so we don’t have to worry about an additional transition now before high school… but it also reminds us that we’re running out of time before he is in high school and we have to start worrying about transitions to adulthood.

Why does he have to keep getting older?

The Struggle is Real

So, important things first – everyone is whole, healthy and hale. Nothing’s been so wrong that I’ve been quiet for ages and ages and ages for an inability to write…

I was once taught the wonderful (and apocryphal) Chinese aphorism: may you live in interesting times.

Things got interesting offline, I got in the habit of not posting updates here because it was the least important of things while I was trying to cope and… well, inertia is a wonderful-horrible thing (as I learned in my physics classes, and unlike the aphorism is entirely real). But getting back to it’s just taken some time and effort, and now that my plate’s finally starting to clear, it’s time for me to start writing here again and sharing my not-quite-wisdom with all of you resuming my role as your cautionary tale of parenting a special-needs child.

As I write this, the wife’s off at a conference for work and I’m home alone with the boys – R is attending karate camp this summer (and why we’re weaponizing our seven year old is beyond my understanding) while the Monster is back in his summer session at school. I’m well-ensconced in a new job where I’m facing different challenges on a daily basis but getting to do the things that I enjoy… and life is moving forward.

On the Road – Autism on the Seas

Early morning Monster on the Anthem of the Seas, Oct/Nov 2018As I’ve mentioned numerous times, our biggest problem traveling has been terror of how the Monster might respond to a trip anywhere.  Our vacations, typically, tend to either involve going with family so we have backup or going somewhere that we can ‘abort’ back home if there’s too serious of a disruption.  We’ve gone to the beach and small trips within driving range primarily, so we end up within a few hours radius of our house where we feel ‘safe’.  Flying somewhere’s been off our radar, despite having gone through Wings for Autism and his seemingly having responded okay to that.  A week on a cruise ship, though, where there are thin walls, no availability of adjusting the environment and especially no aborting back to home?  Out of the question, you lunatics.

About a year ago, my family and I had the benefit of enjoying a morning with some of Autism on the Seas’ staff on Grandeur of the Seas, the Royal Caribbean ship that’s travels from the Port of Baltimore.  The goal of the exercise, besides obviously getting a sales pitch for their services, was to see how the Monster would respond to being on a ship, and to figure out if we could imagine ourselves actually putting ourselves through that kind of an exercise.  I’m also a big believer that a test-drive often doesn’t give you a full, accurate impression of a company’s services, but I could put my thoughts on that aside when the wife and I actually found a few sailings that worked with our schedule and budget and… suddenly, I found our family preparing to go on vacation. Continue reading

There and Back Again

So we’re back from our vacation.  (Yes, yes, I know I promised to post this yesterday – work just got crazy on my return.) Not that we’re unpacked yet, mind you, because we overpacked as we’re inclined to do, and so there are suitcases and duffel bags littering our foyer, but…

The short version, without going into things I’ll touch on in the review later this week – a week, for something like this, was probably the right amount of time. Continue reading

Wait, what?

I never quite know what to expect when I take the Monster out in public.

The truth is, I feel like greater than fifty percent of folks seem to assume that the Monster is listening to music or something (at least based on the ones who decide to say something about his headphones).  Even the people who realize that he’s not a ‘normal’ child, though, I have this little thing in the back of my head about trying to figure out what they make of him when he’s out in public.

And still sometimes, I get pleasantly surprised. Continue reading

Giving It A Try

The Monster’s started his third year of ‘real’ Hebrew school this week.

When I was… well, when i was closer to R’s age than the Monster’s, I started Hebrew school – first once a week, and then thrice a week as I got to third grade.  The goal was to make sure that I arrived at my Bar Mitzvah armed with basic knowledge of ritual, Jewish history, and Hebrew, and was able to function in a synagogue as I got older.

And that’s where the questions about the Monster and Hebrew school really intersect. Continue reading

Getting What You Ask For

Repeat this mantra – “non-verbal does not mean mute”.

I’m constantly surprised at how folks comment on how ‘verbal’ the Monster is, without understanding that while he can say a great deal, he doesn’t communicate a lot.  He does have words, but they’re often hard to pull from him to get at the crux of what he wants at any given moment.  Like a lot of parents, we frequently grumble about how we wish he’d just tell us what he wants.

Well, we got our wish this week. Continue reading

Earworm

One of the Monster’s talents we’ve noticed, a long time ago, is his ability to remember and reproduce music.

At one point, we’d investigated music therapy for him, but discontinued it when his schedule got more pressing and it didn’t seem to be having an effect.  But throughout, we’ve continued to notice that he has little… tunes caught in his head. Continue reading