Most recently, I was chatting with someone who knows my son is autistic. Kindly, the person asked, “How is your son doing?” and I responded, “Well, we have our challenges. I guess it depends on what happens throughout the day.”

The person said, “Well, he looks okay.”

This made me think, Hmmmmm.

I was at a loss for words. Frankly, I wasn’t sure how to take this: a compliment, a statement due to lack of knowledge, or maybe the person was uncomfortable in our conversation and just said this out of kindness.

The one word to describe my son is: unpredictable. I never know how he is going to react at any given moment. There were many times when I thought he would love to see this or that, and it turned out that he hated it for some reason. Or I thought he might have a problem with this, and he didn’t. I never know.

My immediate response to the conversation was, “Well, you haven’t seen him during a meltdown either.”

How am I supposed to respond to a comment like this? I have heard the following statements before:

“He looks okay.”

“He doesn’t look autistic.”

“He seems social.”

“He seems normal.”

“I would have never thought he was autistic!”

It won’t be the last time I hear something like this. I did not know how to respond to this statement because, in my mind, autism doesn’t look a certain way. Maybe my defenses are always up because we are constantly judged everywhere we go. After all, I never know how my son will be in a specific situation.

So what should I say in the future?

How Should I Respond Regarding My Autistic Son When People Say, “Well, He Looks Okay!”? was originally published in Life is ALWAYS an Adventure! on Medium, where people are continuing the conversation by highlighting and responding to this story.

I have written about my son having open heart surgery when he was born.

He we are, eleven years later and he will need another open heart surgery. He has been ill since Easter, and all the memories come flooding back while living at Children’s Hospital.

I tell myself, This time it is different. He is older. He will remember this procedure. What will happen afterward? How will autism play into all of this?

I have a million thoughts going through my mind daily because, let’s be frank: Life still goes on. Even though I am stuck in my head with my emotions, it is hard to move one foot in front of the other.

What about the rollercoaster ride of my emotions?

Fear and anxiety have come to the forefront. What if I lose my son? The constant thought and the worst fear enter my mind daily.

There are moments where I tell myself; Yes, he needs this surgery to live, and we will plow right through this. Let’s do it!

Yet there are moments when I also tell myself; I can’t do it again! I am not strong enough!

There have been lots of tears. Lots of anger. Lots of fear. Lots of love. Lots of support. Lots of uncertainty. Lots of exhaustion. Lots of hugs.

Prepping for my son’s surgery, I have asked myself the following questions (to name a few):

1. Who is taking care of my daughter?
2. What bills need to be paid?
3. Do I need to go to the grocery store?
4. Did I sign the permission slip for my daughter?
5. Did I return the library books?
6. Did I respond to that email?
7. Did I cancel piano lessons?

Life goes on and doesn’t stop……

How can I prepare myself for my son’s open-heart surgery? How can I go through all of this AGAIN?

The quote from Winston Churchill pops into my mind, “If you’re going through hell, keep going.”

My son’s surgery is scheduled for Tuesday, May 16.

How Do I Prepare For My Son’s Open Heart Surgery? was originally published in Life is ALWAYS an Adventure! on Medium, where people are continuing the conversation by highlighting and responding to this story.

It is funny how life always throws curve balls. Last fall, I remember telling my husband, “I have decided to dive into my writing. I am committing, and I am diving in head first.”

My husband looks at me and says, “Sure. If that is what you want to do.”

It has always been “something” that I wanted to do. To write children’s books, to write about my life with my autistic son, and to write anything that brought me fun and excitement.

I joined Medium in 2021 and wrote a few essays here and there. But I started writing children’s books back in 2014. I mainly wrote stories with my son in my mind. He was just a toddler then, and I worked a full-time job. I told myself, “I won’t commit to a writing schedule, just whenever I have time.”

And boy, was I kidding myself. There is always enough time in the day to write IF you commit to it. The writing was never my top priority. Writing became nonexistent.

