OUR AUTISM JOURNEY

I'm really bad about putting off stories I want to share. I still haven't written out my girls' birth stories, one and three years later-can anyone else relate? But I've learned that the longer I wait to share these stories, the less I remember. The more the beautifully exquisite details start to fade away.  And I want to stop doing that. I want to share these stories when they're raw and real. When the infinite details are still so vividly fresh in my mind.

 
 

So here we are on Mother's Day, 2018. 

And here's her story. Here's the story of our sweet Everly being diagnosed with Autism.

She was born on December 1, 2014. It wasn't until she was around two that we started questioning if she was behind.  I was very optimistic as a new mother.  I was a "she will learn when she's ready," and "she's just a little slower speaking" than others kinda mom.  I never EVER thought something was actually wrong until she turned two and I realized she wasn't talking as much as other kiddos her age.  I also attributed all of her other "off behaviors" to being a young little girl.  It's really really hard those first couple years. I can attest to that.  How do you know if they're just a little slower to develop or if there's something actually wrong? I get your fears mama! It's so so hard to know! But here's our story and what lead us on our journey to finding answers. 

  • She was (and is) very delayed in speech. We cannot hold a conversation with her. 
  • She would (and does) constantly point and grunt at objects to let us know she wants it.
  • She made (and still does make) very little eye contact. 
  • She made (and still does make) weird facial gestures and awkward, repetitive body movements. 
  • She was (and is) always hyper. Not just "being a toddler" hyper. OVERLY hyper. 
  • She was (and is) very independent and typically doesn't want to/care to play with others.
  • She was (and is) not bothered when she hurts another child or adult. 
  • She takes a long time to respond to her name, as though she is deaf or zones us out. 
  • She didn't (and doesn't) like any change to her routine. She's very bothered by it. 
  • She was (and is) very into specific items and those items alone.
  • She was (and is) very aggressive towards other children and adults.
  • She has an EXTREMELY short attention span and doesn't follow directions well. (insert at all)
  • She is overly adventurous and fearless. She doesn't cry often when she gets hurt.
  • She is very picky about colors and order and sorting. 

This list may seem exhaustive and some of the items may seem "normal" for a three and a half year old, but when there's been little to no improvement for almost a year and a half, it's a different story.

So from two to three we just watched her. I knew my time in the Army would be coming to an end soon, so we didn't make any life altering changes. We just watched her and hoped there'd be improvement. 

This was our year of denial.

Blake and I rarely spoke about her delays. Part of it was anxiety. Part of it was denial. And honestly, part of it was embarrassment. I don't think ANYBODY wants their children to be delayed. We aren't ashamed of feeling that way. It's natural to want your children to be normal and to excel developmentally! 

Eleven months later.

It was November of 2017. We were making numerous transitions between sitters/nannies and because of my work schedule and the holidays, I was spending a lot more time with Everly and at home.  It was truly my first time seeing her around other kids her age in over two years. We'd been around kids at play places and at birthday parties, but I hadn't seen her around this many kids her age, well...ever.

On December 8, 2017, Blake and I made the decision to take her in for a three year checkup. Not required, but just to get her pediatrician's advice. It was Hadley's first birthday, and seven days past Everly's third birthday. 

After about an hour of paperwork and back and forth conversations, she said the words we weren't ready to hear: "Have you ever been screened for autism? Your daughter most certainly needs extensive developmental therapy."

It took Blake and I a couple days to really let our new reality sink in. This was the first time we were told by a medical professional that something was indeed wrong. 

We were immediately approved for speech therapy, but they wouldn't allow us to start Occupational Therapy (OT) or Applied Behavioral Analysis (ABA) Therapy until we saw another developmental specialist. 

If anyone is familiar with the military referral process/system to see civilian providers, it is an extremely exhausting and tedious process. We first were sent to UNC Chapel Hill, and told by their doctors that we could not be seen until August 2018...8 months later. We then were referred to nearly ten different providers until I gave up and said I was going to find someone myself.

