The Path to Autism

I’ve been sitting here staring at this blank page for a while now. There is so much that I want to say; but sometimes, it’s almost too much… so many words and feelings all bleeding together, into one collective mess. How do I even know where to start?

I’m not sure why, but I’ve had specific moments on my mind lately. Not on purpose… they just keep popping up repeatedly to say, ‘hello’ and in turn, get my tumultuous heart kind of rolling down that same old beaten path, again.

The path, that lead us to autism.

Everyone has those moments, the ones you can remember everything about- exactly where you were, who you were with, how you felt.

For my generation, I believe most of us can agree that 9/11 was one of those moments. I can tell you what classroom I was in, who my teacher was, who I was sitting beside, and the fear that I felt as I realized for the first time ever, that just because war typically happened far removed from my reality, it didn’t make it any less real.

I think, in hindsight, that moment stands out to me, personally, because without realizing it at the time, it was one of those moments where down to the pit of my being, I just knew that something had just changed… and things would never be the same again.

There are other things, moments from my personal life that I should remember in that great of detail. But I don’t.

I don’t remember my first kiss. Isn’t that horrible? I should, but I don’t. Not at all.

I have very vague recollections about my engagement (please don’t tell my husband haha!). I mean, I can tell you where we ate for dinner, where we were standing, and the gist of the whole thing, but I don’t really remember it.

But there are three moments in Wyatt’s journey that I’ll never forget.

First, the moment I knew something was wrong.

Second, the moment I allowed myself to accept that inevitable possibility.

And, finally, the moment we received an actual diagnosis.

Those are three moments that I’ll never forget because they are etched into my soul; I felt each one of them in the deepest parts of my heart and their echos remain.

The moment I knew.

Now, there were a lot of moments over the three years leading up to this one that already had my mind wondering. (early signs of autism will have a blog of it’s own!) But wondering and knowing, are two completely different things.

I wondered why my son made crazy movements with his head. Self soothing himself at night by rubbing his head on the bed back and forth, back and forth, over and over and over again - to the point that it burnt his hair off. Literally, he burned it right off and smelled as though someone had taken a torch to his little head.

I wondered why my son just couldn’t seem to progress in his speech the way our friend’s children did. I wondered why he was so unable to get the words out. At three years old, I was still translating for him to everyone, and heaven forbid, the moments that even I couldn’t figure out what he was trying to communicate then we were all at a loss.

I wondered why my son severely choked, often, and seemed unable to grow out of that. Did he have a seriously strong gag reflex? The episodes were so severe and haunting, to this day if I hear a child anywhere cough strangely, I feel my heart drop and my head spins right around to search and make sure everything is okay. They were so severe that I’m scarred for life and also to this day, am terrified to let my children eat unattended. I freak out when they steal snacks from the pantry while I’m in the shower not because I’m mad but because they could have choked and I wouldn’t have been there to save them.

To add insult to injury, everyone brushed off my worries.

“He’s just a boy, boys do things slower than girls!”

“He’ll talk when he’s ready.” “He’ll be fine.”

“It’s normal for boys to be slower at developmental milestones.”

Can I just tell y’all how hard it is to:

1. feel in your heart that something is WRONG

2. actually build up the courage to vocalize those fears, only to have everyone around you respond by basically telling you that you’re being dramatic? That your fears are no big deal, or probably made up, so you finally start to wonder if in fact, you are crazy?!

It sucks.

So I tried to shake off everything. I mean, Wyatt was my first child… I had no previous parental experience or children to compare him to. So maybe I was completely wrong and they were all right. Maybe I was just too worried about him.

I got “helicopter” parent often. But I couldn’t explain why I felt like he needed it. He needed extra eyes and protection, even from himself, but I couldn’t explain why.

Still, I wondered. And then when my wondering collided with worry, I researched.

I also learned to keep my fears to myself.

Somewhere along this lonely little road of investigation, the word autism came up. That terrified me. I honestly had no idea what autism really was, but the realization that I could be very close to an answer to what I was searching for and that it was something real, part of an actual epidemic, that was terrifying.

When I finally got the courage to bring it up to close family members, my fears were, again, shot down and discredited. I was told to stop worrying and let it go. He was fine.

But he wasn’t! Why couldn’t they see what I saw?

I was left feeling like a crazy failure; something just felt off but I couldn’t put my finger on it and when I’d sought counsel and wisdom, I’d just about been laughed out of the family.

Then it happened.

All the previous (and countless other little things) had taken place over the past three years had me wondering and searching but this was the day of knowing. Not long after we’d moved to Simpsonville, I was making a grocery store run with my kiddos in tow.

