We don’t tell you and here’s why

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 sure 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.

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15 Responses to We don’t tell you and here’s why

  1. Maria says:

    Earlier this week, I responded to a fb posting from a friend discussing the blog post “I am Adam Lanza’s Mother”. I did open myself in the post that I have two children with mental health needs and mentioned that I have a 13 year old daughter that has recently talked about suicide and cutting although the violence is towards herself, not others. One of the reply comments was from a friend of a friend – I read his profile – he is a 30 something male – a well, educated, father of a two year old. He commented that he will do anything to keep his precious child safe and… nothing personal… but he wants his child to have nothing to do with children like mine. The time has come for children like mine to be separated from children like his and put back in institutions and educated separately so his child can grow up safely. Its that kind of stigma that keeps us silent about our children’s mental health issues.

    • Cliff says:

      Dear Maria,
      Please don’t take one very narrow-minded person’s response as indicative of everyone who has watched with horror the events of the past week well, and months, years before as well. You said that you looked up his profile and that he is well educated; perhaps in a superficial way he was but certainly not in a meaningful way at all. I personally want to see all children able to grow safely, yours, his, etc. His response is indicative of his inability to reason beyond a self-serving sphere that will allow his daughter to more than likely grow up to be someone I wouldn’t want my children to be around but I wouldn’t advocate for locking them up. Nor yours. If he wants to help the situation, he can take the time to pressure the politicians to grow some and stand up to ALEC, the NRA and their ilk and put some resources back into helping those with the challenges you and countless other parents face. Hopefully, Mr.”Mychildissofuckingmuchmoreimportantthanyours” won’t ever have to deal with what you are challenged with but if he does, perhaps he will be lucky enough not to face the same amount of stigma that you do now in our current environment.

      • caroline says:

        Maria, The events in CT triggered a panic among parents, perhaps more so among the ones who thought they could control the environment more than parents who regularly live with the chaos that accompanies living with someone who is mentally ill. A parent with a two year old is not that experienced. At best he is just naive, at worst ignorant. A happy innocent two year old is very different from a “normal” 13-15 year old, who may have mood swings, sadness, who may experiment with drugs or be bullied over a bad decision like sexting. Few teens get by without emotional upheaval that sometimes appears similar to mental illness — depression, substance abuse, etc.

        He does not know what he is talking about. It could be his teen that turns out to be in need of care. It hurts, though, this ignorance. It makes me keep my mouth shut too. I have noticed recently as my youngest approaches 12 how some of the parents who could only be described as smug have changed their tune as they cope with the challenges of parenting a teen. It is a tough job, even without mental illness.

        My child was mentally ill from infancy. I knew something was not right, and I found my intuition confirmed when my second was born. But I was not able to get the early support because of denial from her pediatrician, from well meaning family, from my own desire for her to “outgrow” it. So we struggled in isolation. I avoided situations she could not handle, for her sake and to spare us the judgement of ignorant parents who thought that they could set me straight with a little advice (“you know, you really need to set limits for that child”). Forgive that guy, and hope he does not need to go through what you have to.

  2. Chien-Chi says:

    Dear Lisa,
    My heart goes out to you and your family. I agree with you that parents often do not get the adequate support and the problems are way beyond stigma – in the CT case, lives were lost and families suffered. I was at the Mental Health hearing the night before at the city hall and it was disappointing to see all the government officials left after they had made their reports without hearing what people have to say. We need more parents like you to continue advocate and educate others on this issue. Thank you for providing the trainings, the support and the safe venues for those in need. Please keep up the great work!
    Chien-Chi Huang
    Asian Women for Health

  3. vph says:

    i feel compassion towards people who don’t know any better than to want to lock our children up, because i must. it is the only way to make it through the day. i too am a person who needs to learn by personal experience, and one day that person may learn the error of his ways by his own personal experience. I want to keep my children just as safe as he wants to keep his – i just don’t have the luxury of thinking i can lock other people up to secure their safety. demanding action is a necessity – but it is exhausting.

  4. Marion K. says:

    Lisa, Thank you for your powerful story. The Sandy Hook tragedy has brought about discussion of gun control and mental health. The missing piece, for me, has been discussion of special education. Any parent who has had to advocate for their child through this system knows that funds are spread thin and staffing even thinner. We need mental health and special education funding to be addressed as well as the issue of exclusion of children and their parents because of the stigma of mental illness, or even just the stigma of being different.

    Until our nation acknowledges that our priorities do not include caring for kids with special needs and their families, nothing will change, and many of those alienated intelligent boys will continue to devolve into a world of anger, where no one and nothing can hurt them anymore.

    Here’s a challenge to our Congress and our President: Increase the numbers of available mental health professionals through tuition forgiveness. Wrest control of special education budgets away from local municipalities, where providers are often in fear for their livelihoods when their supervisors learn of their efforts to advocate on behalf of children. Fold mental health providers into our children’s lives, the way we do with police officers at town events and through Officer Friendly and D.A.R.E. efforts.

