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My Nearly 18-Year Personal Struggle to Find a Diagnosis for My Son

advice for mothers austism follow your gut instinct personal story understanding autism Jul 05, 2023
Jacqueline Green's personal story on her son's autism

I want to start this article by sharing how amazing and loving my 17-year-old son is. He is incredibly smart, smarter than the average bear, is what I tell him, and he has a huge heart. I love him with every ounce of my being. With that said, I knew early on that something wasn’t quite right with him, and it took me nearly 18 years to finally face it. I share my story hoping to help other mothers. My number one piece of advice to young mothers is to follow your gut instinct.

The signs started when he was just a little toddler. He was a happy baby. I was married to his father, which I have since named Dipshit, and my son had three energetic half-brothers. The first sign was how he would line up his toy cars. Each car would face the same direction, and they would be lined up in a long line that snaked throughout our family room. If one of us took a car and turned it around, Ry would scream until the car was placed back in the appropriate direction.

Around 18 months, Ry began to have severe separation anxiety when I dropped him off at daycare. Up until that point, he never really struggled with going to daycare. At the same time, he struggled with going to sleep on his own. Again, this was not an issue as I could lay him down in his crib, and he would coo himself to sleep. I am a huge proponent of reading to my children, so every night, we would read two to three books before bedtime, but when the books were done, I would have to sit in the room with him until he fell asleep. This could take over an hour some nights.

When Dipshit and I divorced, Ry was 3, and the separation issues became worse, manifesting into severe tantrums that would last for hours. Let me explain the tantrums, as they weren’t like toddlers screaming at a store because they wanted candy or a toy. These tantrums were complete shutdowns. No communication, no moving, often quiet crying, and hiding his face. Talking to him did not help. We tried loving him harder. We tried punishing him by taking away toys. We tried grounding him. We tried rewards, but absolutely nothing motivated him. When we did punish him, he would destroy his room, throw his toys, slam the door, and kick and scream.  After the tantrum passed, Ry would apologize. His mood had shifted, and my beautiful son was “normal” again. Of course, I internalized his tantrums as if I was doing something wrong in how I mothered him. I needed to do better.

I am not an overly emotional person. I am an 8 on the Enneagram personality scale, which means I am the Challenger as I am fierce, assertive, and unafraid. I don’t sit around and waller in my emotions. I may be sad, but I typically pull myself back up and return to work. I a constantly keeping myself busy to the point of exhaustion. I am also a loyalist (Type 6) and a Reformer (type 1). I am incredibly hard working and sometimes very Pollyanna as I believe you make life what you want. If you want to be happy, then be happy.

Ry’s behavior only manifested worse when he entered elementary school. The tantrums were so bad that he was kicked out of the after-school program in first grade, leaving me responsible for picking him up after school every day and staying home with him during the summer. This made working outside of the home difficult, which is a big reason I left my corporate job and began working as a marketing consultant.

The school was not helpful. They treated Ry as a behavior problem rather than helping us get answers to why he had these tantrums. We were called into the office weekly, and every time I walked away, I felt like a horrible mom.  He would melt down on the playground, and they could not get him back into the building. To the school administrators, it was a behavior issue, and I wasn’t doing enough.

I would ask about testing for Asbergers, now called Autism Spectrum Disorder, but the school principal and social workers would blow right past my questions. Ry was eventually put on an IEP program, but that didn’t help. Our school district's lack of support and understanding is another blog post. I now realized the school was more concerned with liability than helping children who didn’t fit neatly in their boxes.

As a result of these meltdowns, other children would pick on him. They didn’t understand him. They just saw this kid who wouldn’t talk and was crying all the time, which was probably hard for them to process.  It was hard to process as an adult, so I am sure it was for other children.

In the meantime, Ry stopped eating most foods. I absolutely love to cook and bake for people. It is my love language. I am very good at it, which is obvious by my waistline, and my husband’s weight, but Ry wouldn’t eat. He would no longer eat What he used to eat, flat out refusing to taste new foods. The only thing he would eat was processed food like chicken nuggets. He preferred frozen nuggets over homemade. He complained that the food didn’t taste right. Before you ask, yes, I did not give him options for other foods in these early days. I would make kid-friendly dinners, and that is what we ate. He would go to bed hungry, but he didn’t care. He didn’t like to eat. This is so strange to me because eating is my favorite pass time.

