People who equate truth with fact are missing the point.

Tears and Triumph – Mostly Tears, Though

I went to Carter’s end-of-the-school-year awards luncheon last week and it put me in a thoughtful mood. This year has been one for the record books. I expect we’ll look back on it as the period during which we lost our emotional virginity. Interestingly, while Carter is probably more obviously unwell than he was last year this time, Brian and I are more OK now than we were then. We are adjusting to our new normal, which is not to say that it’s getting any easier, just that we go down with Carter less often.

During February and March of 2009, after about 18 months of moderate stability with a stimulant and sleep meds, Carter began to fall apart. This is a fairly typical pattern among kids with mood disorders: an initial diagnosis of ADHD leads to a prescription for stimulant meds which leads to a significant worsening of manic symptoms.

We were stunned by what was happening to Carter and had no idea what to do. Off meds, he almost never slept, was so hyper and impulsive we were constantly concerned for his safety, and was acutely anxious all the time. On stimulants, he was a snarling, angry beast, kicking and hitting other children, hurting himself, cussing a blue streak. What the hell were we supposed to do?

By late spring, the developmental pediatrician, Dr. H., who had been taking care of Carter told us it was time to transfer his care to a pediatric psychiatrist. That certainly seemed reasonable to us, so we made an appointment with Dr. S., who could see us in early August.

Here is where I share with you an important lesson: when transferring the care of a chronically ill child from one provider to another, do not allow the first provider to delete your child from her or his patient list until the day of your first appointment with the new provider. For two months, Carter was not Dr. H.’s patient anymore, but he wasn’t Dr. S.’s patient yet. Through June and into July, we tried to hobble along and do the best we could, but by late July Carter was acutely ill, and it was like nothing we had ever seen before. Dr. H. couldn’t do anything. Dr. S. couldn’t do anything. We hadn’t yet found our support group, so we had no one whom we could ask what to try or where to go.

It was terrible, but I was trying like hell to hang onto my job as director of a child care facility. What a mess. Carter spent much of his time in his class there struggling to get away from the other kids. Often, I had to leave work early, and several times Carter attacked other children. I was terrified that he would really hurt someone, but at the same time I didn’t think it would happen. Never, ever underestimate the power of denial. I still wanted to believe that Carter had unusually severe ADHD with anxiety. The words “mentally ill,” “bipolar,” and “emotionally disturbed” seemed like huge overreactions to me and I was neither ready nor willing to consider them.

The other kids, though? They knew. They could see that Carter was different and they played on that. When I saw kids taunting my boy, it took all of my self-will to respond appropriately because my body would be screaming at me to grab any child who bothered my little boy and body slam him repeatedly. These were children I adored, but those moments were unbearably painful. It’s amazing, the reaction my body has to a threat against my child. And not even just my child. My reaction is bigger for Carter than for the other kids; he’s more fragile, needs more of my protection, and I seem to know that in my DNA.

And then came The Day. I don’t remember how the day started, but by 9 am one of Carter’s classmates came running down the hall to my office to get me. We ran back and I found Carter’s teacher struggling (God love her, she worked SO hard all summer.) to pull him off another boy, E., around whose neck Carter’s hands were wrapped. It was bad. E. was choking and gasping and though there were no bruises, his neck was red for over an hour.

The next decision I made is puzzling to me, but again, never underestimate the power of denial. I helped Carter calm down while the teacher helped E., and then, instead of taking Carter home, I left him in his class and went on working.

What I know now about that summer is this: while I knew that Carter wasn’t OK, while I knew that he needed more help than he was getting, all those years of doctors and others denying my concerns had done their work on me. I was of two minds and those two minds were battling for supremacy. That summer, the part of me that believed all my concerns were huge overreactions dictated many of my actions. Even as I was restraining Carter to protect him from hurting himself or dodging his comments about the methods he would employ one day to end his own life, the voices of a hundred naysayers were loud in my mind.

I wasn’t back in my office but 20 minutes before I was running back down the hall to Carter’s classroom. The Carter I found there was like a panicked wild animal. He wasn’t hurting anyone, and I don’t know if he was trying to hurt himself, but he was entirely out of control. He was screaming terrible things, throwing everything he could get his hands on, and slamming his body against the furniture and walls.

I saw him in that state and the only thought I had was that I had to get him away from the other children right away. I scooped him up and ran out of the daycare wing and into the church from which the daycare rents its space. I dragged him, literally kicking (I had huge bruises on my shins for weeks afterwards.) and screaming, into a small room that had an old, broken down couch in it.

