The Beginning of the Bend

Introducing you to the Journey

Photo by Wes Hicks on Unsplash

Welcome to The Beginning of the Bend.
This is where I document what it means to care, to hold, to mend without erasure.
Where I share the journey not of fixing, but of honoring.
These are the notes I’m taking as I walk this bend in our path.

I thought so long about how I wanted to write this one. I must’ve pieced together a million different opening lines. Over and over again, I got stuck, trying to find the “perfect” first words to set the tone and direction of this share. I don’t know why I was so caught up in trying to get it “right.” Life is so predictably unpredictable, messy and chaotic. And I write about my life. Messy is usually how it is.

This past month has been particularly challenging for me, both as an advocate and as a mama. I’ve been navigating the guardianship process, managing the fallout from angry parents who take issue with my disagreement on “profound autism,” and supporting my son through a really rough patch.

This share is more focused on healing my son.

Not the kind of healing that seeks to remove autism from his life, this isn’t about a cure. This is about a different kind of mending. The kind that allows him to live as he is, without constantly feeling like he’s at war with himself. It’s about easing the weight, not erasing the identity.

I’m usually open and vulnerable about how autism has shaped our lives, but I’ve been intentional about protecting the details, how autism actually runs through our bodies, how it moves in and around my children and myself. Most of my audience doesn’t know those specifics, and honestly, I’ve preferred it that way.

But lately, I feel like I’m entering a season that’s calling me to be more direct. To be more intentional about helping families like mine. Too many parents, especially those like me, are more susceptible to accepting labels soaked in struggle and abysmal prognoses because they haven’t seen families like mine navigate this journey with anything other than pain.

The thing that bothered me most about the comments on my take around “profound autism” didn’t come from those who disagreed with me. It came from the ones who did agree, who felt the same way but assumed that I was somehow untouched by struggle. That I had found some secret passage to peace that made everything easier.

I’ve always written for an audience of one: me. I have to be okay with what I put out there. It has to stir something in me first. I don’t write for praise because I know I couldn’t survive the criticism that comes with chasing approval. But this season in my life is aligning in a new way with my advocacy, and I want to find a way to bring others along for the ride.

Still, please don’t place me on a pedestal. I don’t move through these storms with ease. And I’m not grounded in some polished version of “radical acceptance,” not in the way people often say when talking about me or to me.

I’m in a peculiar place:

1. I need guidance.

2. I feel called to document this chapter of our lives to help others, or just to better understand how it’s all unfolding for us.

3. And I need to dispel some long-held assumptions that I am “superhuman.” I’m not.

This creates a tension. I want to share more, but I fiercely protect our story. I’ve said it myself; we don’t owe the world every part of our lives. And that’s true. Still, I feel pulled to peel back the veil just a little, in a way that helps others without exposing my children.

But just because I feel capable of doing this doesn’t mean it’s easy. I have to be intentional, careful about my words, thoughtful with the stories I tell. I’ve talked with my family about this. And I believe this is my advocacy evolving. Growing. Becoming.

That doesn’t mean you’ll suddenly see me listing off symptoms and daily breakdowns. Nah. That’s not how I move. I’ll still be me, guarded, protective. But now, maybe a little more advisory. For years, I’ve leaned into the idea that I don’t need to educate others about autism, and that has served me well. But now, I feel ready to share how I’m helping my children and myself get through the tough stuff. You might not know exactly what we’re facing. But I’ll show you what we’re doing to make it through.

My son just came through a stretch where he wasn’t using his iPad much to communicate, and he’d withdrawn from his Spelling lessons. This happens from time to time. And when he reemerges, there’s usually some regression. So, I’m in recovery mode, helping him rebuild before we move forward again.

This time, I actually know what triggered it. His health. And that’s been the source of a lot of difficulty. Because if you don’t feel well, how can you do well?

I may not share the specifics of his health concerns, but I will share this: I’m actively working on them. I’ve been researching, writing, documenting, and organizing. I even put together a new binder to hold everything.

The Binder

I used:

• A 3-inch, 3-ring binder

• Trading card inserts (for appointment and business cards)

• Sheet protectors (for documents I don’t want to hole punch)

• A hole puncher

• A calendar that fits in the binder

• Loose leaf paper

• Tabbed dividers

Sections include:

Physicians | Therapists | School | Legal Papers | Medical Releases | Insurance | Allergies | Lab Testing | Procedures | Psychiatric Testing | Vaccinations | Photos | Journaling | Emergency Contacts | Medications

I got this idea from a book I skimmed years ago. I noted the binder idea and expanded it. I’m planning to create another one for his brother.

We’re restarting Spelling today. I’ll document how that’s going. He’s also becoming more receptive to using his iPad again, so I’m encouraging that. I’m looking into vision therapy with a developmental optometrist, it may be out of pocket, but I’m committed to exploring every path to help him feel better.

We’re also diving back into dietary changes and possibly supplements. We tried diets in the past, he felt better, but they weren’t sustainable. Today, he eats more, we make more, and I know more. We might not go all-in again, but we’ll take steps. I’ll share what we try.

I’m working on managing my own stress and emotions. Honestly, most days, I struggle. I know that might be hard to believe. People often see my posts and assume I’m always holding it together. But I usually write after the hard days. I think it’s time I start talking more about what I go through, not my son’s challenges, but mine. My grief (and I do have grief), my overwhelm, my reckoning with the inaccessibility of the world, and the unfairness of time.

There’s a lot happening in our lives right now, and I want to share it. I know my son will grow so much during this season. And while I feel some hope, I also feel regret, anger, even, for the time we lost. For the years I didn’t know what I know now. For being lost in systems designed to confuse and break us.

But I’m going to share this journey. All of it.
Mindfully. Carefully.
But fully.

Today is Day One.
And this is Week One.

The bend is gentle. The bend is hard.
We’re still in motion. I’ll be back next week with more pages from the curve.