An Update

About two and a half months ago I wrote about my son's anxiety (read HERE).  It was hugely cathartic for me, and I hope someday it will be cathartic and reassuring for him. In some ways it feels like his diagnosis was a lifetime ago. And like most things in life, it also feels like it happened yesterday. To be blunt, we have come a long way. To be honest, we have a long way to go.



When we finally arrived, after seeing a therapist for a few weeks, at the point where we knew we needed to loop in our pediatrician and talk about medication, I felt both a deep sense of relief and an intensified fear of the unknown. I could not wait to start his medication, and I was terrified of starting his medication. Researching side effects, and overall effectiveness of a medication, particularly in children, is a scary thing.

My son was ultimately put on a common selective serotonin reuptake inhibitor (SSRI), and forever more I will stand by the effectiveness of this drug, for him...for now. He started on a very low dose, and his pediatrician and I hoped and were optimistic that we would be able to keep him at that dose. While we were warned that the drug could take weeks to have any significant effect, I maintain that we saw a difference in him immediately. Perhaps a placebo effect, but my gut tells me it was more than that. I think the biggest and most immediate change was that he began sleeping. My eight year old child was finally starting to sleep through most nights. Bless. It. My heart broke for him and all of the sleepless nights we had struggled through, when he woke up after taking his very first pill and was so excited that he had slept. He was excited to have simply slept. He was proud of himself for having simply slept. He was relieved to have slept, but was skeptical too, as he should have been, since we had tried (and failed with) so many sleep remedies before.

Also, his "tantrums" ceased almost immediately. He smiled and became a hugger reborn. We witnessed tiny but more frequent glimpses of the little boy we had once been so familiar with. We continued with weekly therapy and talked some good talks. And while life was immeasurably improved I still can't shake the guilt.

I remember sitting in front of the doctor in tears quietly whispering that I wished we had done something sooner for my child. Even now there are times when I can not shake the images of his anger, his tantrums, the terror and sadness and frustration in his eyes. Sometimes I can not get out of my head the sound of my shrill voice screaming at him. Sometimes I can feel his sister's frightened tears as I wipe them from her tiny cheeks. And I think to myself...three, nearly four years. We struggled. He struggled. But it took years to finally get him the help he truly needed.

And yet, as things go when cruising through life, before we knew it he hit a wall, plateaued if you will. It was amazing, disheartening and eye opening to watch the medicine decrease in effectiveness. The pediatrician had anticipated that this might happen, and we were scheduled for frequent (and I mean frequent) med checks. In the beginning I was unsure how long he would take the medication, but once I saw the glimmer of hope that this SSRI brought, I became desperate to continue with it. At every med check my heart beat faster, wondering if we had arrived at the point where the doctor would recommend not continuing with medication. Thankfully just before our eleven day road trip vacation extravaganza his dose was doubled and prescription refills granted for the next few months. I was so hopeful that we had found "the answer". I was so naïve to think it was so.

I have to say I signed a tremendous sigh of relief when I knew that we would have a higher dose of medicine for our great family getaway. Because my pre-medicated son would have hated everything about our vacation. He would have hated the uncertainty of the drive. He would have hated the lack of schedule (in fact, he would have hated summer in general for the lack of schedule alone). He would have hated going to restaurants. He would have been paralyzed by the thought of which rides to ride at amusement parks. Tears would have been shed. Hearts would have been wounded. He would have tried to control each of our decisions. He would have missed home and the cat and he would have been miserable. My husband and I counted our blessings, and then watched as we saw anxiety try to push through the medicine and pull my son under again.

We arrived in South Carolina the day after Hurricane Arthur vacated. We were lucky. But Rip Tides remained, and they terrified my son. The girls...not so much. But him...he spent every second that he was in the ocean, not jumping waves or body surfing, but instead pulling his little sister "to safety." He demanded we spend our days at the pool. And honestly, it was easier there anyway because holy wind...so we did. Once the threat of being sucked out to sea diminished, we ventured back to the ocean. After all...we drove umpteen miles and so many hours to play ocean-side...not pool-side. We had one good morning, and then during an evening stroll met a man who had hooked a baby Black Tip Shark. Or Black Finned Shark. Or Some Kind of Shark (perhaps the evening stroll along the beach had been preceded by many Coral Reef Splash drinks??) Either way the next morning was met with more demands for the pool. Because, and we should have seen this coming, the kind fisherman who let my kids pet the Something-Something Shark also casually mentioned that "if there are babies out there, there are also mamas out there." Plans finalized. Pool vacation it was.

