“My life story, so to speak, began 29 years ago in Bayonne, New Jersey. At a young age, I was considered different from my family. I enjoyed the stillness of silence and always had my face in a book. I escaped in stories of mystery and wizardry almost daily. I could close my eyes and be able to imagine each scene. It was the version of life I preferred to live in. My family and I moved to Florida when I was 12. I left my love of books behind and became a full-blown teenager. This is something I still regret to this day.
Fast forward to 2016, I met my now-fiancé in Orlando. We dated for a short time before we decided we wanted to start a family together, and 2 months later, our dream came true. We were unbelievably happy, and I felt like a goddess in my new body. When I was 6 months pregnant, complications started to arise. I had to go to the hospital twice for early contractions that had to be stopped and once, my son stopped moving for quite some time. Later on, we found out my uterus had doubled in size, which meant my pregnancy was now high risk. Due to high blood pressure, I had to be on bed rest for the last month.
My doctor had a long talk with me prior to giving birth, and I wanted to make sure I was clear if complications did arise, my son was to be taken care of first. Selfless decisions are made by mothers way before a child takes its first breath. A c-section was scheduled for June 18, 2017. Ironically enough, I began to have contractions as soon as I got to the hospital so either way, my son was going to make an entrance that day. Before being taken into the surgery room, I soaked up every inch of my fiancé’s face. I was terrified of being without him, since the fear of not making it through the birth was lingering. I kept my eyes on him the entire time and about 20 minutes later, we heard that first cry. Ronin Edward Douglass Davie was entering the world. Double the amount of usual medication was given to me since I had a high chance of hemorrhaging, and I was not reacting at first. Luckily, I made it through the first night and was given the okay the following day.
After 3 months of maternity leave, I went back to work. I was promoted within the first 2 months of being back, but I was still battling postpartum depression. It would hit me in tsunami-style waves and eventually I felt like I was drowning. I was struggling between motherhood and wanting to further my career. I was up all hours of the night typing emails with one hand and feeding Ronin a bottle in the other. For the first time in my life, I took a step back. I resigned and became a stay-at-home mom.
Ronin’s first year of life went like any other. He was such a happy baby. He hit his milestones ahead of schedule and I didn’t have many reasons to be concerned. When Ronin was about 18 months old, I began to see differences in him. I had helped my sister raise her two sons, and Ronin was just different. I began noticing his speech was not where it should have been, and his need for repetitive acts. Around this time, he began spinning in circles as well. He had always been fascinated with his hands and it began to intensify. I would find him just staring into them as if they were telling him a story. His eye contact slowly began to fade, and eventually self-harming behaviors came into play. I began researching and it always led to one outcome: autism.
I spoke with several pediatricians over the course of Ronin’s first few years. Each time I would lightly touch on the subject of progression, but I never spoke up loud enough. The voice in my head was fighting its way to come out, and I put every barrier possible in front of it so it couldn’t escape out of my mouth. It’s still a mystery to me. I suppose not wanting him to be defined by a diagnosis was my way of justifying my silence. As for his speech delay, I constantly spoke of that and was shut down multiple times. His pediatrician at the time said, ‘Being a first-time mom can be overwhelming with milestones. Let’s just wait and see until he is 2-and-a-half.’ That method consisted of us doing nothing until then, and obviously that didn’t seem right, but as parents we are taught to trust in our doctors. I repeatedly told her I assisted in raising two children before, and it was as if this information went in one ear and out the other. I continued to work with him, but once Ronin hit 2, it was as if he hit a brick wall and any words he did have disappeared.
I knew in my heart in order to help Ronin I needed to speak up. In January 2020, I found my voice and demanded an evaluation. My tone was most likely a bit more aggressive, as I almost shouted, ‘I am telling you my son is not progressing. He needs this evaluation!’ It was only after this I was led in the direction of a free autism screening, which then led us with the paperwork to get a full evaluation done. On February 14, 2020, Ronin was diagnosed with Autism Spectrum Disorder. I knew the diagnosis was coming, but it hit me like a ton of bricks right in the center of my chest. Once the words, ‘I definitely believe Ronin is on the spectrum,’ were said by the doctor, everything became blurry. The next thing I knew, we were walking to the car and my fiancé caught me as I almost fell to the ground with white-hot tears streaming down my face. In the following days, I was quiet. I didn’t want to be touched. I was in my own thoughts almost all day long. I spent my nights frantically researching and crying myself to sleep.
