We don’t tell you and here’s why

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Morning Zen Guest blogger ~ Lisa Lambert ~

The best way to get help for your child with mental health issues is to talk about what’s going on.  But most of us don’t, especially not at first.  Adam Lanza’s mother, Nancy, was reportedly quiet about his problems.  She was happy to talk about gardening, the Red Sox and her hobbies.  But she was quiet (publicly at least) about her son.  I have been, too.  We learn to be.

Even among parents who have kids with mental health problems, many cringe at the idea of exposure.  Liza Long’s stunning post,” I Am Adam Lanza’s Mother”, has prompted many parents to worry that she has exposed her 13 year old son to public scrutiny and taken a terrible risk.  Other parents pour out their own stories, feeling the risk is nothing compared to the pain of dealing with mental illness all alone.  I have been both kinds of parents – the one who keeps quiet and the one who shares her child’s story.

When my son was in elementary school, he was sometimes violent, explosive and unpredictable.  His mind, his focus and his mood would shift and nothing could interrupt the explosion.  Believe me, I tried.  All I could do was send his younger brother to his “safe spot” and manage things the best I could. For reasons none of us understood, his brother was often the target.  I worried for years that I would get a call that the state had removed my younger son because his older brother broke his arm or hurt him grievously.  I went to all the best experts who speculated that maybe he was angry because his brother was “normal.”  Why then, did he attack me too? And why did he also harm himself?

No one was ever sure about the why of it and we learned to live with the mystery and uncertainty.   When he was a little older, my son was able to tell me that every day he woke up feeling emotional pain and most days it was simply horrible.  When he exploded or when he hurt himself, it was like bursting a balloon, he said.  The pain went away for a while.   As he grew older, he hurt himself more and others less.  He reasoned that it was morally a better thing to do.  As his mother, I was still anguished.

When this first began, I told other mothers about it.  They were the parents of his friends and had known him since he was a baby.  Some of them would try to make me feel better.  “All brothers fight” they’d say, “Yours are just more intense.”  Some would look at me with horror or, worse yet, tell me to try things that I’d done long ago and found pretty worthless.  It was clear that they thought it was either my skills or persistence that needed shoring up.  I learned to avoid these discussions and got pretty good at deflecting questions. I learned to be quiet.

It isn’t just friends you are careful with. It’s your child’s teachers, his pediatrician and many others in his life.  We all live in a society where the stigma around mental illness can stop us in our tracks.   It’s far more serious than a lack of understanding. People repeat things to you that cut you to the quick and you learn not to tell them what you are going through.  Instead,  you talk about the Red Sox and gardening.

Then we turn to the mental health professionals, who we think, have seen all of this before.  We learn once again, that we are often on our own. Insurance pays only for short visits with lots of paperwork requirements.  There is  a shortage of mental health professionals with expertise on the most “serious” kids.  Parents like me are told, “I’ve done all I can for your child” and we observe he is not much better. We learn to manage the crises, lower our expectations of help and keep going because we know the burden falls on us in a way that would be unthinkable with another kind of illness.  I’ve read that Adam Lanza’s mother found that only she could defuse his crises. I’m that’s what she did until she couldn’t any more.

Finally, if we are lucky, we find other parents like us.  For many it’s both difficult and a relief to say my child is out of control or hurts himself or can’t seem to succeed.   But this time the other person says, “Yes, I know.  It’s like that at my house, too.”  We share, we cry, we laugh.  We applaud each others’ successes and commiserate over the failures.  Most of all we brainstorm, we point each other in the right direction and we slowly make progress.  And we are not quiet.  At least not until we leave the room.

After a profound tragedy such as the shooting in Newtown, Connecticut, talk turns to ways to identify the next Adam Lanza. To do that, we need to be able to talk about our children and our families and receive back compassion, understanding and good advice.  Until that happens, many of us will stay quiet.

lisaLisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children's Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.

Comments

  1. Maddy's avatar
    Maddy
    | Permalink
    Hi, it truly is amazing how mental health issues continue to be a stigma. I work with a kiddo who continually hurts his siblings, everyday is a challenge for his mom. The other day he threw a rock hitting his brother's head. I saw the worry in his eyes and yet he did not realize the extent of this outburst and shut down when I met with him. He needed someone to hold him, not only physically but mentally, and not yell at him. He is troubled but I can't find what he is troubled about..that is the scary part, and he is only 5.
  2. Sandy's avatar
    Sandy
    | Permalink
    Lisa,

    Thank you for stepping out and sharing. It's a good reminder that keeping this conversation alive and oopen is one way to truly 'unhinge' the clutches of stigma. To all here who are reading, let's find the courage to do the same.
  3. Lakita's avatar
    Lakita
    | Permalink
    Lisa,

    Thank you for sharing this and causing many of us to reflect and review the things that we are or are not doing in mental health. This is one of the reasons I have spend the last 15 plus years talking about what other the importance of de-stigmatizing mental health issues, and behavioral problems that are due to low academic achievement. Thanks again.
  4. Holly's avatar
    Holly
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    Lisa, thank you so much for your article. I sense your feeling of desperation, and I feel it myself. I'm afraid my 17-year-old son might commit a horrific crime someday; he's afraid of it, too. Of course, we have no guns in the house, but I'm at a loss to know how to protect him and others. Medication isn't enough. One minute he's a sweet innocent child and the next he's a madman, capable of terrible violence. What do I do? What do I do? How can I save him?
  5. Michelle's avatar
    Michelle
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    I would like to thank Lisa and send support to all the parents raising children with mental illness. I decided last year that I would no longer remain quite within our secret socitey because of the stigma. I would speak out to my family the ones I would expect to understand, the school district, the mental health professionals, my co-workers and anyone who would listen. I got to the realization, I had to advocate for your child. It took 8 months to get the results of my daughter's neuro psych evaluation and after having a scheduled ARD meeting to decide if the school would consider a 504 and none of her teachers were notified to attend, I knew something had to be done. Parents even when you feels there nothing left, dig deep,dont' give up.
  6. Susan's avatar
    Susan
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    Thanks Lisa for so beautifully expressing some of the painful reality of families raising a child with serious mental health issues. Holding on to eachother and walking out of the darkness is the only way I can see to move toward better outcomes for ourselves, our children, our families and society in general.
  7. Lorna Grivois's avatar
    Lorna Grivois
    | Permalink
    Lisa, Over the last week I have attended meetings that went completely off agenda here is CT to recognize the tragedy and ask ourselves "What do we do next?" Today I will wear my green ribbon in memory of the 28 souls taken by mental illness and to respect the childrens' mental health movement. Once we take our breath we must all come together so children like Adam no longer fall through the cracks. Thank you for your blog.
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