Adventure Is Out There

Adventure Is Out There

Last week, my son went away to summer camp.

At face value, there is nothing remarkable about that statement. He’s almost 12, headed to middle school, and was at camp with his Boy Scout troop. Going away to summer camp is a typical thing for an almost 12 year old Boy Scout.  But this specific almost 12 year old spent the better part of the past year coming out from the depths of anxiety and panic disorders. At this time last year, just leaving house was a challenge. At this time last year, there was nothing typical about his days.

I wish I could remember exactly when it was that we had to make a decision and pay a deposit to secure his spot at camp. It was months ago. It had to have been after my son had climbed far enough out of the blackhole that was the time of his worst anxiety and panic, to be (mostly) functioning in the world. But it also had to have been well before we finally reached a steady maintenance dose on his medications. Somewhere in the middle of those two points in time, was another point in time where we were far enough beyond living in crisis mode to be able to imagine a not-too-distant future date where he truly would be mental healthy enough to handle a week away from home.

Whenever that day was, it was months ago. So, as it goes with these sorts of things, a deposit was paid, a date marked on the calendar, and on we went with the day to day of life. We all knew that camp would happen, but were not actively thinking about the fact that camp would happen. For months “camp” was more of an idea than an actuality. But then months turned into weeks, and as school came to an end CAMP was suddenly looming in the very near future.

One month before he left, my son was incredibly excited. He would tell everybody about the train ride (a 24-hour train ride from our home in Southern California to the camp in Southern Oregon!), the merit badges he planned to work toward, and the activities he was looking forward to most. Two weeks before he left,  I would have described my son as nervously anticipating the trip. The week before he left he was excited yet increasingly anxious. In the days leading up to the trip, he became solidly anxious, while still looking forward to the adventure.

Two days before he left, he had a panic attack. After going weeks without even a minor attack, I watched the panic wash over him as we waited in line at a restaurant. It was small compared to what it would have been a year ago, but it was real. The cause was a lunch crowded restaurant, the root was his  growing anxiety about camp.

The day before he left was his worst day in months. From the time he woke up until the time he finally fell asleep, he cycled through sensory driven meltdowns, bouts of near hysterical tears, and a handful of minor panic attacks. Through all of that we packed him up for his week away. And through all of that my anxiety level was higher than it had been in months. I spent that day doing lots of deep breathing and praying. I spent that day wondering if we’d made a mistake all those months ago when we decided camp would be a good idea.

The date that had for so long been an idea on a calendar, was suddenly a sunny and humid actual day. With the dawning of that day also came a return in my son’s excitement about his great adventure. As he stepped on the train with a huge smile and a wave, I said a prayer. I prayed for him to have the strength to push through his anxiety and be fully present for the adventure ahead.

He was gone for 9 days. For most of that time we had no direct contact with him (they had their cell phones confiscated when they arrived in Oregon), and only sporadic updates from the adult chaperones on the trip (turns out the camp is in a cellular blackhole). The few pictures we received showed him happy and dirty – typical 11 year old at camp type pictures. For a week the only narrative we could imagine was the one shown in those few pictures.

I wish I could say that the kid who came off the train was as happy and excited as the kid who boarded that same train 9 days earlier. Or that the smile which greeted us, was the smile that we’d seen in pictures while he was gone. I wish I could say that the gut feeling I’d had all week that those pictures weren’t telling the entire story was wrong. I wish I could say all of that, but I can’t. The kid who came off the train was emotionally, physically and mentally depleted. He was spent. He was clearly happy to see us, but the happiness was soon replaced with relief. Relief that he was home, and among his closest circle, and didn’t have to try so hard to keep it together – and with that relief came the release of 9 days worth of bottled up emotions, frustrations, fears, and his self-perceived failures.

The “self-perceived failures” are a big part of the story here. It’s a story we are just beginning to piece fully together now that he’s been home for a few days. I know from the few comments I heard a couple of the older boys make to my son, that he was not struggling silently while they were at camp. Comments from adolescent boys such as “I’m proud of you” and “Forget about the bad parts – you did some great stuff” are super telling to me. The other boys saw how he struggled, and some of them showed the best of themselves by encouraging my son to focus on the successes rather than the self-perceived failures.

The adults who were with him have shared with me stories that illustrate a kid who definitely struggled several times during the week, but who was able to persevere. I have also learned from the adults on the trip that although my kid was definitely struggling, he was also looking out for other kids who were struggling themselves. One adult told me that my son is the most empathetic kid she’s ever met.

