Maria Melee is a writer, social media consultant, a mom and our first featured Hopeful Parents contributor.
Can you tell us a little bit about yourself and how you got involved with Hopeful Parents?
When I started blogging in 2002, I just used it as a way to connect with some of my friends. I met new friends through that blog, including my best friend who ended up being with me in the hospital when I had my first son. I’ll be her matron of honor this fall. Because of that experience, I believe in the power of connecting with others online.
When my oldest son developed a chronic tic before the age of two, I began writing about it on a new blog I had just started, Mommy Melee. No one had really seen anything exactly like what he was doing, but it helped to write about it. When his pediatrician suggested we get it checked out, my blog turned into a place for me to express my fears and concerns. I struggled with the idea of saying or thinking that there was something “wrong” with my son. The friends I made through my blog virtually held my hand through every frustrating step in our process. Now that my son is four, we know that he has Sensory Processing Disorder, OCD and a tic disorder that is mostly like Tourettes Syndrome. I discovered Hopeful Parents when I started trying to connect with parents on the same path. While I knew many bloggers who write about the Autism spectrum, I had a hard time finding people who had experience with childhood OCD and elaborate tics. Hopeful Parents felt like the right place to reach out and find a community.
What is that you hope parents get out of what you write there?
I have second-guessed myself through every step of the process of finding help for my son. I’ve been scared, confused and paranoid. I’ve needed validation and support or just someone to bounce symptoms off of. The entire situation can be very lonely! I’ve often found myself slipping deeper into my own anxieties.
I hope that my story can help guide other parents who are walking this path. With very young children, it isn’t always easy to nail down what’s going on. Kids change quickly. Kids don’t have the cognitive ability to share exactly what’s going on inside. On top of that, it’s very easy to fall into a trap of thinking that you’re overreacting or being hysterical.
If just one mom or dad reads my story and says, “ah ha!” and feels reassured, I’ll be thrilled. There’s no substitute for a doctor’s care, but I think hearing stories and seeing examples can go a long way toward parents being able to evaluate what may or may not be going on with their children. Above all, I think we all need to know that it’s okay to tell our stories, as parents. We’re not betraying our children. There’s also nothing wrong with thinking something might be wrong. Even if it all or some of it ends up being a “normal” part of your child’s development. (It turns out ALL three-year-olds are jerks, who knew.) (Just kidding. Sort of.)
I hope that parents don’t feel isolated in their experiences. I hope that parents understand that reaching out for help makes them stronger and more emotionally available, and that seeking treatment is the absolute best thing they can do for their children.
What are some of the benefits you’ve found in writing your story?
Writing is very therapeutic for me. When I’m bursting to the brim with anxiety or sadness, I write what I’m feeling. I write about my confusion and conflict. It isn’t always easy for me to find the line between oversharing and telling my own personal story. I don’t want to invade my son’s privacy. Now that we know that what he is experiencing is in part a mental health issue, I am more sensitive about talking about it. I think part of this is my own hangups and the stigmas surrounding mental illness. Because of this, it’s even more important for me to push through my feelings and continue to write in a way that’s respectful but honest. Ultimately, I know that I can stand by every word I’ve said and that my son can one day read them and understand who I am as a person and how much I absolutely explode with my love for him.
Writing has also helped me stay grounded and maintain my sense of humor. My son is a funny, bright, amazing kid. He makes me laugh every single day. I have to laugh when he’s silly, I have to laugh at myself. I have to laugh when I act like that cliche crazy overbearing mom at preschool because that’s just who I am, and who so many of us are. The laughter and joy that comes with getting to know a complicated little person is priceless. Writing helps me stay in touch with that sense of gratitude and wonder. My kid is a cool kid.
In a more concrete way, writing my story has connected me with other parents who are experiencing a similar path. I recently read an amazing article about Tourretic-OCD that described parents as suffering from Alphabet Soup Syndrome. All the acronyms and mights and maybes make your head spin. SPD, OCD, TS, PDD-NOS, etc. No matter how good your doctors are, you have to do a certain amount of research on your own. And you absolutely must learn to advocate for your child to medical professionals and the school system. Writing has helped me navigate those turbulent waters. The experiences I’ve read about have cleared the path for me in some ways, and I hope I do the same for others.