The problem then became not eating at all. Ry was incredibly underweight, and he was growing slowly. Eventually, I started feeding him anything he wanted because I just needed to feed him. He would eat fast food, chips, cookies, ice cream, and pizza. I can feed him fruit, but he won’t seek it out. I have to cut it up and put it in front of him.

As you might imagine, this affected how he performed in school. It was baffling because he absorbs information so easily and can have an entire conversation around some intellectual topic that I am amazed at his knowledge. So, why wasn’t he doing better in school? Although he could remember facts about space or science topics, he couldn’t remember his teacher’s name or the kid’s name that he played with at school that day.

In second grade, I learned he had Convergence Insufficiency (CI). This is where the eyes do not work together to focus on words or numbers. I found this out through his eye exam at the doctor’s office. The school did not know that his reading struggles had to do with his eyesight, even though they tested kids.

Yet, he learned well through audible learning. If you teach Ry something audible, he will pick up on it. He went through six months of eye therapy, which helped a lot, but still didn’t solve all his learning challenges. At this point, he was several grades behind in reading, mostly due to fluency or speed of reading, not comprehension. When he did read, he would comprehend and retain the information. I took him to tutoring two to three times a week to help him get caught up.

It is important to note that Ry did not have traditional behavior issues like hyperactivity or violent outbursts. I did not suspect he had ADHD, and I was correct. He was a calm child and struggled with hyper kids. He sat attentively, listening to his teachers. He was kind to the other kids. He was also overly sensitive to loud noise and chaos. Other loud children frustrated Ry because it disrupted his listening to the teacher.

He had one teacher, I think it was third grade, who was an awesome teacher, so incredibly kind to Ry, but her classroom was a disaster. It was completely unorganized, and children were out of control in the classroom. This was a huge problem for Ry. We limped along in elementary school, struggling each year and Ry falling farther and farther behind.

By the end of seventh grade, the bullying from other kids had gotten so bad, and the lack of help from the school, I decided to move him to online school, which Ry had been begging to do. During the winter of seventh grade, his father decided he was done with parenting and stopped picking Ry up.

We had 50/50 custody to this point, and every other Monday, Ry and I would sit in the living room waiting for his father to pick him up. There were no calls or explanations. Dipshit just stopped showing up. My son was heartbroken but relieved when his father stopped showing up. After about three months, it became normal, and we stopped anticipating him showing up one day.

Although in the back of my head, I wondered when he would show back up, which he did in January 2020. Dipshit started picking Ry up for visits for 2 to 3 hours on Sundays. They would sit around watching tv, then he would drive him home.

By the end of 2020, the visits stopped, and Ry refused to see his dad. I would later discover that his father mentally destroyed Ry’s self-esteem and confidence over the years.

When Ry entered eighth grade online, I had just started a new job as a senior interior designer for an architecture and engineering firm. Until then, I had either worked as a freelancer or part-time to accommodate Ry’s schedule. I was so excited that summer as I was finally returning to the office at a company with great opportunities.

In less than three months, I asked to go part-time, and within six months, I quit altogether. Now, there were other reasons related to a bad boss, but it came down to Ry and helping him get through school. He was unable to stay on task and complete the work without supervision. I hired a tutor to help.

You might be wondering about therapy. When Ry was young, I tried play therapy. Although Ry liked going and playing with the toys, we weren’t making progress other than understanding the dysfunction of Dipshit’s parenting style. When Ry started 8th grade, I also got him into therapy with a talk therapist. This also did not seem to help Ry.

Here is the thing about joint custody. Although I had joint custody on paper, I was Ry’s sole parent in every way. Yet, I couldn’t get Ry the mental health resources without my ex’s signature, which he repeatedly refused to give. This left me without options. I would call therapists and would get the same reaction. Without a court order, they couldn’t help.

Going to court with Dipshit was like poking a sleeping bear. I thought Ry was better off as long as Dipshit left us alone. Dipshit is a narcissist with a suspected borderline personality disorder. He had played mental games with me for years, which destroyed my self-confidence.