He has begun to tell the story of this time at camp in little bits of stories that come at seemingly random times. I’ve heard about the food, the camp staff who he liked best, and every type of candy they sell at the camp trading post. He’s also told me how he “cried every day”,  how the early to rise and late to bed schedule left him feeling rushed, and that there were a few times where he did not take his medication. He’s clearly still processing everything he experienced. My hunch is we will continue to hear his first hand experience for weeks to come. He’s focusing a ton right now on the things that did not go right – but slowly he’s sharing the good stuff. My hope is that over time we will be able to help him reframe the story so that what he remembers is how he persevered in a difficult situation, and as a result was able to have an incredible adventure.

I’m working on focusing on the adventure part as well. A year ago there was no way I could see a near future where he would be mentally and emotionally stable enough to do something as huge as a week away at camp. With time, and hard work and medication we got him there – take any one of those three things out of the mix and we would not have gotten him there. He functions in the world only because of a tenuous balance of time, hard work and medication – this trip was a test of that balance. For the most part I think the balance was maintained. But his admission that he knows his medication was not always taken at the right time or in the correct amounts does bother me greatly. We’ll never know if some of his struggles would have been smaller (or even nonexistent) had his medication routine not been interrupted. I have strong suspicion that played a partial role in the challenges he faced during the trip. That is something that I will continue to wrestle with – where did we go wrong in communicating to the adults in charge the importance of his medicine – but it is not where I am choosing to focus.

Over and over again in the week he was gone, people close to me wondered in amazement at the fact that he was strong enough to be gone. It truly is an amazing thing and something that I do not take for granted. This kid who has been dealt an incredibly challenging hand in this game of life, definitely struggles in the day to day. But when the big things happen he shows up, digs in, and perseveres. There were so many times I questioned our decision to let him take this trip, but in hindsight I would not have made a different decision. By giving him the opportunity to strike out on his own, we have also given him a solid foundation for moving forward. There is so much adventure to be had, and we’re going to help him find his place in that adventure to help him discover his place in the world.

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The View From Here..

School ended today at 12pm. By 12:20pm I had four extra kids in the house – two friends of my son and two friends of my daughter. They all came home from school with us and will all spend the night. It’s a huge “Welcome to Summer” celebration.

Earlier today as I was leaving work and heading to the grocery store to stock up for 6 hungry kids, I told my co-workers that this party was either the best idea I have ever had, or the worst. So far, so good. They ate enough food to feed a dozen kids at lunch, they’ve played video games, had water fights, and nerf battles. All together in a big pack. It’s been so much fun to watch (as I have been attempting to get in a couple more hours of work sitting in the yard.)

Right now the boys are in the living room playing video games, and the girls are in my daughter’s room whispering and giggling. There is peace and harmony and joy in the land of preteens as they ease into their summer break. And the current view from my outdoor “office space” is this…

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That is the remains of water balloon fights, nerf battles and hot tub dunking. It is the loveliest, most joyful mess I have seen in a long time. Its existence proves how far my son has come since this time last year. The beginning of last summer was right after my son had hit rock bottom in his battle with anxiety, panic and depression. While this was clearly hardest on him, his behavior, actions and choices for many months last spring and summer had the net result of our entire family being hostage. We did not have people over because there were too many possibilities for the visit to end poorly.

This time last year, we were all just trying to survive. This time last year, the long and empty days of summer seemed desolate and daunting. This time last year, there was no celebrating.

But today there is laughter, and joy, and fun, and friends, and beautiful messes. Today there is celebration and eager anticipation for what the summer will bring. Today the view from where I sit is incredibly good.

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.

 

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. 

If Not Here, Then Where?

I’ve lost count of the number of hours I have spent in the waiting rooms of doctors, therapists, and specialists in the past 2 years. I would wager that the total number is well into the hundreds. Hour, upon hour, upon hour has ticked away while I sat waiting for my son.

Some of those waiting rooms are crowded, busy, and unpleasant. Some are spacious, peaceful, and comfortable. All of those waiting rooms have other parents, waiting in chairs for a son or daughter to finish whatever therapy lies on the other side of the waiting room door. Often, those waiting parents also have other children with them – these are the siblings for whom sitting in a waiting room is as common as hanging out at a sibling’s sports practice. Almost always, my daughter is sitting with me in those waiting rooms.

Just this week,  my daughter and I were sitting in the waiting room of my son’s psychologist. It long ago became our habit for my daughter to get as much homework done as possible while we are waiting. On this particular day she was tired, and the homework felt overwhelming, and she was coming up with every excuse possible to avoid having to do the work. She and I went back and forth half a dozen times, before I finally told her I didn’t actually care if the work got done, but if it didn’t she was the one who would have to face her teacher the next day. That was enough to get her to finally buckle down and do the work.

