Well, not only did I miss the last day of
April, I couldn’t even get it together to close out on May 1. Well, if you’re going to be late, be really
late. Go big or go home baby. Let’s just say it was a hectic week and leave
it at that. Of course, now I’m conflicted
between exiting quietly, or, spewing an unorganized, rushed and haphazard
commentary about all the things I didn’t get to tell you. It’s an easy answer, really. Doing things quietly has never been my game.
The fact is, since last April, we’ve arrived
at a really good spot. I catch myself
pausing each night, marveling at how happy Coleman is and a bit worried too,
fearful that things will go awry and that somehow we’ll end up back in a place
where things aren’t so great. When we
left you last year, Coleman had regressed into a tough spot. We lingered there for a while, doing test
after test trying to figure out why Coleman was so miserable. We feel confident that going Gluten Free was the trigger, probably because we shocked his gut and he went
through major withdrawals. At the same
time, the Epstein Barr flare raged higher and higher. Finally, Dr. Bock came to the theory that Coleman’s chronic
viruses (including EBV) were causing a long term immune response resulting in widespread inflammation. Our subsequent trial of the anti-inflammatory, was truly the beginning of the turnaround for Coleman. The unbelievably quick response to that
antibiotic was the catalyst for months and months of positive changes. Coleman’s gigantic reduction in anxiety was undebatable
and opened for us a door that we simply refuse to close again.
For starters, a great deal of Coleman’s prior
obsessions and sensitivities either went away entirely or were reduced to a
point where they are no longer a problem.
Clothing sensitivity? Hardly an issue.
He tugs at them for a second or two to get them ‘right’, but that’s
it. I even managed to get a few sweaters
on him this winter without issue. The
turtleneck for skiing – check. It went
right on. Hats? No problem. Helmets? Easy.
Even the hood on the formidable raincoat – we got that on too. And the big step this year was getting him
his own baseball hat to wear out in the sun.
“No thank you” he said politely when we first talked about it. But we made a big deal out of going to the
store to pick one out (he was highly uninterested) and simply said “When we go
to the park or out to play we have to wear our hat.” And that was that. He’s worn it every day since. (While it looks
adorable, the intention was not for looks, but to block the sun from Coleman’s
face – he detests sunblock.)
We even made progress with the dreaded
changing of seasons. What used to take weeks
of prep to get a winter jacket on took absolutely no time at all. He even was ok with a mid-season switch to a
new jacket when we accidentally left his jacket behind in New Hampshire. “You
have to wear this one for a few days until we get your other jacket in New
Hampshire ok? It’s too cold for a vest.”
And, as he put it on the next morning he
simply repeated “You have to wear this one for a few days.” Done. How about that obsession with closing
doors? You might remember I had to lock you or some other poor soul in the
supermarket by blocking the automatic door with a shopping cart to get it to
stay closed, just so I could leave, so obsessed with watching it close was
Coleman. Now I am like a real honest to
goodness adult and don’t do such teen-like pranks because Coleman doesn’t care
about the door anymore. And remember
our issue with lights? You’ll be happy to hear that Coleman no longer cares who
turns on or off lights. At all. Go ahead, turn the bathroom light on. I dare you.
And Driving? Remember how Coleman
was my personal Garmin, except entirely incapable of changing routes? The slobbering hot mess of a child that he
was transformed into if Heaven forbid I took a right on Main street? This issue persisted for years. YEARS.
But, now, it’s gone. No issue
anymore. I can drive anywhere, and take
almost any road at any time. Short cuts
never felt so good. Perhaps best of all
is the return to normalcy in our bedtime routine. I was going to take a video of it for you
all, so you could wallow in the glory with me, but then for sure I would have
had to really clean the bathrooms and the girls room too which obviously given
my tardiness in this post I simply don’t have time for, so you’ll have to just
trust me on this one. Coleman’s bedtime routine is absolutely, blissfully
boring. Brushing teeth and saying good
night to his sisters. You can really only appreciate this if you knew the
absolute circus that was our bedtime routine up until only a few short months
ago. Seriously, I may as well have been
juggling chickens and riding a unicycle down my upstairs hallway. No more.
Hell, I don’t even have to hide the girls’ friends in the closet anymore
when they spend the night. And I think you
were all probably judging me a little on that one, so rest assured, no one is
in the closet anymore.
It might be hard for you to imagine how these
simple changes could dramatically impact our lives. Let me just tell you. They do. When everything from the time you
wake up until the time you go to bed is a fight or a meltdown, when turning on
a light or putting on a shirt evokes the same response as being hit with a sledgehammer,
when you try to avoid almost every single thing in your day that is not exactly
the same as it was the prior day, and when you do everything in your power to protect
your little guy from those parts of life that challenge him in the most unreasonable
ways, well, your days are extraordinarily long and stressful. But then, one day,
you wake up to find that all of those things don’t matter anymore. Somehow your little guy can handle the weight
of driving up Main street, and you no longer need to be two steps ahead of him
all day because all of those things that are different today are just ok. God Almighty, it’s like some kind of
Heaven.
It’s been awesome for Coleman too, as he is
infinitely happier, laughing so much more, and he is just really just so much
more focused. He begs each night to play
games and we happily oblige. His
favorites are hide n’ seek, Tag, and Duck, Duck, Goose. He misses the finer points of the games,
answering “I’m right here!” when you call out rhetorically during Hide n’ Seek,
“I wonder where Coleman is?” And he sometimes defeats the point of the ‘Tag’ by
demanding you hold his hand while he runs after you. And, similarly, when you tap his head during
Duck, Duck Goose, and he gets up, running after you, laughing but yelling “HOLD
MY HAND!” Still, he is finding so much
joy in playing – it’s something beautiful to see. We are also having fun teaching Coleman jokes
– I’ve shared his favorite (i.e. only) ‘knock-knock’ joke in the video
below. We hope you enjoy watching it as
much as we do.
In all, things with Coleman are good. So very, very good. Yes, he still has Autism. And sure there are plenty of issues that
linger, plenty of things we need to continue to work on. Our mornings are still difficult, as Coleman seems unable to adjust to the fast pace that is inherent in almost every
household on school mornings. And I still
have to pretend to fall out the front door, and I still have to yell “Birds Nest Catching” as I
drive away. So rest easy, our lives are still littered with lunacy. And there are endless things that
Coleman is still not able to do. He’ll be
thirteen this year, and yet he cannot fully write his name, he cannot dress
himself, he cannot bathe himself, he cannot tell the difference between friend
or foe, he cannot hold a conversation…there are so many ‘cannots’. But this year the big message is that we
crossed a lot of the ‘cannots’ off and put them on the ‘can’ list and for now,
we’re happy to focus on that. If we do
that every year, well, eventually, the ‘can’ list will be a lot longer than the
‘cannot’ list. And that will be enough.
Looking ahead, we’re learning to ride our new
scooter, gearing up for SNAP soccer, and anxiously awaiting track which is set
to start up again in two weeks. We look
forward to more impromptu playdates with our neighbor friends, as well as sunny
beach days and amusement park roller coaster rides that arrive each year with summer. Finally, we pray every day: Please God, tiny
improvements. Forward momentum. That will be enough.
Thank you for reading again this year. See you next April.
Birds Nest Catching.