Where Autism, Love, and Perspective Meet: The Tender Journey of a Mother and Her Child with Special Needs

Table of Contents

Title

Copyright

Introduction

Autism

Chapter 1: Trey

Chapter 2: Our New Life

Chapter 3: Overwhelm

Chapter 4: Autism Defined

Chapter 5: Appointments and Starting School

Chapter 6: Public Places

Chapter 7: Repetitive Behaviors

Chapter 8: Aversion to Food and Stimming

Chapter 9: The Poop Chapter

Chapter 10: Safety and Eloping

Chapter 11: Silent Suffering

Chapter 12: Surgery

Chapter 13: Medication, Summer, and Covid

Chapter 14: Holidays and Birthdays

Chapter 15: Tough Stuff

Chapter 16: Missing Out

Chapter 17: Long-Term Care

Chapter 18: Aggression

Chapter 19: Fear of the Future

Love

Chapter 20: Love Is Always the Lesson

Chapter 21: Grief

Chapter 22: Trey's Love for All

Chapter 23: Love of Community

Chapter 24: Stormie

Chapter 25: Love of Friends and Family

Chapter 26: A Father's Love and Brother's Love

Chapter 27: A Mother's Love

Chapter 28: The Love of Christ

Perspective

Chapter 29: What Matters Most

Chapter 30: Presence of Ancestors

Chapter 31: True Appreciation

Chapter 32: Being Brave and Strong

Chapter 33: How I Get Through It All

Chapter 34: Faith and Patience Grow in the Struggle

Chapter 35: Eternal Perspective

Chapter 36: Resurrection: The True Triumph

Conclusion

About the Author

Where Autism, Love, and Perspective Meet

The Tender Journey of a Mother and Her Child with Special Needs

Jessica Searle

ISBN 979-8-89112-611-4 (Paperback)

ISBN 979-8-89112-656-5 (Hardcover)

ISBN 979-8-89112-612-1 (Digital)

Copyright © 2024 Jessica Searle

All rights reserved

First Edition

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods without the prior written permission of the publisher. For permission requests, solicit the publisher via the address below.

Covenant Books

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Murrells Inlet, SC 29576

www.covenantbooks.com

For Jesus

Introduction

Ilove a good story. If it's a true story based on an actual experience with real living people, I'm there. These are my favorite movies to watch and my favorite stories to read. There's something about the connection to humanity and shared experiences that uplifts me and strengthens me. If it's a story about overcoming hardship and persevering, you got me. I gobble these up. I'm now realizing it's probably because I see myself in these stories, and I always knew mine was one that was going to be shared.

These stories are often written to benefit others. We read the day-to-day life struggles of another, and we don't feel so alone. We see others rise up and overcome, and it stirs within us a greater resolve to do the same. We look at our own lives and our own difficulties, and we see that we are not alone, that there are many who have traveled these lonely paths and somehow kept trekking day after day.

In sharing my personal story, my intent is not to put myself on a holy pedestal or incite pity. I honestly don't like attention. I've gone through great efforts in my life to make sure I was not the center of attention. Being in the public eye terrifies me. In previous years, I believe I was afraid of being judged. These days, I don't care so much what others think of me. We are all on our own personal journeys, just trying our best to survive, honestly. Life can be brutal.

I've always been an anxious person and never enjoyed having eyes on me. It makes my heart pump violently and my pores sweat profusely, and there's a humming in my ears that is not actually audible but is more like a burdensome vibration.

But…this is why I love writing. I can sit behind my computer screen in solitude and pour out my soul and send my words away into the universe and hope and pray that someone will discover something they can relate to, and it will buoy them up. If even one person benefits from my pouring out the deepest feelings of my ever-so-tender heart to the world, I would do it over and over again.

Why? Because…love.

That's what I want to share with you—my love. God's love, Jesus Christ's love—love is the greatest force we know, and I suggest that we scarcely comprehend the depths of love that each of us are capable of feeling and enjoying.

We have mortal, finite minds that struggle to conceive even a portion of what God is capable of feeling. We are spirit, and we are love inherently, but we have these human bodies that get bombarded with outside stimulation and then get distracted easily. It's possible we can focus intently and feel deeply, yet it is often a supreme hardship to carry that with us constantly. It leaves us exhausted and perceiving that it's too hard, and we are too weak.

This is where I get to talk about my son Trey and share the many wonderful life lessons he's shared with me. He's young and has limited capacities, but he knows more than most of us educated adults. His example of love and joy in the simple things in life has unraveled a beautiful tapestry of what each of us already has woven inside of us. We were born with it, but sometimes, it gets buried deep under things of the world.

So, I will begin my story. My painful, joyful story of the many things I've learned from the blessing of caring for my son with severe special needs. I don't pretend to be an expert, just a mom who loves deeply and who has learned greatly. I hope you'll join me.

