Maintenance Dose

377 days.

That’s the total number of days between the date my son was first prescribed psychiatric medication and today. In those days the type of medication has changed 3 times and the dosages have been adjusted 7 times. And today, on day 377, the psychiatrist sat across the desk from us and told us that he thinks the current medication combinations and dosages are solid. We’ve hit the sweet spot of “maintenance dose”.

Our decision to medicate is not something I have talked or written about very much. The path that finally led us to the our son’s psychiatrist and that first dose of medication  377 days ago, was long and twisted. Some parenting decisions are easy and clear-cut. The decision to medicate was not one of those.

While I am fairly open on the blog and in person about our story, I am careful to not over share. Specifically I leave out the parts of the story that are too raw or personal. Truly that means I often leave out the specifics of behavior and the grittiest of the details.  These are the things that if you have not lived through, you may not even be able to imagine or consider as possibilities.  Leaving out those details is necessary to maintain some dignity for the people involved, but it also means most of the world is only getting a portion of the story. It is challenging to talk about the “how” we got the decision to medicate, while also maintaining that balance of not over sharing. But perhaps by sharing even a part of this yet untold story, those who do find their family in a similar situation can read enough between the lines to know they are not alone in the difficult decision of to medicate, or not.

I can’t really put my finger on the why of this – but for a long time I was staunchly against medication. I absolutely had concerns about side effects, and although I never articulated it I also had concerns about stigma associated with medication. I was willing to try any other possible intervention – counseling, behavioral therapy, diet and routine changes, homeopathic and alternative therapies. And we did try them all. We exhausted all the other possible interventions. But none of them made a dent in the problem. In fact, in the time we were cycling through my “anything but medication” approach, our family became hostage to my son’s increasing anxiety and depression and the behaviors that accompanied the anxiety and depression.

By the time we made the decision to medicate (actually by the time I finally got there, my husband was ready months before I was), the anxiety had eroded the joy my son once exuded. His anxiety was so high and so persistent that he was barely able to function in the world.  The behaviors that accompanied that anxiety were holding our family hostage. He was in pain and in crisis, but we all were suffering.

I can recall with absolute clarity the moment I knew I was wrong and that medication was a necessity. It was the day he had a panic attack so debilitating he sank to the floor in the middle of a group of people at the Monterey Bay Aquarium. The site of him shaking and crying on that floor is an image that will never leave me. So by the time we met the man who would become our son’s psychiatrist 2 weeks later, when he asked if we would consider medication my answer was an emphatic yes.

And so 377 days ago he started medication. 377 days ago he would not look at the psychiatrist, let alone speak to him. Today as we sat in the psychiatrist’s office, my son looked him the eye and was (mostly) able to answer questions about how he is feeling and what he is thinking. He even laughed at one point, and was clearly excited and hopeful as he talked about the summer camp he will attend this year. He was a completely different kid sitting in that room today, than he was 377 days ago. So much of that can be attributed to the medication.

And so we have reached a “maintenance dose” – for now at least. He will grow and his hormones will kick in – both can wreak havoc with the delicate balance the medications provide. Or some yet unknown and unforeseen life change could amp his anxiety levels – that could also wreak havoc with the delicate balance the medications provide. I still worry about potential longterm side effects, but 377 days into this particular part of our journey I do not doubt that medication was and continues to be a necessity. The medications do not provide a cure, nor are they absolute. They do help to create the space for him to learn to handle the world. They do establish enough balance for him to engage with the world on his own terms. And they have brought enough peace that there is joy once again in his eyes and in his laugh. And for that I am thankful.

 

Bearing Each Other’s Burdens

I was honored, and a little (okay a lot!) nervous to be invited as the featured speaker at Atascadero United Methodist Church as part of their annual Mental Health Awareness Sunday. The key word to me in that sentence is “annual”…..every year for the past few years they have set aside one Sunday in the month of May to shine a light on fact that mental illness is widespread and that we all need to do out part to break down the stigma that continues to persist. In a world where most people are still to frightened by the thought of mental illness to really begin to understand mental illness, this congregation is actively searching for understanding and for ways to turn that understanding into action.

I am not an expert. I am a mother with a story to tell. A story that I tell because I know there is great power in giving names to the things that feel frightening. A story that I hope helps to break down the stigma surrounding childhood and adolescent mental illness. A story that I know touched the hearts and minds of the people at Atascadero UMC this past weekend.

Take a look, and see if perhaps that story touches you as well…Bearing Each Other’s Burdens – Atascadero UMC; May 7, 2017

This is Why..

This is a post I have been pondering for quite some time. Truth be told, I’ve written it dozens of times in my head, but hesitated to send the words out into the world. Why? Because as much as I KNOW this post isn’t about any one person, I am pretty certain that there are people in my life who will think this is about them. But it’s not. It’s not about any single person, or any single incident. It is about setting the record straight for anybody and everybody who doesn’t understand why I am sharing our family journey – and that group of people does include some extended family and friends.

