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.

 

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.

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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

 

 

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.