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Now Reading: What “Progress” Looks Like in My Autism Household

What “Progress” Looks Like in My Autism Household

What

 

PROGRESS

It used to be a loaded word to me sometimes.

How’s he doing?  Has he made any progress over the past year?

People would ask me these questions over the years and I wouldn’t know what to say.

I would review his IEP goals at the end of the year with the teachers notes and feel bad / guilty / helpless at his lack of progress.

At some point along the way  I stopped worrying about progress or hoping for progress….

Then I started doing the speaking engagements and talking about my life with my son and talking about taking him places and doing things with him.

And almost every time some mom or dad would ask me during the Q&A something to the effect of “does it get easier? my son is literally bouncing off the walls all day long”

I would ask “how old is your son?”

The answer was always between 5-8 years old.

My response back to them is usually something to the effect of “yep, the king was BONKERS when he was that age”

And that made me realize, hey he’s made a TON of progress, in fact I have old blog posts to prove it!

Basically when the king was younger he was the Tazmanian Devil and you couldn’t poop with the door closed when the other parent wasn’t home. And forget about showering. Do you know how much damage he could do while I took a 5 minute shower?

I wrote a blog post back in 2011 when he was 8 called “50 Things Overheard at My house on a typical weekend” and it was madness from the minute he woke up in the morning (which back then was early) til the minute he went to bed at night (which back then was late) and this was when both of us were home.

Here’s the entire list for your amusement:

“he’s up”
“what time is it?”
“where is he?”
“he’s in the bathroom”


“I got him”
“he’s in the kitchen”
“did he eat breakfast?”
“is he with you?”
“block off the dining room”
“he’s playing with the lamp”


“turn off the lamp”
“where are his socks?”
“he’s in the office”
“he’s with me”
“he’s heading upstairs”
“he’s heading downstairs”
“he’s heading your way”
“you got him?”
“he climbed over the gate”
“did you give him his pills?
“when was the last time you took him to the potty?”
“I think he’s wet”
“are we out of pull-ups?”
“he wants to go upstairs”
“he wants to go downstairs”
“it’s my turn to nap”
“he wants to go out”
“I’m bringing him in the backyard”
“I gave him his pills”
“did he have lunch?”
“how many nuggets should i make?”
“where are his sneakers?”
“any idea where the remote is?”
“he wants to watch tv”
“I think he’s hungry”
“he wants popcorn”
“he wants cheerios”
“did he poop today?”
“I think his stomach might be bothering him”
“what were his poops like?”
“should he get a senokot tonight?”
“maybe I’ll give him a suppository”
“is it melatonin time?”
“I’m bringing him upstairs”
“he’s finally asleep”
“did you eat dinner yet?”
“what’s in the dvr for us to watch?”
“love you”

Fast forward 7 years to 2018 and now I can proudly say that things are much easier these days.

I can poop with the door closed.

I can take a quick shower.

That’s progress in my house!

It’s not a goal on his IEP. “GOAL #7 Will be calm enough that dad can take a shower” but that’s progress in our world.

While on paper he hasn’t made a ton of progress, he’s still non-verbal, he’s still in the “low functioning class” he has matured in other ways.

He’s just more comfortable in his own skin these days

And that’s what I tell the parents of the 5-8 year olds when they ask me.  I say “it does get easier

I tell them that there was a time when the concept of him sitting on the couch and watching tv for 30 minutes straight was something I prayed for. He just wouldn’t sit still!

Now he is a lazy ass teenager who will plop himself on the couch and watch a full 2 hour movie.

Now that’s progress!!

THE END

 


Written by

Frank 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” :-).


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2 People Replies to “What “Progress” Looks Like in My Autism Household”

  1. My husband and I talk about this. It’s so easy to just see the immediate moment, and so important to recognize how our daughter has grown with time. She’s a couple of years older, she’s had more practice, she has more emotional resilience–she’s absolutely not where she was a few years ago. And in a few years from now, she’ll be in a different place. I can’t wait to see how she grows and learns.

  2. Elizabeth

    Thanks for this post Frank. I heard a lot of familiar things. 🙂 I’ve learned with my son–the checked or unchecked goals on his IEP don’t even begin to tell the story about him.