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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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.

It’s Not a Phase…and 4 Other Things I Want People To Know About My Son’s Anxiety and Panic

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I get it. People mean well. They  are trying to be sympathetic and make us all feel better. Anxiety disorder and panic disorder are big, scary, frightening ideas. Nobody wants to know that somebody they know is struggling with something like anxiety and panic, especially not when that somebody is a child. So out of a desire to make everybody feel better, people have been known to say some less than helpful/comforting/correct things…things I would prefer to never have to hear again, but know I will be addressing time and again.

“He looks fine.” – What is fine? Have you seen him smile, because we haven’t recently. At least not the genuine sort of smile that can light up his face. Anxiety is a stealer of joy. It has stolen our son’s joy and the smile that accompanies joy. He’s not fine. What you may see is him managing to make it through the day, and there is nothing “fine” about that.

“All kids have anxiety.” – True. However most kids do not experience anxiety to a degree that is a diagnosable mental health condition. Some amount of anxiety is normal. But anxiety that’s too strong or happens too much can become overwhelming. It can interfere with a person’s ability to get things done and, in severe cases, can start taking over the good and enjoyable parts of life. My son falls into the severe category.

“I’ve never seen him have a panic attack.” – Just because you haven’t seen it, doesn’t mean it does not exist. He has them. They are real, and they are frightening, and they are sometimes debilitating. The panic attacks are a physical manifestation of his extreme anxiety.

“There must be something causing his attacks.” – Sure. Living life as a 10 year old boy struggling with an anxiety disorder – that is what is causing his panic attacks. By definition, a panic disorder is a psychiatric disorder in which debilitating anxiety and fear arise frequently and without reasonable cause. So, no. No we can’t just remove the “thing” that is causing his panic attacks. If we could we would.

“It’s a phase. He’ll grow out of it.” – All kids go through phases and they may even include some level of anxiety or uneasiness. There is no question, that anxiety is a normal part of childhood and adolescence. However, having an anxiety disorder and a panic disorder is not a phase. There is hope that with medication, treatment and time our son will learn how to successfully manage his symptoms, but this is likely something he will struggle with to some degree for his entire life. It’s not a phase…

 

 

Between a Rock & a Hard Place

Parenting a child struggling with anxiety and panic is the personification of stuck between a rock and a hard place. Our days are marked not by hours, but by the spaces between anxiety fueled outbursts or shutdowns and panic attacks.

We have very little control over the “rock” or “hard place” moments. But I’m beginning to understand that it’s the choices we make and the words we say in the “space between” moments that bring some light into our lives.

Today was one long “rock” place. My son had a debilitating panic attack at school on Friday morning and I had to bring him home. This morning, the last thing he said to me when I dropped him off at school was “I hope I don’t have a panic attack today.” So all day I held my breath, and cringed whenever my phone rang.

3 o’clock came and I finally exhaled. He made it through the day. This was the “space between” and I felt my heart lift as he came out of school and smiled at me. We enjoyed a quiet walk home together. For a few minutes today I caught a glimpse of the boy we don’t see very often these days.

And then came the “hard place.” By the time we walked in the front door of our house, the built up anxiety and emotion of the day was boiling over. I asked him to empty his backpack and that was enough to break him. The quietness of the “space between” was replaced by angry emotion and we found ourselves solidly in a “hard place.”

But back to the choices we make and the words we say during those “space between” moments. I am choosing to make the most of those moments  – savor, nurture and live for those moments. The things that happen in that space between are the things I want to remember about this season of life. I know the next rock or hard place is always lurking these days, but it’s not all hard or bad or ugly. I also know there will be a day when the space between moments will be longer than the rock and hard place moments. Making the most of the good and lovely and sweet that happens in the space between is what will help us all make it through.

Why Our Story, Isn’t Just “Our” Story

My intelligent, compassionate, musically gifted, goofy 10-year-old son has a level 1 autism spectrum disorder, and has recently been diagnosed with an anxiety disorder and a panic disorder.  As parents, we knew there was something wrong almost 2 years ago. We consulted various specialists, consented to a variety of tests and assessments, and our son has been in some version of therapy for almost all of the past 2 years. It took literally 7 different specialists, hundreds of hours, and thousands of dollars to get the answers we needed. All on our own, with minimal support from the school district, and very little reimbursement from the insurance company. It was a battle, but we persevered and finally wound up with our current treatment team of both a psychologist and a psychiatrist who are now helping us move in the right direction.

And we’re one of the “lucky” families. We have access to mental health professionals, and the ability to spend both the time and money needed to help our son. But there are millions of children in the United States who do not have access to the resources necessary to successfully diagnose and treat mental illness. And that is why I say our story, isn’t just “our” story.

The Child Mind Institute, is an independent non-profit dedicated to transforming the lives of children and families struggling with mental health and learning disorders. They publish an annual report called Speak Up For Kids, that brings together the most current information on child and adolescent mental health. I would urge everybody reading this, to take the time to read the entire report at the link above, but provided here is a snapshot of the information.

The report shows with startling clarity, exactly how many children are affected…

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How many of those children and youth are not receiving the treatment they need…

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And why they are not able to access treatment…

I know how hard my husband and I had to work to get our son the diagnosis and treatment he needs. It breaks my heart to know that there are millions of other children JUST LIKE HIM, who need the same level of care (or more), but are not able to access the necessary resources. Our story is the story of millions of other families in the United States who are struggling with mental illness.

1 in 5 people will be affected by mental illness in their lifetime, but everybody is impacted through friends or family. Our story is not just our story.

Ripping Off The Bandaid

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These are the lessons I have learned since deciding rip off the bandaid to share both my son’s diagnoses,  and our family’s journey,  with the world.

  1. A “label” isn’t always a bad thing –  We spent a long time not wanting to “label” our son, and therefore were not straightforward with him, ourselves or others. This came from a place of trying to protect him from the big, bad world, but in the end actually made him (and us) more vulnerable. The day we sat him down and for the first time had a conversation that included the words autism spectrum disorder, anxiety disorder, panic attacks, and medication, was actually a good day. We gave our son the words to begin to understand and talk about what he is struggling through. There is both both knowledge and comfort in the labels.
  2. We are not alone – In the first minutes of linking this blog to my Facebook page, I received private messages from 6 different people talking about their own, or their child’s, experiences with anxiety, panic, depression, sensory processing, and autism spectrum disorders. Within minutes I went from feeling like my world was very small, to realizing that my world was big, and wide, and there are loving arms to hold us up when the burden seems too great. There have also been people who my son admires deeply, who have come to me with their own stories of struggle. Being able to share those stories with my son, along with the knowledge that these are adults who both care about him and can understand what he is experiencing has made parts of his world a little less frightening.
  3. Being honest, doesn’t guarantee universal understanding – Most people have been amazing, supportive, and understanding. Most, but not all. I have come across skeptics and naysayers. These are the people who even after hearing the diagnoses, still say “but he seems fine,” or “are you sure?”, or “he’s just going through a phase.” No, no, and NO! I am thankful that the amazing, supportive, and understanding people far outnumber the skeptics and naysayers.

Ripping off that band aid was hard. But we did it. It stung a little, but mostly there has been fresh air. And there is so much healing to be found on the other side.