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You'd get Lost Inside my Head

Writing this story will probably be the most difficult, but with my sister’s permission, I feel it is necessary.

The day my sister told my family that she was pregnant was nothing short of an emotional rollercoaster. I remember being nervous but excited for her and the day my sister delivered my nephew, my life was forever changed.

He was so adorable with chubby cheeks and big, bright eyes. I have a picture of him cuddled in my arms at only one day old with a smile on his face. I remember coming home from nursing school and cuddling with him on the couch every day. Everything in my life switched from being about myself to being revolved around him. And I was absolutely okay with that.

When he first started talking, he couldn’t quite say my name and when he would try, it sounded like ‘Mimi.’ So to this day, aunt Mimi has stuck! He would say ‘love you Mimi’ and my heart would explode. He’ll never know how much I love him, and I couldn’t explain it no matter how many words I use.

At such a young age, he was so smart. Like, insanely smart! You could tell him something one time and he would remember it forever. Even at only three years old, he could name all of the planets and everything about them. He could name every type of car. Memorize every song he heard after only hearing it once. To this day, it amazes me how smart this boy is. He will randomly come up to me and say things like “remember when we went…,” “remember when we did…” and it blows my mind because some of the things he will say had happened when he was two or three years old! I’m not sure I’ve met many people who could remember things from that far back!

I first started noticing my nephew’s hyperactivity and impulsivity at age three. He had a hard time being interrupted, being told what to do, completing tasks, and building relationships. His sweet heart is so sensitive and his feelings get hurt so easy. For being so young, he takes on the weight of the world and his anxiety is that of an adult.

Let me tell you, working with children with behavioral and mental health disorders is one thing; seeing a family member struggle with it every single day is another.

Working with these kids every day is hard, and as much as I hate to say it, sometimes you become jaded. You develop an inappropriate sense of humor; coping skills to deal with the hard days. It’s not as easy when it’s your nephew; watching him struggle breaks my heart over and over again.

He was around four years old when he first started throwing his tantrums. Every little thing would trigger him. You could look at him and he would be mad. You could say the wrong thing, ask him to pick up his toys or eat his food or turn the TV off. Simple requests that could be easily completed turned into hours of angry outbursts.

First of all, ADHD is a real thing. When it first became a diagnosis, providers everywhere started giving the diagnosis to any kid that couldn’t sit down for more than an hour or to a kid who wouldn’t do exactly what they were told to do the first time. Medication was tossed around to kids who didn’t truly need it and who didn’t have a real ADHD diagnosis. It is not as common as it once was because now we have more research and knowledge in regard to proper diagnosing. If you think that a kid that isn’t listening to their parents or isn’t focusing in school automatically has ADHD, you’re wrong. If you’ve provided care for or know someone who has a true ADHD diagnosis, you know exactly what I'm talking about. There is a clear difference in a child who choices not to listen versus one that cannot control it.

The brain processes in a patient with an ADHD diagnosis is complicated, but put in simplest terms, there are multiple malfunctions in the brain circuits. Dopamine and norepinephrine are out of whack and need to be regulated. I wasn’t going to go into much detail about this, but I just changed my mind! I think that everyone needs to know how complicated this process is and what is actually going on in the brain. Maybe then you’ll understand why these kids do the things they do and act the way they act.

1. Ineffective information processing in the dorsal anterior cingulate cortex. This can cause the trouble concentrating.

2. Ineffective orbitofrontal cortex function. This is linked to the impulsivity and hyperactivity.

3. Ineffective functioning of the cortico-striato-thalamo-cortical loop. Issues here can cause the inability to maintain attention for long periods of time.

4. Ineffective functioning of the dorsolateral prefrontal cortex. This can lead to symptoms of inability to follow through with tasks, losing things, and disorganization.

5. Ineffective activation of the dorsal anterior cingulate cortex leads to forgetfulness, decreased attention to details, and not listening.

6. Inability to activate the prefrontal cortex which is responsible for performing tasks that require sustained attention and executive functioning.

Sounds complex, right? Well, that’s because it is. And then we wonder why these poor kids get overwhelmed and act out and can’t focus or follow through with tasks. We expect so much out of children these days. For a child with normal brain development, being asked to sit still or focus on one thing for hours at a time is literally insane! Imagine having all of this going on in your brain, being a kid, and still being expected to perform without any difficulty. It’s not a thing.

What is even worse, is that these kids are being punished for something that they are unable to control. People get frustrated and impatient and trust me, I understand. It gets exhausting and overwhelming and we are all human; we get tired and mad and overreact. I’m going to talk in a few weeks about parenting techniques and ways to better help these children.

