Do you ever find yourself hanging onto a thought that you just can’t let it go? Does it keep you up at night and pang at you until you have to investigate what that feeling might mean? That is exactly the feeling that led me to explore the world of autism. To know if autism was going to be another bomb landing in our laps.
My daughter Remy has a severe form of epilepsy called PCDH19. It presented itself in the way of a status epilepticus seizure when she was nine months old. For the next couple of years following that first seizure, our worlds were overwhelmed by doctors, hospitals and the constant tug that Remy’s needs were having in our lives. Our lives became consumed by a disease that we were unprepared to navigate.
It was 2016, when Remy was 2, that we were knee deep in the constant chaos that seizures and epilepsy brought to our lives. If pregnancy of our 4th child, navigating a medically fragile daughter and raising two older boys weren’t enough to juggle, I heard a soft murmur that kept whispering in my ears that I felt the need to pay attention to. It was saying ‘does my daughter have autism.?’
A lot of people with epilepsy like Remy, also have neurological deficiencies. The seizures, genetic disorders, and seizure drugs all play a part in cognitive behavior and development. So when we saw some differences in Remy’s development, the thought of autism crossed my mind but it was also just as easy to brush off due to her disease.
One day while scrolling through Facebook, the word ‘autism’ popped up on a post from a fellow epilepsy mom.
The post was to celebrate autism awareness. With a quick roll of my eyes, I scrolled right on past. I was SO over hearing another thing about autism. I was feeling a little burnt out of the conversation because, at the time, it seemed like vaccinating your children was a hot and heated topic, and I wasn’t impressed with the debate anymore. It looked like all the anti-vaxxers were shoving the idea down everyone’s throat that vaccines were spreading the terrible plague called autism. If I heard one more word about it, I might want to choke someone.
But this time, I had a hint of curiosity. Maybe I just needed to look at this article because frankly, I had no idea what the heck autism really was but I better at least know the basics so that I could check that box off the list of things that Remy definitely does not have.
This article I read was talking about the signs of autism in young children. I read through a long list of autistic features and breathed a sigh of relief because none of these characteristics fit Remy. Well most of them didn’t. Well, the ones that did had perfectly good explanations of why they fit but not because of autism.
Remy never spun wheels, lined up cars, rocked back and forth or flapped her arms.
What did fit her better, was that Remy was affectionate, lovable and social. She made eye contact and laughed all the time.
As soon as I realized that Remy DEFINITELY doesn’t fit the autism profile, I was able to tuck that article down to the “waste of time” folders and move on.
But as good as I felt that Remy didn’t fit the bill, I still wasn’t able to move on. Why did this question keep nagging at me? I tried getting closure by giving conclusions to the reasons why Remy acted differently than the baby books said she should behave.
Remy was repetitive, she would bang on things over and over, but she was two, how weird is that? Its not at all.
She held her breath and raised her arms when she got excited, that could be a neurology epilepsy thing, not convinced THAT would put her on the spectrum.
She didn’t speak or say any words. Well many people have a speech delay, but that doesn’t make them have autism
I had a justification for every behavior which relieved me in one way and confused me in another.
She didn’t cry until she was four months old, that just means I have an awesome kid who is amazing, right?
But then at four months, she would cry out of the blue for no reason. Hmm, well she is a baby so that can’t be abnormal.
She was a REALLY picky eater, but lots of kids are. So what if all she eats is refried beans and avocados, that’s normal, right?
The more justifications I made for Remy, the stronger that uneasy feeling built up in me to the point that I needed an answer one way or another.
I started asking everyone that knew Remy if they thought Remy could be on the spectrum. Every family member, every friend, every doctor, neurologist, teacher, nurse, everyone. Every single one said “no way does Remy have autism, there’s no way” That made me feel better, but why did I still have a bad feeling in my stomach. I had to keep pressing on.
At the time, Remy was being seen by a speech therapist named Jan and a special education teacher name Anne. They came to the house every week to work with Remy and me on speech and development. I asked both of them what they thought. They were the first people that didn’t tell me “no way” when I asked. Their responses were more along the lines of “I don’t know, she might”
I guess I was hoping they would have the same answer as everyone else but I appreciated their honesty because if anyone would know, they were the ones that had experience with people on the spectrum.
During one of the home visits, Anne said something that surprised me. She asked me if I wanted to have Remy tested for autism.
How did I not think of that before? How was it that I went around town asking for everyone’s opinions when it made much more sense just to ask a professional whose job it was to diagnose such a thing as autism.
I think the answer is because there was a big part of me that didn’t want to know. Because if I knew, and Remy did have autism, there was no way to unknow it and then I would actually have to do something about it. The answer was terrifying to know for sure, but since Anne asked, I better keep going and find out once and for all.
I told Anne that I would like to get Remy tested and it was a couple of days later, that I got a call from the scheduling department at the psychologist’s office wondering if we were available in 2 weeks.
After that, I was completely obsessed. I started reading everything I could find about autism. I took every online quiz, read blog post after blog post, I analyzed Remy’s every behavior and stayed up late every night worried and anxious.
One feature that I saw over and over again in my research was that children on the spectrum didn’t play make believe or use their imagination. Its common for children to play princess or act like they are an animal or superhero, but a child on the spectrum finds those types of activities to be difficult.
I wasn’t really sure if Remy pretend played, so I studied her for the next few days.
One day when Remy’s speech therapist Jan came over for her home visit, I told her about the upcoming autism test. She gave me tips and insight on how the test might go.
I had made a discovery the night before that would throw this whole autism possibility out the window and was excited to share that discovery with Jan.
I told her that Remy likes to play with her barnyard toys with the barn animals. I brought out the play barnyard and presented it to Remy so that she could demonstrate how she make-believe play, with these barnyard animals.
Remy began to play
“See Jan, if she had autism, she wouldn’t be playing with these animals in the barn like this, right?.”
“Well, what does she do with the animals? When she plays with them, does the cow eat the grass? Or the horse say “neigh? Do the pig, and the chicken play together?”
“Well, no. Remy doesn’t play with them like that. She takes each animal and…”
It was at that moment that I had the answer that I had been searching for. It was in mid-sentence that I realized that my daughter did, in fact, have autism.
This was the feeling that I was avoiding the whole time. Maybe deep down, I knew, and I was too afraid to face the truth.
“She takes each animal, and she lines them up.”
I realized that instead of lining up cars, which is very common for a lot of children on the spectrum, she lines up barnyard animals instead, but the action was the same.
The entire time, I had wanted my intuition to be wrong. I had tried to prove to myself and get everyone else to confirm, that there was nothing at all wrong with my beautiful daughter.
I wish I could say that the days that followed that realization were full of acceptance and embracing this new challenge. I wish I could say that I flung out my superhero cape and conquered this new territory with vigilance and strength.
What actually happened was a lot of tears, fear, anger, sadness, confusion, self-doubt and grief. It was the first moment of many, that would force me to choose hope and faith or spiral into a cyclone of despair and agony.
It was the first moment of many that would begin to define me as an autism mom.
A mothers intuition is the most powerful tool in our toolbelt. Although a lot of times our intuition isn’t telling us what we want to hear, it is always guiding us towards what we need to hear.
When was a time that your intuition was guiding you and you didn’t want to listen? Were you glad you did in the end? Would love to hear from you. Leave a comment, send a reply, share the post, I would love to hear from you. Thanks for stopping by