A Mother's Journey with Autism: Navigating Grief, Acceptance, and Growth

This is the most vulnerable entry I've ever shared publicly.

It's a journal entry from November 2023 about being the mother of an autistic child.

I don't typically get uncomfortable sharing my grief, pain, fears, worries, and sadness…but this I am hypersensitive to sharing.

The internet can be like the wild wild west- anything goes, and the number of haters and trolls out there is part of the reason I don't share a lot of my more personal stories.

Yes, this is about not only me but also my son.

And just like Brene Brown says, it's time to step into the arena.

It's time to be brave.

It’s time to share the growth.

Last week, I received a message from someone about how validating, helpful, and needed my words about being an autistic mom have been for her.

And that she finally felt understood and was able to breathe.

Connection.

That's my why: to normalize the human experience, to encourage other people to show up as themselves, and to know they aren't alone.

I’ve shared before like when I wrote about What Every Mom Needs To Hear After An Autism Diagnosis or when I first introduced myself on this post as an autism mom.

So, with that being my deepest driver, I am deciding to share.

The text ends suddenly without any conclusion, so yesterday, six months later, I finished it with new thoughts—you'll see the date change within the story.

Jarrod and I also just released part 1 of a 2 part episode about our journey with Autism. Which you can find here: Navigating Autism: Our Journey Raising A Neurodiverse Child.

It talks about pre-diagnosis, diagnosis, grief, and how we came together to best support Jake and decide on therapies. The second episode, which will come out the following week, will discuss the supports and therapies we set up for him, among other things. We provide some amazing resources that have been so helpful, so make sure to read to the end of this blog post.

So, with all that said, jump in a time machine with me and join me in my walk-in closet in November 2023.

Grief Bubbles

Sunday, November 12th 12:59pm

Sometimes, I feel sad and grief about having a child on the spectrum.

I think it’s because he's my first, I feel like I'm missing out on things because I don't know better.

Although we struggle with many of the same things that other families struggle with when raising a toddler, we have one extra piece.

An Autistic child.

I didn't understand how different he was until my daughter started pointing to books and asked me to read them while saying "book" at 13 months old.

I didn't understand how different he was until my daughter started waving at strangers and crawling towards people at the park.

I didn't understand how different he was until I traded voice notes with friends, and they would tell me what their children were up to, whether they were the same age or a year younger.

This time, I'm sad because of potty training. Because it's not just potty training.

It's the fact that I can't have a conversation with him about it.

The loneliest feeling in the world is being a parent of a special needs child...

That's what I thought about while lying on the floor of my closet, crying after another grief bubble came to visit me.

Sometimes, I'm able to pop the bubbles faster than others.

Sometimes, the bubbles stay with me for days.

When Jake was diagnosed in March 2022, I went underground for about a year and a half.

On the outside, I looked like a force.

Advocating for every therapy possible. Employing the best of the very best of therapists. Attending open houses, emailing teachers, sharing my thoughts on neurodiversity.

But the truth is I was deeply depressed. I was in mourning.

Mourning over the child, I thought we would have. Mourning over the relationship I had envisioned with my son. Mourning over what the future could look like.

It's important to note that mourning and joy can coexist, and while I was experiencing a reframe of my life, I also experienced so much joy and transformation.

Which also isn't an easy thing.

Navigating Grief and Finding Acceptance

I am not the same person I was before March 2022.

I'm still figuring myself out, and most importantly, I've realized that I must accept myself in order to accept Jake just as Jake is.

I'm working through a lot of anxiety that manifests around having a child who is different.

Thoughts such as:

Will he ever have friends?
Will we ever be able to have a real conversation?
Will he live independently?
How does our focus on Jake impact Sydney?
If we die, who will advocate for him like we do?
If we die, who will understand his needs like we do?

The list goes on. I have such trouble sleeping that I sit in the shower at 1 a.m., trying to wash away thoughts, fears, and anxieties.

Grief bubbles, or I should call them bombs, as they blow up everything in my current world, and sometimes they just feel like they come out of the blue.

A few weeks ago, I was at dinner with friends, and they were all talking about their toddlers and the funny things they say or ask their parents. I had to text a few moms with kids on the spectrum about the pain I was feeling. But that pinch quickly floated away.