    My sadness this week has been complicated by my frustration over the lack of discussion of special education issues and how the lack of appropriate interventions can contribute to our children’s mental health difficulties.

    We all have broken hearts. Our ideas about how to move forward vary greatly. I hope that all of our ideas can be discussed openly and truly considered.

  5. Cristin L. says:

    Lisa, thanks for taking the time to explain why this sharing is so complicated–it can offer pain and it can offer relief. You did a great job explaining the complexity. Thanks.

  6. Sana says:

    Thank you Lisa for this very enlightening post. I can not begin to imagine what any child and their family goes through with so much emotional pain, however, my biggest problem with the “I am Adam Lanza’s Mother” post is that every parent who I met who is dealing with a child with mental illness has talked about safety planning, and removing anything that might be used as a weapon so that their child doesn’t harm themselves or others. I do not, and not sure any of us will ever, figure out, why Nancy Lanza kept so many weapons and trained her son on how to use them. While I appreciate the discussion this is giving to greater investment in mental health and the special need for children, something else was at play and easy access to guns is a bigger part of it.

  7. Kathy says:

    Lisa,

    Thank you for sharing. I can relate as you know. It is so hard to know when to talk and when to be quiet. If the health insurances would just do the right thing it would be so much better for the Mom’s and the kids. We can only pray and continue to hope for real change. We need to all stay strong and keeping doing what we can when we can. Luckily we have PPAL to help us in so many ways. Thank you so much!!!!

  8. Mark Zanger says:

    Lisa, I have been looking for someone else braver than I to write the piece I’ve wanted to post on facebook in response to everything. Thank you eternally. Now we must think of some way to turn the sudden support for mental health access by gun collectors (folks I have no quarrel with, although it’s not a hobby one can indulge with MI in the family) to good use.

  9. David Keller MD says:

    I’m glad you said “Often on your own”, not “always” when discussing your interactions with professionals; I like to think that there are at least a few who will walk with you on the journey into the undiscovered country. I need to believe that some us in the health professions are of use. When I was in practice, I found that working with children with mental health issues was my most tiring work, because it was the “undiscovered country”. Takes time to listen and to be, and doctors have that in short supply. Thanks for sharing, and for not pretending that there is an easy answer.

  10. caroline says:

    I am the semi-closeted mother of a mentally ill 16 year old. I have been nearly crushed by the overwhelming job of caring for her, reaching out for help, but protecting her from judging eyes that then look to me for a reason for why she behaves as she does. My husband and I have two younger daughters with average struggles, who are “normal”. Sometimes when I am with people who do not know about my oldest, they will comment on the behavior of another child and the lack of skill of the parent, confident I will agree. I do not. I am the same mother to three girls. Two can respond to discipline and positive reinforcement. One cannot.

    It is a hard choice to identify a kid as mentally ill, to confess your concerns to family or professionals, as the response is often insensitive or judgmental. I have known for all of her 16 years with the knowledge that she had a serious illness, but it wasn’t until her first hospitalization at age 12 that other people realized the extent of her struggles. That was 4 years ago, almost five, and she has been in two group homes, each for more than a year, and has been hospitalized 12 times.

    It is hard to spend a night at the emergency room, finally finding a bed for a screaming, out of control 13 year old, arriving home to find her two sisters happy and full of plans, but perhaps a little put out there is no cereal or clean laundry. They deserve attention too, and I am lucky to have them and their average demands I can meet. I cannot fill the needs of my oldest and I am helpless and scared. Then I have to work, as bills still need to be paid, and then back to the hospital to visit my furious, rigid, untouchable child.

    She can’t be summed up with a label. She is still so many things. She is often funny and generous and delightful. She is a great visual artist. If I tell people a diagnosis, that is what she is reduced to. So I evade and remain upbeat, always focusing on the future when she will be more stable and settled down, a future I am rarely confident in, but appear to be because it works for me and no one wants to hear differently.

    She is doing better now. The group home practices DBT and it has seems to be working for her. She is in a therapeutic school that has been very supportive, and is paid for by our town. I have a great therapist and am on medication for depression and anxiety. My husband and I are in counseling. We try to remember that there is always something to find joy in. There is always hope. C

  11. Karen Mcgravey-Gajera says:

    Thanks for sharing such a well said blog! I am loud…funny…I was very quiet and shy before this happened. This letter should go out to the world…there are so many more of us than others know about.

  12. waltinseattle says:

    My undiagnosed son became a killer in seattle, starting in Cafe Racer. http://m.theacorn.com/node/120320 tells one way to come out, find answers, and educate your community..please join me at mentalhealthtriage.typepad to develope grassroots local initiatives.