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I was born and raised and live and move and stay in a state where the wild west still thrives. My dad was a farmer and the backdrop of my childhood memories are fields of hay where cattle roam and sweet corn grows.

The oldest of three, growing up I stayed very active in sports participating in high school volleyball and basketball at my relatively small school. I don’t remember giving too much thought to my future or a career but I do remember visiting with the school counselor who was the first person to suggest nursing as a potential path.

She offered this suggestion solely because of my good grades in anatomy and physiology and that was the first time that I even considered healthcare for my life.  

The very first year that I was in college working towards the beginning steps of the nursing program, I had my first baby boy with my high school sweetheart.

My entire prenatal and birth experience solidified it for me. I knew for sure I wanted to be a nurse, a labor and delivery nurse.

I dove head first into nursing school and gave it all I had with a newborn on my hip most nights, reading, taking exams, completing clinicals. The stress of it all sent my baby’s daddy down a path I knew I could not follow. We had come to the proverbial fork in the road and I knew I had to choose the path that would lead me towards being a good mother to my baby.

Looking back, my first son, he really saved me. He saved me from a very different life but it was hard. It was so hard. It was years of being committed to the same person, the same hand to hold, the same person to come home to. It was hard. My baby boy was three years old when I graduated from nursing school as a Labor and Delivery nurse. And when he was 4 years old I met the man who would become by husband. 

He was smart and motivated and we were married a few years after our first date.

Then came baby number two, my second son.  

My new baby was happy. He was easy to soothe and loved me. He smiled big when he saw me and while my love for him grew and grew my new husband and I grew and grew further apart.

By the time my baby son was 2 years old we were separated and I moved a few houses down.  Right around that time we noticed that my son was getting multiple recurrent ear infections that we just could not explain.

We began to see ENTs. He had hearing tests and exams and those days were filled with appointments and worry.

As a nursing student I had a couple pediatric clinicals and I remember hearing so many parents worry about their kids being “behind”.  And you know what, to be completely honest, from my experience 9 times out of 10 the doctor was right. The kid would catch up. So as a young mom knowing that my kid had reoccurring ear infections, knowing that he didn’t have a lot of words but he did have words, knowing that he seemed to be learning animal sounds and playing appropriately, maybe, yeah maybe it was all in my head. I didn’t want to stress like the other parents were stressing.

As I sat in the waiting room while my son had tubes put in his ears, I thought this journey was over. He will talk and learn and everything will be OK.

I didn’t realize that what we were really experiencing was regression. Slow, steady, gradual regression. But I couldn’t see it because 1000 other things were clouding my view. Surely he is struggling because of the stress of the separation and anxiety of adjusting to an unfamiliar house.

But at his two year well baby check, we experienced the first unchecked box on that milestone list.

He wasn’t putting two words together.

The doctor told me not to worry but he obviously knew my personality and knew that I would be stressing *ahem* obsessing about it so he connected me with early intervention and I called the very next day.

The day before we were scheduled for the early intervention team evaluation, my husband, who I was still separated from at the time, warned me that I should be prepared that they may mention autism.

I looked at him like he was crazy. No way. In my mind, I think the picture I had of autism was much older, you know? Like I pictured 9 or 10 year old kids that were anxious, pacing, stimming. Those were the examples I saw in clinic and my son was just this cute toddler that couldn’t put two words together.

After the evaluation was over, one of the ladies that was administering the exam told me that even though this evaluation was more focused on speech, she highly recommended I have my son evaluated for an autism diagnosis.

I was pissed, which is funny because now I can spot a child with autism from a mile away but at that time, I could not for the life of me see what they saw. What does my husband see that I don’t? What did that lady see that I couldn’t?

That lady was the spark to would be a firestorm of manic researching. I don’t think I ever slept again!

I enjoy learning new things and being knowledgeable brings me comfort in tough spots so I spent my nights reviewing the DSM-V criteria and becoming more confused.

He just wasn’t checking all those boxes.

But as the regression become more severe I wanted everything right now. Any therapy I could give him I wanted right now.

