About jm2walsh

Mom of four, two children with serious mental illness (bipolar and schizophrenia). Advocate, writer and keeper of the torch.

Doing It, “Right”

Parents deal with criticism and judgment in their lives, even if their children are neurotypical.  This is somewhat universal from well and not so well meaning people, even family and friends.  However, nowhere have I felt or seen more judgment than in having a child with a mental illness.  It is surprising how many closet psychiatrists and psychologists exist in the world, I run into them weekly; each is an expert in diagnosed mental illness.  All kidding aside, this is very common.  It never ceases to amaze me how much people feel they know about psychiatric illness, things gleaned from movies, t.v. shows and the internet.

When you are a parent of a child/teen/young adult diagnosed with a mental illness, it is lonely and isolating much of the time.  Many spend hours and hours researching their child’s condition and looking for any applicable tools and resources to use to mitigate issues.  Most of us spend a lot of time trying to utilize what few available services there are.  There are IEP’s to deal with, psychiatrist appointments, medication issues, some have to deal with behavioral referrals and violence, others psychosis and self harm.  There is nothing easy about being a parent of a child with a mental illness.

The prevailing belief that mental illness can be “fixed” with certain parenting strategies or is the cause of bad parenting, along with the, “If only that was my child, that wouldn’t be happening” attitude is something that has just not gone away.  The supposition is that there exists a “right” way to parent mental illness, in a spectrum where as many differences exist across illnesses as there are connections between them.  Diagnosed illnesses exist as snapshots in time.  A child can be diagnosed with depression and have the diagnosis change as the illness or knowledge of it evolves.  It is not uncommon for a child to be diagnosed with depression, then a rule-out bipolar, only to be diagnosed later in life with schizoaffective disorder.  Trying to hit a moving target is not easy, especially given the way the actual illnesses are diagnosed.  So much of diagnosis is still based on paper testing and analysis, rather than any physical test.

So what is, “Doing it ‘right'”?  Do psychiatrists and psychologists, random acquaintances, teachers, administrators, friends and family members hold the key to the “right” way?  In my view, those in the trenches with the kids who are trying to achieve some degree of success for them are the ones who get to decide what “right” is.  For some, school (mainstream, therapeutic or otherwise) is the best option, for others, homeschooling may work better.  Some kids who have violence associated with their illness, therapeutic boarding schools and hospitals may need to be part of the equation. Mitigating stress and finding a balance to keeping our loved ones well is paramount.  Whatever situation (which is always evolving anyway) that allows a person with a mental illness to function, be safe, keep others safe, etc. is what nearly all of us strive for.  In other words, there is no “right”.

I also feel a compelling need to add a disclaimer:  I have yet to meet a person with a child who suffers from a mental illness that hasn’t beaten themselves up and down for ‘failing’.  Every parent I have encountered who finds they have a child with a mental illness has done everything in their power to try and find out how to help their child.  Some illnesses don’t manifest themselves in an obvious way until something terrible happens, either to the person with the illness, or someone else.  This is one reason that treatment options in this country being abysmal is so problematic; it hurts everybody.

It is necessary that we, collectively, wake up and realize how difficult it is for many people.  It is “our” job to make sure support and resources exist that offer very vulnerable people opportunities to function and exist as whole people in our society.  That is what I believe is, “Doing it, ‘right'”.

 

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Caregiver burnout

Today seems like the perfect day to write a post on caregiver burnout, especially because I’m currently going through it.  I’m nothing if not transparent.

Here’s the thing, I mean, in general, life is better that it has been in a really long time, and that’s when this stuff sneaks up on you.  You look around and you think, “W”hat is happening?”  Slowly, what creeps in as things settle is the, “How have I been doing this for so long?”  Maybe what’s happening is there is time to sit and have realizations about our lives.  I mean, operating in crisis mode for an extended period (years) is how it goes most of the time.  People often say, “Years, really?”  And I say, “Yes, really,”  then I roll my eyes way back in my head because yes, I still do that.