He and I were in that room for the next three hours. I took this picture that day (Look how thin he was!). He raged on, and on, and on. He begged me to kill him; he grabbed my phone and tried to call the police to come and arrest him. He cycled among anger, desperate depression, and terror. I restrained him, then rocked him, then blocked the door to keep him from running away, then restrained him some more. I wept with him.

Brian and I were texting back and forth (We couldn’t talk; Carter was far too loud.), trying to decide what to do, and we just didn’t know.

Eventually, as Carter began to get tired and hungry, he was calm enough that I thought I could get him back through the daycare (I would have sneaked right out the back if I hadn’t needed to get my keys from my office.) without traumatizing anyone. I held onto him and we walked down the hall while he cried, “You have to kill me when we get home, Mommy! I need you to get me arrested! I have to die. I’m the worst stupid kid ever and you have to kill me!” Those words had a physical effect on me, like I was being thumped hard on the chest with a dictionary.

The tears were rolling down my face and into the top of my shirt and there was a similarly tear-streaked teacher’s face in the door of every classroom.

Brian met us at home and I have never in my life been happier to see anyone. I love that man for 10,000 reasons and probably more and I know I would love him no matter what kind of life we were living. When life is a long crisis, though, having a partner is everything. He came out to the driveway as we pulled in and in that moment, the situation changed from me trying to control a wildly out-of-control situation, to Brian and I working together to protect our baby from a monster.

For the next few hours, Brian and I played tag-team, alternately taking care of Carter and making phone calls. We gave him several warm baths, massaged him, and put on Little House on the Prairie, but we also had to restrain him. We listened to his raging, suicidal rants, and dispensed medicine. By 3 pm, we had given him the maximum safe dose of clonidine, an amount that, if you took it right now, would knock you unconscious within 20 minutes. Carter, just over 40 pounds at the time, was not at all sleepy, though the medicine did seem to take the edge off of his agitation.

Finally, after hours on the phone (Someone, somewhere (I don’t remember who) advised us to call the 911 and summon the police and an ambulance. WTF? The police? For a 42 pound 7 year old who had been begging me all day to have him arrested? This is our healthcare system?), we went to the emergency room at the children’s psychiatric center associated with the University of New Mexico Health Sciences Center.

This of course turned out to be the wrong place.

Not only was it the wrong place, but it was also the place where we discovered exactly how freaked out I was, because when the person (nurse? receptionist? social worker?) told us we had to go elsewhere, I lost my shit. Like, yelling at people and acting like I was the candidate for the Nut Hut, lost my shit.

Some kind soul took it upon herself to scold me for said loss of shit. We titled that moment, “The Time When Adrienne Came Closest in Her Adult Life to Bitch Slapping Someone.” My Crisis Poltergeist (Who, obviously, was in just a wee bit over her head that day.) helped me to turn away from her before I administered any kind of slap at all.

Ultimately, we found the right place, and ultimately, there wasn’t much they could do for us. You know how the US healthcare system has all kinds of major issues and only serves about half the people well? The mental health care system functions about 10% as well as the rest of the healthcare system. And the pediatric mental health care system? About 10% as well as that.

So we took our boy home and we slept in shifts. I took a leave of absence from work and expected to return when school started, but Carter was far too brittle for school. I had started No Points for Style right before The Day, but I didn’t post regularly until after I quit my job and started home schooling Carter.

It took us many, many months to get him to the relative stability he (and we) enjoys today, where there is almost always something disturbing happening but we only occasionally fear for his life. (He didn’t have any psychotic symptoms until mid-fall, but compared with those suicidal rages, psychosis isn’t so terrible.) I’m shocked that it’s been just one year, and I’m deeply grateful that my memories of last summer are distant and hazy, as if they are 20 years older than they are.

I’m a different person now than I was last summer. In some ways, those differences break my heart, but there’s no gentle way for this particular cherry to get popped. I know some ugly things now, some of them about mental illness, some about the educational and medical systems that purportedly help people like Carter (and what those inadequate systems say about us as a culture), and many of them about myself.

Some of the differences, though, are pretty great. When I read the things I wrote last summer and fall, I see how very scared I was: scared of people’s opinions, of judgment, of being scolded by educators, doctors, social workers, my family, and dozens of other people. Today? I have learned that there is no room for me to be timid. Only this illness scares me.

