Communicating through written words has always come naturally for me. I like long text messages that I can organize my thoughts and linger on. I love to engineer and create a message to adequately and methodically convey my point. I believe in the power of words and how they can build up relationships or tear them down. But writing Everett’s diagnosis story has always stumped me, because we have had a decade of life with autism and there are lots of complicated layers. Forcing myself back into those early times is a bit agonizing, because the state of helplessness I lived in is overwhelming. I do this because I want to help anyone that might be struggling in the same early place and also take the time to see how far we have actually come.
When Everett was born, I knew very little about autism I had only been in contact with a few people who had autism. At about 9 months old, Everett became allergic to everything he was eating. He had some terrible gastric issues and kept a low grade fever. When I took him for his 12 month checkup, he had a fever and so we didn’t receive 12 month immunizations. Everett had just turned one when Jenny McCarthy appeared on the Oprah show talking about her son, autism, and immunizations. To hear them spout horror stories scared me to death. I vividly remember watching the show and thinking to myself that there wasn’t any way I could handle a child with autism. In my mind, I thought I would rather my child have a terminal illness than autism. And little did I know in that moment, Everett was already exhibiting sensory processing issues and very subtle developmental delays.
It is painful to go back and think about that, and I was extremely ashamed of those feelings for a very long time. (But thanks to Dr. Brené Brown and all of her amazing wisdom she has shared with the world, I now understand shame in a way that I have made peace and erased the shame I had of those feelings. And I only share that to hopefully make someone else feel better about their own dark feelings.) I didn’t know anything about autism and what little I did know seemed to be a true nightmare. I just couldn’t imagine life with a child who was locked in their mind and who seemed to be in perpetual suffering. Then I watched Oprah, allowed myself to be led by fear, and didn’t take Everett to get any more immunizations for almost 2 years. I stayed at home with him during this time so I didn’t have to produce immunization records. I did what I thought was proactive to stop the autism, but the autism was already there.
Right before his 3rd birthday a doctor, who goes to our church and was volunteering in the nursery one Sunday, stopped me and asked, “Do you have Everett in speech?” She said it so casually and without real concern in her voice. I responded with, “no” and she quickly told me that he needed to be and I needed to have his hearing checked. She also told me that one of her children had to have speech, just to make me feel better. This was obviously not her first rodeo when it came to this type of conversation. I made the appointment to have his hearing checked. That was when everything shifted.
Everett definitely had a speech delay, but I really didn’t notice the other delays that he was exhibiting. He hit all major physical milestones within normal range up until then, but I didn’t notice the fine motor delays or any others. When Wheeler was born, I was a very young mother out to prove that I could handle parenting and so I was very honed into him hitting milestones almost as if it was my Mother’s Report Card. Later, I realized that I basically rushed him to grow up. With Everett, I knew this was my last baby, so I didn’t push or rush any development. I subconsciously enjoyed the delays.
I made the appointment with the ENT for the hearing test, but deep down I knew there wasn’t anything wrong with his hearing. What I wasn’t prepared for was how unaware I really was of how deep this would go. They put him into the hearing booth. He refused to wear the headphones and had his first real meltdown. I was not used to seeing him like this. At that point, we stayed in our normal routine and I didn’t really push him out of his comfort zone, so meltdowns weren’t normal for him. I was unable to get any answers from the appointment, but walked away with another appointment to go to a different office that had more complex equipment. A couple of weeks later, they tried again in a booth that didn’t require headphones. He sat in my lap playing with the toys they had in the booth. The person administering the test was asking Everett questions and there was zero response from him. As I sat there, it hit me. Something was wrong and I knew exactly what it was. We were sitting in a little room with a woman who asks questions to 2 and 3 three year olds every day and they are able to answer them, but Everett couldn’t. The doctor referred me to a state run facility that handled diagnosing and he wasn’t able to let his eyes meet mine. I asked multiple questions that he couldn’t or was unwilling to answer. I’ve never felt so alone or scared. I refused to believe that he had classic autism (how they referred to it before Autism Spectrum Disorder). A decade ago, I was at the mercy of the internet for information. I knew that he didn’t check all of the boxes, and it allowed me sit in a place of believing this wasn’t a life sentence. Everyone who loved Everett looked to me for direction and what to think. I am naturally very optimistic, so I painted the picture I wanted to be true. I called the facility the doctor referred us to, but the appointment wasn’t for well over a year (on his 4th birthday). I knew I still had to take action before then. I immediately found a speech therapist and we began going to once a week. In regards to language, Everett would repeat things you said if he was in the mood to do so, but he had zero functional speech. He would get very frustrated with her and there was very little progress. His first functional word was “bubbles”. Every day, I researched on the internet. I learned about sensory processing and knew he needed to start occupational therapy. Our appointment on Everett’s 4th birthday gave us a diagnosis of PDD-NOS (Pervasive Developmental Delay – Not Otherwise Specified). It was basically the dumping ground for diagnosis when it wasn’t Classic Autism or Aspergers. I waited for the appointment as if it would give us all the answers and tools we needed. It didn’t and basically told me I was doing what needed to be done. I felt like I was back to the drawing board. Within weeks, I found the Autism Center of North Mississippi and we started Behavioral Therapy.
There are so many details and moments that I will write about later, but this is the Reader’s Digest version of our diagnosis and navigation to help. I don’t think back on this time very often, and just revisiting these moments bring up raw emotion. As Everett’s delays became more apparent to me, our family, and community; I hold close the moments of grace that showed up, but I think back now with a pit in my stomach to a time where I was drowning. I didn’t know how to help him and there is no more hopeless and helpless feeling than to feel as if you are clueless on how to help your child. What this time in my life did do was change who I was forever and for that I am eternally grateful. I appreciate that autism has given me the resiliency I have developed, but I am proud of the grace and mercy that I have learned to show myself. Parenting any child isn’t easy, but without autism I can’t help but think that I might still be drowning in a life of comparison and scarcity. Don’t get me wrong, Everett’s autism was met with devastation and denial of the long term effects this would have on his or our lives. It was the slow death of the dream I had for his life. Not the death of his life. The death that happened was of my “anything but that” fear driven mindset. I was catapulted into a life journey filled with grace, mercy, pain, purpose, authenticity, love, and joy. There is no more peaceful and empowering feeling in the world than to know that I was able to not only survive my worst nightmare, but come out better on the other end. I can’t imagine a life without autism and I appreciate the lense it has given us to navigate life. I am not ashamed to say that I wouldn’t change Everett’s autism if I could.
