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.

Love, Faith, and Anxiety

Maundy Thursday is the day that Christians commemorate the gathering of Jesus and his disciples for the Last Supper. Maundy comes from the Latin word mandatum, meaning commandment, in reference to Jesus’ teachings about a new commandment. “I give you a new commandment, that you love one another. Just as I have loved you, you also should love one another. By this everyone will know that you are my disciples, if you have love for one another” (John. 13:34-35, NRSV). That piece of scripture, and it’s message,  has been woven into my life for as long as I can remember, but last night I felt those words in a way I had never experienced them before.

I’ve written before about the internal struggle my son wages between his love for God and church, and his inability to be in large groups of people. After a year on medication to ease his anxiety, he is generally good on Sunday mornings – he knows what to expect, can position himself in the sanctuary in a way that offers an unobstructed escape route, and has figured out how to entirely avoid the over-peopled parts of church. He has found a balance that allows him to participate in worship and fellowship, without being too overwhelming.

But every now and then, he finds himself in a situation at church that is outside of his comfort zone.  With the decrease in predictability comes an increase in the potential for anxiety or a panic attack. Such was the case last night as we observed Maundy Thursday.

He was trying so hard to stay in control. I could see it and I could feel it in his tense body seated next to me. But shortly after we were seated – in a sanctuary that was darker than he is accustomed to, in a seating arrangement completely different from on a Sunday morning, in a worship service filled with heart wrenching words and haunting music – he realized he was not in control. And his chosen means of attempting to hold off the panic attack was to bury his head in my lap and squeeze his eyes tightly shut.

So it was that I found my sweet boy – who is almost as big as me – curled into my lap as the words of this Taize chant washed over us both…”Nothing can trouble. Nothing can frighten. Those who seek God shall never go wanting. God alone fills us.” Over and over I heard and sang those words which were simultaneously heart breaking and soul filling. My heart broke for Jesus, for the world at large and for my son – as I sat holding my son, I felt my heart-break wide open.

The message of Maundy Thursday is love. Love in its purest form. Love for one another. Love in action. And while I am still reeling from the pain of last night, in the light of this day I know that above all else it is our collective love and faith that will see my son through this world.

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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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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.

It Might Be Time for a Dream Catcher

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When I was 11, my grandfather had a brain aneurysm rupture. He was hospitalized for days before he died. The entire time he was in the hospital, I had a horrible dream each night that a masked man with a gun was threatening to shoot every person in my extended family. That dream was my adolescent brain’s way of dealing with the intense emotions surrounding the loss of a loved one. Eventually there was a night where I did not dream that dream.

When I was 26, I was stopped at a stop sign in a shopping center parking lot and a man on a bike rode right into the front of my car. Then he picked up that bike and threw it through the windshield of my car, came around to the driver’s side and began threatening me. Bystanders had to physically pull him away from me. Following that incident, I had intense, dark and really frightening dreams that were a byproduct of PTSD. Eventually there was a night where those dreams did not come.

Recently, I have been having dreams where my son is somehow not safe and as hard as I try I am not able to protect him from a threat (sometimes he has been taken away and I don’t know where he is, sometimes there is somebody trying to hurt him and I can’t get him to safety). These dreams are clearly a result of the fear I feel when I send him out into the world each day. Every morning, I take a deep breath, put on my brave face, send him out into the world, and then spend the rest of the day praying he makes it through without a panic attack or an anxiety fueled angry outburst. Some days are fine, some days are awful. There is no way of really knowing which way any day will go. So every night, I lay in bed and pray that the next day will be one of the good days, that the next dosage increase to his anxiety medication will be the one that works, that the next psychologist appointment will be the one where my son finally decides to talk about what he is feeling, that, that, that….

And eventually I sleep.

I know that eventually there will be a night when those dreams will not come. Eventually.

In the meantime, it may be time to hang a dream catcher in our room to help me hang onto the good dreams.

Your Most Important Tools

I was able to do one of my most favorite things today – chaperone a class field trip. I was with my daughter’s 3rd grade class at a living history presentation about the daily lives of Native Americans. The educator giving the tour asked, “What was the most important tool the native people had?” My daughter raised her hand and without hesitation answered, “Hope and positivity!”

The answer momentarily threw the educator off – it was a good answer, just not the physical thing that he as actually asking about (by the way – the answer he was looking for was tree sap!) After I got over stifling my giggles behind my hand, I stopped and thought about her answer. There is no doubt they did need a ton of hope and positivity, as well as perseverance, faith, (and tree sap) to make it through. Then my thoughts went a little deeper and I realized that the most important tools I actually have in my personal parenting tool kit are…hope, positivity, perseverance and faith.

Hope for a better tomorrow for both of my kids. Positivity, along with humor, to get me through the toughest of times. Perseverance to get my son the right diagnosis in order to get the help he needs. Faith that even in the darkest times, God has us in his hand.

Hope, positivity, perseverance and faith have served me well so far in both parenting and life. I’d like to think that my daughter’s answer is something of a reflection on what she sees in me, but I think she was probably echoing something her amazing 3rd grade teacher said in a social studies lesson. Even so, if she has latched onto that concept at the age of 9, I feel pretty good about how she’ll fare in this world as she grows up. Being a neuro-typical younger sibling to a neuro-diverse older brother who also struggles with anxiety and panic is hard. I spend as much time worrying about how she is fairing,  as I do getting my son the care and support he needs. Hearing her unwavering conviction in the power of hope and positivity helps me to know she’s going to be just fine. 

My son, is a different story. It’s hard to have hope or be positive when you’re struggling under the weight of anxiety and panic. It’s hard to persevere when it takes so much energy just to survive. So I need to have enough of all of those things to get us both through the the dark days and have faith that there are better days ahead. 

Hope, positivity, perseverance and faith are my most important tools.  (Although I also now have a wealth of information on ways to use tree sap should the need arise!)What are your most important tools?