During the month of February, I became Everly's biggest advocate.  I drove from Fayetteville to Raleigh to Durham to Chapel Hill to Charlotte to Wilmington and all over the state practically.

During this time we actually declined an initial diagnosis because it seemed to early on in the process. We didn't feel she'd be seen enough or by the "right people." If I'm being completely honest, with the rising incline of an autism and developmental delay diagnosis, we didn't want to jump the gun. We wanted to be patient with the process. We'd heard too many stories of kiddos being diagnosed "just because" there was no other answer, and we didn't want to be that statistic. Whether it's true or not, we still wanted to be patient. So we set out for more. 

That was when l I landed upon the Doctor who I know without a shadow of a doubt the Lord was holding us out for. 

I contacted Developmental Pediatrics of the Carolinas in Concord, NC and after a VERY long paperwork process, we were scheduled to meet with Everly's new developmental doctor on April 30, 2018. 

It was the day after we returned from a week and a half trip across the country to Blake's parents. We were exhausted, through and through. But, the day had finally come.

 
 

We started the day at 7 a.m. and drove three hours to Concord, NC for a 10:15 appt. Unfortunately, due to being on vacation prior, Blake couldn't afford to take another day off work because he's in command. So it was just E and I. 

We were checked in and within three minutes taken back for vitals.

The sweet physician's assistant was so kind to us. Everly was being herself and not the easiest in a confined environment, but the ladies and gentlemen in this field know patience if I've ever seen it. 

After the vitals, she looked at me and said, "what do you want to come out of this appt? Do you have an end goal?"

Ugh, my heart sank, my eyes filled with tears and I broke down at such a simple yet profound question. 

I responded, "I just want to get her the help she needs, if she needs it. I just don't know what to do anymore." And she said "that's what we're here for."

We went into the appt and within five minutes Dr. Stegman walked in. I was already aware of his extensive resume and he came highly recommended from hundreds upon hundreds of families walking a similar journey. I knew we were in good hands.

For the hour and a half we were in that office with him, I don't know that I've ever felt more pressure.  Not intentional pressure, but I knew so much was going to come out of this appt.  I knew the magnitude of this diagnosis or lack thereof.  I wasn't searching for a diagnosis, I just wanted to get her help. 

Prior to the appt he had me fill out a ten page questionnaire with social, cognitive and behavioral type questions on a "1 being the least, 10 being the most" scale type thing. He said on that alone she met the pillars of autism, but of course they don't just go off of a questionnaire.  It just helps to see what parents and caretakers see. He kept us in there for an hour and a half to make the observations himself. He's been doing this for 30 years. I knew I could trust this man. 

At the end, he looked at me and said, "okay mom, you ready?" 

 
 

Phew. I wasn't.

The next thirty minutes are honestly quite a blur. I remember crying and holding Everly. I remember him handing me kleenex and saying, "Everly scored a 79/100 today. This puts her with a diagnosis of mild to moderate autism.  She's bordering moderate based on my notes and observations. She's also being diagnosed with global developmental delay. She is currently testing at a 22-27 month level. In her mind, she's barely 2 years old." He then went on to say that 1/3 of his patients seem to outgrow their symptoms by the age of 10. 1/3 of them seem to get worse by the age of 10. 1/3 of them have no change and continue to develop delayed for the rest of their life.

He looked at me and said, "you're doing everything right mom. But hopefully this helps you understand why things are so hard. Normal kids want to please their parents. They know that kids are supposed to behave because their parents want them to. But our special autistic kids don't understand that concept." (insert ugly alligator tears!)

I can't really explain the feeling that washed over me except that I was grateful and heartbroken all at once. Grateful for a diagnosis that would allow us to get the help Everly so desperately needs to thrive. Grateful for a doctor and his team who truly care about their patients more than I could ever hope for. Grateful that the Lord had us wait for them. Grateful that the Lord lead me out of my active duty Army career when he did so that I could be with her every moment of every day. Grateful that suddenly our little Everly made so much more sense to us, even though our situation became more complicated. 

