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January 31st, 2013

Back when he was just four, kicked out of daycare, running into the street because he wanted to be hit by a car, my friends and family were already asking questions about my son’s future. Did I think he’d be able to go to college, get a real job? I felt furious at them for asking, for making room for any doubt. Of course he would. With all my loving care, all the psychological knowledge I brought to raising him, I couldn’t allow myself to imagine otherwise.

But now, when he is eighteen, that future they wondered about, is unfolding. And I admit to being truly worried. What will happen? Whenever I am not pre-occupied with something else, my mind spins back to those questions. Will he end up in jail? Can he graduate high school? Is he on the right medication? The worries have worn a groove so deep, they invade my dreams. When I wake up at night to use the bathroom, they are my first cogent thoughts. What will happen in court next week? Will he sign himself out of the program? Fall in love and forget the rules of his probation in his quest to see a new boyfriend? I wake up plotting, planning. How can I convince him to follow the rules? Stop him from jumping off the Mass Pike or assaulting someone? Who else can I enlist in this fight to save him?

I am tired of endlessly replaying what has already happened, as if in the next version the ending will be different and we will not be here, just a hairs breadth away from prison. What if I had been stricter when he was four? What if I’d made him go back and return that first toy he stole (but then I remember, I did carry him back, kicking and screaming, to the confused store clerk who seemed not to understand what we were doing). What if I had taken his stealing really seriously right from the start, never cracked a smile at his misbehaviors? Never felt a glimmer of identification? Never given him a dime after the first time he took five dollars from my pocketbook left on the counter? What if I had been consistent with those star charts, consistently stern but loving? Consistently holding him accountable for his own actions?

My worry, my love, my pity for him has too often overriden my logic. I was in Berkeley, California for New Year’s visiting my sister who has adopted her own abused and neglected daughter (after seeing our example?) My son calls, threatening to either run from the program which would trigger the alarm on his electronic ankle bracelet, or kill himself. “I’d rather be in jail,” he says. “Anything would be better than this.” He hates the program where he’s lived for the last three years. “I will kill myself,” he threatens. “One day, it will happen.” That is, unless I let him sleep in our house which I have left locked up tight against him while I am here, away on vacation.

Do I remind him that while he was home on pass on Christmas Day, he stole that gift card from me?  Or do I simply listen to his threats, empathize and acknowledge his feelings? These are the same threats he has made dozens and dozens of times before. But I am forever afraid not to listen. If I hang up will he feel rejected? Maybe this is the time he will evade staff and actually jump out a window. Or cut out someone’s eyes with a knife as he has promised? And, truth be told, I like that he needs me, that he calls when he is desperate and I can sometimes calm him.

Lately my biggest worries are about avoiding jail. We must avoid even twenty-four hours behind bars. Above all else, we must avoid that last trauma of prison rape. It has become my mantra. I will do anything to make sure my gay delinquent son doesn’t land in Nashua Street with the sadistic older criminals I imagine are just waiting for him. I will do anything. And then I wonder, where is he in all this, why am I the only one trying?

Our guest blogger, Randi Schalet, is a psychologist and an adoptive mother of her twenty-two year old daughter and eighteen year old son . She credits her ability to carry on with parenting her challenging son to the support of friends, family and, especially, other parents.

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What I might have been

January 3rd, 2013

It’s a terrible thing to feel alone and misunderstood, to feel like you’re the only one in the world who suffers the way you do. It’s like you’re looking at everyone else from inside an airless glass box, waiting to either break free and join the rest of the normal, happy people out there or fade away and become a lifeless nothing. Growing up with mental illness, I know I felt this way. I’m going to hazard a guess that Adam Lanza did too.

I am not Adam Lanza, but that’s not to say that I couldn’t have been. I was shy, quiet and awkward, maybe even seemingly weird to those who didn’t know me. I also dealt with mounting mental health issues that had some doctors believing I’d need long term psychiatric care.  I wasn’t outwardly violent or explosive, choosing instead to harm only myself, and like every other teenager in existence, I gave my parents a hard time–maybe even a harder time than most parents experience. Why is it then that I turned out the way I did, more stable than I’d ever imagined possible and Adam Lanza is now dead by his own hand after going on a rampage? It all comes down to one thing: support.