Since we have been back we have had another med check and it took all I had in me not to bring up how I felt my son was once again spiraling downwards. I really do not want to entertain the thought of an increased dose yet. But there are times where I feel him slipping. Succumbing. And I'm scared and sad.

While his medication initially allowed my husband, oldest daughter and I to spend two days and one night away from home hiking Mt. Katahdin, even the higher dose is no longer able to usher him through sleepovers at his grandparents.

Where his medication has provided him with a more sound sleep and I can now kiss him goodnight and not wake him up, (before the slightest touch would cause him to wake), he still wakes in the middle of the night roughly four times a week. Thankfully the medication has him in a place where he is able to fall back to sleep with relative ease (provided his father or I are next to him).

While his medication has allowed us to breathe again as parents, and as a family, we are learning that any sort of discussion regarding change...or me taking a vacation, or him going to college, or his sister going to college, or his cousin going to college is enough to allow anxiety to regain control of my child.

While his medication has not protected him from hurt feelings or feeling intensely inadequate in comparison to his friends, or those he looks up to, I am so thankful that medication has allowed the relationship between my son and his older sister to re-blossom. They used to be so close. So. Close. For years I chalked their increasing distance up to a boy/girl dichotomy. They could not find common ground because they were so inherently different is what I told myself. But since being on medication, I am in awe of the change between those two. They do have common ground. They can have a conversation.  They do like spending time with each other, and value each other's friendship and trust. Years of hurt feelings have been repaired in just a couple of months. And while I am so thankful, when I catch them playing together, or chatting over Harry Potter, or asking the other's opinion, I can't help but kick my own ass for not pressing therapists and advocating for bigger interventions years ago.  Yes, bickering and yelling and tattling still happens. And there are times when I want to throttle them both, but I can clearly see their love again. And for a while it was so one-sided. My son has always idolized his big sister, but for far too long she had a hard time...I don't even know what the word is. But she had a hard time with him too.

Ultimately we have learned that we can never let our guard down. We have learned that he takes the safety of his little sister as a threat. We know that when he begins to amass an arsenal of Nerf guns and plastic swords in his bedroom, or when he insists on sleeping with a "weapon," that we better figure out what he is thinking about, or what he has been exposed to. He struggles still to articulate his feelings, and we know that when he starts to unravel at any given time in a day, we need to quickly backtrack and try to eradicate the source of stress (be it a conversation, an activity, a show, a chapter in a book, a news clip).

As parents we have to be intuitive and smart and calculating about what we say in front of him, because we do not want to exacerbate his level of stress. We can not talk about moving. Or my husband's tenuous job situation. Or celebrating my 40th year and our 15th anniversary via an adult only weekend getaway. We can not talk about maybe taking the same weekend hike with him when he is in fifth grade. We can not talk about school. We have had to make a plan for school that includes homeschooling this year, if the first thirty days don't work out for him. We do not expect completely restful nights. We are very, very careful about what responsibilities we give him.

While his medication has allowed us to restock our patience and breathe easier, the wounds are still so fresh that when he has a bad day I immediately think the worst. Immediately I am in the place of "worst case scenario," telling my husband that this isn't working. None of it...the medicine, the therapy, the bazillion hugs that he requires in a day...none of it is really working. I can not ever pull myself from thinking of his future self. I worry about how bad this could get for him.

This learning curve is steep. It is fluid. It is not fun and can be exhausting and frustrating. There is no stopping anxiety. There is only a pause. Perhaps a mute for a couple of days or weeks. There is only coping. Not a cure.  

My Anxious Child

Honestly we had had such a difficult time with him, starting around the age of five, that I was beginning to both fear and remain hopeful that there was something diagnosably wrong with him. It was bizarre. I almost wish that someone would tell me that he had X and to fix him we needed to give him Y. Problem solved.

But of course it is not ever that easy.

Today:
This post is one that I have started to write for almost four years now…almost every day I write this story, his story, at least in part, in my head. The beginning, the middle, the end…they beat on in my heart day after day after day. And while writing is therapeutic and organizational for me; while venting through words allows me to focus, telling my son's story could be detrimental for him. I am hyper-aware that ultimately his story is not mine to tell, and I will hold close to my heart the most private of details.

