Mental illness views: Europe and the U.S. compared

I really enjoy reading what Pete Earley writes.   He’s a journalist, but I think it’s his heart for the plight of individuals with mental illness and the least fortunate that really make his work interesting for me. His latest blog post wonders if Europeans view mental illness differently than we do here in the U.S.

Honestly, after reading the posts as well as knowing some people from Europe, I think that it is both the case that they view and treat people with mental illness differently.  One of the things that struck me the most reading the opinions of those Pete posed the question to was the perspective that in the U.S. it is feeling that, “Everyone must pull themselves up by their own bootstraps.”  I have to say that I wholeheartedly agree that here in the U.S. my view is that overwhelmingly people feel that way, and it makes me very sad.

We stigmatize, we point fingers, we do many things to avoid being truly, meaningfully helpful to others.  It is always “someone else’s problem.”  Now, of course, I am not saying that everyone feels this way, but when I look at comments on news stories, especially anything to do with the welfare system or stories like that of Kelly Thomas it is apparent to me how very far we have to go in this country regarding empathy and compassion.

Having a child (or more than one) with a mental illness is an incredibly difficult and overwhelming prospect.  Once they get to be teenagers, it becomes doubly so. Families are faced with the prospect of a child turning 18 and then, for all purposes regarding care, being “on their own.”

One of the interesting comments Pete received was that Europeans, “are more comfortable with a “need for treatment” commitment standard….rather than only dangerousness.”  I wish, here in the U.S., we were more focused on a need for treatment standard.  Pete said that he received jaw drops when he mentioned, “The largest public mental health facility in the U.S. is a jail….”  That fact is really something that should make everyone’s jaw drop.  That is absolutely an unacceptable standard.

I’ll leave you with the ending of Pete’s article, which I thought was very poignant.

“What I can say is that every foreign crowd who hears me talk about how our jails and prisons have become our new asylums are stunned. How can a nation that values individual freedom so highly take away the freedom of  individuals who are ill and need help?

They expect more of us.”

Thanks, Pete.  I always count on you to have something very valuable to contribute.

Peace,

Jenifer

In response to ‘Reckoning’

After reading Andrew Solomon’s piece, Reckoning, an interview of Peter Lanza, I was left raw and sad.  The father of Adam Lanza (the individual who shot children, teachers and killed his mother as well as himself in Newtown, Connecticut) Peter’s story is one that some have waited to hear, and others, well, have no desire to hear.  There is so much about his story that is familiar.  For those who have not walked alongside someone who has a mental illness, things may seem very cut and dry.  We, as a society have a tendency toward blame, without looking to understand.  This was a tragedy, and it is right to treat it as such.  However, unless we look to understand how great a systematic failure we have in this country, I don’t believe it’s going to get better.

My oldest son’s diagnosis of Early Onset Schizophrenia did not come easily.  I spent many of his early years reading, reading, reading literally everything I could get my hands on that might help me figure out what was going on.  As I was homeschooling, I also was looking for clues as to how my son learned because it was so much different than my younger daughter.  In those early years, I discovered many things and follow up testing confirmed much of what I knew. There were also some things revealed that I hadn’t really understood, that is to say, once they put a name to what might have been happening, I was able to understand it, but before, on my own, it just appeared to be, for lack of a better word, puzzling.

Here’s the thing, I was and always have been, proactive.  Yet, my son went through so much I didn’t understand. He was violent in the home, he tried to jump out of a moving car, he was hallucinating, he became suicidal, he tried running away.  We got “help” from psychologists that wasn’t helpful.  We had neuropsychological testing and while some was helpful in getting him advanced treatment (and more correct treatment), it didn’t “fix” what was going on.  But for constant pressing and pushing, I couldn’t have gotten him to his current psychiatrist that has done so much for us.  Even having a psychiatrist that is highly intelligent, an expert at psychopharmacology, who also works at a mental health hospital where he sees kids like my son on a daily basis did not stop my son from having a psychotic break and trying to kill himself.  Even with all of my interventions, all the therapy, the admission to the mental health hospital, it didn’t stop anything.