As I settled back into my chair and picked up my phone to check my email, I noticed the one other mother in the waiting room surveying me with a look that seemed to ooze disapproval. What was the source of the disapproval? My daughter and I weren’t arguing – it was a conversation fairly typical of mothers and 4th graders everywhere. So I would think that was not the issue. It could have been the fact that I told my almost 10 year old that she needed to take responsibility for her actions, or it could have been that we were even having that conversation in a waiting room. It could have been I was projecting and she didn’t care at all. I’ll likely never know. After I vented my frustration to my husband via text message, I took a deep breath and focused on my phone. My first rule of survival in these waiting rooms long ago became “keep your head down.”

Several minutes later, I heard the boy who was with the woman ask a quick series of questions…”Why is he still in there? What’s taking so long? Why does he have to keep coming here? Is it because of what happened at school? Is he going to be ok?” To which the woman replied, “Shhh. Not here. There are other people around.”

Not here. There are other people around.

Not here – in the waiting room of an office that is shared space between a psychologist and a psychiatrist.

There are other people around – one other mother and one other sibling, who were also waiting for a child on the other side of the closed door.

If not here, then where? And if not in front of these people, then who?

Maybe I shouldn’t be keeping my head down in those waiting rooms. Maybe I should be looking around and really see the other parents who are very much like me in many ways. And maybe I should be inviting conversation, fostering a safe space, and creating community.

If not here, then where? And if not in front of these people, then who? There is no “maybe.”

There is so much power in naming the struggle – every time I type or say some version of “my son has level one ASD, an anxiety disorder, and a panic disorder”, it becomes a little less frightening. I am actively fighting stigma online and in (most parts!) of my “real” life, but by not saying something (anything!) to another parent in a waiting room, I am perpetuating stigma.

I don’t know if I will even come across that other mother again. But she could really be any other mother (father, grandparent, guardian) in any other waiting room. So this is my vow to her…

I vow to not keep my head down in those waiting rooms anymore. I vow to be open to conversation. I vow to create safe space for other parents who are so very much like me. I vow to foster community. I vow to be a stigma fighter all of the time.

That is my vow, and I challenge every person reading this to make it your vow as well. Join me and be a sigma fighter.

Because I never again want to hear, “Shhh. Not here. There are other people around.”

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In Case of Emergency

Yesterday was the first day of school. And predictably at the end of the day the kids came home with the stacks paper – some of it actually needed my attention, and much of it went straight into the recycling pile.

Among the items that needed my attention was the reminder to send in an emergency kit for each child. Living in CA, emergency prep means earthquake prep. Our school district requires each child have an emergency kit supplied by the family that includes basic essentials for up to 48 hours.

There is an option to either purchase a pre made kit from the school, or supply your own. I purchased the kits for both kids when they were in kindergarten and we just re-use them each year, restocking when perishables hit their expiration date. So as I was going through the folder full of paper my son brought home and saw the notice listing the items that should be included in an emergency kit, I almost didn’t look at it as I moved it the recycling pile. But then a hand written note on the side of the page, and I paused to read what it said.

The note had been written by my son, “Include 48 hours of anxiety medication in emergency kit.”

I asked my son if his teacher had told him to write the note, and he said no. It was his idea.  He told me, “My medication only works if I take it every single day. If something happens and I get trapped at school, I want to have my medication there.”

I was momentarily stunned.

I asked if getting trapped at school was something he worries about, “No Mom. I do worry about a lot of things, but not about this. But we do live close enough to the San Andreas fault that a major earthquake could happen. If it happens while I am at school, I want to know I have everything I need until you can get to me. The roads could be really messed up. It’s possible that I could have to spend a night at school.”

Ok. So he wasn’t worrying. He was being practical. And that means as much as he loathes going to the psychiatrist and to the psychologist, he knows that the medication is helping him. He still won’t really talk to us about what he is feeling or experiencing, but he told me so, so much when he said “My medication only works if I take it every single day. If something happens and I get trapped at school, I want to have my medication there.”

With those two sentences, he told me he knows how far down he had spiraled before starting the medication, and he told me he feels better on the medication. With those two sentences, he told me he knows he needs to do the work to help himself. With those two sentences, he told me he is beginning to self advocate. With those two sentences, he gave me hope.

Clearly I do not want to see a day when there is an emergency so massive that he does get stuck at school, but if that day comes he will be prepared because he was brave enough to acknowledge his truth.img_6020