Part 1

Autism

Chapter 1

Trey

Although I've titled this section Autism, it may also be rightly called Disability or Our Life Experience with Trey or another variation. I am certainly not a doctor or an authority on the subject, but there are some things I do know from my own experience. While I may talk about autism, this book is to celebrate any sort of disability. Most of us have a connection with someone with special needs, whether it be a child, sibling, niece, neighbor, student, friend's child. The scenarios are not a few. In my experience, I have sought help from others looking for any sort of personal experiences that could be shared. I could not find many books, especially faith-based ones. This is another reason I want to write my story, so that I can help others who are also searching.

The autism spectrum is incredibly broad. There is a huge variance between low and high functioning and everywhere in between. Let's start with a discussion about what autism is.

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated one in fifty-four children in the United States today.

We know that there is not one autism but many subtypes, most influenced by a combination of genetic and environmental factors. Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. The ways in which people with autism learn, think, and problem solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.

Several factors may influence the development of autism, and it is often accompanied by sensory sensitivities and medical issues such as gastrointestinal (GI) disorders, seizures, or sleep disorders, as well as mental health challenges such as anxiety, depression, and attention issues.¹ Someone who can have a job at a grocery store and is also a math genius and also someone who is not able to speak, walk, or mentally comprehend can both have autism. There is usually a struggle with social skills such as eye contact or giving people their personal space. Most struggle with being overstimulated and like to spend time alone. They often are compulsive and do repetitive behaviors. They are impulsive and struggle with being patient.

I will tell you about Trey, but please remember, this is my experience, and while the word autism might draw you in, our experiences are likely very different.

Trey was born on November 2, 2013, right on his due date. We had a normal pregnancy with a pretty normal delivery. He did come out very bruised and gray. This really scared me, and the respiratory team was brought in. He had a hard time breathing, but they helped him, and he soon got some color back. It felt strange at the time, but it seemed to turn out all right. Also at the hospital, he failed his hearing test on his left ear. They tested him twice, and he failed it both times, so we were a little worried about that. They said to wait a few months and have him tested again.

When he was about six weeks old, I started looking for the first smiles new babies like to give. My older boys both start smiling at me around seven weeks old. Trey started smiling around two months old but not at me. He seemed to be smiling at everything but not anyone. He seemed to look right past me, pretty much right behind me and over my shoulder, and he would smile away.

But for weeks, he would smile multiple times a day, but he would never look in my eyes and smile at me! This was confusing and something I had not experienced before. I started to wonder if he had vision problems.

One day, this had been happening for about three weeks, and I became very frustrated that my baby would not smile at me! A voice inside instructed me to be patient and that the time would come. About a week later, he started to look me in the eye and smile at me. He was about three months old. It wasn't extremely often, but it gradually became more and more frequent.

This was the beginning of his developmental delays and the first physical thing I noticed that was different about him. Looking back, I now know that he was smiling at spirits. The veil is very thin for tiny babies, especially those as special as Trey. I cannot even tell you how many times a day I would see him smiling at people we could not see. Sometimes he would even giggle. Sometimes we would even follow his line of vision, and he seemed to be following someone who was moving.

Trey was developmentally delayed in every stage and always has been. I can now see that he was autistic from the very beginning. He developed torticollis (tight neck muscles) on his left side at three months old and began his weekly journey of physical therapy. This was not corrected on its own, and plagiocephaly (flatness on one side of the head) was developed. And so a helmet was needed. From July to October 2014, the hottest part of the year, Trey was in a clear plastic helmet twenty-three hours a day. He would often have sweaty hair and red marks on his skin from the helmet. He was required to sleep in it the whole night, every night. The one-hour break every day was for bathing him and washing the helmet. Frequent appointments were needed to monitor growth and check measurements.

Living through it was one of the hardest things I've ever done. I am a mom who loves to kiss and snuggle her babies at least a hundred times a day, and so to have this covering my baby's sweet, soft skin and hair wrenched my heartstrings. There was a small hole at the top, so there was an opening for a tuft of his strawberry-blonde baby hair to poke through. To feel the hard plastic against my face instead of his angel baby skin was heartbreaking to me. Physical touch is my love language with my children, and I viewed this man-made device as the enemy of my mother heart.

Taking him out in public always brought unsolicited looks from strangers. Small children would point and ask their mothers how that baby broke his head, and I would get looks of pity my way. I even had an older woman tell me that surely that plastic thing on my baby's head was not necessary with a look in her eyes like I was cruel to allow such a thing. Little did I know that this was the beginning of a very long journey of having different experiences with my child.

Looking back, I see this experience as one of many that stretched me and simultaneously refined me. I have many examples of that was one of the hardest things I've ever been through, but now I can see myself as that struggling mom and offer her love and compassion and a gentle whisper that everything is okay and it will always be okay.

Also, around three months old, he had an appointment with an audiologist to check his hearing. Interestingly, he failed the right ear. She said the left ear was fine, but she was concerned if he could hear from his right ear. I told her that he passed the right ear at the hospital and failed the left ear. She seemed like this was pretty unusual but determined that since he had passed both ears at one point or another, he was cleared for now. She suggested that if we questioned if he could hear as he got older, to definitely bring him back in.

