[Some time late last night]
I’m having a tough time sleeping.
Five years ago today (I guess “yesterday” now) we received Jonah’s official diagnosis of “autism.”
I’ve been watching a lot of old videos of Jonah before he was diagnosed asking myself, “how could we have not known?”
There are three rating levels of “severity” in the current Autism diagnostic criteria. Jonah was diagnosed at level three.
“SEVERE” autism.
How could we have not KNOWN?
Looking back at all these old pictures and videos, I am starting to remember what I was feeling 4 and 5 years ago around the time Jonah was diagnosed…And I think I finally get it.
We just had no idea what “traditional” childhood (or parenthood) actually LOOKED like.
Jonny, our oldest, was far from “typical” and exhibited what we would learn are “autistic-like” tendencies ever since he was an infant. He exhibited sensory-seeking behaviors like “stimming,” and had other significant developmental delays.
But he also had a lot of medical issues as well.
And with all the hospital visits, the surgeries, the countless doctors appointments, and the therapies—Speech therapy, OT, PT, developmental play groups…
…The food aversions. Sleep aversions. Colic. Developmental delays…
…Back then, nobody could give us any sort of inter-connecting reason for “all of it.” Even “autism” was ruled out in Jonny.
They said it was just a bunch of random medical coincidences.
So we were still living in the “shadow” of all of that in 2016, when a developmental behavioral specialist brought up the possibility of autism in Jonah.
I honestly was thinking… “yeah, Jonah’s got all these issues… I know he isn’t talking yet and he’s nearly three, I know he likes things a “certain way,” and can get “worked up” from time to time. (Jonah would sometimes have meltdowns lasting 2-3 hours)…
But they didn’t compare to the 10 to 12-hour nightly scream-fests Jonny gave us as a baby which required Daddy and Mommy to take shifts calming him at night for it seemed like years (I refer to that period as “the dark days.”)
I suppose Jonah needed specialists as well.
He needed speech therapy, but so did Jonny.
He needed occupational therapy, but so did Jonny.
Jonah had “all these issues,” that needed to be addressed but Jonny had “all these other issues,” that needed to be addressed as well and all these specialists still couldn’t say definitively WHAT was going on with him.
(It was actually another parent that later clued us into looking up Kabuki Syndrome)
So I think I actually chuckled when a specialist mentioned the possibility of Autism in Jonah.
Because we had already ventured down that road with Jonny.
Jonah didn’t seem much different.
“Autism” was not some mysterious disorder we hadn’t already considered.
We had considered A LOT of things. I didn’t think much could actually phase me at that point.
But the actual diagnosis day for Jonah was hard for me.
No.
It was surreal.
I didn’t realize that Jonah’s “flavor” of autism was what other people would consider to be “severe.”
To me, Jonah just seemed like a happy kid who was just a little bit behind.
The doctor’s specific diagnosis and the severity rating she assigned for Jojo was difficult for me to accept.
This “doctor,” who had spent all of a few hours with Jojo… was now going to slap a “level 3 – autism” label on him, give us a bunch of paperwork, and wish us luck.
I went through the whole gamut of emotion. It almost felt like a “grieving” process.
“SEVERE AUTISM.”
THIS is “severe autism?”
Was I THAT out of touch with “conventional parenthood?”
Had I been “swimming” in these waters for so long, that I couldn’t even recognize what other people called it?
“Severe” just sounded so “awful,” and that’s honestly not how I felt parenting my kids.
Is that what I SHOULD be feeling?
Is that how I WILL be feeling in the future?
I mean, was “this” going to get worse?
I spiraled down the anxiety hole of “what if,” looking up every possible case of “level 3 autism” and finding the most horrible heartbreaking videos parents had recorded desperately seeking help for their “severe” child … just wondering if/when “that” could/would be “us”?
It took me a long time to get through that phase. And even now, there is still a part of me that wonders, “what if?”
I have to make a conscious effort to shut that part of my brain down when I start to ask myself “what if.”
If I go down that road, it would lead to a bad place mentally.
“Stop worrying about the endless horrible possibilities of the future and just concentrate on making today better than yesterday…
“Just one day at a time.”
I used to say that a lot.
It was good advice (It still is), but now I have come 5 years since Jonah’s diagnosis.
FIVE YEARS.
Five years of “baby steps.” Five years of just making it until tomorrow…
And that brings me to what’s keeping me awake…
I haven’t actually been doing this for five years. I’ve been doing it far longer than that. I’ve been doing it since JONNY was born 13 years ago.
I’ve been just making it through the day since the day we brought him home from the hospital… the same day we were told he had a cleft palate and could not breast feed. The same day he failed his first hearing exam…The same day they discovered his shallow/dislocated hip joints…
Heck..
