A Picture Is Worth a Thousand Words…

We are in the swift downhill race to the end of elementary school for my son. Every single day there is some celebration marking the end of the class of 2017’s time at the school. 

Today that celebration was an awards ceremony honoring academic achievement. My smarty pants, loves school, never met a book he didn’t like kid went into the morning knowing he would receive an award and was eagerly excited when he woke up this morning. 

Even with that excitement, the actual act of sitting in a cafeteria full of other kids and parents was hard for him. He is doing so much better at keeping his anxiety in check, but crowds, noise, anticipation and that cafeteria all remain individual triggers. Put together, he could have been sitting in the middde of a perfect storm. At this exact awards ceremony last year, he could not even enter the cafeteria – he listened from outside the doors. 

But today he managed to get a win over his triggers and demons. Today he sat in the midst of the other kids, cheered his friends and classmates on as a couple dozen awards were given out before his name was even called, and walked proudly and confidently up to the stage when his own name was called as a recipient of the President’s Award for Outstanding Academic Excellence. In other words – he rocked it!

I took gobs of pictures during and after the ceremony. Some show him solemnly examining his award, some show him beaming with pride, one shows him with his amazingly kind and wonderful teacher, and a couple even show him goofing off with friends. But this picture is the one I know I’ll treasure most over time. 

This picture of his back (and the back of his sister’s head) tells the part of the story I think matters most. The story isn’t that he’s an excellent student with a crazy smart brain. That’s amazing, and we’re super proud of his academic achievements, but it’s not what really matters here. What matters here is the fact that he is in the room. We could tell he was about to burst out of his skin at several points during the ceremony, but he didn’t give in. He fought through the anxiety and was a true participant in a huge personal milestone moment. From our seats in the chairs behind the kids, we were able to witness him truly being present for himself and with his peers. And it was beautiful. 

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.

 

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…

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. 

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.

Once Upon A Time…

growing_upOnce upon a time, there was a 10 month old baby boy who took his first assisted steps up and down the aisle of a church during Vacation Bible School week. The hands he held were those of a sweet little girl who would grow up to be one of his favorite baby sitters, as his mother was busy teaching music to the other children.

Once upon a time, there was a not quite 3 year old boy, who splashed in the water left over from VBS games along side the other toddlers of the church and left a permanent dent in his forehead when he collided with a pew.

Once upon a time there was a not quite 4 year old boy who finally got to be with the “big kids” during VBS. He decided he was “too hot” during a music performance for family, and started to strip naked in front of everybody. All while his mother looked on helplessly since she was in the midst of directing the musical efforts of all the other children.

Once upon a time, there was a preschooler, who grew to become a young elementary aged boy. This was a boy who loved VBS and looked forward to the week every year. This was a boy who excitedly waited for the day his parents would add the latest round of VBS music to his iPod.

Once upon a time there was a 9 year old boy, who still loved VBS, but no longer loved being around people. He spent all day every day begging his mother to let him leave, but his mother was in charge and so he was “stuck”.

And now there is no more once upon a time.

Now we are in the here and now. Now there is an almost 11 year old, teetering between childhood and adolescence. Now we are in our current reality, where so many safe places, and loved activities have been stolen and buried under the weight of anxiety, panic & depression. Now we are halfway through a summer where that boy has only been able to attend one week of day camp, because the world is still more than the can handle most days. And now we are halfway through VBS week.

We’re halfway through VBS week, and my son has been there as a helper every day. Three days in and he’s doing great. He’s not the best helper ever, but he’s doing the best he can and the adult he is helping understands his situation and is doing everything she can to help him have a successful week. He is doing such a good job of avoiding the large crowds of kids and adults at the opening and closing times, that one adult I spoke to today didn’t even realize he’d been there all week. But he’s there, and he’s enjoying being there.

I am confident that as recently as two weeks ago, he would not have been managing as well as he is this week. With every day that passes, I am beginning to see that the current combination of medications may actually be doing the job they are supposed to be doing. The hard edges are softer and the things that trigger him are fewer. I have seen glimpses of joy, and laughter, and peace in my boy this week. I have seen glimpses of that that boy who once loved VBS more than any kid I have ever met.

Once upon a time there was a boy who grew up in a church, and loved everything and everybody inside that building. Once upon another time, the darkness of anxiety, panic, and depression made that church and it’s people feel unsafe to that boy. Once upon another time, with the help of his family, that boy fought back and reclaimed the joy the church once gave him. I know we’re not anywhere close to a happily ever after, but seeing my son smile again as I work through VBS has been an amazing blessing.

To the Staff at Horse Camp

We’re halfway through summer break, and my son finally was able to attend and enjoy a day camp this week. He and my daughter both spent the week with my parents and went to a horse camp. It was the one thing he REALLY wanted to do. They attended last summer, and talked about it all year long. Last weekend he was excited, but also anxious about that “what ifs.” He’s doing a little better most days, with the panic attacks coming further and further apart. I was nervous for him, but knew he needed to do this. So he did. And it was great. And he came home full of happy stories of beloved horses and a new friend. And for that I am so, so grateful!