What I would like to be understood the most is when I got his initial diagnosis, it was made to seem as though Ronin had the most extreme and ‘severe’ case of autism. For someone who was not knowledgeable on this topic, I had no idea what to think. The doctor who diagnosed him said, ‘We need to start aggressive therapy as soon as possible. He will need to be in therapy at least 40 hours a week.’ All the research I had done and all the information given by healthcare professionals had more negatives than positives. Within the first month, I was told if my son continued to be nonverbal, he would most likely not be able to attend mainstream schooling or even be potty trained. I was bombarded by all the parts of life he would not be able to do. Even if I tried to take a step forward into some type of light, every doctor and therapist pushed me back into the darkness.
It has now been 10 months since Ronin’s diagnosis, and an unbelievable amount of progress has been made. He was potty trained within 3 days and he currently has 30 words, either consistent or sporadic. He is learning to communicate through visual communication boards around the house and is able to let me know his wants/needs. The fact my son is actually talking to me and expressing himself is something I prayed for. It may not be a ‘traditional’ form of communication, but it is everything to me.
6 months ago, Ronin had the skills of an 18-month-old. As of today, Ronin is functioning as a typical 3-year-old. He has a strong developmental team now, and is currently in both at-home occupational and speech therapy. My son works hard every single day. His will is stronger than the will of ten men. Every day I watch my son break down the walls doctors and therapists have tried to put in front of him. I watch him rip the label of ‘low functioning’ off of his body. I will never believe in the labels of high-and low-functioning autism. No one will ever stamp his forehead with what he can or cannot do.
I began advocating for both autistic children and adults on social media about 5 months ago. It has since changed the perspective I had when I began. My lifelines are now the autistic community, made of autistic teens and adults, instead of only reaching out to parents of autistic children. I am fully confident in my parenting because of this community. Why? Because I am choosing to listen to those who have lived and breathed this life, instead of only those who are only along for the ride of autism. Advocacy for this community has taken over a large part of my life.
One of my goals I am very passionate about is to help other parents of autistic children become more knowledgeable about this world, aside from what medical professionals advise. They need to understand the accepted terminology, the ableism constantly poking its ugly head into this community, and to heavily research the types of therapists they are allowing into their children’s’ lives. I stress to many parents, we cannot only advocate for services for our children under the age of 18, but for services of those entering adulthood. Sometimes you need to take a step back and look at the bigger picture. Humans are only considered children for eighteen years, and then the remaining years of their entire life is adulthood. Autism does not end at 18, and it is very important we remember this.
I want mothers and fathers to know an autism diagnosis is not the end of the world, but the beginning of one which will make more sense to your family. Months ago, Ronin was banging his head against the floor. He was pulling my hair out by the handfuls during his meltdowns. It was when I received his diagnosis I realized he had sensory needs not being met. I know when you receive your child’s diagnosis it can be overwhelming. There is so much information, you feel like you need to become an expert in order to best help your child. The advice of taking it one day at a time didn’t work for me. Honestly, I needed to take one minute at a time.
In the blink of an eye, an autistic child can become overstimulated and a meltdown can occur. Each and every day are sometimes polar opposites of one another. This world can be tough, but it is beyond worth being in. Ronin has changed me in so many ways. I am now a completely different person. He constantly helps me be the best possible version of myself. I am a mother of an autistic child, and I am proud to make this statement to the world.
My son is exactly the child I had always dreamed and hoped for. He is quirky and radiates this raw form of love I have never seen in another person. I couldn’t imagine my son any other way than he is now. His quirks make him this tiny human who makes me laugh, cry, and smile all at the same time. My son is like me in so many ways. I am suspected of being autistic, so receiving his diagnosis has made sense for me as a mother, but also for myself as a person. Autism was the missing piece I needed to solve years and years of confusion, and the constant feeling of not belonging. Autism is what is going to help me ensure my son has a life where he receives the emotional support he needs. This is his journey, and I will always make sure he is leading me. He is my guide on how to be the best possible mother. I vow to walk this journey with him until my last breath.
If I would rewind the hands of time for a different outcome, the answer is no. This life is full of true meaning. It is full of change and hope. Most importantly, this life I wake up into every morning is full of unconditional love. There is no other life I would want to live.”
This story was submitted to Love What Matters by Krystle Prashad of Orlando, Florida. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more powerful perspectives from special needs moms:
‘I can only do so much.’ It’s just the two of us. One day, I won’t be here. Who will tell her I’m gone? Who will make sure she’s safe?’: Autism mom shares daughter’s journey, ‘I’ll let her lead the way’
‘I whipped around fast. ‘You leave him ALONE.’ He covered his ears, flapping his arms. The man snickered under his breath.’: 70-year-old woman thanks special needs mom for opening her eyes to autism, ‘You taught me patience and kindness’
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