A Transparency in Mental Health

A Transparency in Mental Health 

Parents openly share things about their children. “My daughter made the honor roll again!” “My son’s baseball team won!” “My boy is enlisting in the NAVY!” “Sarah got her driver’s license!”

We even hear some of the negative things that occur. “I just feel so bad for Dillon. He’s being bullied at school.” “Cara broke her arm swinging from a tree today.” “Thank God he’s going to be okay, but Tyson wrecked his car today.”

And although it pains us to hear it, we offer sympathy after parents share medical issues that their children are facing. “John tested positive for Influenza.” “My daughter has Leukemia.” “Donny has been referred to a pediatric cardiologist.”

But what we don’t hear is, “My child has Schizophrenia.” With the growing prevalence of children being placed on the Autism spectrum, more parents are becoming open about freely discussing their experiences with Autism. The same goes for ADD and ADHD. Yet why don’t we hear more about disorders such as Depression or Oppositional Defiance Disorder in kids? Or even adults? It seems someone always knows someone that knows someone with Bipolar or an eating disorder, but it’s not often we hear it from that person directly. And I certainly don’t hear parents discussing it of their children. Yet we know these things exist. We know they happen to real people, that they could happen to literally anyone. Why are we so free to announce as parents that our child has been diagnosed with Diabetes, but we suddenly become hushed if they’re diagnosed with a hoarding disorder?

This question has plagued me deeply the last few weeks, so much so that I can’t stop spinning the question over and over in the back of my mind. I’ve had conversations with friends and family mainly made up of small talk, but the question is still pounding away at me, digging for an answer or some kind of insight.

Somehow we see mental separate than medical I think in our society and I’m not quite sure why. The brain is an organ just as the lungs, the kidneys, and the heart are. Yet the way we view these things when the brain is affected by some kind of diagnosis is vastly different. We don’t often share it. We keep it hidden, locked up, and only told in secrets. And the reactions to such a disorder is always a mystery box in itself. Sure, one might appear supportive in person, but the fact is that one’s perception is suddenly tainted of that person. They’re “unbalanced,” “unstable.” They’re “weird” or a “little off.” Yet these words aren’t used to describe a medical diagnosis affecting any other organ of the body. Why?

I always knew something was different with my son. Not in a bad way. Just different. Unique. He was deaf most of his first year due to severe ear infections which eventually led to tubes. He still has a set in. At three, he was diagnosed with Sensory Integration Disorder. I took him to weekly Occupational Therapy, Speech Therapy and Counseling. We even had a home brushing program, a new posted routine on our fridge and a whole new box of tools to understand what he was going through and how to help him. And it did help. By the time he was enrolled in school, the only thing weighing on him was meal times, as the different smells and textures around him would become overwhelming. There was only a small list of foods he’d consume himself and anything beyond that list would force him to gag and possibly vomit. He wasn’t a picky eater. He literally couldn’t tolerate the other foods. So I’d attend lunch with him. Every day at school. Kindergarten. First Grade. And halfway through the Second Grade until he was able to build up a tolerance. Now as a middle schooler, he’ll occasionally try new foods, but with caution. And every time he does, as a mom, I see the bravery in it. My son is the most empathetic person I’ve had the privilege of knowing. Claiming him as my son makes me proud. He’s the boy that has taken all of his birthday money since he was six and bought groceries and personal hygiene items and made meals and kits that he hands out to the homeless community. And he shakes their hands, looking them in the eye and hugs them. If he’s given a gift, he finds some way to split it with his siblings. Every time. If there’s just one cookie left, he passes it to someone else. Even if it’s his favorite. He’s selfless. He’s thoughtful. He’s generous and giving. He came home from school the other day, distraught and deep in thought and I asked him what was wrong. “This boy in my class beat up this popular kid everyone likes.” “Oh no! Is he okay?” “Yeah, he’s fine. He’s a friend of mine.” “Oh I’m sorry you had to see that, Buddy. That wasn’t right.” “No, but Mom, he just kept teasing him. Over and over. And the teacher did nothing. And so I think he finally snapped. He’d been teasing him all day.” I could tell he was disturbed by it. “Do you think that was fair?” “No. Not at all.” “Well maybe you can go out of your way to be nice to him tomorrow.” “Yeah that’s what I was thinking about. I’m friends with everyone, but I’m trying to think about how I can be better friends with him.” Every morning he wakes up all on his own (because he tells me wants me to be able to sleep the extra 30 minutes) and after he showers and dresses himself and makes a quick breakfast, he picks out clothes for his little brother, folds them, and sets them beside his pillow. I don’t ask him to do this. He just does. He’s eleven. He comes home from school and he asks me, “Mom, what can I help out with? Can I take the dogs for a walk?” He’s ELEVEN. He’ll get back from walking the dogs and ask, “Mom, what else can I help you with?” I tell him to do his homework and he focuses and gets it done to perfection. Then he’ll often help his little brother with his homework too. His teachers adore him. They’ve described him as a leader. A perfectionist. A creative boy. A kind boy. And he is. He’s all of those things.

I guess I could say that we first started seeing the signs a few years ago. He would say something out loud and then repeat it again, but in a whisper. A quiet, muffled whisper, almost like sucking in, under his breath. I’m not sure if he thought we couldn’t hear him doing it. We never said anything about it or drew attention to it because we figured that was best. But I could tell he was contemplating those words over and over in his head, everything he said, really, examining them for a closer look, the way it felt on his tongue and the way they sounded, the way they must have curled through his brain. And eventually he did this less and less and the “habit” or whatever it may be just went away entirely.