My husband got sick in 2015 when I was pregnant with my daughter. Who would have thought he would be unhealthy for three years? And then, in 2019, my son had two heart catheterizations. Of course, no one forgets the memorable year of 2020, and I was doing virtual learning with my son, taking care of my 4-year-old, and having my meltdowns.

My son and husband’s medical issues made 2021 more cautious, but I finally could “take a breather from life.” I believed it was time to write again. Writing for me became more of a healing process, reflecting and writing about ALL that has happened in my life, a way to process all of the “pent-up emotions.” Writing became cathartic. It was never to be published.

During this time, I joined a writing class and was encouraged to publish my writing. I was told, “You have a voice, and it is a crime not to share with the world.” I was encouraged to start a blog to help unravel the fear and anxiety constantly walking with me on this journey.

When I had a hiatus from life, I had the momentum to write, but something in my life would prevent me from fully diving in. Then the fall of 2022, I told my husband, “The kids will be in school. This is a great time to start writing again.”

And then my son broke his arm. So all of the mornings I thought I would be devoted to writing DID NOT HAPPEN! I had to take my son to the orthopedist, and I quickly realized that writing takes a backseat to motherhood.

In February of this year, I had one goal: to start a blog. In reflection, I gave myself a pat on the back because I wrote a few essays, which was something for me to focus on, and I created a blog! So I took the nose dive and committed to posting weekly to my blog. “Finally!” I said to myself. I will do it, get those children’s books published, write essays and have fun. Finally!

I felt committed and excited and wanted to have fun with my writing. I was in full swing, and the momentum made it easy to post weekly, and then BAM, my son has been hospitalized and is very ill. So I lost speed again.

I must admit that while spending many nights in Children’s Hospital, I thought maybe I should give up writing, and even convinced myself that writing was not a priority. Hang up the towel was a constant thought.

But how do I tell the young girl inside me to forget the magic? Forget the tug in my heart when walking into a library? Forget the excitement when I open a book reading to my daughter? The light inside of me is dim, but it still exists.

Life happens constantly, and I don’t know how to write during the highs and the worst storms.

And so what should I do now? And when will the momentum return?

My Writing Has Lost Momentum — Again was originally published in Life is ALWAYS an Adventure! on Medium, where people are continuing the conversation by highlighting and responding to this story.

We have been waiting one year to get a mobile therapist into a home. We have been wait-listed. Like other families, there is a shortage of staff post-pandemic, and who knows when services will begin. The mobile therapist was to help with my son’s anxiety when the school bus dropped him off at the wrong location. He became so anxious and fearful of being alone and tried to confine me to a room in our house. He said, “I must know what room you will be in.”

I became so frustrated because he wouldn’t go outside and play in our yard, go to the mailbox himself, or even be upstairs in his bedroom alone. He became so fearful, and we thought the mobile therapist would help him in these moments. He was not like this before. It was like we took three steps backward.

Because of the waitlist, I found a therapist to “bridge the gap” until the mobile therapist arrived. I didn’t know we would be here a year later. We met the psychologist several times, and she recommended my son take Ritalin for his ADHD.

I am aware that under the umbrella of autism, ADHD is ubiquitous. Our son has ADHD but is not officially diagnosed because of autism.

I told the psychologist, “I know my son has ADHD, which is common with autism. But why are you recommending Ritalin?”

She replied, “I think we should treat his ADHD as a separate entity.” I had my son’s teachers fill out the Vanderbilt questionnaire. And the psychologist rated him and said, “I think we should start to give him Ritalin.”

It was an interesting discussion to have. As we have met other people along the way, I have never had this discussion before. And I thought, why now? Why treat ADHD separately?

Frankly, I wasn’t sure if that was the right solution. My son cannot verbalize the side effects he may be feeling. I wasn’t sure that this was a great idea. But I want my son to have the best life possible; maybe this is a solution to help him.

I went to his pediatrician (because the psychologist cannot prescribe Ritalin) and had another conversation, knowing he also has a cardiac condition. The doctor said, “We could try it and see how it helps him. But I also want you to know that Ritalin may not be the right drug. We will have to see if he has any side effects. We could switch to another drug, but we will have to worry about his blood pressure knowing about his cardiac condition because increased blood pressure can be a side effect.”