The idea of going to court was scary, never mind expensive. Remember, I did not receive child or financial support from his father. When we divorced, I made more than Dipshit at my corporate job. However, my income was no longer stable when I quit to be home for Ry. Yes, I called lawyers, but I just didn’t have the money.

Throughout these years, I blamed myself. I thought I was not a good enough mother. I wanted to work, but I struggled to keep commitments. I felt like I was constantly disappointing everyone around me. My friends, bosses, clients, students, and even my other son and husband. I would tell myself I would try harder tomorrow, and tomorrow ended just like the day before. I felt like no matter what I did, I still sucked.

When Ry seemed stable, I would ramp up my work either by getting more clients or taking on more projects, but then Ry would melt down, and I would have to drop everything to help him. My good intentions turned into failed projects and missed deadlines.

Early on, it became clear that Ry’s mental health was suffering. As time passed, his anxiety increased, especially in social settings, as did his depression. I couldn't figure out why my son couldn’t just be happy. I looked at life with a half-full glass view. I couldn’t understand why he couldn’t just look at life more positively. Little did I know that his brain didn’t work like mine.

School was increasingly hard for him. I started calling online school homeschooling light, but in reality, I was homeschooling him. I sat for hours daily, trying to help him finish his work. Apparently, I am not smarter than the average bear because even with two college degrees, I struggle to help him in his courses.

Unintentionally, by keeping him home, he was losing what little social skills he had. He no longer had friends and didn’t leave the house. He had zero self-esteem, often talking about what a terrible person he was or how he was dumb.

Over the years, I tried sports and other activities. We tried baseball, soccer, basketball, and archery. I made other suggestions, like piano, youth groups, and esports, but Ry would say no.

I hoped to get him back into the brick-and-mortar school every year, but he refused. The tantrums were shutdowns that would last for hours and were filled with self-hate. Hours that I would need to sit with him to ensure he was safe. Working was difficult for me because I lacked time and focus.

I tried to work every moment I could, but it wasn’t enough. I was also struggling mentally. It is hard to focus and be creative when consumed with your beautiful child that seems so broken. I felt alone even though I had remarried, I was alone. I didn’t want to share the problems with friends because I didn’t want to be judged. I didn’t want other people to judge Ry. It seemed when I did share something, everyone had an opinion on what I was doing wrong, or at least that is how I felt. Yet, no one suggested I might consider testing him for neurological problems.

My husband is a great guy. He is supportive and loving. But he traveled for work for years and was gone every week. Four days away from home and four days home. Sometimes it was only 2 days at home. Like me, my husband also had no idea how to help Ry. We were both baffled. In so many ways, Ry seemed so normal. In many other ways, I knew there was a deeper problem I hadn’t identified yet. I only wanted Ry to be happy and live a normal teenage life. To have friends and feel good about himself. But as time went on, I wondered if that was even possible.

When the pandemic hit, Ry was in high school, and things got worse as they did for many families. My father had fallen down in a Mcdonald's parking lot in early March 2020 and was rushed to the hospital. This fall led to a stroke and his death on August 11 of that year. He was hospitalized from March until the week before his death, so we could not be with him. I stood outside his nursing home room window and talked to him through the window. We eventually brought him home so we could be together for his last few days.

My father had always been my rock. He was that parent who attended every game, recital, and event. He was my cheerleader. He kept my softball stats and was the loudest parent yelling at my volleyball games. When he didn’t get better after the fall, and more parts of his body failed, I knew we were reaching the end.

I fell into a deep depression that summer, lasting six months after his death. Between my business taking a complete nose dive in one day in March 2020, to isolation due to lockdowns, and knowing I was losing the one person I could always count on, I was a mess.

My husband worked for a major airline and was losing his job that summer, which was scary, although luckily, he kept it at the last minute. Then our beloved dog, Ry’s best friend, died of cancer in November 2020.

I recognize that my 2020 is no worse than other people's. It did leave me devastated, as it did so many other families. Ry had become increasingly depressed as well. After months of being on wait lists for a therapist, we were put in touch with his current therapist through a friend of my older son. We felt blessed in July 2021 to finally have someone to help Ry. He was finally old enough to be accepted into therapy without both parents’ permission.

Unfortunately, it wasn’t enough. By January 2022, Ry was contemplating suicide. At this point, I finally had my business back on track. I had launched Behind the Design the previous September and had hired a marketing firm and a writer to help me. The business was gaining traction, and I was feeling great. I loved the work and was super excited about the direction I was heading.

