So today marks 5 years since Jonah was “officially” diagnosed with Autism. I made this video a year after that.
I haven’t watched it in a LONG time.
It’s interesting comparing where I was at even when I made this video to where I am now.
I don’t think I’m really that much different as a person, but I think I AM a different PARENT.
What has changed in me in the last 5 years?
Well? A lot.
And most of that is just experiencing this “Ausome life.”
One thing I forced myself to do is to QUIT COMPARING JOURNEYS.
I HAD to quit making the comparisons, checking the benchmarks, or the “age-appropriateness” of things Jonah was doing.
No two people are the same. No two stories are the same. Even with Autism.
I used to look at “autism” differently.
I used to label Jonah’s “flavor” of autism as “severe” or as “level 3” (the DSM-5 uses the 1-3 severity scale based on required support).
It is in Jonah’s “official” diagnosis. (Level 3- ASD)
But I don’t really use “level 3” or “severe” or similar terms anymore to describe Jojo.
Because, how do you define “severe” in regards to autism?
First you have to compare your “autism journey” with other autism journeys to see what typical “support” looks like and then gauge whether your child requires THAT amount of support, or more substantial support…. or A LOT more substantial support.
(That is seriously how they gauge severity ratings of “Level 1, Level 2, and Level 3”)
So before, instead of seeing “JONAH,” I used to see my ‘level 3-severely-autistic-son.’…
…as if that made him a “less than.”
And I would catch myself envying other parents and laughing at their parenting “problems.”
Like “I WISH I only had ‘their problems.’”
Which led to a subliminal competition with every other “autism parent” I encountered over “who has it worse…”
I mean all I could see were deficiencies.
If someone said “severe,” I would think “how severe?” and what my brain would imply would be “But do they have it as ‘bad’ as us?”
And it would spiral.
Because there are ALWAYS parents out there who would love to “just have our problems.” No matter HOW difficult.
You see, the problem wasn’t with Jonah.
The problem was with ME.
The problem was with how I saw him on a basic, fundamental level.
I couldn’t see “potential.”
I couldn’t see “joy,” or “happiness,” or even “hope.”
I saw disappointment.
I saw MY hopes and dreams for him dwindling. I saw MY preconceived notion of parenthood disappearing. I saw how hard it would be for ME to parent him.
When I thought about Jonah and autism, all I could think about was how it would negatively effect ME.
And. How. Selfish. Is. That?!
It absolutely disgusted me.
Jonah deserved…. DESERVES better.
How I see my child is how he will see himself.
And I want him to like… to LOVE what he sees.
So I had to make changes.
I had to change the way I thought. I had to change the way I saw “autism” in my son. I had to really take the time to understand who my son truly IS.
Who is he?
Jonah is freaking AUSOME.
He is a fun-loving firecracker, who loves to learn, is driven by a fierce sense of independence, loves anything related to water and animals, loves to cook, to draw, to paint, or to make ANYTHING with his hands. He loves to be outside in nature going for hikes or beach combing or hanging out with geese.
He is a practical jokester and has his Grandpas’ (both) senses of humor and loves to make us laugh.
He has helped to shape me as a parent.
I am an AUSOME parent and we have an AUSOME life.
It’s not always easy. Sometimes it is a huge struggle. But so is life.
It’s a challenge.
And how do you handle challenges?
One day at a time. One step at a time.
We do the best we can with what we have, where we are and we focus on making today, a better day than yesterday.
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