As a middle and high school teacher, I know many kids have taken Ritalin or Adderall. They take medicine in the morning, become zombie-like, and bounce off the walls by the afternoon. It was apparent to see how the treatment changed these kids. This is not normal, and I even spoke my concerns to their parents about it, but nothing was done.

I have read about the side effects of Ritalin or Adderall and how it affects current college kids. They take Adderall (without an ADHD diagnosis) to focus and study, which can lead to other addictions. I have also read that in the past decade, there have been many overdiagnoses of ADHD in children.

I told the doctor, “I don’t want this medicine to change the essence of who he is.”

Her response was clear, “Yes. I agree. Because he is not neurotypical, we will want to try to help him if we can.”

So the doctor wrote a prescription.

In the meantime, I met with another child therapist who has an autistic son as well. She was absolutely against my son being on Ritalin. She said, “Don’t be nice!”

I said, “What do you mean?”

She said, “You are the advocate for your son. You will meet many idiots and incompetent people along the way who don’t even know about autism. I have been a child therapist, a nurse, and a social worker and have been doing my job for 41 years. I know what I am talking about. I left my son’s psychiatrist’s office and said, “You don’t know what you are talking about, and I won’t be paying my copay. Thank you.”

I loved her don’t-beat-around-the bush- attitude, yet she seemed jaded.

She continued, “Few people worldwide are considered autism experts. I know what I went through on my journey with my son, who is now 21. Doctors should not be prescribing this medication, only psychiatrists. I am not putting doubt in your team. However, doctors are spent, and I am sure your pediatrician is wonderful, but she spends only so much time with your son. Does she know about his ADHD? Did your son’s teachers say anything to you? And why would someone prescribe Ritalin when your son has a heart condition? Don’t make assumptions. Not all teachers and doctors are autism experts, and don’t be nice!”

Jason and I decided not to give him Ritalin at this point in his life since he is only ten years old. But as a parent, I question if I am doing the right thing. Our primary concern is giving him this medication with his heart condition. I would love for my son to decide if this is the right path as he ages, but I know he may be unable to communicate this. So at this point, we will focus on his heart and not have to worry about the side effects of ADHD medicine.

This drives us to research whether autistic people take Ritalin to treat ADHD as a separate entity.

And so, the journey continues.

Should My Autistic Son Be On Ritalin? was originally published in Life is ALWAYS an Adventure! on Medium, where people are continuing the conversation by highlighting and responding to this story.

As a parent of an autistic child, I have always wondered why my son is so tired. He cannot tell me WHY he is tired, but I continually hear him say, “I am tired.”

With my son’s congenital heart defect, we were told by his cardiologist, “He will always have fatigue.” If I remember correctly, his pulmonary valve was like a swinging door allowing blood to return to the heart instead of being oxygenated. So he had a Melody valve replacement, which we thought would decrease his fatigue. But this has not happened.

He cannot keep up with other 10-year-olds in his gym class. He gets winded easier, and we were told he would have exercise intolerance due to his body building up lactic acid very quickly compared to a healthy 10-year-old.

At first, I thought his heart condition caused the fatigue, but now I think it may be due to his autistic brain processing ability. But he cannot tell me this. Thank you to Catherine Londero’s story “Processing Time Helps Neurodivergents Cope with Change,” which makes me wonder if my son’s brain is in constant overdrive with “processing time,” which drives his fatigue.

I get flustered when trying to understand my son’s brain. I asked him, “Can you explain how your brain works?” He responded, “My brain is at full power.” But I don’t understand this because he cannot tell me what this means exactly. So when I asked him, “Why do you feel tired?” He will say, “I don’t know.”

Communication with my son has been challenging. This is why the meltdowns occur; he cannot communicate the problem at THAT MOMENT and will break down. We have worked with him since age 5, where meltdowns were 90 minutes or the evening when he shot because something happened at school that he could not get past.