But I have decided to share what he struggles with because I now more than ever I believe we need to talk about the force that anxiety can be. How anxiety for a child, and his or her family, can be all consuming. How anxiety can rob a kid of large chunks of his or her childhood. How anxiety can spark the disconnect that can become a family's touchstone when one member is struggling. How we're not alone; how I don't want to feel alone. How I love my son.
 
A few weeks ago:
The day I decided to actively seek out a therapist for my son, again, was a day mired in physical pain. Perhaps a touch of it was the flu, perhaps most of it was a symptom of the depression I felt I was surely sinking into as a result of my child's behavior. To be honest I wanted so badly to write down what I was feeling that day, and the days that immediately followed, because I knew I wouldn't be able to adequately capture with words what I was feeling; to document what was happening to my mama heart, a few days or weeks removed. But I was too tired. Too defeated. Too emotionally drained. Parts of me had truly given up, let go, and given in once again to the chaos that my oldest middle child could so easily craft.

But I knew my son needed help. I knew I was not able to parent him the way he needed to be parented. In fact, I realize now that without intervention nothing we did as parents would work. And recognizing that, coming to the realization that I could not help him, was hard in part because I see him as a love-bug, a true sensitive soul. A little boy who wakes up in the night and wants to be rocked back to sleep. A kid terrified of sleep-overs. A young man trapped in an eight year old body. A kid who so intensely feels the pressure, even at such a young age, to fit in with his friends. And even with help I worry that I can never be the kind of mother that he needs. I worry about his future self. His adolescent self, and I realize that it is likely that this anxiety, his anxiety, will always be an undercurrent for him. Something waiting to grip him and pull him under. And I wonder if he can feel that I wonder if he worries about that too.
  
A couple of years ago:
For the past year or so I’ve been describing my now almost seven year old son as a boy stuck between two worlds. On one hand, he is still such a little boy. He has anxiety at bedtime; he does not like to play alone. My son, my middle child, would never think to storm off to his room and slam his door in an attempt to escape the horror of boundaries or punishment. He would rather sit in the kitchen while I prepare dinner and listen to me rant and rave, imploring him to leave his little sister alone. He still holds my hand whenever we find ourselves walking side by side. He loves to cuddle, and his hugs before bedtime, his complete devotion to squeezing his arms around my neck and burying his face in my shoulder, are something worth struggling through the day for. He sleeps with a blanket that he has had since birth. And the tantrums he can pull off would rival those of any two-year old.

And yet, paradoxically he’s a bit of a punk. He struggles with big-boy-ness and wants so badly to BE a big kid, a tween, or pre-tween, or pre-pre-tween. He wants his independence, embarrasses in front of anyone, and will retaliate with a harsh tongue. Sometimes when he’s angry I close my eyes and picture him as a sullen teenager who has just had the car keys revoked for a week. He wants to move forward, to be bigger, to grow older and mature quickly. He will challenge many of my decisions and does not like to be told no. He has dealt with a smidgen of being made fun of at school. He has gotten into a smidgen of trouble at school, but has also received awards for kindness. He hears things on the playground and listens to the big kids on the bus. Yes, he can be a little brute when he wants to. He’s sometimes cunning and can beautifully twist his words (or mine!), and tell half-truths. And in his young life he’s dealt with some pretty big boy issues, which oftentimes simmer just under the surface for him. Most days I have difficulty deducing who he is going to be…the big kid, or my little boy. The first grader or the going on sixteen year old.

This child of mine. This little boy. He hugs with his whole body. Clinging to friends and those he loves with such force sometimes it knocks them down. He loves. And then there are times...times when it feels like he is not himself, like he cannot control himself. Times when we were on vacation and he had such a catastrophic meltdown that we left him on the floor of the hotel bathroom, thrashing and screaming. The rest of us waited outside for his storm to pass, tears silently streaming, little sisters quietly gripping hands and asking if he was ok. Praying other guests weren't disturbed, or worse alarmed and frightened for him. Imagine the feeling. Imagine being a mother. So helpless that you are standing there, on vacation, clinging to your other children, wiping tears from your eyes, weighing the pros and cons of your child being removed from your care.
 