We are very fortunate because our son was able to be admitted to a second mental health hospital where he remained for 42 days consecutively while they did a med wash, and finally, our psychiatrist recommended that we take the last resort step; introducing Clozaril.  This, and only this, has been the main game changer for my son.  He is no longer suicidal.  He hasn’t heard voices in a very long time.  So, why am I saying all of this? This was supposed to be about the Lanza family.  I feel for Peter Lanza because I see him as a victim also.  I myself have felt helpless watching my son become someone I don’t know and don’t understand.

I believe there are a lot of families that could be the Lanza family.  Mental health treatment in this country is abhorrent.  Mental illness does not come with a manual.  Adam Lanza was taken to doctors and psychiatrists, even prestigious ones.  He was put on Lexapro, which is primarily for anxiety and depression.  The recounting that Peter Lanza did regarding what I see clearly as a definite progression of illness is tragic.  That better interventions and more support were not offered to the Lanza family is nothing short of awful.

If society is going to blame the parents of Adam Lanza for the tragedy that occurred, then I am going to go full out and blame the mental health system that society allows to continue in a static state.  We are not taking seriously the lack of resources and support for mentally ill families, nor are we addressing stigma.  Until we start to really begin to invest in wellness and care for mentally ill individuals and support for their families, tragedies of all types will continue to occur.  We have a responsibility as a society to care for those who cannot care for themselves, without exclusion.

Peace,

Jenifer

Schizophrenia, Autism and Overlap

I was excited, three weeks ago, to read information about some new studies being conducted in the field of genetics.  Researchers have found overlap in mutations of genes in Schizophrenia and also those connected with mutations in autism and cognitive disabilities.  You can read the article here.

I have always been interested in how many of the traits seemingly reserved for autism affect my oldest with a serious mental illness.  Processing, poverty of speech, affect, executive function issues are all part of his deficits, along with his diagnosis of early onset schizophrenia.  Two of my other sons exhibit nearly the same processing, executive function and working memory deficits.  Their WISC scores are nearly identical all across the board.

Sometimes it is really tough to get others, including professionals, to understand that which we see and experience at home.  This is why it is doubly important that we have access, either through the school system or privately, to affordable testing so that our kids can be identified and accommodated early on to reduce stress, anxiety and hardship.

Studies like these are important in getting the focus off of completely environmental factors that some professionals are so quick to latch onto.  Behaviorists tend to unduly blame parents and environment for what is happening with our children.  I have seen some insist that consequence/reward systems work for EVERY child.  The more we learn and discover about genetic factors and brain function, the more we see that this simply isn’t true.  

Peace,

Jenifer

Revisiting

It has certainly been a long, long winter here in the Midwest.  Sometimes, I think we take the sun for granted.  The reason I say this today is that so many of my friends who have children with serious mental illnesses are struggling.  They are struggling as parents, they are struggling as families and their children are struggling.  In a conversation with one of these friends, she remarked, “You know how you are just tired?  Just can’t face going out once more with a fake smile on your face?”  Yes.  I know that feeling all too well.  This has been said a number of times, in a great many places, but it bears repeating.  When a child has a serious illness, like cancer, there is a lot of support.  No matter how life threatening or horrible a mental illness is, the support is virtually non existent, for most of us.  I have lived this story and hear it over and over from friends and acquaintances in the same boat. And, in times like these, long winter, dark and dreary times, it goes on and on.  I have another friend whose son is battling repeated hospitalizations because the one medicine that is a go to for Schizophrenia, he can’t take.  How’s that for a kick in the gut?  He can be successful on a medication, live a semblance of a “normal” (I hate that word) life, but he can’t take the medicine because he is one of the population who the side effects are all too real for.  What do you do, then?  What about when the one hospital bed that was available is taken?  Then what?  Or, how about the insurance company has decided that three days is plenty, so now your unstable child is coming home because they are deemed stable enough by said insurance company?  Now what?  Somehow, sorry doesn’t seem enough to say.

Another friend asked me if I had ever experienced feeling scapegoated by the school, therapists, psychiatrists.  I laughed out loud. Umm, how about my oldest son’s entire childhood?  It was a lot of fun being told I was making too much of things, they didn’t see anything like what I was talking about at school, etc., ad nauseum.  Funny how a full psychotic break with suicide attempt will all of a sudden get everyone’s attention.  Suddenly, everything I had said made sense to everyone.  Hmm, that’s interesting.  Needless to say, I no longer care about anyone else’s opinion of what is going on with my son.  Even the apologies didn’t really make that situation better, but it did a little to soften my heart again.