Balancing two children was still new to me; Emme was just a baby and I remember thinking we could tackle the grocery store together. It was cold outside and we had on jackets, so it must have been when Emme was about 3 or 4 months old …

I’ll never forget carrying her in that heavy carrier (why are those things so stinking heavy!?) in the nook of one arm and holding little soon to be three year old Wyatt’s hand with the other. We were walking across the parking lot headed into the store and that’s when the wind kicked up.

A large gust blew right into his face.

And that was it.

Have you ever seen a small child have a panic attack? If you haven’t, I hope you never do. There is something almost unexplainably heartbreaking about seeing absolute terror starting back at you when you look into your child’s eyes. I think the worst part was (and is) knowing that I couldn’t do anything about it. Nothing but hold him, try to comfort him, keep him from hurting himself and help him ride it out.

That’s the moment I’ll never forget. That’s the moment I KNEW that something was wrong.

Standing there, in the cold, balancing a new baby in a carrier in my right arm, while trying to restrain/hold on to my wailing, flailing, terrified three year old in the other. That was the moment I finally stopped wondering, and I just knew that something was off; because, this was not typical.

Typical children don’t have full blown panic attacks over the wind.

For a while after this, I remained completely unmoving in my attempts to pursue action. I was paralyzed by fear and swimming in denial.

The moment I allowed myself to accept that inevitable possibility.

Oh gosh this moment. I hate this one. Really, of all of them… I am pretty sure this is the worst. And I hope that I can explain it to you well enough that you don’t think I am the worst mother in the entire world.

I was here, in our bedroom, on an otherwise lovely afternoon- sunny, and my babies were napping.

God bless those naps. I’d almost forgotten about them. Wow, that used to happen! I used to get a mini break each day. Oh boy I miss those breaks.

I digress- I was finally catching up with my best friend; I don’t remember the exact dialogue but I can guarantee you we talked about something fun (hair/workouts/girl stuff), important kid issues like vaccines or what our newest life saving mom gadget was, our husbands, and then somewhere along that conversation she asked me about Wyatt.

Bless her heart; she really is the one person who could blackmail me to high heaven if she wanted to… I entrust her (or burden her, depending on how you want to look at it) with everything, so even though my family had been so unreceptive or un-acknowledging of my fears, I voiced them that day to her.

I told her everything.

I remember being so afraid to, but I just had to have someone hear me. To really hear me. Maybe, if I put it all out there, lay out all of my cards, even I would see how silly and impossible this was- that I’d been overly worried this whole time for nothing.

So I told her.

She listened while I rambled about all these things going on with him, everything I’d read, how it all seemed to point to one thing- autism, and then I told her about the incident at the store.

That’s when the reality of it all slapped me in the face.

I lost it and the tears started pouring because at that moment, past the wondering and through the searching and my inability to move forward because I simply couldn’t let myself… accept the fact that something was wrong. I knew in that moment that I’d been right all along, something wasn’t typical, and all the dreams I’d ever had for Wyatt would now be greatly changed. I knew that Wyatt was autistic.

I’d been dancing around it for so long, pretending that if maybe I stopped fanning the flame of my fears, he would magically outgrow these quirks and I’d see how silly I’d been. But know I knew, I had to grab his little hand and we had to venture onto a different road entirely.

I was terrified of where this path would take us.

The moment we received the actual diagnosis.

Fast forward another year and a half.

I’d immediately voiced my autism concerns to our pediatrician (who also tried to convince me boys are slower than girls and basically gave us the evaluation referral to hush me up) and started the ball rolling on an evaluation. But when I finally received the paperwork that I had to fill out, sign and submit before we could even book the evaluation, something seemed off.

I read everything they wanted me to sign, completely (am I the only person who does this?) and there was something about it that I was completely uncool with. I did not want to give the county access to all of Wyatt’s information, all of it, until he was 18 years old, when at that point we could then submit a written request to make it all private again. What? The way they had it written every time that child sneezed they would have known about it and slapped it on his public record and that made me angry.

I read that page so many times and had Jordan read it as well. Surely I was reading this wrong. It just made me so uncomfortable and seemed so unnecessary. So because of that one page, that one last signature that I wasn’t comfortable giving, we decided not to proceed with the evaluation.

We were on our own.

I set out to get my hands on as much therapy and resources and I was able. I felt confident that I could work hard enough to secure him with everything he needed.

I had no idea what I was getting myself into.

I was able to secure his speech therapy first. That was an exciting victory but also a big burden on our bank account; I quickly realized that having a child with extra needs isn’t only harder in every other way, but also financially. Kind of like the final insult to injury.

And that was just one therapy… he still needed others. We had to completely restructure our budget and habits. But we did this happily, because nothing was coming before our boy and his best interest and we were so thankful for the opportunity to get him the therapy he needed to grow.

I had the hardest time, however, securing the therapy I thought he needed most. Occupational therapy. Our insurance team would just not budge on this one. I had referrals from all of his doctors, teachers, and even other therapists - showing on paper that we had numerous professionals agreeing that he needed this, but they wouldn’t give us anything without an official diagnosis.