But, for Ry, that wasn’t the case. My husband had taken Ry to therapy one day, and I was in a meeting when I got the call from his therapist telling me that we needed to take Ry to the hospital immediately. My entire world stopped at that moment. What had I done? Why couldn’t I help him? I was immediately thrown into a new reality with little hope. To hear your son is thinking of killing himself was absolutely heartbreaking. I called my husband, sitting in the therapy office's parking lot, and explained what he needed to do. I got in my car and met them at Children’s Hospital near our home.

It was determined at the hospital that Ry should enter into intense outpatient (IOP) therapy. They were reluctant to admit him since this was his first time. I was amazed that day at the number of children in the emergency room for the same reason we were there. (Again, a topic for another blog post.) An IOP is a program where the patient goes to group therapy for 6 - 7 hours daily, Monday through Friday. He would live at home but go to therapy all day. I was happy he would be home every night because the idea of him being in a hospital was too much for me.

Because our mental health programs are overrun with children needing help, we were placed on a waiting list for several IOP programs in Metro Denver. It took about 4 weeks to get into a program. At that time, I could not leave Ry alone. I locked up every knife, gun, and sharp instrument in the house. I also locked up Tylenol, Advil, and cold medicine. I did not leave Ry without supervision. If my husband I wanted to break, my older son would come to hang out with Ry.

The IOP program was six weeks long. After that, he entered a PHP program, three hours of group therapy three days a week. PHP is a partial hospitalization program. After that program, Ry seemed to be doing really well. It was the end of May 2022. He seemed more confident. The social aspect of these programs seemed to help him as well. He met a girl at the program and became interested in meeting others.

This new-found happier Ry was short-lived. That summer, we decided to spend a month at our cabin in the Smoky Mountains. We had purchased the cabin as a rental investment. We were also trying to purchase a second one there, so we would stay in Tennessee for July. I thought being in nature and experiencing something different might help Ry, but it didn’t. It had a completely different result.

Additionally, right before we left for Tennessee, Ry had heard from his step-sister that his father had sold the home Ry had known his entire life and moved in with a girlfriend. To this day, we have no idea where Dipshit lives. I am sure I could find out, but why bother.

After three weeks in Tennessee, Ry and I returned to Colorado, and four days later, he was hospitalized for severe depression. My life came crashing down in a matter of hours again. Late July 2022, I was making breakfast when I received a call from Ry’s step-sister telling me there was something wrong with Ry.

I wasn’t sure what she was talking about since he came down that morning and hugged me. I asked him if I could make him breakfast like I did every morning. He said no and returned to his room. After the call, I went to his room to find him completely shut down. He was hiding under the covers. I sat with him and tried to talk with him, but he wouldn’t respond. I rubbed his back and just sat with him. I wasn’t going to leave his side.

Unknowingly, he had also texted 911 for help while I sat beside him. Yes, you can do that, which I learned that day. As I sat with my son on his bed, the four policemen showed up on my doorstep. My husband had just returned home early that morning from Tennessee – he had driven while we flew – and was in the garage unloading the truck. He turned around, and there were the officers.

My husband came and got me. The officers asked to see Ry and would talk with me separately. They determined he needed to be taken to the hospital within three minutes for a 72-hour hold. This is where a person will be legally mandated to a hospital for 72 hours after a crisis call.

I can’t even begin to tell you how devastating that moment was for me. The officers handcuffed my son – for his protection – and took him away. Two officers stayed behind while I changed my clothes, gathered some stuff, and got in my car to drive to the hospital.

You may think how horrible the officers were to handcuff my son, but that is not the situation. The four police officers that came to my house were kind and respectful. The experience was emotionally horrible, but they made it easier by calmly explaining what was happening. They could quickly assess the situation, determining this wasn’t abuse, and take the best action to keep Ry safe. Something I was unable to do for Ry. For their professionalism, I will always be appreciative.

Ry was taken to the Children’s satellite hospital, five minutes from our home. He and I stayed in the ER for 36 hours while we waited for tests and assessments to be done. We also had to wait for a bed to open at one of the hospitals with psychiatric services.