So if you are reading this and include yourself among my extended family and friends, please believe me when I say this is not about you. And with that out of the way….

why-image

We are quickly coming up on the first anniversary of We’re All A Little Broken. What started out as a way for me to first process my own thoughts and emotions, quickly became a way for me to provide a peek into our lives in an attempt to help loved ones understand our reality. In the early days of the blog,  my solitary goal was just to help family and friends understand the day to day challenges in our house. But somewhere along the way, the little blog bloomed into a small community of people all over the world who are reading my words and finding some meaning. Somewhere along the way, our story began to resonate….with those who read and can see a similarity to their own family in us, with those who read and see the struggles and triumphs of their own loved one in my son or my daughter, with those who read and are having their own perspective shifted, with those who read and sigh with relief to know that they are not alone on the journey.

Time and again this past year, I have been overwhelmed by the positive response to We’re All A Little Broken. But it hasn’t been all positive. There are people who have questioned my intent, and even some who have wondered out loud if I might be opening my kids up to ridicule by sharing our story. There were enough of these questions, that I actually spent time really wondering if I am being helpful or harmful. And while I do share openly about the challenges we face in our family – autism spectrum disorder, childhood mental illness, learning disorders, fibromyalgia – I do not over share. I do not tell the stories that feel too fragile.  I take great care to balance out the raw and broken bits of our story with the beauty that is found in our day to day reality. And the people who are beside me in this day to day reality – my husband, son and daughter – are all incredibly supportive of me telling our story. So do I think  I am doing harm by sharing our story? Absolutely not.

I know that there will always be people – both in my personal life and in the world in general – who will never understand the intent and message in my words. And that’s okay. I’m not writing for them. I am writing for me. But more than that, I write for the people out there who do understand the intent and message in my words.

I write for my son, who can’t always find the words himself to express his experiences or feelings, but he reads my blog and tells me how proud he is that his story can help other kids.

I write for my daughter, who is already an amazing force for good in this world and I hope that she find some inspiration in my journey as she charts her own path.

I write for my husband, who is my partner, ally and greatest supporter in this life we didn’t expect.

I write for the childhood friend who has confided her own son’s struggles that in many ways mirror my son’s challenges.

I write for the high school friend who has shared her daughter’s challenging journey with me.

I write for the college friend who talked with me about her own hunches and fears on the eve of the first in a series of diagnostic appointments for her young son.

I write for the friend who’s adolescent nephew has been recently hospitalized as he battles with depression.

I write for the woman I have never met, who sent me a message thanking me for words that helped her feel that her family was not alone in their own struggle.

I write for all of the parents and caregivers who are searching for answers.

I write for all of the family and friends who are trying to understand and wanting to be supportive.

I write because the raw and broken parts of our lives are as real and formative and important as the beautiful parts of our lives.

And I will continue writing as long as somebody out there continues reading.

The “Aha” Moment

About 10 months ago, we made the decision to start my son on medication to help manage his anxiety, panic attacks, and depression. Since then the type of medication has changed, an additional medication has been added, and the dosage on both has been increased several times. It’s been a process.

At the beginning of that process, the psychiatrist told us that one day we would suddenly realize that things were better. 10 months ago he promised us a date somewhere in the future when we would suddenly look at each other and just know that we’d made the right decision when we chose to medicate. He promised us an “aha” moment.

Days, weeks, months passed. It wasn’t an instant fix, and we knew it wouldn’t be. Truth be told, the worst days in our son’s slide into the black hole that was anxiety/panic/depression came after he started the medication. There were days and weeks where we feared for his safety, and there were days and weeks where we feared for our own safety. But we kept on.

Medication levels were adjusted. He continued his weekly therapy with a psychologist, and also began spending time each week with the counseling intern at the school. There were several points along the way where I wondered if we’d ever see that day the psychiatrist had promised us, but there were also several points along the way where I saw glimmers of calm and joy in my son that fueled me with hope.

And then it happened.

That “aha” moment we’d been promised came earlier this month, in both an unlikely and wonderful place.

February 21, 2016. (About 2 months before we began medication)  That was the day last year our son’s Cub Scout pack celebrated their annual Blue & Gold banquet, and that is where our son had his first panic attack. Although at the time we didn’t know what to call what was happening – he would later describe it as feeling too hot, and dizzy and not knowing what was happening right around him – looking back now we know that was the first (and far from the worst) of a long series of panic attacks. All we knew at the time was that he was in distress, that we had to get him out of that room, and that the trouble we had seen brewing for over a year had reached a new low point.

Fast forward. February 12, 2017; this year’s edition of the Blue & Gold banquet but this time with no panic attack. In fact, it was actually the most enjoyable large group activity we have experienced as a family in more than a year.

That was our promised and long-awaited “aha”moment. I lost track of the number of events or places we either avoided or left abruptly in the past year,  because the place or the people triggered either panic or explosive behavior. He missed out on a lot. We missed out on a lot. But we just kept trying, and working, and praying, and loving and searching for that “aha” moment. And when it came, it was shiny and beautiful and dripping in hope.