Around the time that his father passed away, we started observing more “habits.” It started with a throat hum. It sounded almost like throat clearing, but quieter without the abrasiveness. I don’t think he was even aware most times that he was doing it. I noticed it most while we’d cuddle on the couch and he’d throat hum in random rhythms while watching movies. I’d ask him politely to stop, he’d apologize, then do it again. This frustrated me because he wasn’t a kid that would ever make the same mistake twice. When it started happening in the movie theater, I finally understood that he couldn’t control it. Next came the fidgeting, the clicking, the singing of a line repeatedly, the high pitched muffled screaming sound, the throwing of his head back almost as if he were having a seizure. My husband and I agreed it was getting worse. He would get home from school and all of his pressure or anxiety from the day would spill out into an uncontrollable series of these movements and sounds and go on for at least an hour with no break in between. And I had no idea how to help him. I understood what was happening. I thought. But I needed confirmation.

I took my son shopping one-on-one and suggested an appointment with his pediatrician, to which he agreed. He expressed his embarrassment of the movements he was unable to control, his head flinging backwards repeatedly through Barnes and Noble, a lady staring. I wanted to shield him from all of it, to protect him as best I could and I didn’t know how. I couldn’t understand why this was happening to him, my boy with the heart of a giant, especially after just losing his father and learning his own 50% chance if having the same heart syndrome that killed him. It felt unfair.

A diagnosis was easy for my son. He presented many of the movements and sounds in front of the pediatrician and we had a long list of these observed behaviors. He offered the option of medication, but agreed that the best route for now was a gentle and natural approach of counseling. A few days later, he started seeing a counselor.

As a parent, these things as with any diagnosis are difficult to absorb. But I also felt like I couldn’t talk about it. We spoke with the school counselor who informed his teachers and we started with some new tools to help him cope while there, but I also asked him not to share these things with his friends. “Why?” He was baffled at the secrecy of it, my innocent boy. And I explained that sometimes kids just don’t understand these things and I didn’t want to affect him socially at school. And THAT... my response... has been stirring inside of me ever since like acid. I want to protect my son. But how? What IS the best way?

When he was in Kindergarten, he wanted to wear painted fingernails to school and I told him at first that it probably wasn’t a good idea. “Why?” And I tried to come up with an answer, but none of those answers felt right, so I let him wear it to school. I allowed him to be authentically... him. And when he came home, I asked him, “Did anyone say anything about your nail polish?” And he replied, “Yeah, they thought it was cool! I told ‘em I was s rock star!” When he was in the First Grade, he decided that he wanted long hair. “All the way to my nipples,” he said. And I let him. Kids made remarks. Adults were even worse, complete strangers questioning him and asking when he was planning on cutting it as if it were any of their business, blind to their rudeness. But he handled it and he insisted on wearing his hair how he wanted. Eventually he cut it, donated it, and then grew it back out again. For Christmas, he asked for a hot pink skateboard and a hot pink helmet. He was asked, “But won’t people think you’re a girl?” His reply? “So? Boys can like pink and what’s wrong with being a girl anyway?” The thing is, he’s just comfortable with who he is and what he likes. And these are all lessons my own son has taught me in his eleven years.

His favorite movies are those with a strong hero and a sense of good and evil... Harry Potter. Lord of the Rings. The Hobbit. The Never Ending Story. Star Wars. And I think he connects with those heroes. He wants to be a change in a world full of hate as well, however big or small that change is. In everything he does, he IS that hero.

And so I’ve asked myself over and over again, “Why?”

This morning he sat quietly by the front door, ready to leave only when the clock read exactly 7:45. Not before. Not after. But he was ready fifteen minutes before that, shoes on, sweatshirt on, helmet on, skateboard in hand and waited at the door quietly. “What are you thinking about right now?” I asked. “I’ve been counting the tiles over and over. I like that the answer always matches up the same, but I still like to make sure.” I smiled at him. “Did you remember the rubber band around your wrist?” This helps his fidgeting. “I’m going to try it without today. Just to compare. To see.” Mom worry set in immediately. Panic, really. But his expression calmed me. Confidence. “Okay.” “What time is it?” “7:43.” “Okay. I have two more minutes.”

My son has Tourette Syndrome and Obsessive Compulsive Disorder.

I’m sharing this because parents don’t share this. And I think they should. I’m sharing it because I want my son to see that the lessons he’s been teaching me have been meaningful. I want my son to know that I love him authentically as who he is. I want my son to see that there’s nothing to be ashamed of- that it’s the way our society treats the subject that’s shameful. We have so far to go in this country in how we treat those around us and my son has always been a leader and an example. And I’m going to be his biggest fan.

I drove downtown a couple of weeks ago and I texted my husband. “Is it just me or has the homeless community really grown lately? Like... a lot.” “No, it’s gotten much worse,” he texted back. I passed by a man sleeping in an alley, a woman sleeping under a bridge and I pulled over to cry. My son has taught me to see these things, to observe, to pay attention. My son has taught me to question how those people ended up there. “We have to do better,” I texted my husband, “Our country has to improve how we see and treat mental health care.”

I asked myself so many times... “Why him?” I felt it was unfair. But I trust in God that He knows what He’s doing. And I’ve started to recognize and focus on all of the gifts that my son has been given and the gifts he gives others.