But the waiting lists were crazy and it would be months and months until I could see a person who could provide a formal diagnosis so that insurance would cover the therapy I wanted to try.

I was persistent and quickly found a nurse practitioner that was new. She was young and timid but I just could not be on those waitlists forever.

After several visits of questions and evaluation and observation my still separated husband and I went in alone for results.  The nurse practitioner sat us down on a couch like we were prepping for a therapy session. She said the word autism and then apologized over and over and over. It was so sorrowful. Her tone was so sad and so defeated. As I reflect back on that day I know that she was not being rude or mean or insensitive. She also had one story of autism in her head and it wasn’t positive or joyful.  She had no idea where to send me. She felt helpless. As a healthcare professional that’s probably the worst feeling she could feel. She was supposed to be able to diagnose and treat but here she was delivering a diagnosis and she had no idea how to guide me.

Because the nurse practitioner was so somber, the doom and gloom followed us for a long while.

I see this so much in my day to day job as a labor and delivery nurse. In the early years of my career when I would be assigned to a momma that was expecting a “knowingly” special needs child I would feel such sadness for her. I was so naïve. So naïve but I have to be honest.  I just didn’t know any better. Even as a nurse I didn’t know any better. Some of my coworkers, they still don’t know any better, even with the prevalence being so high.

I cringe thinking of every time I experienced and allowed the devastation that follows when a room is filled with nurses who are sad for you but yet there is joy permeating throughout every other room on the floor.

So now anytime there is a patient that has a special need or a momma being admitted that is known to be carrying a child with a diagnosis, I beg for that assignment.

I want to be the smiling face in that room that happily and joyfully lays that baby in a momma’s arms for the first time.

It is the least I can do for a momma who just like me doesn’t know the outcome. None of us know the outcome you know? There are a lot of diagnoses that have an expected outcome, a prognosis. We know that for an ear infection you take an antibiotic and it will be over. It is not like that for special needs moms. Most of us have no way of knowing an outcome that is justified with numbers, statistics, and data. We are knowingly living in the unknown. I’m a planner and this whole life of mine and my son’s, I can’t plan.

I did plan for behavior therapy to be provided in my home and after two years I saw little improvement.

As we slowly introduced my son to public school, he loved it so we decided to slowly transition.

In that process I learned that I have to be brave enough to speak up when I want or need change. It’s hard. You form these incredible relationships with therapists and teachers and people and it’s so tough to break that off when it is not in the best interest for your child.

When it comes to my husband, here is something you will find fascinating. Through this process we both realized that a lot of what frustrated me in our marriage about my husband, were actually autistic tendencies. He will agree. We both think my husband has autism. Obviously, extremely high functioning where it doesn’t affect his job or daily living in any negative way but it did affect a lot of the things that were hard for us as a married couple. All of a sudden I found such clarity and it helped me understand him better.

For me, autism saved my marriage. We are back together and my husband understands my son at such a unique level. He advocates for him when I can’t and he even advocates for him against me when I’ve had enough.

The greatest fear that I have is that other people won’t understand him. He is nonverbal so if something happens to me who would know what he wants? There is so much to it. So many intricacies and I know how to read every single clue. The way he moves his hand, wiggles his arm, turns his neck, widens his eyes, rubs his face. I know what he needs just in a glance. How will somebody be able to learn that? Who will care to learn?

The biggest dream I have for him is that he can live his life happy and independent. Right now I can’t see it. I can’t see it. He is only four and really I just want him to feel proud of himself in the life that he chooses. My biggest regret is that I should’ve spoken up sooner when I knew that the company we had chosen to provide in-home therapy was not the right fit for all of us.

My biggest advice is to allow yourself to feel every feeling.

You are going to find happiness again. There is so much joy waiting to be found after you push through that pain cloud.

This is not a sorrowful conversation for a couch. This is a whole new way of living. My son has taught me more than anybody ever has and he has integrated every aspect of me as a person. Even though I do not know how my story ends, I will tell you what I do know. The pages of my life will not result in a sob story. They will collectively tell our celebration story.