Katie Feavel

February 04, 2019

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Posted in featured|Front


Thinking all the thinks

My girl is three today.

I am, admittedly, a bit of a disaster.

Teetering on a tightrope between relief as she becomes older and more self-sufficient, and a deep sense of fear for what this next stage of life will throw at her.

I felt guilty writing this. Like it was inappropriate, somehow, to not focus only on the positive milestones reached. But I'm just not in that headspace today.

THREE is a big number in the autism world.

It's the closing of the most influential early intervention window. It's when the conversation shifts from hopeful suppositions of "catching up" to a discussion of how to support a child with a disability long term.

I don't know who will read this, but part of me wishes that I could reach every other autism mom out there and just tell them it's okay to hurt, to feel this thing.

Autism parents seem to be fed two different messages: autism is either seen as something to be cured or as something to be passively accepted.

Parents are told we can "heal" our autistic children, which I personally feel is damaging and unsettling and frankly, in many cases, impossible.

We spent a year and a half chasing this philosophy for Maggie; we tapped into functional medicine, homeopathy and neuromovement on top of all the traditional therapies.

And I wouldn't change any of it, because we have helped her, but we can't fix this. We can't make it go away.

(To be clear, autistic presentations may be accompanied by or the result of other conditions, called "comorbidities," but in those cases, autism is not the primary culprit and addressing the primary condition can make it appear as if autism itself has been cured.)

For children like Maggie, autism is both a primary and pervasive condition.

It's here to stay and influences every aspect of her development.

I'll never forget the moment that this realization hit home, sitting in the car with my husband after a big neuro appointment that gave us absolutely nothing.

"What do I do now?" I asked him. "Who am I to her if I can't fix this?" 

"Now... now you just be her mom."

What he said was simple, but coming to terms with it was not.

Finding a way to fix the problem had been my coping mechanism.

I'd spent so much time racing that under-age-three early intervention clock and delving into every possible solution... that I didn't know how to just be a mother to my daughter.

As parents, we're either being told that we need to cure something incurable OR that there's nothing wrong with our autistic children. That they are just pleasantly different.

That having an autistic child is like taking some scenic and unexpected trip.

But isn't this equally damaging? It invalidates our very human need to grieve and to process the heavy emotions that go along with being the parent of an autistic child.

People tell you to focus on joy and progress.

And like 99% of the time, yes, absolutely, those are things we should be doing.

And at first it even seems easy enough. You're new to the game, you're just starting to learn what autism means for your child.

You're focused on accessing and understanding therapies. And you have so much hope for these endeavours.

But then, somewhere along this route, you settle into the permanence of your child's situation. You realize that this is the reality for them, that the world is and will continue to be a noisy, torturous place.

Your heart learns that you can't save your child from this thing that so encumbers them.

Most of what I share on social media is positive. I take thousands of photos to get a few "good" shots... the ones where her eyes appear most open and her mouth isn't hanging slack from low muscle tone.

I share the videos of her dancing and laughing, not the ones of her falling or thrashing, screaming and taking swings at anybody around her or smacking herself in the face.

I've written dozens of posts just like this... and have kept them to myself or deleted them all together once they're done.

But I'm quickly coming to the realization that that isn't fair to other autism parents -- moms who may also be hunkering down on the floor with their dysregulated child who's lost to the world most nights of the week -- feeling utterly alone in that battle.

I want my daughter to be perceived for the best of what she is.

I want the world to see her in those clear moments, in all her sass and silliness.

And really, those are the moments I want to focus on. But I also don't want other autism moms to feel like they're on an island by themselves.

Being the parent of an autistic child is exceedingly lonely.

Seeing your five-year-old behave with an emotional maturity most adults lack because of what he's been through having an autistic sibling...

Realizing your two-month-old is more expressive, engaged and regulated than your daughter was at two years...

Feeling a strange, but profound gratitude and indebtedness to them both because you know there will be a time when you're gone and the torch of care will pass to these brothers...

Simultaneously mourning that future for your boys, and praying this experience manifests in them as resilience rather than resentment...

This is not a place where others will readily join you.  

When somebody says they love your girl's low raspy voice and they chuckle, entertained... 

But you know that it means she's dysregulated, that she can't control the strength of her own diaphragm...

How you wish they could hear that beautiful little sing-song birdie voice that's really hers and comes out every so often when she's having a good day.

But very few people will meet you in that conversation, so you don't even try.  

The things you don't feel you can talk about, the harm your child causes to herself or others, the ugliness of the battles with hygiene and stimming... 

So you keep it to yourself and you learn to exist in that space alone, except for the few angels in your life who selflessly trudge through the depths of that shit with you.

My child is beautiful, her mind and her heart are fascinating and wondrous.

Her autism is rarely any of those things.

I rejoice in her triumphs just as I mourn her losses. I hurt for her, as she experiences pain from simply existing in this world.

Autism is no pleasant detour. It's agonizing and pervasive.

Every moment of life is tinged by it, every step of progress laced with what is lacking. Every decision made is limited by this inescapable presence.

It reaches your friendships, your career path, your marriage, your other children, the very core of your identity. But if there's one thing I could communicate to other autism parents, it would be this:

It's okay to grieve this thing that hurts your child. Just don't let yourself stay in that place for too long.

Find joy where there is light, fight tirelessly for progress. You owe yourself and your child nothing less.

But know you're not wrong to hurt when they hurt.

One of the most impactful things we can do to help our autistic children is to empathize with them, to join them where they are.

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