Life with Lucas: Our Journey With Autism (Pre-diagnosis)

Four years ago I gave birth to the sweetest, most beautiful, 9 pound baby boy. All the cliches I had always heard about motherhood finally made sense to me. I was in a glorious love bubble, and completely unaware of the hard times that were ahead of us.

I knew very early on that something wasn’t quite “right”. I couldn’t exactly pinpoint what it was, but my mom instinct was screaming at me. It started with the fact that he never slept. While all of my friends babies were sleeping six and eight hour stretches, my guy was sleeping one hour stretches at several months old. I’m a nurse so I know how infancy goes. I know about the leaps, and regressions, and that exhaustion goes hand in hand with having a baby. What I was experiencing with him just felt different. It was always so hard to explain to people without just feeling like I was being a crazy first time mom.

Then came the milestones. Every milestone was delayed. From rolling over, to sitting up, to crawling, to walking. Every last one. Each time the doctor would give me a time limit for when he would need to reach the milestone before we did some sort of therapy, and every time Lucas would reach the milestone just days before the time limit. So, once again, the pediatrician was just convinced all he had needed was a little more time.

When he sat on the floor and played as a baby I would get down on the floor to play with him. Usually within moments he would have turned away from me to continue happily playing by himself. Toys were rarely played with the way they were meant to be. They usually had to be closely inspected near his eyes, he needed to smell them, sometimes rubbed against his face. The wheels on his cars were much more interesting than actually pretending to drive the cars.

When his dad would sneeze he would hysterically cry, in order to vacuum I would have to wear him in a baby carrier because he hated the sound so much.

Even before his first birthday if any part of his schedule was disrupted he would let you know. 5pm every day he would find me in the kitchen and pat the back of my legs until I had his dinner ready. We had to bow out of countless social gatherings because if he wasn’t in bed by his specific time he would not be able to be comforted by anyone but me(when I still breastfed him).

Around two I noticed that he was spinning in circles at random times throughout the day. He was happy, but spinning. I also noticed he was increasingly walking on his tip toes. By two words were scarcely said. Once again I talked to the pediatrician. “Boys are slower to verbal skills than girls, a lot of this just sounds like typical toddler behaviors.”

Also around two the complete emotional breakdowns started. They would happen over things like tags in his shirts, automatic toilet flushes, his sister crying, a toy not being in the specific place he left it. It would take me up to thirty minutes to calm him down. “Sounds like the terrible two’s have hit your house.”

He started talking around three. It felt like it was overnight and all these words just came to him. It was amazing! I quickly realized though that he never held eye contact while talking, and it would take several try’s to get him to answer a question. He didn’t just talk like a normal three year old, instead he would talk about one subject over and over. He couldn’t hold a back and forth conversation. “Let’s just give him a little time to see if he figures it out.”

At three and a half he was still not good at feeding himself with utensils. The number of foods he “liked” was diminishing rapidly.

While I watched countless children approach him to play on the playground, he happily ignored them and continued to play in his own little world. He had no interest in bikes, or kicking a ball, or any type of group activity.

At four we went back to the pediatrician. At four I needed someone to hear what I was saying. I needed someone to realize that no parent ever wants to say out loud to a doctor, “I think my child is autistic.” I needed them to see us, to hear us, to understand that I know him better than anyone else. To know that a diagnosis of Autism was not going to devastate me, but that I would be devastated if I was still unable to get my child the extra help I knew he so desperately needed. At four someone finally heard me, they finally saw Lucas, they finally understood.

We have a diagnosis now. I have contemplated writing about this journey, but I know that somewhere out there someone else is going on this journey too. Someone else is in the trenches like I am. Someone else loves their child/children as much as I do. Someone else has fought and advocated for their child for years like I have. There is strength in numbers, and there is comfort in others stories. So I will be sharing our journey here in this space. I will be sharing it so I can show Lucas what an incredible gift he is one day, and I will be sharing it for anyone else that needs to read it.

Thank you to everyone who has shown us love and support in these first steps.