Kai’s Autism Diagnosis

“She looked her duty courageously in the face and found it a friend – as duty ever is when we meet it frankly.” ― L.M. Montgomery, Anne of Green Gables.

A year ago today, I walked out of the doctor’s office, one hand tightly gripping Kai’s, the other holding a shaking paper with the words “Diagnosis: Autism” written on it.

How does anyone accurately describe the storm of emotions that happen in a moment like that? It has taken me an entire year to become mindful enough of my own turmoil through this process to write a post like this, but I can so distinctly remember those beginning weeks when I was feeling things like:

Disbelief. Our Kai? Our sweet, three year old boy who loves to laugh and be tickled, who lives for cuddles and spontaneous dance sessions? This doesn’t line up with what I think I know about Autism.

Relief. So this is why he doesn’t tell me what he needs. This is why he’d rather line cars up than drive them. This is why he calls things by the shape they are rather than what they are. This is why he scratches when he’s stressed, why he runs in circles when we try something new. This is why parenting has been infinitely harder than I ever thought it could be…

Anger.  At the doctors (Why didn’t they see this sooner?), at my husband (Why aren’t you as obviously upset at this news?), at God (What could possibly be your plan for good in this?), at my family (Why can’t anyone make this less painful?), at the random person walking by who doesn’t have to deal with this overwhelming, life-changing diagnosis (Do you even know how lucky you are?), at most of all at myself for feeling so angry (Why can’t you just be brave and stop taking it out on everyone who cares about you?).

Anxiety. What does this mean for his future? Will he ever have friends? Will he be able to live on his own someday? Heck, will he even be able to use the toilet on his own one day? Will he ever tell me what he is thinking, what he feels inside? Is this as good as it will ever be?

I’ll be the first to admit that I didn’t handle that season well. I felt like a helpless observer, watching the worst of myself slowly leak out but unable to stop it.

I deliberately withheld his diagnosis from my friends for way too long due to some inexplicable feeling of shame (inexplicable because these girls would never, ever make me feel anything but better in a trial like this).

I pushed family away and refused a lot of much-needed help from them, unconsciously believing that only I could really understand Kai and what he needed.

I started obsessing over everything our younger son Rafe did, religiously monitoring his behavior to make sure I didn’t miss any red flags with him. When it was clear he was neuro-typical, I found way too much personal validation watching him advance in his milestones. What I thought was chicken soup for my soul (watching him exceed all his milestones early) was really an idol, nourishing the injury my pride and perfectionism had taken with Kai’s diagnosis.

I numbed it all by throwing myself into “curing” Kai. I spent weeks straight filling out endless paperwork to get him enrolled in the military’s autism program so that we could get him in therapy as soon as possible. I stayed up way too late every night, spending hours researching on the internet the best therapy for him. I bought countless supplements to help heal his gut and immune issues in the hopes it would change his behavior and constantly practiced strategies to help him progress.

By the end of the summer, Kai was receiving applied behavior therapy, speech therapy, and had an IEP and an aid at the local preschool where he was able to socialize…And with all of that taken care of, with all the boxes on my check list taken care of, I crashed emotionally.

I had finally reached the place where things had settled down just enough to make me face the reality of Kai’s diagnosis, and to see that it wasn’t going to go away just because I’d finished all the ‘tasks’ on my ‘Autism check list.’

A year later, I definitely can’t say I have it all figured out. Most of those questions from the first few weeks are still unanswered, and in the really frustrating or disappointing moments that anger and anxiety can still rise up like a wildfire if I let my heart go unchecked.

But through this last year there has been so much grace and so much growth that came, not just for Kai, but also for me.

It’s a painful and slow process, but God has been slowly pulling that perfectionist spirit, that desperate need for control from my vice-grip on it. He has been showing me beauty in the broken moments and He is showing me how to rise up to meet them. He has been calling me to a greater dependence then I ever thought possible in this life. The harder things get, the more achingly lovely the sweet moments seem to be.

And as for Kai, he is by far the most beautiful human being I have ever known. His sweet spirit has a purity to it that I’ve never seen the likes of. His laugh hits crazy heights on the joy scale. He is thriving in his therapies and blessing us on the daily with giant hugs, “I love you”s and way more verbal expression of his needs.

So many things are still so very, very hard (I’m looking at you, Potty Training), and we have a long road ahead of us on this Autism journey, but we believe God has big plans for our wild little joy bringer and we are immeasurably grateful to all of you who have come along side of us through this and gone out of your way to include Kai in ways we could never manage to on our own. Thanks for following our journey!

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