Last week, a friend of mine's child started on a journey that Jake has been on for a while, and it came much easier to this person than it did for Jake. Of course, I was envious, but it wasn't until the mom shared over and over again about their experience and conversations they were having with their child that it really gutted me.

By society's standards, my child is behind.

When we are in our home bubble, I never think that. Once we leave the house, I just have more things to consider.

I spent pretty much all of Sunday picking fights with my husband or crying in my closet in between painting my grandfather clock black.

I'm not always in this state. Sometimes, I can push through; sometimes, it takes me longer.

This weekend is one of those.

My Personal Awakening

Sunday, May 19th, 1:45pm

I wrote an entry on a Sunday six months ago, around the same time I'm writing the updated version.

This entry was written in my walk-in closet, aka my magic closet.

I was lying on the floor in deep despair.

Today, I'm sitting in a chair, writing about the same subject with an evolved perspective.

Jarrod asked me the other day if I still write in my closet, as this is where my personal development journey began.

"No, I work in the podcast studio now."

I was intentional about the "work" I did in the magic closet.

The space was just mine.

It was a safe area for me to unravel.

I did a lot of my healing in that room.

I never mixed work work with personal work in that place.

Therapy, writing, reading, reflecting — that's what the setup was used for.

I've grown a lot since November, and now I choose to be in the room where the monetizable work happens.

The original entry started with the following sentences:

Sometimes I feel sad and grief about having a child on the spectrum.

I also think that because he's my first, I feel like I'm missing out on things because I don't know any better.

Now, I'm going to rewrite it.

Sometimes, I feel sad and grief about having a child on the spectrum.

It's because of the belief system I have about myself.

The sadness I feel has nothing to do with Jake.

It has everything to do with me.

I grew up neurodiverse, and the message I internalized about being ADHD was that I was inadequate.

Being different to me meant that I wasn't good enough.

So, thank god for my son.

He saved my life.

He brought me back to my root.

Just like Jake, I am different.

Something I've tried to avoid my entire life.

Every single day.

I have tried to be the same.

The same as the popular girls, the girls with all the friends, the girls that the boys liked, the girls that their parents loved, the girls who act and behave like girls.

This past weekend, we went to a birthday party.

And I could not relax.

I couldn't relax because I wore white jeans that showed the area where I carried my babies, and I still haven't lost 20 months postpartum.

I couldn't relax because my child was flapping his hands in the pool and not acknowledging anyone around him.

I was so self-conscious that it greyed the entire day.

And Jake could have cared less- he had a day full of fun and sunshine.

It's me who I grieve…not Jake.

It pains me to think about how many years have gone by that I have not done the things I know I'm capable of and things I want to do because of my fear of being seen.

Jarrod and I made a big decision this past week.

We are sending Jake to mainstream private pre-k in the fall.

In order to do this, we have to remove him from the safety net of his ABA center, which he's been at for two years.

I am so nervous to do this.

Will it work for him?

Will he get hurt?

Will they include him?

While we were at the party, we were all over him.

Holding his hand while we were walking around, worried that he would elope.

Following him while he was exploring.

Nervous and concerned, he hung up about his next move.

We didn't even give him a chance to be independent.

We didn't even Give. Him. a. Chance.

Over the past several months, Jake has shown tremendous growth— things that I wasn't sure would ever happen are happening.

Like him telling me a bagel is done or to skip a song on Spotify.

He's becoming aware and interested in his peers.

He's following more directions.

He's demonstrating advanced skills in reading, writing, and math.

Playing with his sister.

Taking turns.

He's truly remarkable.

Oh ya, and potty training? We are still in it.

But he now poops on the potty by himself without prompting.

The little potty is in his room, and yeah, maybe some kids have already graduated from this, but we will get there.

6 months ago, I didn't have rice theory.

I only received that awareness in early March.

Rice theory is the idea that just because he doesn't or won't doesn't mean he can't and to always presume competence.

It came from a dinner we had as a family while at Disney World, during which Jake ate rice that he had never eaten before without us encouraging him to do so.

He constantly surprises us.

And that actually bums me out.

Because that means we do still have biases about Autism and how the label reads: limited.

But I can tell you this.

I see it less than I did before.

I have more faith and trust than I did 2 1/2 years ago.

And that's not because of Jake and his growth…

It's because of mine.

Resource List:

Regional Center California

Babies Can't Wait - Georgia Developmental Services

Neurodiversity Affirming DSM Diagnosis Criteria