Eventually, Ry would move to the main Children’s Hospital in Aurora, about a 45-minute drive on a good traffic day, more like an hour most days. Ry was given a Covid test in the emergency room, which said he had Covid. He had been sick in Tennessee and had Covid, but this was several weeks later.

So, the hospital isolated Ry for 10 days with 24-hour supervision. Someone literally sat in his room 24 hours a day. He eventually moved to the children’s mental health floor, where he received intense therapy. Although I did not agree with isolating him for 10 days and thought the Covid test was inaccurate, Children’s Hospital is amazing with unbelievably dedicated people.

I could visit him twice daily while he was in the hospital and call for visiting hours in the morning. Some days were better than others, but they were all hard. I was heartbroken. As you might imagine, I struggled to function. I sat and cried for hours. I would cry on the drive to the hospital, and I would cry on the way home. I struggled with sadness, followed by anger. I felt like I failed Ry. I hadn’t done enough to help him. I thought about every move I had made over the past 17 years and how I should have fought harder for Ry’s therapy.

During the previous IOP stint, my business came to a halt. I was still teaching at the design school that summer, but working on the business wasn’t possible. I let everyone go and just stopped, but I felt horribly guilty. I felt guilty for not managing the business. I felt guilty for letting students down. I felt guilty for not bringing in money. I felt guilty for Ry because I wanted to work. I felt guilty for failing my own dreams.

When Ry was hospitalized for three weeks, I realized I couldn’t work and could no longer teach as I needed to focus on Ry.

After three weeks, Ry was released and started the IOP program at the hospital. I would drive him to the hospital an hour away every morning and pick him up every afternoon for another three weeks. Ry could not attend school. When you are in therapy for six to seven hours a day, it is hard to focus on getting schoolwork done. The school did not understand this, and even though the psychologists at the hospital repeatedly told me and the school that Ry could not attend, the school still badgered me weekly. This just added to my stress and feelings of failure.

At the time, I was constantly beating myself up on what I had done wrong and how to fix this situation in the future. I was in a deep depression. I couldn’t focus and felt like I was in a fog. I couldn’t bring myself to get back to work. I told myself that work would wait and that I needed to focus on my son and family.

When Ry finished the IOP program, he was better. He applied for a job at Target and started working there full-time. We had discussed getting his GED and started taking steps to accomplish that, but by mid-October, he had decided to go back to the brick-and-mortar school to finish his senior year. He wanted to get better, and he wanted friends.

The online school’s principal made it nearly impossible for Ry to return to the brick-and-mortar school in our neighborhood. It is incredibly disheartening how public schools are unprepared or trained to handle children outside of the norm.

Luckily, we knew the principal from the local high school from my older son’s school days. The principal had been my son’s baseball coach and recommended him to a college on a baseball scholarship. Ry and I met with the high school staff, who were very nice and accepted him immediately.

In October 2022, Ry went to therapy twice a week after the IOP ended. After being online for four years, he returned to brick and mortar high school in January 2023. However, at this point, Ry is now a full year behind in credits to graduate, but with the counselor's help, we determined a plan to allow Ry to go another year of high school after the spring semester. This would give him a true senior year.

Overall, he was doing better, but progress with his depression and severe social anxiety was stalled. He was getting up, showering, and going to school every day, which was a huge improvement. But he wasn’t making friends and struggling to talk to other kids. He would come home every day exhausted. Finally, Ry’s therapist recommended we have him tested for autism. She suspected he may also have a communication disorder that prevented him from talking to other kids.

We were referred to an organization for testing called Horizon Neuropsychological Services in Littleton, Colorado. (They also have an office in Boulder) I highly recommend them. They were incredible to work with. They test for autism along with several other psychological disorders. The waiting list was four months long. Luckily, I received a call in early May that an open was available on Memorial Day. Not sure why they opened that holiday, but I jumped on it.

Testing included tests for Ry and me. It started with me alone meeting with the doctor for an hour to discuss Ry’s history, much of which I had sort of blocked out. Then on testing day, Ry sat with a doctor going through a series of tests that lasted for five hours. It also included me filling out tests similar tests.

A week later, we had a diagnosis. It took nearly 18 years to understand my son and why he acted as he did. Keep in mind my son was difficult at times, but most of the time, he was loving and kind. We spent hours together, and I am still always amazed by his thoughtfulness and intelligence. He is just the cutest damn kid.

