10 Small Moments of Progress During a Rough Autism Day…
September 22, 2014
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Now Reading: 10 Small Moments of Progress During a Rough Autism Day…
September 22, 2014
This post is about our day yesterday. And how it was a rough Saturday on Autism Avenue, but when I really look back on it I noticed 10 small moments that really showed great progress in my autistic son. I just had to open up my eyes to see them…
Ok so maybe it really wasn’t that rough a Saturday. Maybe my son wasn’t all that bad… maybe it was all about how I was reacting to things… That’s what my wife said… but that’s not what this post is about..
In my mind it was a rough Saturday and somewhat of a throwback to some of the real rough Saturdays when Kyle was younger.
But within some of the rough stuff I was able to step back and appreciate that while some things are the same lots of things are different…and for the most part different for the better.
Ok so here’s how the day went down.
So we had a birthday party for an ASD friend set for 4pm, but had no plans scheduled before then which is always bad news for all of us.
The king took a late -morning nap at around 11am which is his pattern these days…even at school…and even though he gets plenty of sleep at night.
Are these naps the results of mini-seizures, side effects of meds, or just growing pains of an early puberty tween? We have no creaking clue and that’s not what this post is about anyway.
So, he falls asleep at 11am. Wifey rattles off a few tasks we can accomplish while he’s asleep. I want no part of any of that. So instead I go out for a 9 mile run at around noon.
I get back 100 minutes later. (Yes I am that slow) and the king is awake and wifey is working on a gift basket for a baby shower she’s going to today. Wifey takes pride in making a great basket..laying everything out perfectly…and then wrapping with cellophane… It’s an old school art project for her.
So she’s working on that and the king is breathing heavy and holding his breath like a mad man and is starting to get really antsy. He’s stomping around the living room, playing with the lamp, getting into everything, etc. He’s not used to still being home at 1:45pm on a Saturday…..and wifey is losing her patience.
I come out of the shower and I hear wifey yelling at Kyle a little. “just give me a chance…let me finish this…”
And there’s Small Moment of Progress #1. The breath holding, the breathing heavy, the antsyness, the getting into everything… All that’s been going on for years… But part of the reason he was frustrated was that he was bringing her books to read and she wasn’t reading them fast enough or wasn’t reading them the way he wanted.
Wifey said “he keeps bringing me books, or taking my hand and leading me to his playroom. And then I read him the book or go play in his nook and he immediately leaves the room. I don’t know what he wants…and I want to get this basket done.”
Totally frustrating for him and for her. But what’s huge…what’s progress from
years ago is that he was actually seeking her out. He wanted her attention. He took her by the hand…not just cuz he needed popcorn or something but because he wanted her company.
Of course then he didn’t and he left the room and it’s frustrating that she can’t figure out why…(did she not read it correctly in his mind?)…but the fact that he sought out her company is major progress from years ago
So I see that’s he’s frustrated and she’s frustrated so I say to wifey “I’ll take him for a ride and we’ll pick you up in time for the bd party”
And she says “Great!”
And I’ll admit that part of the reason that I offered is cuz after running 9 miles I was hungry and nothing we had in the fridge was exciting me so I figured I’d drag him to the Burger King Drive thru so I can get my double cheeseburger on.
But just as I’m leaving wifey says “he hasn’t eaten much today at all…maybe take him to a pizzeria and get him some mozzarella sticks”
I’m about to mention BK and she continues…
“He never eats Burger King for me anymore”
So we leave the house and I remember Nathan’s! Nathan’s famous franks! The king loves hot dogs! I’ll drag him there. Wifey says he’s been real good in stores lately. He’ll love a hot dog and some of their fries.
And so will I!
So we trek over to Nathan’s. Now I haven’t brought Kyle inside a fast food place in years. We always use the drive thru.
I have some bad memories of some real bad fast food restaurant experiences back in the old days. Spilled milkshakes. Meltdowns waiting on line. All the usual autism stuff.
Regular restaurants with a waitress he sometimes does ok with but even then wifey is always with me.
This was my first solo attempt at a fast food place in a long time. But he’s been really good lately and he loves hot dogs and he’s got to be hungry by now.
So we march in… And from the second we walked in he made it clear he didn’t want to be there. Not by melting down but by stiffening up. After I ordered and had my tray I tried to get him into the booth he stiffened up and put up a silent protest and refused to get into the booth.
It was actually kinda weird. But he is freaking strong! But I’m still stronger.
So I pushed him into the booth still thinking that the first bite of hot dog will make all right with the world? But do you know this kid refused to eat a bite? I brought his popcorn in and he refuses that too. I brought his books and iPad in and he wanted nothing to do with them. He just wanted out of Nathan’s!
But sometimes he’s gotta be pushed especially when daddy is freaking starving. So I wolf down my hot dog all the while as the king is pushing against me trying to get out of the booth.
