An Unexpected Diagnosis
In 2022, writing the blog became much more difficult. As the Covid restrictions in my area slowly eased and my children grew older, my activities and responsibilities outside of the home increased. This reduced my writing time and added more mental noise into my day, making it harder for me to write clearly about the past.
Then on December 27, 2021, my son received a special needs diagnosis. This unexpected calamity, as I saw it, gutted my mental stamina for writing about tough topics. I needed to refocus my energy on helping our son.
We had decided to have our son evaluated in the fall of 2021, at the suggestion of his preschool teacher. He had been struggling to adjust to the routines in his preschool class, experienced great anxiety while away from home, and refused to eat, drink, or use the restroom at school.
“He probably has an anxiety disorder,” I theorized with my husband. Both James and I had dealt with chronic anxiety ourselves.
But when our son’s test results came back in December 2021, his diagnosis both shocked and confused us. He wasn’t diagnosed with anxiety, but a developmental disorder.
How…?
“How could he have that, all this time, without us noticing it?” I asked Dr. Stevens*, my son’s evaluator. I knew some children and teens with the same diagnosis. They had limited speech, repetitive movements, rigidity in their routines, and sometimes wild, unpredictable behavior. I tried to reconcile these behaviors with those of our bright, cheerful, mischievous son. They were not the same.
Dr. Stevens pointed out the signs she had noticed during our son’s evaluation: lack of responsiveness to questions, limited eye contact, trouble with sleeping and learning new routines, and an extreme resistance to change.
“The good news is that many of these concerns can be addressed and corrected in therapy,” she assured me. “Especially because you had your son evaluated at such a young age.” My son was 4.
The doctor gave us a long list of recommendations to help support our son: intensive therapy, weekly parent training sessions, additional testing, supplementary school support, and more.
I believed that Dr. Stevens’ recommendations could help my son learn to communicate and grow. I also knew that would only happen if I put in the effort now, while he was still young, to help him survive in a sometimes hostile, neurotypical world.
Change of Plans
Before we received our son’s diagnosis, James and I had dreamed of taking a pilgrimage to Scotland in 2022. The pilgrimage would include visits to historical religious sites, whiskey tastings, and daily Mass by an old priest-friend of mine.
After my son’s diagnosis, however, going on pilgrimage was out of the question. Instead, we spent the summer shuttling our son back and forth to therapy and attending parent training classes on Zoom.
“Maybe this is happening so that you can become an advocate for families with special needs kids,” my husband suggested. He was thinking on the bright side, as usual.
“No,” I responded vehemently, slamming the pantry door. My eyes fell on the ominous pile of library books on the kitchen counter, all on my son’s diagnosis. “I don’t want to advocate for this. I hate this. I don’t want to accept it!”
Not only did I not want to accept it; I didn’t even want to talk about it. For the first year, I told only a few of my closest friends about my son’s diagnosis. I didn’t want to share anything about it, until I knew how I felt and thought about the whole thing. And my initial feelings were decidedly negative.
“God must have made a mistake when He made me his mom,” I declared to my sister, one of the people on my list. “I can’t be the mom of a special needs child. I’m not nearly patient enough.”
“It’s true you don’t know how to help him right now,” my sister said. “But you can learn how to help him. And you are a good mom, Mary. You love your son so much.”
My sister’s words gave me a spark of hope. I didn’t how to help my son…right now. But perhaps that was something I could change.
You Must Unlearn What You Have Learned
First, I had to follow Yoda’s advice from The Empire Strikes Back, and “unlearn what I had learned”. Both me and my husband had to “unlearn” our past parenting methods, so that we could master new ways of supporting and encouraging our son.
“There are certain things that may always be a struggle for him,” I told James. “but he can still aspire to the most important thing: becoming a saint.”
That had been my first prayer for him, long before his birth in August 2017: “Lord, please help my child to become a saint.”
Holiness did not require conformity, or potty training, or singing along with your classmates at preschool. It required loving God and others, and being faithful to the person God was calling you to be. My son could do those things. His diagnosis couldn’t prevent him from being close to the Lord. In fact, it might even draw my son closer to Him.
Smarter Not Harder
That spring and summer, I learned how to prompt my son during social interactions, and to motivate him to achieve new goals. I practiced speaking positive words to build up his confidence and abilities. Instead of working harder, I learned to work smarter: to take small, incremental steps over time to help our son mature. Each small step led to a greater goal: using the restroom without assistance, washing hands, following directions, and putting on clothes.
It was an exhausting summer, and full of setbacks. The staff at his therapy center thought my son was doing great, because his skill levels were higher than many at the center. But among his wider group of peers, my son stuck out. He didn’t conform or pick up on social cues like my two-year-old already did with ease. His personality was unique, unrepeatable, even charming. Still, I feared what would happen when he started school in the fall.
Sure, he had mastered eating, drinking, and using the potty away from home…in a controlled, therapeutic environment. But would any of those skills translate into a real kindergarten classroom?
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Thank you so much for reading! Join me next week for my son’s first day of kindergarten…😬
You are all in my thoughts and prayers! 🙏😊
Also, I am delighted to announce that AVALON LOST, my debut YA fantasy novel, is now available for pre-order on Amazon.com! The e-book version will be released on February 2, 2024.
Here is a link to the Amazon page, where you can pre-order the book or add it to your wishlist. More news on the paperback version coming soon!
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