I’ve learned a quantity of information in the past year that would rival most PhD programs – information about drugs, the companies that make them, and the government agencies that regulate (in theory) both. I’ve learned about drug research, shady practices, and a system that serves the almighty dollar always and people only occasionally. I’ve learned that here, on the ground, there are some professionals who are tireless in their quest to help children like Carter.

I’ve learned about insurance – a great deal about insurance. I’ve learned about the brain and the ways that brains can be ill, and what those ways can tell me about Carter’s future. I’ve learned to look doctors in the eye and tell them that they are wrong, without a quaver in my voice or tears threatening to spill from my eyes. I’ve learned to push hard without alienating the people whose help we need. I’ve learned to handle most things at home, on my own. I’ve learned where my limits are, and to recognize when Brian is approaching his.

Most of all, I have learned that when there is joy to jump in with both feet. We never know when it’s coming or when it will leave, but when it’s here? It’s really, really here and we all shoot out flames of happiness.

Of this past year I can only say that I’m glad its over. We are not naïve, will never enjoy naïveté again, but we are hopeful.

I always thought virginity was overrated, anyway.

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42 comments to Tears and Triumph – Mostly Tears, Though

  • Wow. I really can’t say any more. Much love to your family.

  • I cried just picturing you and carter walking through the hallway and him asking to die.
    It’s never good when you truly understand what healthcare and insurance and mental illness is like. Actually, it IS good. But not fun.

    • Oh, my God, it was such a terrible day, but I had this idea that we’d make some phone calls and as soon as we dialed the right number, people would spring into action to help him. What a terrible surprise I got!

  • I’m with Lori. I can’t begin to comprehend and have no words of advice or solace to offer you, but I think your attitude and self-awareness are both commendable, amazing even.

    <3

  • In my humble opinion, you are an incredible person. Carter is so blessed to have a mother as resilient and tolerant and wonderful as you. He knows it, too. Never doubt that.

  • Wow! You are an amazing mother! I admire your strength to keep pushing on and following your instincts to protect your child. I can only imagine how hard the bad times are and how glorious the good days can be. Although our experience with our daughter is not of mental illness, we have been in and out of doctors offices and hospitals and the fight to pursue the CORRECT healthcare for your child can be exhausting. When I lived at The Ronald McDonald House last year while Mia was in in the hospital I befriended a woman who’s child was going through something similar to Carter. I saw the toll it had on her. The Unknown she called it is what she feared the most.

    You are truly an inspiration my friend! Thanks for letting us into your world.

    • Thank you! And you’re an amazing mother, too. Isn’t it amazing, the connection among us parents of kids with SN, no matter how different those needs may be?

      And I have to tell you, my anger at the health care system? Pretty much bottomless. Not the people who actually deliver care; most of those people are amazing, but the system itself.

  • Mom of Bug

    Hi Adrienne,
    Just thought I’d stop lurking & let you know that I found you through a comment you made on Jani’s Journey. I’ve been following Michael’s blog about his daughter’s illness since Mental Floss featured a link to the LA Times story that started their crazy media journey.
    I can’t imagine the strength it takes for you to just get up every morning and I salute you for being able to share your story so that people know they are not alone.
    Fortunately, my son is healthy, but other subjects you have covered, like bullying, have hit me very close to home.
    I live in Canada, and our health care program has it’s problems, but I hope that eventually your government will be able to provide families with the support they need, not just the support they can afford.
    Now that I’ve found you, I can’t stop reading, you have an amazing talent for writing and hopefully you can turn that into an income so you can cross one of the worries off your list!
    I’d buy your book!

    • Yay for de-lurking! Love that!

      Yes, I admire the Schofield’s so, so much. Carter is nowhere near as ill as Jani, yet they find so much time and energy for activism! Amazing.

      Thank goodness the US has taken its first step toward a just health care system.

  • Thank you for this!

    I have gotten to know you as Adrienne, kick-ass hysterical writer woman. Even though I have read your posts about Carter, I have not really felt connected to you as Adrienne, Mom to Carter. I can more clearly see now how the two are related, and how each colors the other.

    And how each is improved by the other.

    Thank you for this more fully fleshed-out version of yourself.

    I love you all the more.

    • Thank you! And you know what? As I have begun to carve out significant time for writing, everything about my life has improved. But before Carter, all of my writing lacked focus and intensity.

      If someone offered me a magic spell to cure Carter right now, I would take it, no question. Nothing is worth his suffering, but he has sharpened me.

  • I’m impressed with your strength.

    Your love for Carter and your husband shows in your writing.