Currently I’m sitting in a coffee shop by myself and all I want to do is cry.  Why?  Because I’m sitting in a coffee shop by myself and I’m so damn grateful, but overwhelmed, also.  Even there is one crisis happening with medication right now, it’s still not even close to what we normally go through, so I count that as a blessing.  Maybe that’s part of the thing too, I’m grateful for one crisis instead of a multitude. People are funny when they talk about anxiety, and the fact that worrying doesn’t help anything.  That, to me, falls in the “No sh**, Sherlock” category of things I don’t need people to tell me.  The problem is, caregivers know all too well about waiting for the other shoe to drop.  And, people think it’s helpful to relax and let what will be, be, but they don’t know the secret that most of us know: if you don’t let your guard down completely, you’re a lot more likely not to be devastated by the dropped shoe.

This post is personal to me, but I know I’m not alone.  I hear it on all the groups that I’m in, I talk about it with other families who have kids with similar issues.  Sometimes, you just want to be mom; not a caregiver and advocate.

I talk about being the mood manager for my household, and it’s true.  At every given moment, I’m not only managing myself, but I’m managing at least two other people.  People don’t understand this, they say, “Why (or how) do you do this?”  I can’t answer the how, but I can answer the why: I have to.  If I don’t do this, the house is in a kind of chaos that is not sustainable.  Managing stress and triggers is extremely important with mental illness, and I have to do it while the others are learning to do it for themselves.  I also have tangible proof that this is a good model, as we’ve made good progress.  I’m hoping to be off the hook in a couple of years.

I’ve hit that restlessness that comes when there are no issues so big that I have to be in active crisis engagement mode and also the place where letting your guard down is unwise.  So, I’m sitting here hopped up on a few cafe au laits and writing this post.

I’m always hoping some of you get something out of these posts, so if you do, feel free to comment, and tell me your story.  The telling’s are powerful.

Namaste.

Jenifer

 

 

 

 

 

Oh, Really?

When you’re on a long journey of a specific life experience, even though it is ever evolving and changing, there are some things that can still catch you off guard.

My son has been in a therapeutic day school since 2013.  We’ve had multiple IEP meetings, they have a full history complete with doctor diagnosis and more notes and feedback from me than they care to have, I’m sure.  We’ve discussed how much of my son’s manifesting occurs at home, in his safe space; A space I need to keep safe for him, even though it causes a lot of inconvenience and difficulty for my son’s siblings.  This post came about because of a conversation last week with a team member that was a little off-putting.  I’m going to preface it by saying that while I can come to the conclusion that it is true that most people can’t truly understand something unless they experience it, it is extremely frustrating nonetheless.

My son has been having a lot of difficulty of late with mixed states.  Even though this is a hallmark of bipolar, I suppose if you don’t see it frequently, it can be surprising to witness.  Let’s go with that for now.  Although I have had many, many conversations and email exchanges with the therapist and teacher team explaining my son’s experiences and decompensation at home, it is not something they see often at school.  What they understand of my son at school is that he is a child that internalizes all of his most significant issues and presents with, “I’m fine.”  It has become clear to those who have been around him for long periods of time that it takes a skilled eye to see when he is struggling.  Right now, as his stability is compromised, it is much easier to see.

The “seeing” is where they are getting tripped up because it is unusual.  So, when the therapist called me to say that my son was reporting being very sad at check in’s along with crying, but then witnessing him skipping down the hallway only a short time later, I confirmed that his often rapid-cycling mood does indeed manifest that way.  The therapist was a little out of sorts over this revelation in front of his eyes.  When the therapist asked me if this is similar to what I see at home, I was glad I was on the phone because I know I rolled my eyes (I’m an eye-roller from way back).  It’s difficult not to be frustrated when I have described this to the team more times than I care to recount.

When I get the, “Wow,” reactions, especially from people who have been with him in a setting for a long time, it confirms my belief that people can’t really understand something unless they “see” it for themselves.  No matter how many times someone says, “I understand,” they don’t until it happens in front of them.  This is my experience with people, and it is doubly frustrating because I spend a lot of time talking about mental illness and particularly that of our family’s journey.  When I hear the, “We didn’t know,”  my mind says, “Oh, really?” no matter what words come out of my mouth.

