Full Circle

This week, both of my kids are spending their mornings at cooking camp offered by a local cooking school. It’s actually the second time this summer that my daughter has been at the camp. She did a week early in the summer and loved it so much she asked to do another week.

Toward the end of that first week, my son was with me when I dropped his sister off. Normally he opts to stay in the car when I walk her in someplace, but on this particular morning he got out of the car and said he wanted to see what the school looked like on the inside. When we walked into the school, the “head chef” of the camp greeted us and engaged my son in a conversation. She asked why he wasn’t at camp with his sister, talked to him about his favorite foods, and encouraged him to think about joining the camp another time. I remember thinking how nice it was to see him interacting with a new-to-him person in a new-to-him place, but didn’t think the conversation would have a lasting impact.

I was wrong.

Later that day, I was on the cooking school website trying to figure out if there was another week ,with spots available in camp, that would work for my daughter. When I mentioned to my daughter that I found another week she could attend, my son quickly chimed in and asked if he could attend the camp as well.  I was surprised and must have asked him half a dozen times if he truly was serious. He was. “The teacher was really nice. I think it will be fun,” he said.

Fast forward about a month to this past Monday. As we pulled into the parking lot of the cooking school, my daughter asked my son if he was excited. He responded by asking if the teacher would be the same, “Because I really liked her.” I told him that as far as I knew, the teacher would be the same.

I was wrong.

We walked into the school, and as I was signing the kids in, we were greeted by a “head chef” who was not the woman my son had found to be so nice. I looked around and did not see the chef from earlier in the summer. I looked at my son and saw panic in his eyes. As I decided how to respond – or not – to the unasked questions I saw on his face, my daughter took control.

“Come with me,” she said to him, “Let’s get our aprons and find a spot at the table.” So he did. Aprons on, they went to the table and looked for their assigned spots. I watched from a distance as fresh panic appeared on my son’s face when he realized that his assigned spot was several kids away from his sister’s assigned spot. I watched as my daughter took my son’s hand, looked him in the eye and told him, “Don’t worry. We’ll get it changed.”

I approached the new teacher, and asked if it would be possible to have my kids next to each other. She responded that they had found it was better to have siblings separated. I told her that in general, I could see how that would be the case, but in this specific case – in the case of my son who is an Aspie and struggles with anxiety and panic – it would be best for everybody for my kids to be next to one another. I watched as the expression on the teacher’s face morphed from one of a person in charge explaining something to a meddling parent, to one of a person in charge who suddenly had dozens of questions about one of the kids in her care (but that is not the point of the story).

About that time, my daughter came over to join us. She said, “He needs me. I need to be able to help him if he gets upset.” With not another question, the teacher rearranged the seats so that my kids were together.

As I drove away that morning, I remembered another first day drop off at another camp several years ago. The first summer both kids were old enough to attend morning camps for preschoolers at our YMCA (they would have been 3 and 4 years old that summer), I registered them both for two consecutive weeks. The first week the drop off went smoothly – they were excited to be doing something together and the YMCA was familiar to them both. The second week, the drop off was rough. The counselors from the first week, were not the same as the counselors on the second week. My daughter had developed an adoring attachment to one of the counselors from the first week, and when she discovered that person was not there on the second week she melted down in a way that only disappointed 3 year olds can melt down. She was inconsolable. She was never a kid who clung to my legs at drop offs, but that morning she clung to both of my legs as she sobbed and asked to leave.

That morning so many years ago, it was my son who held out his hand and said to my daughter “Don’t worry. I’m here. We can be together.” And I watched the fear disappear from her little face as she took his hand. Just like on the morning this week when I watched the fear disappear from his face as he realized she was by his side.

Full circle.

And as I have been writing this post, I have had flashing through my mind a slideshow of images over the years like this one…

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They may not always agree, and they certainly do not always get along. But they always take care of each other….through the real, raw, broken and beautiful parts of life.

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