The four days between the testing and the results were nerve-racking, as we felt very anxious to know the diagnosis. On Friday, June 2, I would sit at my desk on a Zoom call with a very kind doctor and hear that my beautiful and amazing son had autism and some other yet-to-be-identified communication problem.

I must have had a look on my face as the doctor asked me if I was okay once she was done explaining the diagnosis in great detail. It was a relief to finally have answers, but I was also incredibly sad. No mother wants to hear there is something wrong with her child. Not that there is something “wrong” per see, but his brain doesn’t work like mine. I am the ultimate Mama Bear when it comes to my sons. To hear that there was a disconnect of sorts in my son’s brain was a relief and a smack across my face all at the same time.

Why had I not tested him sooner? My gut told me that since Ry was very little, there was something different with him. I tried to find resources to help us, but I kept hitting brick walls. At that moment, I felt like I hadn’t done enough and had failed as a mother.

After the call with the doctor, I told Ry his diagnosis. He was physically happy. When I asked how he felt, he told me he was happy because now he knew he wasn’t a psychopath. My little boy thought he was literally a psychopath. With the diagnosis, he understood his brain just worked differently. It was like a weight had been lifted from his shoulders.

For me, I initially felt horribly sad. After talking with Ry, I curled up in bed and cried myself to sleep. I woke three hours later to a phone call from my stepmother, wanting to know the testing results. I called my husband, who was on a trip with his dad and brother that week. I let my older son know. And I sat with all my emotions on my couch, not moving for the entire evening. I scrolled through my iPad for articles about Autism, which made it worse. I digested the emotions and then went to bed, sleeping another 12 hours.

Waking up the next morning, I felt numb. I didn’t know how to feel. Over the following days, I realized all the struggles throughout the past 17 years made sense now. The tantrums, the tip-toe walking, the eating disorder, the depression, anxiety, all of it, were all signs. I knew signs were there but didn’t know what they told me.

As I write this, it has been two weeks since finding out my son has autism spectrum disorder. We have further testing to be conducted by a behavioral speech therapist to determine the unclear communication problem in the initial testing. However, Ry seems better. He seems to have accepted the diagnosis. I still can’t talk him into getting a job this summer or wanting to learn to drive, but he seems more relaxed and not so sad.

Horizon sent me a 30-page report and analysis with resources. The report also listed that Ry had PSTD caused by his father’s abuse and the bullying he endured in elementary school. That was hard to digest, as I felt, yet again, that I should have done more to keep Ry safe.

As I write this and reread it, I think about all the self-beating I have done to myself over the years. How I internalized all of Ry’s struggles as my fault. I cry as I write this. Rereading my words that detail how much pain I was struggling with to help my son. I realized there was a very good reason why my life, friendships, and work were so inconsistent and that I was not to blame.

This was not an easy situation, and no one had the answers. I needed to stop blaming myself for not being good enough. My family's struggles fell squarely on my shoulders, and it was and still is heavy – very heavy.

I have come to a more clear understanding of my son. I am still digesting the diagnosis, but Ry's behaviors make sense now. Ry will continue with his current therapist, whom he likes, but he will also have another therapist focused on autism. Interestingly, we did learn that Ry was highly intelligent, so I tease him he can no longer say he is dumb because I have facts showing he is indeed smarter than the average bear.

Along the way, I have been going to therapy, which has helped. My therapist encouraged me to share my story. She thought it would be therapeutic for me. It might help connect with other mothers who are also struggling.

Finally, in May, after trying several times to heal, I woke up one morning and realized it was time to get back to work. I logged onto my computer and started working on projects I had left undone when my world crashed last year. It feels really good to be back to work. It feels good to do something I am good at, and I can feel accomplishment through doing it. I also purchased a ton of books on autism. The one I am reading now is helping me understand how my son feels, as it includes letters from autistic adults stating what they wish their parents had known. I also want to connect with other mother’s going through similar challenges. If you have a great resource, please let me know.

In conclusion, I hope my story will help other parents. I could dwell on what I should have done, but dwelling won’t help my son or me. Moving forward, I am focused on healing and giving the support to help Ry recognize his strengths and live a happier life.

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