Testimony Tuesday : Jula Joy

by | Mar 31, 2020 | Faith, Testimony Tuesdays | 0 comments

When I first knew my life was different I was around three, or four years old. I remember sitting  in my room and thinking if I could be anything that I wanted to be, what would it be? At the time, I really thought that it would be fun to be a boy because that was what my cousin was. And I loved my cousin. A boy. I could do anything as a boy and people seemed to mind less than when girls made mistakes. I was not experiencing any gender confusion, or transgender discoveries. I really just wanted to have the power that came with being one. I was beginning to know then what I know deeply now. And that is that being born a girl (and a biracial girl at that) would lead to an interesting, sometimes difficult life.

When I was four, my mother took us to a Thai cultural summer school. She wanted us to learn about our fathers Thai culture. It was a long, two hour drive in the car to outside Chicago in an old school.But it was important to her. So we spent a few hours fully submerged in the Thai language and observing the cultural practices of our teachers. Everyone else there was 100% Thai and were regularly speaking Thai at home with their families.

My father had wished for us to not be confused and had spoken English with us at home. When the other children in my class discovered that I could not understand, or even speak most of their language – the social ostracism began. Most of them ignored the “white girl” in the class and some were even mean. I was eventually assigned a tutor to help me to learn the Thai alphabet to catch up with my class. She pretended to teach me and explained to the teacher (who spoke little English) that I was a stubborn student and refused to learn the alphabet. She also whispered to me on the daily that she would only ever speak Thai to her for the rest of my life.

My only friend that I made in that class was a quiet, bookish boy who somehow convinced me to buy his homemade drawn mazes that would intricately wind around the page. My mother discovered me gathering quarters from our van’s toll money one afternoon and when she asked why I was doing it, I shamefully hung my head and described my situation. She wasn’t sure how to handle it, since she herself spoke little Thai and was trying to honor my father in preserving his culture with the classes.We eventually stopped going to the classes the next year, but the damage to my heart was done.

Back at our regular suburban school, I made friends easily and enjoyed a somewhat normal childhood. At home was a different story. With my parents having grown up on different sides of the world, there were several obstacles that pushed and pulled them in opposite directions. My father was a physician and he was stressed to the max when I was growing up. He was on call 24 hours a day and delivered babies at all hours. This made him on edge and he would regularly flare his raging temper at home, melting down over strange tiny details and setting us all on edge.

As I grew, he simmered and while he continued to flare out his anger occasionally in my teens, it was nothing compared to emotional torment that we lived through in my earliest years. He never physically attacked any of us, but the constant unpredictability of his anger made my startle reflex the triggered reaction that it is today.

My father was a kind man when he wasn’t full of anger. He was funny, charismatic and one of the most patient, zen like physicians around. He just lost it at home when things weren’t in a particular order that he preferred, or he wanted to control the schedule if things for himself. It never occurred to me that this was anything to be curious about.

I mostly stayed close to my mother at a young age, but as I grew I sought out my father’s approval. It came in the game of golf which was one of the few ways that my father could release his anger in an appropriate way and one that I excelled at which delighted him and he began to teach me his favorite game. It was through these moments that we formed a wonderful father daughter bond.

He still became angry on occasion, but I learned techniques to calm him and became much less afraid of him as I grew up. His bark was much more intense than his bite and as he proceeded through his sixties he calmed ever more.

When my son was born, I fell deeply in love the moment I was allowed by my doctor to help to pull him out of me and onto my chest. I adored him and my husband cried tears of joy to meet him. Later that evening, as I watched him sleep in his crib, an overwhelming sense of familiarity surrounded me and sent chills up my spine. He looked exactly like my father and I immediately knew that I would be raising the same personality that raised me.

At first, my son was a calm baby who loved to either fall asleep on our chests, or to sleep in a rocking cradle that hugged his sides as he deeply slumbered. He rolled over early and was such a delightful baby. Things didn’t appear to be different until he was around six months and began to eat solids. At first, he was super curious and tried anything that we put in front of him. Eventually, he began to reject certain textures and would not eat some items at all. 