We couldn’t afford to do it on our own. Even the copay was going to be hard, but 100% was going to take every penny we had.

We hit a wall. I didn’t want to proceed with the evaluation because of the paperwork and we couldn’t get the therapy he needed without it.

After some more blatant urging from his pre-school, we decided to re-visit the evaluation. Out of pocket, from a private company, we were looking at around quite the bill for an evaluation that we could book within the next 3-4 months.

Conversely, if we went through the hospital system, who’s wait list (for just an evaluation mind you) was a minimum of 9-12 months for his current age category to book an evaluation, our insurance would at least help us out with that bill. So we decided to wait it out.

So we took our number and stood in line. I tried getting us on a cancellation list but was told that didn’t exist. So we waited and we waited; it had just been over nine months when I finally got the call this past spring. They could book him for an evaluation in the summer. June!?

More waiting.

Finally the day came. The days actually. The evaluation consisted of two long sessions in addition to all of the referrals, questionnaires and other items we had to prep and bring with us.

Then we waited two weeks to receive the results.

I’ll never forget how anxious I was that day. Jordan met me at the office and we waited for them to call us back. I knew that whatever we were about to find out was going to change everything.

I’ve had people ask me if I was nervous to get the diagnosis. I think in hindsight, all that I’d gone through already was good preparation for me. It’d put me in the spot where I wanted, I needed, an answer. I had to know, what was going on? Or was I crazy?

I don’t remember a lot about that appointment, I just wanted her to hurry up and get to the end and tell us- tell me- what is wrong with my child?

Finally, she told us. She would be giving Wyatt a total of 3 Diagnosis.

Three? My heart paused and I held my breath.

Autism (ASD)

Mild Developmental Delay

and lastly, Anxiety

I remember fighting back tears as we heard the confirmation come out of her mouth. I was fighting to keep it together until the appointment was over. Jordan and I thanked the doctor, hugged each other and parted ways. He had to immediately go back to the office and I had to go home to relieve our babysitter.

I got in the car and began the drive home. I was overwhelmed with emotions. I dialed my mother.

As soon as I heard her voice, I lost it.

The tears poured down like crazy and I told her, “I’m not crying because I’m sad. I don’t want you to think that I’m sad- I’m not. I’m relieved to know. I feel vindicated; I told everyone and no one would listen to me. I’m not crazy, I didn’t imagine this, and that now I have everything that I need to get Wyatt everything he needs to live his best life, and that makes me so happy. Everything will be different now, but that doesn’t scare me. The unknown scared me more. I can handle reality and I can breathe again because now, I know what I’m up against and fighting for. Now we can get him the therapy that he needs. I just feel, relieved. And…and I feel like an absoute failure.”

At that point, I was waiting on the ASD diagnosis, having it felt like… confirmation. Like I’d been handed a map that would point us in the right direciton.

The developmental delay, that made sense, but was a slight shock.

But oh Lord. When she heaped that final scoop on there, topping it all off with anxiety, that hit me like a dagger straight in the heart. I felt it rip right down the middle.

I did that.

I’m the worst mother in the world.

I even knew something was off, that he was different, but still, I pushed. I pushed him so hard to catch up. I tried to forcibly mold his little self into someone that he simply wasn’t capable of being.

I knew he deserved grace, deep within me, I knew it; yet, I gave him none. And now my son was not only naturally eager to please, but he was terrified to fail. I did that.

Nothing in this world has ever made me feel like a bigger failure.

I’d already fought through all the stages of grief nearly two years prior when I’d sat on the couch crying to my best friend; when I’d accepted the fact that something was wrong. That was a hard pill to swallow.

Do not mistake that for one second by assuming my grief was disappointment in my son or anything like that. That stage of this journey probably requires a blog all it’s own. The best and quickest description that I can give is that, it’s like mourning the loss of all the dreams you had for your kiddo; from the moment you found out you were pregnant until that moment. You imagine your life with the baby and kid, happy & healthy, imagine a daughter being a tiny ballerina or your son being a smart & active kid playing sports etc. You never imagine things being a varied shade of happy. You just imagine the typical. So thats what you have to say goodbye to and let go of…

It’s a crazy place to be and I don’t wish that on anyone. All that to say, I’d been fighting that inward battle for a while and all alone. Finally, it was out there and it was real… I wasn’t going to be fighting alone anymore, I had back up, and that gave me hope.

Little did I realize at that moment, that was not the end. No it was just the end of a battle but the war, it was just beginning. I’d thought that fighting to get the therapy, obtaining this diagnosis, that would be the end of the struggle. At least what had been our main struggle for the past year.

Turns out all that was all a warm up, and now, the real marathon was about to begin.