    I don’t even know what else to say, because it all seems so trite. I am sending good thoughts your way and am glad that your year was better than last.

  • Oh wow. I cannot even imagine. We’ve had our struggles with health issues with both boys, but I honestly cannot imagine what you’ve been through. You are a very strong woman, and it sounds like an exceptional mother.

  • I just can’t imagine going through such a tough time – you’re clearly an amazingly strong woman. Your family is in my thoughts.

  • You are a powerhouse of awesome.

    I just wanted to say that I read, and I wept a bit, and I admire your family a great deal.

  • Adrienne, we’ve been following each other on twitter for a fair little while now, but with my inundated life, I’d not stopped and really read your blog.

    My 8 year old daughter is ADHD and bipolar. My 5 year old son is bipolar with anxiety disorder, and ADD without the hyperactive subtype. We were really fortunate that before we began medicating my daughter for her ADHD that we found a pediatrician who knew about pediatric bipolar disorder and started her on those meds first.

    To say that A’s toddler years were horrible would be doing a disservice to reality. By the time things finally settled in she was expelled from three different daycare situations. I spent two weeks one summer crying every day in between phone calls to caregivers, daycares, school programs, the ARC, neuropsychologists, community wraparounds, etc. It was my own introduction to the US Healthcare system as it relates to pediatric mental illness, and I think I have PTSD from it because when my son started to become symptomatic for the anxiety disorder I literally felt like I couldn’t breathe.

    I’ve been fortunate to find the right med combination for my daughter and a really good therapist, and she is doing incredibly well right now. It would be hard to tell from interacting with her today that she used to have severe and frequent violent episodes. I know that we are not even close to out of the woods, puberty is not too far in the future and from other moms of bipolar kids I understand this can really &$*@*! up the medications efficacy, but I guess I’ll address that when I get there.

    Unlike your relationship, my marriage did not survive. It was troubled to begin with, unfortunately, and my husbands own mental illness worsened as our home life became more and more stressful.

    I am a little bit in love with your blog, mostly because even though every child who suffers mental illness is unique and different, I still understand a lot of what you have gone through and continue to go through, and I feel a sense of kinship.

    Your writing is so eloquent and clear. You’re added to my favorites list, for sure.

    Take care.

    • Wow. I’m so glad you made your way over here! I’m sure you know, there’s nothing in the world as helpful as talking to people who are living with the same shit. I love this comment, and you’re right: whatever the differences are in our two situations, the feelings are the same and that’s what matters. And PTSD? Hell yeah. Carter’s first two years were so traumatic for me, I broke out in a cold sweat every time I heard a baby cry until a year and a half ago.

      Thank you! I’m raising my glass (which is not a glass at all but a can of diet Coke, but it’s the thought that counts, right?) to a new friend.

  • I hope that if I am ever in a situation such as what you described that I am able to summon half as much strength as you have shown. Hang in there, my thoughts are with you.

  • Very few blogs make me cry, but your account of what happened between you and Carter while you were both locked in the room of that church reduced me to tears. I just found you and your blog through Twitter and I’m hooked. I have the deepest respect for you – for your strength, your candidness, and your willingness to educate yourself and others. And most of all, for your love for Carter, which is palpable in all of your posts about him. You make me want to reach through my computer screen and hug both of you.

    As someone who’s struggled with depression on an off throughout my adult life, I thought I knew a lot about mental illness. It turns out, I didn’t know squat. Thank you for sharing your story and Carter’s.
    Kristin @ That’s What She Said recently posted..Pucker Up

  • This scares me.

    This uncertainty of life scares me, and rivets me.

    I don’t like to read this, but I know I have to.

    I have to.
    Alexandra recently posted..A Good Scare Will Shut You Up — A True Halloween Tale

  • Hey Adrienne,

    I came across your blog from “Hopeful Parents”. This post totally breaks my heart. I’m in my last year of med school (going into primary care despite many encouragements to the contrary) and have come cruelly face to face with the inadequacies of our system especially in the area of mental health (not only professionally, the entire mental health system of my med school consists of 1 psychiatrist for 800 people…secret tragedies no one discusses happen here all the time). Our health system is embarrassing in so many ways but particularly when it comes to mental health (something I am preparing to fight for in my career). I am often ashamed to be a part of it. But I’m so glad you were able to find a few professionals who were willing to fight for Carter.