Today:
It has been many months of anger and sadness and frustration; weeks on end spent walking on eggshells around my son. Far too little laughter, and far too many tears. Too many instances watching my little boy try to hurt himself; too many times listening to him talk about dying, or how he wished we would give him away. He has spent too many days after school paralyzed by little decisions about homework. Watching his sisters completely pull away from him. Spending my afternoons yelling and crying and looking for him when he takes off, terrified of the mood he will be in when he gets off the bus. Forcing smiles when I leave the house. Sitting up with him for hours in the middle of the night so many times in a week.

It has been all of this, and so...here we are again.  I truly feel as though our family has been thrown into a constant sense of chaos. I feel as though we are falling apart and some days? Some days I am too tired to try to put us back together again. Some days I want to do nothing more than run. My anxious child...he makes me want to run. Far away.

For my son, his anxiety can stew inside his little body for the sum of his school day. Or it can burst forth in an instant on a weekend morning. Sometimes he snaps in an instant and sometimes he can steep in his anxiety for the entirety of a day, teetering on the edge of control for hours. The unpredictability of his emotions and his ability to contain his anxiety, express it appropriately or lose control completely, is nothing short of exhausting. My nerves are shot. And he is tired.

Sometimes the lack of a schedule, and the unknown can set him off. Sometimes it is excitement or anticipation. Sometimes it is not getting his way, not fitting in or not having what other kids have. We have noticed recently that if he is faced with feeling out of control of a situation (i.e. something is unpredictable or sprung upon him) a coping mechanism is to demand we purchase something for him. A new wallet. New mesh for his lacrosse stick. A game for his DS, a new handheld gaming system. A game on his iPod. It could be anything. Unfortunately all of these demands are met with a solid no, and the situation, and his helplessness, spiral further out of control. Thankfully through CBT we have devised a management plan for his “needs” that seems to be working for now.

Sadly my child’s anxiety almost always manifests as anger, and for a long time…for too long, I did not realize how closely tied the two were. I am realizing now that I was punishing my son for behavior that he could not articulate, for emotions he was unable to harness. For stress that turned to near rage and always an intense anger and frustration with himself. He knows what happens is not acceptable nor normal behavior for a maturing boy. He recognizes that there is work to be done and he has been trying so hard to reign himself in. He also experiences extreme sadness when he is having a “tantrum” for lack of a better word. He cries. He expresses regret. He apologizes. He is up and he is down. He is a little boy in the grips of anxiety.

Since starting therapy we have seen his anxiety heighten. We have seen some highs and lows emerge that make us wonder about depression. He is now under the direction of a pediatrician as well as a therapist and has started medication in conjunction with his therapy. I feel like I am limping towards the end of school, because what happens at school is a stressor for him. I feel like I am dragging his exhausted body behind me as we work towards mid-June and the freedom that summer brings.

I am only recently able to fall asleep without laying awake waiting for him to wake up in the middle of the night upset. I am terrified of our upcoming vacation. What should be a fun and exciting time for our family has the potential to be a disastrous twelve days for my kiddo, and by default the rest of us. Because for him, the unknown, the lack of a definite schedule or the pressure to choose the “right” ride at the amusement parks may be too much to handle.

Always:
And yet what I desperately want you to know, and what I try so hard to remember, is that my son is a good boy. He is a kind boy. He loves his family. He is an amazing big brother. He is an amazing friend. He is an amazing student, school citizen and teammate. He is responsible and smart. He loves with his whole heart. He is an amazing son.

I am praying that the combination of continued therapy and the right medication will provide some relief for my son. For my family. But I also pray that people will not look at my son differently going forward. I know those who love my boy won’t. Those that matter will continue to love and support and listen to me vent (thank you so much to those of you who have listened to me vent!). You’d never know the turmoil my boy faces on a pretty regular basis just by looking at him. And in telling this story I’m hoping that your mind and heart will be opened up to others, both children and adults, who may be privately suffering with anxiety or other mental health challenges.

Today:

There is still an underlying tension. Things are far from perfect and so, so far from easy or predictable. More times than not I am still forcing that smile on my face, and to some degree, I think so is he. And because of that, and for all of this, I am sad.

We are trying. Every day is an attempt to get better. To laugh more and cry less.