But also heartbroken. 

Heartbroken because Everly was now qualified as "different." As "special." Heartbroken that she had and still has NO idea what this diagnosis has done to her future. Heartbroken for her childhood to be stripped by daily therapy sessions, when she could be outside playing with other kids or at school. 

It hit me as we were walking out of the clinic that it was April 30th. The very last day of "Autism Awareness Month." And now, a day etched in my memory forever. 

As soon as we got into the car, I broke down. I called Blake and told him everything, and we both cried. It was one of the most raw and real conversations he and I have had in our entire nearly seven years of marriage.  He shared a story with me that he hadn't yet shared. He told me about a podcast he was listening to a few weeks prior. He said a lady in her forties or fifties was talking about her autism journey, and how it made her the smartest lady on the planet! That she's now a doctor with tons of degrees and the diagnosis never slowed her down, but made her so uniquely special and smart. He cried telling me this and said, "As soon as I heard that, I knew I was hearing it for a reason. I had a feeling this was going to happen." We both burst into tears. We then spoke about the song we've dedicated to Everly. "True Colors" by Justin Timberlake from the movie Trolls. Every time we hear it, we just hold our little girl. 

You with the sad eyes
Don't be discouraged, 
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
The darkness inside you
Can make you feel so small

Show me a smile then
Don't be unhappy
Can't remember when
I last saw you laughing
This world makes you crazy
And you've taken all you can bear
Just, call me up
'Cause I will always be there

And I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful

We can't help but shed tears every time it comes on, and friends...I kid you not. While we were on the phone, it starts playing in my car.

God... WE HEAR YOU! WE KNOW YOU ARE NEAR! 

 
 

Everly and I then drove to Ikea. For two hours we walked aimlessly around the store, eating pizza and ice cream and just being together. It was my first Ikea trip (of about 100) where I bought nothing. I just let her wander freely and I just watched. It was like an out of body experience watching her unknowingly walk into a new life.  We walked passed the play center, where I was hoping I could let her go and be wild and free. Then I read the sign that said kids must be toilet independent/trained. Yet again, my heart was crushed. I don't know when that day will ever come.

I wanna share some things that have been on my mind. Some things that are raw, vulnerable, ugly and embarrassing. But mostly, things that are true.

