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

The Is Us; 2017

One year ago today I hit publish on “a little project” I’d been working on.

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Today I went back and read the post that started what has become an incredible journey. Take a peek and see where we started.

We’re in a much better place in general today than we were when I wrote that post. We have words to name things in a way we did not at this time last year. And we have all found our own voices and own ways of narrating our story for the world. As a family we are changing the dialogue. There are still dark moments, hours & days. But the light spaces in between have stretched. There is still a lot of who we are to be found in that original post, but it’s not where the story ends.

And as for me and that “little project”… 12 months, 76 blog posts, 6 articles published on The Mighty (including one co-authored by my son), 7,000 people in 60 countries reading those words and hopefully finding encouragement to find their own voices.

Here’s to another trip around the sun…

Love, Faith, and Anxiety

Maundy Thursday is the day that Christians commemorate the gathering of Jesus and his disciples for the Last Supper. Maundy comes from the Latin word mandatum, meaning commandment, in reference to Jesus’ teachings about a new commandment. “I give you a new commandment, that you love one another. Just as I have loved you, you also should love one another. By this everyone will know that you are my disciples, if you have love for one another” (John. 13:34-35, NRSV). That piece of scripture, and it’s message,  has been woven into my life for as long as I can remember, but last night I felt those words in a way I had never experienced them before.

I’ve written before about the internal struggle my son wages between his love for God and church, and his inability to be in large groups of people. After a year on medication to ease his anxiety, he is generally good on Sunday mornings – he knows what to expect, can position himself in the sanctuary in a way that offers an unobstructed escape route, and has figured out how to entirely avoid the over-peopled parts of church. He has found a balance that allows him to participate in worship and fellowship, without being too overwhelming.

But every now and then, he finds himself in a situation at church that is outside of his comfort zone.  With the decrease in predictability comes an increase in the potential for anxiety or a panic attack. Such was the case last night as we observed Maundy Thursday.

He was trying so hard to stay in control. I could see it and I could feel it in his tense body seated next to me. But shortly after we were seated – in a sanctuary that was darker than he is accustomed to, in a seating arrangement completely different from on a Sunday morning, in a worship service filled with heart wrenching words and haunting music – he realized he was not in control. And his chosen means of attempting to hold off the panic attack was to bury his head in my lap and squeeze his eyes tightly shut.

So it was that I found my sweet boy – who is almost as big as me – curled into my lap as the words of this Taize chant washed over us both…”Nothing can trouble. Nothing can frighten. Those who seek God shall never go wanting. God alone fills us.” Over and over I heard and sang those words which were simultaneously heart breaking and soul filling. My heart broke for Jesus, for the world at large and for my son – as I sat holding my son, I felt my heart-break wide open.

The message of Maundy Thursday is love. Love in its purest form. Love for one another. Love in action. And while I am still reeling from the pain of last night, in the light of this day I know that above all else it is our collective love and faith that will see my son through this world.

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Look Closer…

One year ago today….

This was a picture perfect day as captured from the rooftop deck at the Monterey Bay Aquarium. I remember the first part of the day being a lovely family outing. And there are dozens of other pictures taken that morning which support my memory. 

But shortly after this picture was taken, our son had his first debilitating panic attack. In the middle of the aquarium, we all had our first experience with the wave of panic washing over him and sending him to the floor in a fetal position. It was possibly the most frightening moment of my life. And was certainly a turning point in my son’s story. 

Just 2 days before this picture was taken, we had made an appointment with a psychiatrist to discuss the possibility of medication. If there was any doubt left lingering that our boy needed the support of medication, that disappeared as we helplessly watched him first huddling on the floor in the middle of a crowd and then watched as he ran searching for an exit from the building. 

That day marked the beginning of a long series of days and weeks and months that were colored by fear and exhaustion for all of us. Because even though medication was only weeks away from this date, it took a long time for us to see and feel the effect. 

Everything you just read? That’s what all flashed through my head as I saw this picture pop up in Timehop this morning. It was an awful lot of emotion and memory before 7am. 

But then I looked closer. I looked at the picture again, and I saw how far we’ve come this year. On that day we didn’t even yet have an actual diagnosis. We were still searching and trying desperately to get to an answer before something went terribly wrong. On this day, a year later, we have the diagnoses and answers and experience to better handle whatever his brain or life might throw at us. We are so much better equipped. And while we know there are likely more dark days to come (that will masquerade as sunny and picture perfect), we also know we can fight that darkness. 

So look closer. Look closer and you can see both the broken and the beautiful. 

Life is tough…But so are you

Recently a very brave friend has been struggling, and sharing her struggle publicly on Facebook. In recent days she has shared, through words and pictures, that she is feeling vulnerable and broken.  My guess is her posts are making many people uncomfortable, but I see so much strength in her candor and her willingness to share her brokenness with the world.

One day this week, I commented on one of her posts to let her know I am thinking of her, praying for her, and cheering her on. My comment was – One minute at a time. One hour at a time. One day at a time. Whatever it takes to get you through. Her response was one of thanks, but in that she referred to me as “wonder woman”. And I cringed.  I am not a wonder woman.

I am a broken woman who is struggling in my own way each and learning to live my own advice – One minute at a time. One hour at a time. One day at a time. I share my story not from a place of strength, but from a place of vulnerability. Sharing makes me stronger, but I am really no wonder woman. Certainly no more of a wonder woman than my friend. She is brave and candid and something of a wonder in her own right.

In sharing her story, she is definitely helping herself. But more than that she is helping to open a dialogue about an often hidden reality for most people – the reality that no matter how strong we may appear to the world, we are in fact all a little broken. By sharing her story, she is stepping into the light and shouting, “Hey world! Look at me! I am struggling right now, but that is not where the story has to end. And if you are struggling too, know that you are not alone!”

By sharing her story, she is making space for others to share their own stories. In her brokenness there is beauty and light and strength. She is a wonder and an inspiration.

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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….

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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.