If you are a parent with a child with a serious mental illness, know you are not alone.  Seek out help at NAMI, find a local chapter and join a group.  If you are a single caregiver, get on the internet and seek out a group, there are many.  Don’t do this alone.  It is lonely here; you know it.  I see you.  I’ve been you.  I am you.

Peace,

Jenifer

Misunderstood Symptomatology

Over the years, one of the more difficult aspects of dealing with my son’s mental illness was that I was always getting information that was not valuable to me in the least.  It is a hard road when you are going to the “experts” and they have no idea what you are talking about.  They keep giving you the same information, over and over, insisting that at some point, “It will work.”  Frustrating, right?

For a long time, I felt extremely alone.  I know that one or two of the therapists we saw just thought I was crazy.  Others, I’m sure, pitied me.  The flip side of that was that I spent a period of time where I was very angry, and I blamed them for not being skilled to help us, as well as being unwilling to LISTEN.

Now, however, over the past two years, I hold no more anger and I don’t blame anyone.  The reality is, THEY don’t understand.  I have so much more faith and confidence in my ability based on what I have done so far that I am able to always be very direct with therapists and say, “No, that’s NOT going to work.”  I only collaborate with those willing to accept that answer.  Otherwise, on we go.  Truthfully, in the last two years I have met many more who are willing to help and listen rather than argue.  (Though I attribute this phenomenon to my son’s formal diagnosis more than anything).

One issue we still deal with is the favorite of the behaviorists; Rewards.  It is well known that the positive reinforcement path with rewards is popular, and dare I say, well liked.  Not for nothing, it would be a very pleasant experience if your child could comply, earn points, and then a reward.  For those it works for, I say, “Awesome!”  From very young, say age four, this was not a concept that could be gotten in our house.  I tried every reward system and point sheet, chart and “store of prizes” available, over and over, many times.  They have never worked.  Now, the science is catching up to what I have known for many years, there is a reason why it doesn’t for two of my four children.

This article talks about functional impairment that exists within schizophrenic patients as a causation for why “reward” systems don’t work. Thank you, researchers!  You’ve just made it easier for a whole new generation of parents with mentally ill children.

Peace,

Jenifer

P.S. (Aside on anger)

One instance that illustrates my anger is the nearly year long visits to one of my son’s therapists.  We thought, since he was well thought of and collaborated with a very well known psychiatrist that we might be in a good position. My son was 10, and he was routinely pulling knives out of drawers and saying he wanted to kill himself on a regular basis.  He also was pretty violent in the home (breaking things, tearing up his room, throwing things at us, etc.)  Well, after a long time with no progress, I finally put my foot down and wanted to know what exactly was happening in the sessions. Guess what?  The therapist wouldn’t tell me.  Oh, he gave me little bits about what they were working on, etc., but I could never get any real answer about what my son was saying/thinking, etc.  Finally, I was at the end of my rope, doing therapeutic holds in the home regularly and dealing with screaming meltdowns, suicidal talk, etc. so I told the therapist I wanted an answer to what he thought we should do as things were not improving.  His answer floored me then, and still does.  I was told to, “Place him in a residential facility.”  Period. End of story.  I could not get any explanation from the psychologist as to his reasoning, and he was unwilling to disclose what might have been said in session to prompt him to say it.  So, we left and found someone else as I was unwilling to place my 10 year old son in a residential facility based on the opinion of a psychologist who couldn’t even explain to me “why” he thought he should be there.

Putting It All Out There

One of the things I admire is the willingness of some people to put themselves ALL out there.  Especially when it helps others.  We are all subject to scrutiny and judgement, but those who deal with illnesses/disorders/abuse of any type who place their stories out there for all the world to see, just in the hope of helping one person, have my deep respect.