  • Anxiety rips me apart wondering if I should've put her in daycare right away to be around other kids her age. Would that have helped her develop? It breaks me to my core. 
  • Anxiety rips me apart wondering if she watched too much t.v. before she was two and if that had a lasting impact on her speech. It breaks me to my core. 
  • Anxiety rips me apart wondering when I will ever be okay with having to put her into a special needs class. Honestly...I'm so embarrassingly scared of that. It breaks me to my core. 
  • Anxiety rips me apart wondering when she and Hadley will ever get along. We can't leave them alone. She puts bruises and draws blood constantly. Hadley (HER OWN FREAKING SISTER) is scared of her. It breaks me to my core.
  • Anxiety rips me apart because she hurts other kids and adults and they sometimes don't get to see the sweet, innocent, pure Everly that we get glimpses of. It breaks me to my core.
  • Anxiety rips me apart because she's going to be a flower girl for one of my best friend's weddings in July. Will she ruin the wedding? Of course not. But my mama heart worries so much because we never know what kind of day she'll have. It breaks me to my core.
  • Anxiety rips me apart wondering when she will ever potty train. Dr. Stegman asked if she knows what it means to be wet or dry? Ummm, NO! She has NO idea. He said it could take years then. When will she ever be able to play in Ikea by herself. It breaks me to my core.
  • Anxiety rips me apart that Hadley is leaps and bounds above Everly. She's truly outsmarting her and she's two years younger. I don't ever want that to affect Everly's confidence. It breaks me to my core.
  • Anxiety rips me apart because Dr. Stegman said Hadley is twice as likely to develop autism because of Everly. And that though she is developing well now, it could suddenly stop at any point. That fear breaks me to my core.
  • Anxiety rips me apart because Everly has no idea what it means when someone asks her "what's your name" or "how old are you?" She's 3.5 and looks like she should be able to answer those things! I can't blame people! But it's so sad when she just looks away when they ask that. She has NO idea. It breaks me to my core.
  • Anxiety rips me apart reading all of the "you should change this in her diet" forums and "you should supplement this or use this oil" posts. I CAN'T DO ALL OF THAT! It's too much for me right now. I can hardly take care of myself. It breaks me to my core.
  • Anxiety rips me apart when someone says "Everly will be fine! She's going to outgrow this!" I know the friends and family who say this mean well. But Blake and I know she will be fine. This is not a death sentence. But these words sting so so so bad. Nobody sees the full story. There's a reason we are going through all of this. There's a reason one of the best Autism doctors in the state (who's been doing this for 30 years) diagnosed her with autism. She does need help. And for whatever reason, those words break me to my core.
  • Anxiety rips me apart that I got out of the Army to have more freedom. To be able to focus on our family business and to grow myself spiritually and physically. Yet now I'm taking Everly to therapy nearly every day of the week. This wasn't in my playing cards. It breaks me to my core.
  • Anxiety rips me apart when we see gravel or rock.  She has an infatuation with rocks that knows no bounds. She will throw an hour long tantrum and scream as though her dog died when we pull her away. One too many people have witnessed this. It breaks me to my core.
  • Anxiety rips me apart not knowing how to explain her to other kids and parents at school or on playdates. I don't want to introduce her by saying "Hi this is Everly and she has autism!" It doesn't define her, yet we feel so obligated to explain to others who she is and why she is how she is." It breaks me to my core.
  • Anxiety rips me to my core when I feel a sense of jealousy wash over me when I see kids her age acting "normal." I feel so guilty when I feel this way, but it's so hard not to compare. There's absolutely NO shame in wanting your child to be "normal." That's natural. But still, it breaks me to my core.
  • Anxiety rips me to my core when people say, "oh but she's so beautiful!" as though her beauty (and yes, SHE IS OUR BEAUTIFUL PRINCESS!) takes away her delays. As though it erases all of the other troubles. It breaks me to my core.
  • Anxiety rips me apart wondering if this will affect her ability to play sports.  Sports are such a huge part of mine and Blake's life, and we've looked forward to her playing sports almost more than anything. How will this affect her? It breaks me to my core. 
  • Anxiety rips me apart knowing how many bullies I faced as a child. For my teeth. For my Walmart shoes. But this? Not this. It breaks me to my core. 
  • Anxiety rips me apart because I haven't spoken to daddy about this. I never got to cry into his arms. I never got to hear him tell me how much he loves her, just one last time. And GOSH THAT BREAKS ME TO MY CORE. 

Every night before bed, since Everly was born, I've whispered prayers into her ear, rubbed the baby hairs that sit across her face, and sang "Amazing Grace" three times through. It's our routine every single night. The last couple weeks have been so special. She needs those five minutes with me. I need those five minutes with her. But for the last week, out of nowhere she's started rubbing the little hairs that lay across my face while I sing to her. It's as though she's telling me, "Mama, it will be alright. I'll always be your Everly, and you'll always be my mama."

Everly Brynn Hawthorne, no matter what diagnosis this world may throw your way, I know without a shadow of a doubt that you are destined to shine. That your true colors will shine bright and the Lord will guide us through this journey of uncertainty. You are mine and I am yours. Forever and ever, my Ever. 

Love, momma

 
 
 
 

Lastly, I can't thank my husband enough for this photoshoot. It is truly one of my most cherished shoots ever. So candid and natural. Just me and my girls where we love to be most. LOVE YOU HUBS! Thanks for an amazing mother's day! 

XX, Amy