I am coasting on the beauty of that victory for as long as I possibly can. As much as I celebrated the arrival of that long-awaited moment, I also know there will be a time in the future when we are waiting for the next “aha” moment to arrive. On the same day the psychiatrist told us we would get that aha moment, he also told us that our son is most likely dealing with a lifetime of fragile mental health. While the medication levels and therapy have helped him find some equilibrium, that equilibrium can be blown in an instant and we could find ourselves back at the beginning once again. That’s not a pretty thought, but it’s a realistic one.

So we’re learning together how to extend the good moments into good hours and days and weeks and months. And we’re celebrating the small victories and figuring out how we can trade those up for larger victories. And most of all, we are making sure he knows how much he is loved and that he will always have a safety net in our arms in the spaces between the aha moments.

the-aha-moment-orlando-espinosa

 

 

Pasta – With a Side of Perspective and Persistence

A dyslexic, an Aspie and their mother are sitting around a table…

That almost sounds like the start of a bad joke. But it isn’t. It was dinner time in our house last night.

On most weeknights, dinner is a rushed affair in our house. We eat early so that anybody who has an evening practice, rehearsal, scout meeting, etc. heads out with a full belly. The early meal means generally my husband isn’t home from work yet, so most weeknights it is just the kids and I around the table.

Last night, as the three of us ate our buffalo chicken pasta, my son asked my daughter a series of questions about dyslexia – what do words look like to her, does she see letters backwards, does it make her sad that she has to struggle to decipher text, does it make her nervous to use the tools she’s been given to help in class?

In response to that last question – does it make her nervous to use the tools she’s been given to help in class? – she talked about how some of the kids in her class complained to the teacher that she gets to use something that they don’t. And that one statement provided an opening for the most amazing series of statements from my son…

“They’re just jealous. But you shouldn’t care. You see the world differently from them, and that’s ok. It’s just who you are.  Look at me. I don’t like to think about my anxiety and panic disorders as a mental illness. They are just a part of me, and that means I see the world differently. And my autism isn’t bad. It helps me see things other people can’t see. It’s part of me, and I also think it makes some people jealous of me. Just like some kids in your class are jealous of you. It’s ok. Just be you. Yum. This pasta is good.”

And then they started talking about a YouTube channel they both follow as they finished their pasta.

I don’t know how long those thoughts have been running through his heart and head. I don’t know what prompted him to speak them aloud in that exact moment. I don’t know when or if I will ever again hear some version of those statements come from his mouth.

I do know that in  hearing him say those things – “It’s ok. It’s part of me. Just be you.”  – I was also hearing that somewhere in his heart and head he is developing perspective and persistence. I do know that in that moment he gave me hope. I do know that, even if it isn’t always apparent, he is becoming increasingly comfortable with who he is and the space he occupies in this world.

The words are simple – “It’s ok. It’s part of me. Just be you.” – but the message is universal. We don’t always get to choose the circumstances that shape our reality, but we do get to choose how we respond. My husband and I work hard to make sure both of our kids are developing the persistence and perspective they need to thrive in life. We work at it everyday, but we aren’t always sure we are getting through. At dinner last night, I was certain that we are getting through.

 

 

Me and My Shadow

Several months ago, I developed a habit of getting up early in the morning and walking. I take the same route every day – just a little over 2 miles around and through my neighborhood – and usually start and finish the walk at approximately the same time each day. In other words, there is a predictable pattern to my walk, that has really only been modified by how much daylight there is, or isn’t, depending on the time of year.

This morning, I was awake earlier than normal. My husband had an early flight out for a business trip, and since I could not fall back to sleep after his alarm went off, I decided to get out of bed and walk earlier than normal. I walked my same route, but because of the earlier time it was still quite dark for most of the walk. My walk was lit by the streetlights, instead of by the new light of the morning like it is normally.

About half way through my route, I turned a corner and was startled by a shadow on the sidewalk in front of me. It was my own shadow, cast by a streetlight. But I wasn’t expecting it, and for a second I truly was scared by my own shadow. I quickly realized what it was and had a little chuckle at myself. But then I began thinking about what it really means to be scared by your own shadow.

What if the “shadow” is the part of each of us that we dislike the most? What if the “shadow” is the circumstance that may be beyond our control, but still shapes us? What if the “shadow” is the thing we can’t change?

The shadows are the things that follow us around, no matter how hard we try to either get rid of them, or ignore their existence.  The things that are always there,  because whether we want to admit it or not, those things are a part of who we are. And those things we don’t want to acknowledge, or name, or bring into the light are as much a part of who we are as the things we do acknowledge, name and shine a light upon. Those things are our shadows, and our shadows are connected to us.

We all have shadows. Mine are a self doubt that is deep and wide,  and the exhaustion (both physical and emotional) that comes from living with Fibromyalgia. That’s all a part of who I am. Those are my shadows.

But in order for there to be a shadow, there must first be light.

 

 

 

It’s Okay to Cry

We’re in Philadelphia for a few days. As we walked around near Independence Hall today, we spotted this…


As my son walked past it he said, “Sometimes you have to cry. It’s okay to cry”

Yes it is.