Now we are in a place where his meltdowns could last less than 10 minutes. However, I received notification from his teacher that he had a breakdown at school which lasted 40 minutes last week. He is unpredictable. What frustrates me the most is that I want to help my son. But I do not know how because he cannot convey what he thinks or feels that makes sense to me.

So will I ever know what drives my son’s fatigue since he cannot communicate the information I need? For me, it is like a puzzle. I ask questions (which my son hates) and try to come to some hypothesis. I read and try to connect with others and hear their stories, wondering if maybe what is happening with them is happening with my son, and then I came across Catherine’s article.

I have come to accept that my son may NEVER be able to communicate in a way that I understand him. And so the journey continues.

To read Catherine’s story, I have copied and pasted it here.

http://jeetwincasinos.com/neurodiversified/processing-time-helps-neurodivergents-cope-with-change-f44e1b18a094

Why Is My Autistic Son Always Tired? was originally published in Life is ALWAYS an Adventure! on Medium, where people are continuing the conversation by highlighting and responding to this story.

I didn’t think my daughter would be in love so soon! She is in first grade and will be turning seven soon. So she and our neighbor are in the same class and love to play together, and Lucy asked, “Can I have a playdate with Finn?” I said, “It is tough during the week, with after-school activities, homework, dinner, and so on.”

Last Friday, she didn’t return from the bus stop. I was cooking in the kitchen. Usually, my son and daughter will walk back together from the bus stop. So when my son came to the door, I asked, “Where is Lucy?” My son said, “I am not sure.”

Then panic ensued. I didn’t know where she was. I grabbed my phone and was about to call all my neighbors when suddenly I looked out the window and saw her coming up the street.

When she arrived, I asked her, “Where were you? I was scared. I didn’t know where you were!”

She said matter-of-factly, “Well, I decided to walk Finn home. He was feeling sad today.”

Meanwhile, I was amazed by her independence that she took it upon herself to walk him home so that he would feel better. I told her it was okay to walk Finn home, but she had to tell someone where she was going. A plan was in place.

The other day, she sent our neighbor William to the door. William said, “Well, your daughter will be late. She is walking Finn home again.”

I thanked William for the message and wondered what she said to William so I would get the news.

When Lucy arrived home, I told her I was glad she had told someone where she was going. Then she said, “Finn’s mom said I could come over in thirty minutes for a playdate.” I said, “Well, let’s get your homework done!” But the homework took a lot longer, and Finn showed up at the door.

Finn asked, “What is taking Lucy so long?”

Lucy said, “Finn, I am almost done, and then I can come over!”

Finn said to Lucy, “You can do it!”

He encouraged her and helped her finish her math homework. After she completed her work, they were out the door!

One hour later, I got a text message from Finn’s mom.

Finn is walking Lucy home.

When they arrived, she wanted to give him a snack. The next thing I know, she is outside without a coat. I told her, “You don’t have a coat on, and it’s cold. What are you doing? Come in the house!”

She said, “I had to tell Finn I love him!”

And she went on, “Yeah, we are in love with each other!”

I broke the news to Jason. I said, “Our daughter is in love!” Jason responded, “I didn’t think I was going to have this conversation until she was a teenager!”

I love to watch them play together and hear their conversations; how innocent they are. They get along really well and have fun. So that night, I asked Lucy, “What do you like about Finn?”

She said, “He is kind to me!”

I hope she doesn’t forget this when she starts to date, but I am glad that she can express her emotions to me and be rather frank about how she feels about Finn.

And then Lucy asks, “Can I play with Finn tomorrow?”

My 6-year-old daughter is in love! was originally published in Life is ALWAYS an Adventure! on Medium, where people are continuing the conversation by highlighting and responding to this story.

After my son was born, I was able to hold him for two minutes, my husband was able to hold him for two minutes, and then he was transported straight to Children’s hospital, awaiting open heart surgery. We discovered my son did not have a pulmonary artery during a routine ultrasound when I was 33 weeks pregnant.