As a mother and an advocate, I can only say that I feel strongly that it is necessary to bring awareness for and to the many children that suffer from an illness that can be invisible to the eye, or entrenched in a behavior manifestation that belies understanding.  There are scores of children that suffer in silence or endure judgment over a illness that is not well understood, neither by themselves nor their peers, and not even by their teachers and caretakers.

While my sons still experience stigma and are very misunderstood by a good portion of people in their lives, it doesn’t mean that people don’t care.  I want to say to others on the journey that there is a definite difference between people who care and are trying their best to understand and those that are just dismissive.  I know that our team cares about our son and they are doing the best they can with the tools they have at their disposal.  The illness that is bipolar is still not as well understood as it should be.  I dedicate a big portion of my life to this, so I understand that a group working with so many different populations of children can’t possibly know everything there is to know about bipolar.  The fact is, my son is in a school where his ED (emotional disturbance) label comprises less than 5% of its population. This is why it is so important that advocates and caregivers are well researched and informed and know the challenges that come with an ED categorization on an IEP.

 

 

 

 

 

 

Truth Is….

It’s not easy educating others about mental illness.  Lots of people have preconceived notions and no matter what is said, minds won’t be changed.  I get that.  We all have thoughts and opinions about things we have built over time.  There is also a point at which we have no interest in certain things, as in, we don’t really want to learn about a particular subject; either it’s too controversial, too boring, too distasteful or maybe we feel we aren’t smart enough to grasp it.  Whatever the case, there are a lot of roadblocks in teachable moments.

One thing that I run into a lot, which is actually very frustrating, is the knowing “nod.”  The, “I get what you’re saying,” look.  The problem is, after another minute or so, it is very clear the person has no idea what I am saying.  Really, it’s only a problem if my intention is to have someone understand.  Most of the time, I honestly couldn’t care less whether or not people understand me.  My life is pretty busy and complicated and difficulty only comes when I’m seeking to be understood.

There are things, I guess, that most people just can’t fathom.  I have received hundreds of questions, and I have an arsenal of answers.  Lots of times, they aren’t popular.  People don’t want to hear that your child/children aren’t capable of some things. Here is a real life example of one issue we’ve faced:

Q: “Why can’t your 16 year old cut the lawn?”  A: “He can cut the lawn.  However, it will take over two hours.”  Q: “What?  This is property is really small!  Why?”  A: “My son has a processing disorder, along with an anxiety disorder and working memory issues.”  Q: “What do you mean?”  A:  “I will come and demonstrate how to start and operate the mower.  Then, I will begin to mow the lawn and show him how to cut in a pattern.  Now, I will watch him do a little bit and maybe go back inside.  After he does a little bit, very anxiously, he’ll come in to check whether or not he is doing it correctly.  I’ll go back out, look at it, point out places he’s clearly missed and set him back at it.  He’ll try to start the mower again, have difficulty, get frustrated and insist that it won’t start.  Then, I’ll stop what I’m doing, show him that it starts fine by doing it myself, and then set him out to continue.  After a bit, he’ll come back to find me again and tell me he’s finished.  I’ll go outside, take a look around and show him all the places he missed, and have him go back over those places.  He’ll have stopped the mower again, so I’ll have to wait and watch him restart it.  This time, he’ll be watching that I’m watching him, but he’ll get it started.  He will mow over all the places he’s missed and then come back to find me for a final check. If we’re lucky, that will be the end of the process.”

Response from acquaintance: “That seems like an awful lot, you baby him too much, just let him do it, I’m sure he’ll be fine.”

My response: “How about this?  How about you take my place and you just hang outside and watch him do it?”  If you need validation that I’m doing it wrong, please feel free to take over and get something off my plate.

