It’s Always A New Normal

Having just come off of Spring Break week, with all my kids home, I was struck by the constant change our family is always going through. When mental illness is present in your family, there is not a ‘typical’ day.

Times like Spring Break are especially difficult because when children who have trouble with transition or anxiety about change, it is difficult for them to shift from the everyday routine of school, where typically (at least in therapeutic schools) they know what to expect all the time. Suddenly, they are back with a week of unstructured time and it is difficult for them to handle.

My two boys that suffer from mental illness have always had trouble occupying themselves and want constant entertainment. It doesn’t matter if you do one thing in a day, or ten, it is never enough. They want to be constantly moving sun up to sun down. Add some incessant questioning to that, “Where are we going?,” “What are we doing?,” all day long, and it is a recipe for stress. That, of course, does not even account for the meltdowns.

When we began homeschooling my oldest at age four, I believed we would do it forever. I love homeschooling and treasured having my children around all the time. We even continued to homeschool through my oldest’s most difficult times, in the throes of psychosis and varying behaviors. When my third child began displaying many symptoms of mental illness, just as my oldest had, I knew that I could not keep up what I had previously been doing. I wasn’t even sure that it was healthy to do so. When every single day is a huge battle, it is very wearing, and not just on a caregiver. My two neurotypical children were having significant difficulties coping with the household chaos.

Now, all these many years later, three of my children are in special schools and my daughter is the only one left homeschooling. We are in a transition phase as many of her homeschooled peers are now going on to high school, and she is going to enter her 8th grade year. While I know that she is equipped to handle the challenges of high school if she wished to go early, we have decided she will continue to homeschool, at least for the year ahead. I am leaving space open for whatever she chooses, to go to high school, or homeschool through.

My oldest son is successful in his therapeutic school, but still struggles to make friends. He feels lonely much of the time and even though he attempts to put himself out there, he is not finding the friendships he so desires. My third son faces the same challenges. He is doing very well at school, but socially is struggling terribly and is very lonely. My youngest, struggling with some learning disabilities is having success in school and likes it, thankfully. This is not the picture I held for any of my kids, however, it is our reality.

When one son is doing well, the other generally isn’t. It is an up and down roller coaster of emotion and chaos. We never know what each day is going to bring, and I am just thankful for the days that are relatively peaceful.

Then, there is the question, “What is normal, anyway?” Well, of course, the answer to that is, there is no normal. All everyone does every day is the best they can. I’ll confess, “normal” wouldn’t appeal to a homeschooling, alternative health promoting, non-GMO advocating, tree hugger, anyway. I’ll settle for okay.

Peace,
Jenifer

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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