The world of mental illness is a lonely one, particularly for those who suffer from it, but also for the families.  It is difficult to get people to understand.  It is disappointing when we here criticism of how we should have/could have done things differently and/or better.  The criticisms come full and hard and fast at times.  “If you didn’t let your child,”  “If you had given them this medication,” “If you didn’t give them this medication,” the list goes on and on.  But, I think, we torture ourselves the most.  I don’t think I know one parent of a child with a mental illness who hasn’t beat themselves up and down.  We question, we listen, we try all the time to figure out just what is going on.

This brings me to bravery.  So many parents of children with mental illnesses are brave, very sacrificing, and extremely generous.  They put their lives on hold, speak out, speak up, get the best they can for their children.  They also support, listen to and encourage other families.  But, that said, it is nothing compared with the bravery I see in the children.  For a child with schizophrenia, life is a terrifying world full of bombarding images, senses and information.  Some of it they can trust, some they cannot.  They move forward, even though so many things are trying to hold them back.

One set of images captured my attention the other day. John William Keedy, a photographer, put out a mental illness picture series unlike any I have seen.  Here you can see his work, and a little snippet of why he put it out there.  He is just one, doing something he can do, to help others.

Blessings,

Jenifer

Siblings and Aggression

When a child has a mental illness it is often very difficult for parents to accept.  Struggling to find the right ways to help a child means a myriad of therapy appointments, doctor visits and sometimes hospitalizations.  All of this can be even more difficult for single parents/caregivers and households where both parents work.  Having more children in the mix can be the most difficult thing of all, as the effects on the other children are imminent and most times, very detrimental.

I can remember back when all of the aggression/meltdowns/restraining behavior started.  It was early 2008 and my son had just turned ten.  There were countless episodes of screaming, crying, throwing things, wrecking his room and becoming aggressive without provocation.  Most prominently in my memory is the memory of my daughter, just seven, rounding up her littlest brothers, just three and one and a half, to hide under our big kitchen table and be safe.  The thought of it now still brings tears to my eyes.  There is just so much burden.  Things that little children should not experience or know about or have to deal with at such a young age.

I have watched my bubbly, sweet daughter, always full of wonder and excitement, collapse in on herself in fear, grief and depression.  There were many times she slept with her door locked because she didn’t know if her brother might come in and harm her.  She watched as the brother who used to love her and play with her became dark, brooding and mean.  It is an experience that I wish I could have spared her.  She has far too much responsibility much, much too early.

My youngest sons have never really gotten to know their brother as he existed when he was younger; kind, always wanting to play with others and excitable.  For them, they have experienced the moody, harsh and angry brother who was always more ready to cause them harm because he was annoyed with them than anything else.  Not surprisingly, it has not made for a good relationship for any of them.

Yet, the transformation my oldest has gone through is not his fault.  He certainly didn’t “choose” to have a severe mental illness, and more often than not in these long years he has told me how he’d like to be “free”.  For many of the years between age ten and thirteen, his desire was to end his life.  It came up nearly every day and back then I was told by one respected therapist that it was “for attention.”  I’m here to tell you today that the therapist was WRONG, on all counts.  I’m glad that I trusted my gut and kept working toward getting better and better help for my son.  It wasn’t easy at all and took far too long, but if I hadn’t kept believing we could find help, my son might have tried to kill himself much earlier.

When my second son began having similar difficulty at age six and a half, the cycle began again and the difficulties became even more overwhelming for everyone.  This  round put my daughter in therapy and we spend some time in family therapy as well.  There is always work to be done, and a lack of resources available. Mental health support in America is slim to nil.

Days for me are still spent as mediator and referee, anticipating difficulties and intervening before any harm comes to anyone.  It is a very tiring, difficult pursuit.  Being hyper-vigilant and hyper-aware sixteen to seventeen hours a day is nothing short of exhausting and stressful.  Unfortunately, it is necessary.  When I feel like complaining about it, I try to remember that the casualties are children I adore, and I don’t want to see them go through any more than they already have, so I will continue to do what I need to do, for them.

When I read this article on siblings and aggression done by the Maple Clinic in Birmingham, I thought, “Finally!”  While I’m glad they are shining some light on the issue, it certainly isn’t telling those of us in the mix anything we don’t already know, but hopefully, we can get the professionals and the government to wake up to the needs of the families affected by mental illness in America.

Peace,

Jenifer