That is a minuscule example.  If I want to double down and ante up, I can give you another.  A younger son of mine has bipolar disorder.  He is nearly 13, and right now, he is very unstable, and as we say, “breaking through his meds” (meaning, his once successful medication regimen is coming apart and not working for him).  Besides the return of active suicidal ideation, his perception is skewed and very illogical.

Person: Your son needs to understand that he won’t always get his way.  Me: He understands that very well.  Person: Well, he seems to be very upset that he can’t have his way right now.  Me: I understand that through your limited view that may be what you believe to be occurring at this moment, however, that is not at all the case.  Person: It’s clear that at his age he should be able to hear “no”.  Me: What is clear is that you have no understanding of the challenges to someone in the midst of a depressive cycle.  My son is having real difficulty coping with his emotions since he feels so poorly about himself and feels he’d rather be dead.  Does that make you feel better?  Person: *crickets*.

This may sound harsh, and I can only say, if as a parent, you have ever dealt with unwanted advice from people who would rather sit in judgement than understand anything, you know where I’m coming from.  My patience level and filter has waned a large degree over the years.  My only interest is my son being able to function to the best of his ability, and being the best person he can be.  I don’t have time for judgmental people, haters or ignorance.  The good news is, there are people who care, do their best to understand, and are even supportive.  When we find those people, we treasure them.  In the meantime, we’ll do our thing.  Truth is, that’s the only option anyway.

On Depression

In light of the tragedy that occurred with Robin Williams, I’m going to stray a little from my normal topic of childhood mental illness.  Though certainly my illness began in childhood, as likely did Robin William’s, we are adults at this time.

I suffer from depression.  Technically, if we are going to go there: major moderate depression; “moderate” because I still shower.  That’s the distinction, apparently.  I, like many others who suffer, struggle to eloquently illustrate what it’s like to have major clinical depression.  Some have done a wonderful job, like Andrew Solomon in his sure to become a classic of modern literature, The Noonday Demon.  Rarely have I read so prosaic a compilation as he has put forth.

Explaining to my husband today, there is almost never a time where the thoughts about myself running through my frenzied mind are good.  The false facade I put out in cliched “Yay, me!” statements are couched in the realization that I’m an inadequate, lackluster, lazy, worthless person.  I spent years upon years in therapy, natural remedies, exercise, and medication.  At best, I get some relief occasionally.  Usually that is in the form of numbness, which isn’t necessarily an improvement.  Not really “giving a shit” about anything isn’t really great, especially when you have a family.

When I first heard about Robin’s passing, I cried.  Sobbed, actually.  I thought to myself, with all he has come through, all he means to this world, if he couldn’t feel it or own it, who will? He was definitely a bright light here. For myself, I’m not suicidal, nor have I ever really contemplated suicide, but I’ve certainly had plenty of thoughts that my presence here doesn’t matter much.  I struggle, most of the time.  I’m continually overwhelmed and exhausted and having two children with serious mental illnesses is extremely challenging, to boot.  I do my best, but I know how short I often fall.

The sad fact is that even my husband isn’t fully aware of all I go through.  Oh, he knows when I have particularly bad days, but he has no idea of the reality that is mine on a daily basis.  Really, what’s the point of talking about it?  You can’t make someone feel what you feel, or despair as you do, and who would really want to, anyway?  To what end?  What to do?  I don’t know.  I haven’t, even at 43, figured that out, but I’ll keep working on it.

I’m mostly putting this out there because I want anyone who struggles in this way to completely understand that you are not alone.  I don’t have answers, but I do empathize.  I am always willing to be available to offer some encouragement.

Peace to all of you,

Jenifer

Divisiveness Isn’t Helping Anyone

Having just read a Huffington Post article the other day, I was left with the same conclusion I often come to regarding the state of mental health: Our division is hurting us.  You can read the article I am referring to, here.

There is a lot to be said for the passion and drive it takes to advocate for persons with mental illness.  It is a thankless job rife with bureaucracy, red tape and a lot of road blocks. That isn’t stopping advocates from charging full speed ahead.  But, that isn’t what this post is about, really.  I say it because it is important to recognize that a lot of people are volunteering a lot of time and energy into making the lives of individuals better, but are also finding themselves at odds with others who seemingly have the same goal.