When my nephew started kindergarten, things took a turn for the worse. Not only does he have the inattentive part of ADHD, but also the severe impulsivity and hyperactivity. (You don’t have to have both for an ADHD diagnosis.) On top of his ADHD diagnosis, he also has anxiety and depression. Combining all of this in the brain of an adult is chaos; imagine combining all of this in the developing brain of a child.

It’s not fair.

He had a hard time in school. There were too many people with too many rules and not enough free time. He was forced to sit in a chair for hours at a time and pay attention to things he already knew. Like I said, he’s ridiculously smart. Not only did this trigger his ADHD but also his anxiety. The kids in his class could look at him the wrong way or say the wrong thing or not want to play with him or use the color crayon he wanted, and he would instantly be triggered into an episode of anger and impulsivity. Yelling, cussing, throwing chairs, hitting people. After incidents like this would happen, he would cry and cry and cry. He’d apologize over and over again, saying that he didn’t mean to.

The teachers had a hard time handling him during these episodes and for awhile he was placed into a special class with only a few other kids where he could get more one-on-one attention. This really seemed to improve his overall school outcome and after a while, he was able to try to transition back into the regular classroom. He did okay with this for a while, but he still could not focus on his schoolwork and was still getting in trouble for constantly yelling and being impulsive.

This wasn’t only at school; it happened everywhere: home, the grocery store, restaurants. Even on days when we were doing something fun like going on vacation or trips to the park, little things could set him off and he would go off in a rage.

I hate typing this out because it makes me rethink things that break my heart and make me cry. However, I want people to know what ADHD really is and what it looks like. It’s not just being unable to pay attention or being too talkative. It’s a legitimate inability to control the prefrontal cortex of the brain.

I want to tell you a situation that happened with him when he was five to help put things into a little bit more of a perspective for you.

My nephew would stay all night at my house a few times a month and would come over during the week to visit. My husband and I would always take him to dinner and the movies and to COSI. We love being able to spend time with him and for the most part, he was able to control his emotions; until he wasn’t.

One thing that his anxiety had always forced him to struggle with was transitions. Going from one place to another without any warning would instantly scare him and cause him to panic and in turn become impulsive. You couldn’t tell him, “hey, get your shoes on. We are leaving.” You would have to give him a warning. “In five minutes, we are going to do this. When the big hand gets on the six, it’ll be time to do that.” Once we were able to figure this out, things got a little easier in the sense of having to leave the house to go somewhere.

So, my dad came to pick him up from my house one day after he had been visiting with me. We were playing outside and eating snacks and listening to music while we ran around in the backyard playing tag and nerf guns. He had been so great with my husband and me that entire day. No meltdowns. No yelling. No cussing. He even helped me pick up the toys when I asked him to (after multiple prompts to do so, but hey! He still did it!)

When my dad walked in, my nephew was instantly infuriated. “What are you doing here!?” He yelled at my dad. He knew that he had to go home and he did not want to. Obviously, he was having fun.

My dad asked him to calm down and tried to give him a hug and ask him how his day was.

My nephew instantly started hitting my dad and crying.

When I asked him to put his shoes on so that he could get ready to leave, he started crying louder and cussing at me. “You’re a bitch aunt Mimi!” It wasn’t the first time that he had called me that during one of his episodes and I’d been called every name under the sun in the years of working in mental health, so I wasn’t phased at this point.

I told him that I could pick up the toys and all he had to do was get his shoes back on so that my dad could take him home. He wasn’t happy with that either. He said he wanted to pick up the toys by himself. So we said fine and waited while he picked up the toys, but shortly after he started to pick them up, he started throwing them across the room and cussing again. He started to put holes in the wall from the things he was throwing so, not for the first time, I wrapped my arms around him in a restraint and sat on the floor with him. He bit me and ran out of my arms into the kitchen. He grabbed a butter knife out of the drawer and threw it at me. When he realized what he had done, he started screaming and crying even louder. I ran over to him and picked him up. I sat him on the couch with me, with my arms wrapped tightly around him, reminding him that he was safe. After hitting and pinching and biting me again, he finally relaxed into my hold and closed his eyes.

“I’m so sorry, Mimi. I’m so sorry,” he cried. I did a good job of holding myself together, until he left. I went upstairs and collapsed into my husband’s arms and cried for what seemed like hours. I cried myself to sleep that night because my heart was so broken for him. It was just like the kids I was caring for in residential. This couldn’t be happening to my nephew. It just couldn’t be.

This happened multiple times within a few month period. When I was with him, I would hold him in my arms while he kicked me and hit me and pinched me, until he was able to calm down.

He had a really bad day at school and had to be picked up. My mom called me crying and my sister called me crying shortly after. Everyone was at a loss with what to do. I went over to my mom’s house to see how I could help. When I arrived, my nephew jumped up and hugged me. He was laughing and talking so fast. I couldn’t understand a word of what he was saying. A few minutes later, he was throwing things across the living room and hitting my sister. My sister went out to her car and cried as I did my best to calm her and my nephew down.