He always seemed like he could hear fine, so we never worried about it. More recently, I've learned that this is fairly common in children with autism. They just don't respond to things the same as neurotypical children do. Looking back, it's one more thing that was a red flag that we didn't realize until later.

Trey had low muscle tone from birth and struggled to hold his tiny body up. When we would hold him, we always had to offer extra support. He was not able to sit up on his own until he was nine and a half months old. His tiny cousins who were five months younger than him could do this before him. He would never put weight on his legs when I would try to stand him on my lap. He was a floppy baby.

My two older boys were seven and five years old by this time, and it had been a comparatively long time since I'd had a baby, so I didn't notice his delays as much as I typically might have. It was mostly in seeing other babies that I realized something was different about Trey. But I also knew that children develop at their own pace, so I wasn't overly concerned.

When Trey was eleven months old, my doctor recommended he be seen by a pediatrician, so we switched doctors for him, while the rest of our family continued to be seen by our family doctor. The pediatrician observed that Trey had some interesting facial markers for a possible genetic abnormality and recommended we do some genetic testing. He also referred us to a developmental pediatrician to be further evaluated.

My husband Shane and I talked about it and decided to have the genetic testing done. We found out that our insurance would cover it, and so we decided to proceed. We brought him in a few days later to have his blood drawn and then waited for a few weeks to get the results.

During this time, my physical health was struggling. I've been sensitive to headaches since I was a teenager, and they were really bad at this time. Interesting what your body does under stress. I had been seeing a PA at a neurosurgeon's office and was on my way home from an appointment when I got a call from Trey's pediatrician. I didn't see who had called until I got home.

I had just pulled into the garage and closed the door and sat in my car in the semidark while I listened to the message from the doctor on speakerphone. What he told me changed my life forever. I knew in that moment that there was a lot of worry and concern for the future inside of me and that my body needed a release. So I sat in my car in the garage of my house and had a good cry. The worry, however, did not leave me but probably grew inside of me since I now had countless questions.

The doctor said that Trey's results confirmed that he did have two genetic abnormalities. Both his twelfth and his seventeenth chromosomes have small partial duplications. I had no idea what this meant at the time, so I, of course, wondered what his future would look like. The findings were inconclusive, and the abnormalities are rare, especially the combination that he has.

Eventually, we met with his doctor, and he couldn't give us any answers. He recommended we meet with a geneticist at Primary Children's Hospital in Salt Lake City. And so the waiting began.

Months later, we were able to go to the specialist appointment. We had so many questions. We believed the doctor would be able to give us some of the answers we were looking for. Turns out he didn't know much either. He explained that it's common for a person to have genetic abnormalities, but it's possible those genes don't present themselves. My husband or I could have passed them down to our children, but maybe they don't affect us, but they do show up in our children. He gave us the option to have genetic testing done on ourselves. We chose not to because we didn't feel it would make a difference. Also, it would have cost us a few thousand dollars, and that was just not an option at the time.

We left the hospital a little frustrated that we didn't receive more information, but there was a certain peace with it also. Trey was his own person. We weren't able to put him in a box. We didn't know what to expect, but we were content with that. None of us ever know the future experiences of our children! It was nice that there was no mold to fit him into and also to just realize how incredibly special and unique our sweet son is.

We were told that he would likely be developmentally delayed the majority of his life. This was heavy news, but it also felt like everything was going to be okay. We felt peaceful that God was aware of us and that everything was going according to plan, just as it should be. We just didn't have any way of comprehending how drastically our lives were about to change.

Chapter 2

Our New Life

Amidst the feelings of uncertainty, we continued to live our day-to-day lives with gratitude. We were blessed with a wonderful marriage, a nice home, and we had three beautiful sons. Shane had recently completed physical therapy school, and we had an actual career. That alone felt like a huge miracle! We loved where we lived, and we had great friends close by.

The weekly therapy appointments continued, and we periodically met with Trey's pediatrician. His doctor referred us to a developmental pediatrician to be seen in addition to himself. She got us in fairly quickly and evaluated Trey. She tried to play some games with him and watch him stack blocks or anything he could do on his own. He was not able to do any of the tasks she tried. She held him and commented on his low muscle tone. She also diagnosed him with strabismus, which is when one eye turns in more than the other (lazy eye). His left eye did turn in a bit, but I didn't notice it too much. She suggested he see an ophthalmologist.

More appointments, more phone calls, more paperwork, more stress, more unknown. We were slowly getting our feet wet in the vast ocean of special-needs parenting. And just like the ebb and flow of nature, our days were filling with highs and lows. Laughter, joy, worry, concern, gratitude, peace, uncertainty, confusion—repeat and repeat and repeat.

I am an empath, and I feel emotions very deeply. I am highly sensitive, which is a tremendous blessing. But it can also be a heavy burden, and I often feel weighed down by the stress of life.

By this time, toddlers his age were saying a few words and making more sounds. Trey only made a few. He was largely content and was a total joy to have in our home. I didn't realize it much at the time, but he was an amazing baby. He very rarely cried! I thought I was blessed with an amazing baby, and I was, but that was just part of Trey being Trey.

I've tried to not be someone who compares my life to someone else's often. We all have our