Sometimes, I think in our need to be “right” we miss out on the bigger picture.  People with very similar goals and different perspectives should work collaboratively for the good of all. Ought we really take such a divided stance to mental health?  I am constantly running across so much judgement in the field.  I am frustrated by it.  Why deny people their experiences?  Can’t your “truth” be as truthful as someone else’s “truth”?  Not only are we fighting stigma of society at large, we are fighting stigma within our own movement.  Meds vs. Anti-Meds, Assisted Outpatient Treatment vs. The Rights of Individuals, Behavior vs. Cognitive, etc., etc.  All of this and we are so far mired in the muck with not a lot of progress being made, we may never get out.

What would it look like if we could acknowledge each other and find common ground to take care of individuals with serious mental illness so they do not wind up homeless, in prison or dead?  What would it look like if we could place importance on education so that children could be identified earlier and given the best chance to battle a looming mental illness?  Why can’t we do both?  I don’t pretend to have all the answers.  There is so much need and so much that needs to be changed, sometimes it is nothing but overwhelming. Certainly, though, at the very least, there are a few key things that could go a long way in helping.  Some of the things are listed in Bill HR3717.  The need to redraft HIPAA so that parents and guardians have the ability to work on behalf of their mentally ill children is a big one.   We need to stop closing community mental health centers and mental health hospitals that facilitate programs to keep people off of the streets and as well as possible.  Not only do we need to stop closing them, but we need to fund them to the fullest extent possible to reach as many individuals as possible.  We need to find a solution to taking care of the most severely mentally ill that doesn’t include locking them away in a place, never to be seen again.  We need to stop stigmatizing the mentally ill by understanding they are fighting a very hard battle.

Peace,

Jenifer

 

 

 

It Works!

Now and then we get some surprises.  This time, it was a mixed blessing, but still a blessing overall.  Stay with me and I’ll show you what I mean.

Doctors are finding surprising results from medications traditionally used for other purposes.  In this case, the medication is Cycloserine, a generic of a drug (formally under the name Seromycin) manufactured by Eli Lilly.  This drug is an antibiotic that does not carry with it the same risk factors as antipsychotics, SSRI’s, etc.  It was traditionally used in the prevention of tuberculosis.

There is a more in depth description of Cycloserine, here, where it also describes some uses.  For our part, our psychiatrist has used it for people on the autism spectrum, where it has, in his experience, worked to “open up” the verbal channels and promote speech in the non-verbal.

My 9 year old son has struggled with expression his whole life.  He has trouble connecting feelings with language and has always reacted to triggers without us knowing that he was even upset about something.  His affect has always been quite flat so it has been hard to see into his feelings, whether happy or sad.  He has never been able to verbalize any of what has bothered him appropriately, and has always historically resorted to meltdowns and unsafe behaviors without warning.

After a little more than a month on Cycloserine, there is a stark, remarkable difference.  All of a sudden he is keeping a “feelings” journal (what?!? really?!?) and speaking at length with his therapists about what bothers him at school, at home, with other kids, on the bus, you name it!  Here, you will have to understand that we had actually suspended outside therapy because we were making no progress with CBT (Cognitive Behavioral Therapy). My son could give all the “right” answers and talk the talk, but he could not speak about his own feelings or internalize anything that was being taught to him.  Even though I new very well there were sensory issues, the degree of severity with which some of these affect him are now becoming more clear.

This progress has been amazing and very helpful to all of us.  However, there has been a downside and I wanted to be transparent about that, too.  Even with other mood stabilizers in place, his mood has gone back to rapid cycling.  He is having meltdowns and some aggressive behavior.  Right now, we are tweaking his other medications to alleviate those symptoms.  Still, this result is not only what we hoped for, it is something I had almost given up on hoping would ever happen.

Thankful to doctors like our psychiatrist, who are always keeping abreast of the latest treatments, as well as really listening and understanding what we as families experience. Very grateful.

Peace,

Jenifer