By one years old, he was only eating two kinds of purées and refusing anything else except breast milk. He also struggled to crawl and almost entirely skipped the whole process except for a crab crawl before jumping into walking. He began talking, but then minimized the amount of words that he said. We saw a speech therapist who advised that we gave him assessed by early intervention.

It was here that we learned that he was developmentally delayed by at least thirty percent and that his speech was also delayed. We experienced three years of therapies, a blended preschool classroom and plenty of transitional meltdowns and issues with his ability to organize sensory information. It was determined that he had a sensory integration disorder and while not being fully diagnosed on the Autism spectrum, he was way to socially perceptive, emotionally engaged and imaginative, he did have some spectrum tendencies. 

We worked with an Occupational Therapist privately and my life changed. She gave me the tools and the tricks that I needed to schedule him in a routine, work through transitions and to help him to understand his emotions. They also tested his IQ and he is in the higher end of intelligence. His brain is busy determining how mechanical objects work and postulating the meaning of life. However, daily activities can be a challenge and transitions can be a nightmare.

He caught up developmentally and in speech with his peers and is now a vibrant five year old ready for mainstreamed kindergarten with some speech pull-out and an OT for a sensory diet. I’ve always known that we were in the more shallow end of the spectrum for disability with him. I have no right to complain over the struggles that we face with our amazing son daily compared to some other friends with children with higher medical needs and more intense disabilities.

However, that is what make our journey with him even harder sometimes. Because he is higher functioning, many of the battles that I face are invisible. He seems fine and can pass as “normal” so when he melts down, or is rude sometimes others judge us as not disciplining him enough, or that he’s being a spoiled brat. He can absolutely still be naughty and some kids with disabilities are spoiled; there is that potential in all child rearing. 

There are so many times where he looses his ability to calm himself, or his behavior down. There was the time that I had to chase him across two football fields at the park and carry him back to the playground. There were the meltdowns in Target because the store had run out of a certain item. Just like my father, there was mostly wonderful loving times and great intensity at life, then there were unexpected emotions and breakdowns.

So much of my experience with our son has been this incredible journey of being honed into this beautiful, humble and patient creatures that only God could create. Because we identified his struggles early, we have been able to help our son to develop the social and emotional strength that he needed extra support to gain.

I now look at my father and compassionately see an emotionally fragile street kid in Thailand whose brain and emotions were too big for his little body and who struggled. But he grew up to be a caring physician who occasionally had spectrum meltdowns at home where he threw Tupperware. God’s grace is incredible and if you had told this scared, first time mother three years ago that her son would grow to be the successful preschooler who was ready for kindergarten in three years time, I would have cried, buried my head in the hole that I was living in emotionally and thrown my own Tupperware at the wall.

 All these years, I knew about my external differences to the world like my gender or my race. However, I never knew that inside my genes and my husband’s genes lay the ever bewildering genes of Autism and sensorineural processing that while they create struggles with some very simple things, they create magic with the complicated ideas and tasks in life. God created both my father and my son with an incredible design purposes in mind. Some of my father ‘s patients have literally stopped our car in traffic to hug my kind, cool under pressure father for saving their lives. My sons teachers all want to take him home to raise.

 There is still hidden pain in the day to day struggle, but finally I have my answer as to why I am so different than everyone else. I am gifted with a treasure that only empathy from God can see. I am blessed with some of the most amazing minds in my family. I am cursed with trials that I fight invisibly daily in quite. Blessedly,  I am rewarded with growth and wonders that only the gift if neuro diversity like spectrum and sensory processing can offer.

If you come across a remarkably brilliant individual who is quirky and follows their own peculiar set of rules to face this unpredictable universe -remember that they are made by an all knowing God whose love for them is unending and whose purpose for their lives is an amazing gift that you can never hold down, or size up. You will behold treasures and struggles untold in these magnificent creatures of a benevolent and purposeful God.

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