By Ashley Manzo
In this blog post, Ashley Manzo shares her story of having an autistic child and the challenges – and gifts – of caring for her son during the COVID-19 pandemic.
I never wanted to have kids. I’m sure this a strange way to start this article, but it’s true.
My husband and I were set for our dream vacation – an Alaskan cruise for our wedding anniversary. However, the day of our departure we missed our flight and could not get another one. We were devastated. So I returned to work, but over the next week I felt off, but chalked it up to stress and disappointment.
I soon discovered that “off” feeling was, in fact, pregnancy. I’ll never forget my husband and me sitting, staring at the pregnancy test saying “oh no” multiple times.
Fast forward to our eighth wedding anniversary when our four-year-old son Oliver was diagnosed with autism. Life has always had a way of surprising my husband and me.
Ollie has always been the happiest kid. All smiles and cuddles; he charms the pants off everyone he meets. He was getting close to three years old and he was not talking. Not a single word. I refused to believe that he was different, but he was. So I did the safest thing possible and put him into WV Birth to Three, a program for developmentally delayed children, but I still refused to have him evaluated for autism.
My son’s speech therapist was the first person to look me in the eye and say, “I think Ollie is autistic.” The heartbreak I felt in that moment will stay with me for the rest of my life.
I can tell the usual stories of long waitlists, denials, and endless bills. It’s pretty common for families on this road of autism – approximately one in 54 children in the U.S. is diagnosed with an autism spectrum disorder – to face these obstacles and struggles.
We have been blessed in so many ways on this journey. With the help of a friend, we were able to bypass a year long wait for evaluation and diagnosis to just a two-month wait. My husband happened to be working in a building that was a new Applied Behavior Analysis (ABA) Center in our town, which got us on the wait list early, and eventually into the program. Ollie now has three days of ABA a week, an Individualized Education Program in school, and separate speech/occupational therapy.
While the road to receiving and accepting Ollie’s diagnosis was (and still is) difficult, what I really want to share is the present climate of our times. It’s a pandemic – just in case you didn’t know. I was laid off of BOTH of my jobs, followed by my husband being laid off a week later. School was closed and then ABA closed a week later. I went from only seeing my boy at the end of a long day of therapy/school/work to being with him 24/7.
I don’t want to downplay the severity of the situation we are all in. I’m still waiting for my unemployment to process and constantly worrying about bills. Additionally, my husband and I have become the sole educators and caregivers for our son. I consider myself lucky to have been given this time with Ollie, but it’s not easy. He’s hard to keep focused and he probably has 10 times more work than a normal student because we are getting work from school, ABA, and special education.
I’ve spent so many nights crying, feeling like I was a failure as a mother. It was my fault Ollie had autism or that he wasn’t progressing in his therapies. But during this time, I have been able to focus all of my time, love, and attention on him. I’ve never been so grateful for these moments in my life. I will never be more thankful for his therapists, teachers, and family members who educate and care for him when we’re at work.
Autism isn’t something I wish on anyone, but it’s all I know and honestly all I need to know.
I never wanted to have kids, but in my heart I know I was always meant to have my Ollie.
Ashley Manzo is the founder and owner of Marie Manzo Photography where she specializes in photographing dance. She is also a Certified Surgical Technologist through the Association of Surgical Technologists and a Certified Ophthalmic Technician/Scribe. A former Pilates teacher and yoga enthusiast, Ashley resides in Morgantown, West Virginia, with her husband Beau and son Oliver.
Thank you, Ashley, for sharing your touching story about caring for Ollie during this challenging time.
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others learn about your struggles and increases awareness and understanding. We will help promote your website and social media accounts as well as your favorite advocacy group. Contact us to get started sharing your story now!