I’ve been doing this since they discovered an “enlarged ‘nuchal fold’ at the base of Jonny’s skull while he was still en utero, possibly indicating a genetic disorder of some kind,” prompting the first of many weekly trips into the hospital for regular ultrasounds and other tests.
I’ve been doing “this” since BEFORE Jonny was born.
Thirteen years have gone by and I feel like I’ve just been treading water since then. Just trying to “stay afloat” one more day.
I was in my 20’s when all this started and I’m 40 now.
“Just making today a better day than yesterday.”
But how many “todays,” can I make it?
Sometimes it feels like there is no end in sight. No way to “make it to shore.”
“Just keep swimming.”
I feel like one day, I will blink and 20 more years will have passed…40 more years.
Will I still be “treading water” as a parent, just trying to “stay afloat?”
Will I still be where I am now? The same place I was 13 years ago?
Because one day, I won’t be able to keep swimming… I will run out of strength. One day, I won’t be strong enough… or fast enough.
One day, I won’t be here.
And I just feel like from now until then, I will always be in this role…
That’s what’s really keeping me up…
The realization that when I die, there is a chance I could still be doing what I’m doing right now.
I could STILL be at this current “phase” of parenthood.
UGH. I need to go to bed.
My mind is starting to play “What if?” again.
*falls asleep.**
—————
5-6 hours later
“Hey there, ‘middle-of-the-night Jason.’ Still up, huh?
It’s ‘tomorrow morning Jason’ here.
Thank you for sharing your thoughts. I just read what you wrote.
And look. I get it.
Sometimes I feel that way too. You are weary and tired and exhausted and you don’t know how long you can go on.
But you are missing a HUGE piece of this, buddy.
Your kids are “world-beaters” and you can do the impossible. EVERY SINGLE DAY.
Sometimes, I think you are just too tired to see it, or too tired of “DOING” it.
But look at you.
Do you remember when your in-laws drove four hours across the state with their own baby to take a night shift with Jonny and kicked you and Mama out into a hotel just so you guys could get ONE full night of sleep?
Seriously.
LOOK. AT. YOU.
It’s the middle of the night, and you are in your own bed. You are not consoling a screaming child. You are not sleeping on the floor blocking a doorway. And you are right now CONSCIOUSLY CHOOSING to stay up late and write. You SHOULD be asleep!
Do you not see that progress??
You are NOT where you were 13 years ago… or even FIVE years ago. You are beyond that. WAY beyond that.
I mean, Good Lord!
Did you not notice how last week BOTH your boys just simultaneously had the best parent-teacher progress report they have EVER HAD?
Did you forget that you just simultaneously got both your kids through dual teeth cleanings at the dentists office FOR THE SECOND TIME IN A ROW??”
Do you not remember how awful it was a year ago?? Trying to chase Jonah around with an iPad so he could do “school” while Jonny was crying and screaming in the background because it was his first year of middle school, it was his FIRST year at a new school, and he had to figure out how to navigate all of that from his cousin’s house on a LAP TOP he didn’t know how to use?
Do you remember literally running a freaking MARATHON last year, thinking it would be the hardest thing you would ever do and then finding out it was not even the hardest thing you would do THAT WEEK??
Do you see Jonah excitedly waiting for the bus and sprinting to get on it because he LOVES going to school and learning so much now??
Do you remember having to carry him completely naked into the car having a full-fledged meltdown thinking you’ll just “get him dressed at school while you were parked” because Jonny was having a meltdown about being late?
And you think you are just “treading water?” SERIOUSLY??
Do you not see the progress?
You think you will be doing this until you die??
“Oh, I might still be doing ‘this stuff’ in 20-40 years.” 😭
BUDDY, YOU ARE GOING TO MISS THIS STUFF!!
Do you not see how far your kids have come and the projected path they are on?
I know you think life is awful right now, but do you know what? Tomorrow is coming.
My day is better than your day.
And tomorrow will be better than today. And the next day will be better than that.
And each “today” will be better and better.
But you are right, you only have so many “todays” left.
Stop wasting time worrying about wasted time.
“Keep Making today a better day than yesterday.”
Because if WE keep doing “that” until the day we die, then on that day, we can look back and say, “TODAY WAS THE BEST DAY OF MY LIFE.”
We can look back from the top of our parenting mountain and say, “look how far we have come.”
Now Buddy, go to sleep.
Seriously.
I wish you would.
You are going to make me brew three pots of coffee today and I’ll be up until the wee hours of the morning…
…worrying about this stuff again.”
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