I was not an easy teenager to deal with by any means. On top of puberty, I was experiencing auditory and visual hallucinations, severe anxiety, crippling depression and suicidal ideation. I was also a cutter, using that as a coping method to deal with the pain and frustration I had. My parents had to confiscate and hide every sharp object in the house so I couldn’t use them to self-harm.  I was out of control in the sense that my parents felt that they couldn’t protect me from myself, and they lived in fear, not for their own lives, but for mine. They had no choice but to admit me to psychiatric care when I became a danger to myself. It was the only way to keep me safe.

We all felt helpless. I was confused and felt so isolated, like no one could possibly understand the hell I was living in. My parents were just as alone as I felt, but in a different sense. They had essentially lost their daughter, and even more, had no one to talk or relate to. They didn’t want to be judged because their daughter was “crazy” but mostly, they wanted to protect me.

In the 9th grade, I stopped going to school. All the meds I was taking at the time made me gain about 80 lbs. and I felt too insecure about my image to want to go out in public. As my parents tried to force me to go, I became more unsettled and in the end, I threatened to kill myself for the hundredth time. I think that’s when my parents admitted that we all needed more support than just my outpatient therapist. They had already educated themselves on mental health, more specifically my diagnosis and medications, but they decided to look into local resources for parents who had teens with mental illness. As luck would have it, there was such a support group in our town, and my parents began attending regularly.

Through the parent support group, my parents learned about alternative high schools, a smaller school setting with clinicians for students with emotional, behavioral and mental health needs. With a lot of persuasion and maybe even a tad bit of bribery, I decided to give it a shot and to this day, I don’t regret it. Instead of having to deal with 1500-plus students, there were only about 70 of us in the school, and only 10 students per classroom. I received support from teachers and clinicians alike from the day I started there and it made my school days less overwhelming. After a while, I actually looked forward to going.

My parents also learned about a local youth group, supported by the Parent/Professional Advocacy League, for youth like me–and it changed everything. I finally found a place where I fit in, where no one judged me. It was a place where we could all get together and talk openly about our experiences. Everyone in the room got it because they had gone through the same thing. Just as I was making friends and coming out of my shell, my parents were too. They had finally found other parents and caretakers who understood. Things began looking up. My parents were learning new things about caring for a mentally ill youth every day, and I began letting people, myself included, help me. We became stronger together.

The three of us also became advocates together. My parents had learned so much from our experience, and wanted to be able to help other parents who were having a hard time finding information and support for their kids. I was becoming more and more stable and level headed every day, and felt the need to share my story in the hopes that other youth would know that they weren’t alone. The more I shared my story, and the more my parents fought for other parents, the better I felt. I was finally happy, doing great in therapy, and knew that I was going to be okay. I wasn’t wrong. I haven’t been hospitalized since I was 17 and I am now 25.

Those who know me and have heard my story know that I credit my parents for my success. If it weren’t for them bending over backwards to get me the support and treatment I needed, not only would I not be the person I am now, but I most likely wouldn’t have survived those trying years of desolation. However, the credit extends much farther than just my parents. I had, and still have, a vast support system that continues to push and inspire me.

Unfortunately, Adam Lanza and his family weren’t so lucky. It’s been said that Nancy Lanza, Adam’s mother, did not talk about her own or her son’s struggles. Can you blame her? People who have a mental health diagnosis or Asperger’s or autism are seen as lesser beings, often stigmatized for what’s beyond their control, and Nancy was probably afraid of being scrutinized for having a son who needed help. It also seems that she and Adam didn’t have access to the right kind of care, and even if they did have access to it, they definitely didn’t know about it.

What happened at that elementary school last December was a tragedy, and I cannot fathom what the victim’s families must be going through. My heart goes out to them all, but I want it known that my heart also goes out to Adam Lanza as well as his family. He was not a monster, and for anyone to sit there and say that is also calling me monster for having a mental illness. The only difference is that I received all the help in the world whereas he did not, and that is in no way his fault. Am I condoning what he did? Of course not, but this could have been avoided.

I believe whole heartedly that with the combined support from family and peers and effective treatment, youth (or anyone, really) dealing with mental health needs, Asperger’s or other disabilities can overcome their struggles and become a stable, happy human being. It’s time to come forward and talk openly about mental health because clearly it’s affecting more people than you could imagine. It’s only a matter of time before we forget what happened last month only to see it happen again in another small town to another young man or woman who was suffering in silence. It’s time to end the stigma so others will no longer be afraid to admit they need help. It’s time to stop saying we’re going to make a change and actually do something about it.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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