After he finished hitting her, he asked to take a bath. I hoped this would calm him down and ease his mind a little bit. However, I ran his bath for him and when he got in and started talking rapidly again, I wanted to cry. I could tell that something wasn’t right. He was acting out of his normal, even for him. He was splashing water out of the tub and standing up and sitting down over and over again. He was so restless, but he was laughing and laughing and making up songs. When he would laugh, I would ask him what was so funny and he’d yell at me to shut up and throw shampoo bottles at me. 

After he got out of the tub, I went outside to check on my sister who was still sitting in her car, crying.

It’s an awful feeling: hopelessness. I have worked with so many families of children with ADHD who have the same struggles. They try so hard to understand their child’s mind. They try to keep them safe. They try to help decrease the impulsive behaviors. When you have a child with a mental health disorder, your world can seem hopeless. Every day can be a battle and you can only battle for so long before you lose it.

When my nephew came outside, as I was still talking to my sister, he was crying. He jumped into my arms and put his head down on my shoulder. I wrapped my arms tightly around him and swayed back and forth. I told him I loved him over and over again as I cried with him.

“What do you need right now, baby?” I asked him as he continued to rest his head on my shoulder.

“I need to go to the doctor,” he said through his tears.

“What do you need to go to the doctor for?”

“Something is wrong with me.”

“What do you think is wrong with you?” I asked him, trying to sound braver than I felt.

“I feel weird. Like my insides are weird. My brain is messed up. It’s not working.” He lifted his head up from my shoulder and looked in my eyes. I had never felt so helpless.

It’s one thing working with these kids and their families and providing safety and education. Giving them information and sending them home to try it on their own. Holding my nephew in my arms, looking at him like this, changed everything about the way I practiced as a nurse.

“My brain is really fast all the time, Mimi. I can't focus on a lot of things. You’d get lost inside my head.”

I had never cried so much in my entire life as I did that night.

He started going to therapy after this episode and was put on medication. That process in and of itself is difficult and a lot of trial and error.

At seven years old, he is now functioning in a normal first grade classroom. He has a few days here and there were he struggles in the classroom with his impulsivity and anxiety, but he has so many more good days than bad.

He cannot be in crowds, and he knows it. When he is, his anxiety shoots through the roof and the impulsivity emerges. But, with the combination of meds and therapy and a loving family, its allowed him to be able to express himself and explore his emotions. He is now able to recognize when he is starting to feel sad or anxious or mad. He’s able to walk away from situation where he would have normally been sent straight into an episode of anger and tears. He has friends at school and is doing well academically. He plays baseball and does karate and cub scouts. He loves his family and feels everything so deeply.

He has the mind of an adult when it comes to his anxiety. He worries so much about things that a child should never have to worry about. He gets his feelings hurt so easily and constantly wants everyone to be happy and wants to include everyone in everything. Some of the trouble he gets into in school now is often because of bullies. He’s said that he sticks up for the other kids when people are mean to them and honestly, I couldn’t be more proud of that.

Every day we move forward and hope the day is better than the last. We provide safety and encouragement and love. We allow him his space when he needs it and a cuddle when he feels scared.

Mental health disorders in children often follow them into adulthood. Sometimes they get better because you’re able to learn coping skills and your brain copes as it continues to develop.

But you have to get treatment! You have to get help for these children so that they can function.

There are so many days when he still looks at me and says that no one understands the way his brain works or that “you’re lucky you’re not inside my head; you couldn’t handle it.”

I know that his future is bright because of the love and support he has and the fact that we will never let him fail. We will continue to pick him up when he falls down and try again and again and again until we get it right.

He’s changed my outlook on the way I provide care for these patients and their families. The amount of empathy I feel for them is vast and I adore this population more than anything. So many people get impatient and overwhelmed when helping these kids during their episodes and I know it is not easy. Every time I feel overwhelmed, I remind myself of my nephew and the look in his eyes when he told me for the first time “you’d get lost inside my head.” It’s then that I am able to put a smile on my face and continue to provide a caring approach for these kids and their families.

Throughout my career, I have done extensive research on ADHD and behavioral issues in children. It is through this research that I like to think I have developed great methods for helping them and their families and hope that I can continue to be able to help them live the best life they possibly can.

My nephew will forever be my favorite little boy and I love being able to watch him grow and improve every single day. He is the definition of strength, love, and perseverance. He will always have a special hold on my heart.

Mental health disorders are real. Don’t be afraid to seek help for your child!

If you think your child may be suffering from a mental health disorder, please, reach out and I will help in every way I possibly can. I promise, you are not alone.

Stahl, S. M. (2013). Stahl’s essential psychopharmacology: Neuroscientific basis and practical applications (4thed.). Cambridge University Press.

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