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KC & the Sunshine's avatar

Woke up early this morning still stinging from the betrayal. Not betrayal of me but that of Luke.

I’m not an overly religious person. Pretty much estranged from the two religious cultures of my childhood due to matters of dissonance and practicality, from severely behavioral autism caregiving for 2 decades.

The irony of today being the celebration of Easter, commemorating what took place after the most significant betrayal in biblical history; hadn’t totally escaped me.

I hadn’t planned on anything. Last night I’d set out an Easter basket with candy because my sweet 6’5”, 21 year old son still believes in the Easter Bunny.

And that’s okay. God willing, I will still be the Easter Bunny & Santa Claus when I’m 70, if that’s what makes him happy.

I woke up early remembering last Easter when he was in still undiagnosed, severe autism-catatonia crisis & didn’t understand his Easter basket.

That day.

I didn’t see my elderly father, my other kids, my grandchildren. He couldn’t get his candy in his own mouth. Three meltdowns in by 3pm & I had chunks of bleeding flesh hanging off my arms, could barely catch my breath, a dresser reduced to matchsticks, great big tears rolling down his poor hot, red face.

Utter agony and destruction.

Yes, destroyed. His body & spirit, my heart, my house, no family, no community; just his pain, terror & rage.

This morning. I remembered.

My elderly father was going to church alone. No plans made by me because ptsd has my brain in combat mode. Forgetting. That Luke was responding to treatment. Like a phoenix from the ashes. So maybe? Just maybe?

I ran downstairs to get him up from his dad’s room where he still sleeps for safety. I’d just decided. I was taking him to church by myself to see Grandpa. Taking a huge chance.

My son. He sang while reading the lyrics from a hymnal. He said “gorgeous actually” when I asked him how mass was. 😭

I couldn’t keep the tears from my eyes when the Lord’s Prayer began … “Our Father, who art in Heaven …”

Because even though I am not overly religious. There were times last year when I held him & started reciting it out loud because I didn’t know what else to do. I would be wearing my helmet, lying in a pile of debris, holding his stiff body and just start reciting it in a loud voice. Until he’d start screaming over me.

And nothing would happen. No guardian angels or bolts from the blue. But I’d start it over again. Trying to pray his pain away.

Today wasn’t just a “win” it was a miracle. He rose. Coincidentally on the day celebrating another rising after betrayal. My son rose on his own terms.

And I thought about this betrayal. Not only by the media and the neurodiversity actors but by his own community.

Don’t tell me it didn’t happen. It happened ONLY motivated by bias.

The same mom who last week was posting about how your family was destroyed because your husband left you to scrape the feces off the walls, while starting a new life with someone else’s kids who weren’t severely autistic; is now saying “how dare he say autism is destroying families”.

Yeah I saw that.

I saw the mom who wrote about how she had to terminate her own parental rights when her son hit puberty to protect herself from the violence, started abusing drugs & how it “destroyed” her family; turn around and say “Autism didn’t destroy anything”.

Saw that too. Hypocrites.

Not just those two examples either. The amount of despair I see in the severe autism support groups would make a normal person’s head spin.

You’re only saying that now because of who said it, not because it isn’t true.

And you know what that does?

It doesn’t just minimize their struggles. It doesn’t just erase awareness that took decades to build. It doesn’t just invalidate their truth, all of which would be bad enough on it’s own.

No. Not only did you do that but you made their triumphs look so much smaller. You invalidated their risings.

Let’s face it, there were probably thousands of 21 year olds that saw their grandpa at church today. Maybe hundreds of thousands who sang from a hymnal this morning. Not really earth shattering in the big scope of things.

What made this such an accomplishment for Luke; was where he had to come from to get here. It’s the fact that he could regress out of catatonia remission tonight and be dead within days. It’s that he’s 21 years old and this has never happened quite like this before & may not ever happen again.

His severe autism has been devastating. It has been destroying. That’s what makes his successes so much sweeter. What makes him the strongest person I know. It’s so good because it’s been so bad. Because severe autism can be really, really hard & no child or adult deserves the amount of suffering I have seen him endure.

Don’t take that away from him. Don’t betray him like that. Don’t do that to your own families.

You don’t like who said it, despite that I’ve been watching you all say it yourself for years. And that’s wrong.

Luke’s little wins today. Only they’re huge because of how far he has to come to get here. He was so happy. I don’t care what else he accomplishes in this life, happiness is everything & it can be damn hard to come by, don’t tell me I’m wrong if you’ve lived this life. ****PASTED from another Mom’s page.

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Rachel's avatar

It’s like being outraged at the suggestion that pregnant women shouldn’t take thalidomide just because some of the babies affected grew up to be wonderful, inspirational people

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