After birth, I became very emotional when I had to sign a form acknowledging that the ambulance could be involved in a potential car accident while they were transporting my son. In other words, I felt helpless, and of course, I felt fear of losing my son.

Since I had just given birth, I could not leave the hospital and go straight to Children’s hospital. I needed to recover, but more than anything, I wanted to be with my son.

I remember telling my husband, “Don’t worry about me. Go and be with our son!”

So my husband left with my in-laws and went to be with our son. When I was finally released from the hospital, I told my husband I wanted to go straight to Children’s Hospital. I did not want my son to be alone.

It became an emotional rollercoaster ride while we stayed at the Children’s hospital and practically lived there for six weeks following his birth.

There were many days that I cried uncontrollably. I had a lot of support from my family and friends, but ultimately I felt there was no one to turn to. Nobody could comfort me because I did not know how to be settled. I was only focused on my son. I was in survival mode. Many people said, “Let me know if you need anything.”

But I didn’t even know what I needed. I was a mess full of emotions. I became a new mother and felt I should be taking care of my son, not the nurses in charge. I felt guilty that my son was “alone” at Children’s. And yet this constant feeling of “not-knowing” what would happen with our son. The fear and anxiety set in, and I was in a vicious cycle. I was stuck because I did not know how to get out of this cycle.

After his first open heart surgery at nine days old, the procedure took roughly nine hours. I was in emotional agony, waiting for updates and hoping that all went well. I suffered physically since my tailbone was fractured due to giving birth. I constantly cried in the waiting room, afraid I might lose him on the operating table. And, of course, I was leaking milk the entire time; my body was adjusting to becoming a mother.

I met multiple doctors and could not remember their names, and ultimately felt numb. When my son was finally released, I decided to meet with a therapist on how to handle this constant fear and anxiety about my son. I went to a therapist who explained that I had experienced trauma and ultimately diagnosed me with Post-Traumatic Stress Disorder.

I remember that I felt very alone too. My husband went back to work. I was alone at home with many appointments and dealing with upcoming catheterizations and another open heart surgery three months later. The cardiologist told me, “We are not out of the woodwork yet.” And yet everyone else went back to their lives. But I didn’t. I couldn’t. I didn’t even know where to begin.

My son was not recommended to go into daycare due to the risk of infection. We had to inject daily anti-rejection medicine into his leg. So ultimately, I was off work for about ten months.

The road and hurdles have been plenty since he was born. We had thought he only had a physical ailment, but at age five, he was diagnosed with Autism. Every year around his birthday, I become very emotional and believe I have not entirely handled all the upheavals that have risen since my son was born.

When I decided to see a therapist, I sought ways to deal with the fear and anxiety that I may lose my son. The therapist told me to do the following:

1. Deep breathing
2. Write a gratitude journal.
3. Take a walk in nature.
4. Surround yourself with support from friends and family.

This did not work for me!! This did not help me when I was in a constant loop of upcoming procedures. I wanted someone to tell me, “This is how you remove fear and anxiety, do this!”

But those statements never came. I was alone, trying to figure out my emotions and a new identity for becoming a mother.

The advice from people didn’t help either. Here is what I heard:

1. “We have excellent medical technology today.”
2. “I am sure that God would not take your son.”
3. “Take one day at a time.”

People are trying to be helpful, but this was not helpful.

I know now that my son will be eleven in May, and these emotions will never go away. How can you ever let go of the creeping thoughts that my son will be on the operating table sometime in the future? They can be subsided, and I can change my focus, but they will never disappear. It is part of being a mother, never wanting to lose a child.

I have seen another therapist but was told to do the same thing. You have to find the right therapist. I have not found that person. And currently, I am not looking.

This is an ongoing journey with my son. And if the day comes, I will gladly embrace seeking another therapist. Until then, I will continue my journey of healing.

When I was diagnosed with PTSD was originally published in Life is ALWAYS an Adventure! on Medium, where people are continuing the conversation by highlighting and responding to this story.