Finally I say “do you have to go potty?”
And he signs “more” which is basically his only sign but he uses it almost like “yes”
The signing is Small Moment of Progress #2.
So I take him to the bathroom… And he didn’t have to go at all. It was almost as if he played me and said yes to potty as an excuse to get out of the booth. Taking advantage of the situation and playing me is Small Moment of Progress #3..
While in the bathroom I explained calmly but sternly “listen I know you want to leave but daddy is hungry so we’re gonna go back out and you’re gonna sit next to me in the booth and I won’t force you to eat but you gotta chill and look at your books and let daddy finish”
And we went back and he was better. Very loud and verbally stimmy. Bouncing up & down in the booth like a kangaroo. Thankfully there was no one in the booth behind us…
Actually not thankfully… I purposefully chose a booth with the sofa machine behind us…almost subconsciously. After years on the autism train some things just become second nature… Always seek out a booth where no one can sit behind your kid… Just in case of anything…
Anyway back to our story… he’s still being rambunctious and loud but he’s not pushing against me to get out of the booth the entire time.
I think my conversation with him in the bathroom actually sunk in. That’s Small Moment of Progress #4..
Then here comes 3 moments in a row… Maybe these are only one moment, but I’m gonna count them as three…
As we’re leaving Nathan’s I say “you carry your book and your bottle of water”.
Carrying one thing in each hand while walking. Not easy. He picked up the book.
“Now get the bottle”
He puts the book down and gets the bottle.
“No you need to carry both. Use both hands to carry”
He did that. He looked confused for a second but then she got it! That’s Small Moment of Progress #5
Then he started heading towards the door.
“Ok now you open the door”
Slight confused look.
“Push against the door with your back.”
And he did it while still holding the book & bottle! That’s Small Moment of Progress #6.
Then we get outside and my car was parked a little far away but the lot was quite empty so I said…
“Ok, let’s go to our car. You lead the way.”
And he knew exactly where he was going and walked there with a sense of purpose while still holding the book & bottle.
So that’s Small Moment of Progress #7
Again, as I’m 7 moments in I have to stop & say this isn’t the first time he’s done any of this stuff…or the first time I’ve noticed… it’s just that yesterday in the middle of a rough day I noticed how the rough days used to be rougher, and how much easier things are now due to these small moments of progress…
Ok, so we fast forward to the birthday party. It’s in one of these bounce house type places. An hour of autistic kids bouncing around and an hour of kids in the party room eating pizza & cake. And Kyle is somewhat enjoying the bounce house part.
The Small Moment of Progress (#8) that I noticed right away is that Kyle knew where the exits were in each of the bounce houses were and would listen when we asked him “come on, let’s move on to something else”
In the old days one of us would usually have to climb in there and drag him out.
The other thing I noticed (Small Moment of Progress 8 and a half?) was that he was a little afraid/ fearful of other kids bumping into him in the bounce houses. In the old days he’d be oblivious to anything or any one around him. But yesterday he was flinching and almost defensive when kids jumped near him. Ok, so maybe that’s not progress… that’s just something I noticed… one of the things that make you go hmmm…
Then the pizza part of the party was a real throwback. Kyle was the oldest kid there, and all the other kids, many with asd were all sitting & well behaved and my son, just like in the old days wanted nothing to do with it. He hated being in that room. He had no interest in pizza or cake. So he would exit the room frequently with me or wifey chasing after him. Nothing new there…but what was new is Small Moment of Progress #9… He knew where everything was. He ran out of the room and headed to the party room. He remembered where it was. Same goes for the bathroom and the motorcycle arcade game. He remembered where they were. Who wants to be in a party room when I can be in a bounce house, or the bathroom, or the arcade! He exited the pizza party room with a sense of purpose. He knew where he wanted to go and he remembered how to get there…
And finally Small Moment of Progress #10 is actually the HUGEST, but I sometimes take it for granted. When we got home from everything and Kyle marched himself into the bathroom, pulled down everything and sat down and did his business (#1 & #2) it truly hit me. On a day like yesterday which was a little rough, and kinda felt like the old days when Kyle was younger I really appreciated the fact that the king is potty trained!! In the old days everything I dealt with yesterday would have been made 10 times worse with the possibility of a potty accident…or a diaper change…or a pull-up change…looming around every turn…
Not having to factor that in to the equation yesterday was huge and not lost on me!
Anyway that’s about it. I’m gonna end it here…
There’s 10 small things I noticed yesterday that helped make a rough day a little easier…
This post was a LOT longer than I anticipated. Sorry that it’s so long. I’m writing the end of this while sitting on the couch watching “The Secret Life of Walter Mitty” with wifey. So if it doesn’t make any sense, now you know why…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).