    Much love and peace,

    Melanie
    medkid recently posted..Adventures in restorative yoga

    • Oh, thank you. And for all my complaints about our shameful mental health system, I have wonderful things to say about dozens of individuals – people who are busting their asses to give the best care they can. While you are fighting, take care of yourself first. The system will chew you up and spit you out if you aren’t careful, and I’ve seen some wonderful people get burnt out, and that’s when they become part of the problem. Look out for yourself first, and you will help many, many people!

  • True story and good advice! Nasty system. This is where the 3+ years of therapy learning how to care for myself come in for sure. 🙂 That and my backup plan to be a yoga instructor…! Thanks for the reminder though, it can’t be said enough.
    medkid recently posted..Dirty Little Secrets

  • Ado

    Oh my God. Reading all this stuff – what you have been through on all fronts, and you are amazing me with your maternal strength. I’m crying again at this one. My heart really really goes out to you my friend. And at the back of it, the writer in me is marveling: you are an excellent writer, and I’m so glad I found this blog. I love your honesty.

  • Stormy Bishop

    My goodness. I have been reading your blog all day. I was diagnosed with Bipolar a few years back. It is a very hard thing to deal with. Bless his little heart. My heart hurts for your family, but I am seeing you became stronger through the trials. Praying for you.

  • […] relative stability (I must always use the qualifier relative.) vastly improves his chances at a happy, productive […]

  • […] This relative stability (I must always use the qualifier relative.) vastly improves his chances at a happy, productive adulthood, because his brain is now wiring around things like feeling capable at school; going to the grocery store and having pleasant interactions with strangers; and the myriad small successes of daily life, like helping around the house and taking good care of our family dogs. There are a thousand things that a typically-developing child of his age does that he cannot, but in 2009, there were months in a row when he couldn’t go to any store and I ran all the errands in the evenings after Brian came home from work. He couldn’t be around other children without my attentive supervision, lest someone get hurt. Our dogs spent most of their days in our sun room for their safety. Many days, I didn’t even feel safe to take him in the car by myself and Brian had to take time off of work to ride along to appointments. […]

  • Adrienne,

    A good friend of mine told me about your blog and as I read this I’m sobbing. I just read of some one else who has gone through what my life is like now. My sweet boy Avery who is 9 has had a rough start from the beginning as well. It’s been different then Carter’s struggles in some ways but we have a long list of diagnosis. Severe ADHD, Sensory Processing disorder, Protein difficiency, metabolic disorder and the 2 most recent ( as of 2 weeks ago) is Tourete’s and Mood disregultion disorder. Avery is not currently medicated but is on 5 different vitamin’s to help with protein absorption and to calm him. Our life has been an emotional roller coaster and my other 2 boy’s have had to watch as my husband and I have been kicked, bitten, abused and cry as our son threaten our lives ( tell us exactly how he’s going to do it) threaten his own life several times and he too has asked us to call the police and has said he feels he’s stupid and some other horrible things. The truth is he’s the sweetest boy with a heart of pure gold. He will help any one or any living thing. He loves animals ( skunks especially) and he loves the ocean and light houses. We just recently decided to medicate him, something I have been so scared to do because of his metabolic disorder I don’t know how his body will react. We tried a drug once and he raged for 4 hours. However just recently he raged at school and got away from me and headed to the woods. It happened as I picked him up and was driving him home. He threw something at me and I new to park the van. He got out of the van before I could get to him in time.I ran after him but realized I was alone and forgot my cell phone in the van. I just reacted when he left and I ran after him scared for his safety. He ran to a pond that was partially frozen and you can imagine my horror. I begged him, made a deal with him what ever I could do to close the gap between us so I could grab him and hug him. I know he doesn’t want to be this way and as scared as I am about what the medications side effects may have I know now that we have no choice. All 3 of our sons are our world and their safety has always been our number one priority after last week I realized I needed more help to keep him safe. Finding your blog couldn’t have come at a more perfect time in my life. Thank you so much for sharing your story. Please tell Carter he is not alone in his struggles and for you sharing his story he has helped another family understand that we are not alone either.
    Melissa recently posted..Happy In the Meantime

  • Rebecca

    I could have written this. Psychosis is much less scary than rage in our house too. I just had to sit down. Our son like this is adopted and we had so much trouble with DCFS that we ended up videotaping the rages just for security. Watching them now makes me sick. Yet, there was nowhere to take him when it happened. Even the things your son said ” kill me. Arrest me”. Same. My heart is broken for you.

    We are doing better. But puberty is around the corner and I hear that site hipsters things all over again. Bless you.

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