I took some time away from thinking. (Not really.) I took some time away from talking. (That’s more like it.)
Mostly because my whole being came to a choking halt when my son’s developmental pediatrician drew a little diagram in front of me to help explain why she felt that my four-year-old has obsessive compulsive disorder.
After that I heard the words “child psychiatrist” and “anxiety disorder” and I shattered.
I didn’t (don’t) know how to talk about it, the abrupt shift-change.
When my dad called that evening, I practiced saying it, got the words out calmly. And he said, “Okay, sounds good,” and it was a non-issue, just another answer. But I felt like I was ten years old screwing up my scales at the piano or getting a D on a math quiz.
“That’s crazy you know,” my husband said, letting me cry on him.
We’ve been on this road for so long, for a couple of years, the quirky what-if maybe-autism maybe-this maybe-that but not that and not that because. Because, I don’t know why not. I don’t know.
“I’m sorry,” I cried, later, but not to him. Alone. Thinking about what anxiety means to me, thinking about how it feels, how it runs in my veins and that I gave it to him.
(Shh, I know. I know I didn’t give it to him I know this isn’t my fault.)
His doctor looked me in the eye and said, “We do know that this runs in families, and with your history and your family’s history…” She trailed off.
He sat on the floor on the other side of the room, squeezing trucks and lining them up.
I nodded, of course, yes, of course. Sure.
He’s four. He is four.
What does he have to be anxious about? Not bills or deadlines (does he feel it when I’m tense and stressed?) not death or illness.
(Oh but he loves to talk about death, dead things, broken things.)
His sensory integration issues don’t help, probably, his occupational therapist tells me, all warmth and smiles and keeping me from going crazy. He feels different, the world feels different, other kids stress him out.
“He doesn’t talk about being afraid that much,” I say (seeking evidence to the contrary of this distressing possibility), trying to remember every time he’s ever been afraid of something. The dark? That’s normal. Dinosaurs? Dinosaurs are scary, man. Twisters? Blame the Wizard of Oz.
But it isn’t cut and dry, none of this is. Hell, we don’t even have a diagnosis yet, just more appointments on the horizon.
I don’t know how to tell this story, only how to live it. I fumble for the lines between his story and mine, I hope for the wisdom to know how to share this with grace and respect for a little indivdual who has only been around this crazy world for four years.
Bedtime and saying goodbye are the most rigid. Ten kisses, a hug, and a short script.
This week, the script became more complicated. Like a Doctor Seuss book. Back and forth.
“Goodbye,” he says.
“I love you.”
“I love you too.”
“I love you,” he repeats.
“I love you too.”
He watches my face, waiting for the right words, the whites of his eyes showing a little and I can see the need there.
Something I read last week talked about rituals slowly, as kids get older, becoming more complicated, becoming more disruptive. I wonder at this as he bats his brother away and then simply screams inhumanly. Because a careful line of toys has been knocked out of order.
As he squeezes and carefully arranges and then grunts and hums and squeezes some more, his therapist nods and speaks to me in hushed tones. “That is what it looks like to me,” she says solemnly.
But we agree, smiling, that it’s fascinating, that he’s fascinating. So smart, so funny. So absolutely loving.
I don’t know why the thought of autism was easier, and why this is more frightening to me. I don’t know who my community is, or where to turn, or who else has kids like this or what the hell I do. I’m scrambling to re-gain my footing, to shake off the stigma I never knew I held.
I feel guilty for being freaked out now when I felt so assured before.
He’s just a little kid, barely more than a baby, and anxiety disorder makes my brain fast-forward to middle school and high school and college and sleepless nights and unhappy adulthood and God-DAMN-it I just want my little boy to be happy. Happy every day. Happy. Not scared, not scared of things I can’t see or touch or fight.
I am his mother and if I could I would tear the monsters down with my fingers and fists, stomp them into the Earth with my bare feet, shatter them with an unholy roar. You leave my son my alone.
When I pick myself up from my little meltdown, I settle into the words, into the thought of it, onto the road. This is a road I’m on, that we’re on together, that we’re all on. Slowly, so slowly, I’m coming to peace with the path—with the understanding that we have no destination. No final answer.
We only walk together, hand in hand, holding tight to each other.
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