Mental Health and Hormones

This might be an odd topic to discuss, but it’s actually very important in terms of adolescent mental health particularly if there is a biologically-based brain disorder on the table.

What happens when puberty strikes?

Let me get this off my chest.  I hate the word ‘puberty’.  I don’t know why.  It’s a weird word, isn’t it? I don’t even like to say it aloud.  “Puuuuuuuuuberty.”  No.  Just…no.

What else can I call it? Game Day? The Dawn of a New Age? Rites of Passage? Pledge Week? These all sound like terrible movies, cults, or something that happens to you at a Greek Week event.  But, isn’t that what puberty feels like? I digress…

Everyone warned me that puberty would be an über nightmare for Grace as opposed to the standard nightmare that the neurotypical folks experience because the sudden surge in hormones might possibly increase the intensity of her diagnosis–schizophrenia spectrum disorder.  I winced.  It is a valid concern because onset of puberty is often the time when schizophrenia and bipolar spectrum disorders emerge.  If you have a child who has a childhood-onset diagnosis, then what might puberty change or exacerbate?

So, how has it been?

Well, the first thing to note here is that Grace has been taking Abilify since she was 11 years-old, and Abilify affected her sexual development.  She didn’t experience any signs of puberty until she was well into her 15th year.  That’s late.  It was concerning.  We were almost referred to an endocrinologist.

The second thing to note is that her symptoms were in no way exacerbated by her diagnosis.  She was a very typical teenager if ‘typical’ is a thing.  In other words, her behavior and thoughts were well within the bell curve for what I would define as normative although she has favored emo-angsty self-expression for about a year.  It’s like living with a character from a knock-off John Hughes movie.  The month prior to menarche (another word that should never be used), however, she became an asshole, and no one knew why.

Also, she wanted to snort and mainline sugar.  I had to practically build a wall between her and the kitchen just to keep her away from anything potentially sugary–even granulated sugar! She hated everything as well.  She was rude.  She wanted to be left alone.  Everything was bad.  And, she cried all the time.  She is my third daughter.  I’ve seen all this before but not quite at this level.  A friend commented, “Wow, she just hates everything.”

Well, when her first period arrived, it all crystallized, and her mood cleared up.  It’s damn hard being a girl.

We did not, however, have any psychotic symptoms.  We did not have a surge in mania.  It was fairly typical.  Everyone in the house gets a bit moody and upset as their hormones ebb and flow.  Doireann cries.  Eadaoin gets punchy.  Grace hates everyone and everything.  I feel irritable.  It is life.  You learn to go with the flow (sorry about the pun…).

The good news? There was no apocalypse, and that means a lot because more than a few people prognosticated the end of the world for Grace when Shark Week hit.

So, should you be in a similar situation, wondering how your child will do when the surge of hormones bathes their brain in all the colors of the moody, developmental rainbow, have hope.  Sometimes things go smoothly and everything works out.

Just as you hoped it would.

 

 

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How to Advocate

If you’ve followed our journey here at Empowered Grace for any length of time, then you’ll know we have had our share of struggles within the education system.  Anyone who’s had to fight for an IEP can empathize with this.  This isn’t, however, what I’m talking about.  I’m talking about experience with teaching staff who perhaps should no longer be teaching.  Remember Miss Lydia or perhaps the school principal whose mediation at which I testified? The school principal was ultimately fired as was the nefarious Spanish teacher.  Miss Lydia was moved to another department much like a pedophile priest.

It’s a bit weird to think about, isn’t it? We hope that when we send our kids to school the teachers and staff will be safe people.  We trust that they will be.  When we step back and look at that assumption, we must see the flaw in our belief.  If we break down the staff at a school district into a percentage, then what is the likelihood that 100% of the people working in a school district will be well-adjusted and healthy? When you look at it through that filter, you start to see the problem.  What percentage of the staff might have a personality disorder? What percentage might have health problems that affect their ability to effectively teach? What percentage might struggle with depression or mood disorders? What percentage might be living with or caring for someone who meets these criteria thusly detracting from their overall well-being as individuals?

Or, let’s be honest, what percentage of the staff might just be assholes? I’m not sure when the DSM will consider ‘asshole’ as a psychological pathology worth treating, but I think someone should put it on the table for discussion.

It’s hard to be an effective teacher.  I would not want that job.  These days you aren’t dealing with just the kids.  You’ve got the parents, too, and this makes teaching that much harder particularly if you teach at a private school.  I get it.  Nothing is simple anymore in terms of ‘going to school’.  The Columbine shooting changed everything, and the arrival of the Helicopter Parent perpetuates entitlement and immaturity within student populations almost tying the hands of educators, it seems.

Still, what do you do when there’s a bad apple in the bunch? What happens when the bully isn’t another kid but an authority figure? And, what do you do when said authority figure targets vulnerable youth?

This is our situation at Milly’s new school this year, and the ‘bad apple’ is her case manager who also happens to be one of her math teachers as well as her social skills class teacher.  It’s not a situation I’ve ever come across before.  Usually, a case manager is a social worker working in the special education department.  I have never met a case manager who doubles as a teacher.  It feels like a conflict of interest to me because social workers often act as liaisons between students and teachers.  The social worker is the soft place to land for the student.  Teachers are there to educate and adhere to state requirements.  They are authority figures.  They discipline in the purest sense of the word.  Social workers are the nurturers.

A few red flags cropped up with this teacher/case manager, and I have been documenting her behavior.  Milly came home, sometimes crying, about certain interactions that occurred in her social skills class.  She continued to say that she felt worthless after every social skills class.  A red flag.  I notified the principal and laid before her what I had documented.  Sometimes this is all it takes.  A teacher decides to try a new approach.  They don’t know how it’s going until someone says something.  I’m often the one who says something particularly if children are getting hurt.  The principal responded quickly, spoke to Milly’s case manager, and resolved the situation.  She spoke with me and said that this woman seemed remorseful and had even cried.  The teacher said that she never meant to hurt anyone.  Good, I thought.  All taken care of.

A few weeks later, Milly informed me that nothing had changed.  This woman was still yelling at the class for not holding their paper in math class in a very specific way.  She demanded that the entire class “write neatly”.  She roamed the class looking at every student’s work and even erased papers in their entirety if she found handwriting that didn’t meet her standards–even the papers of special needs students.  This smacked of obsessive behavior which, to me, was another red flag.

Milly then came home sobbing after an incident within her social skills class led by this teacher which was, to say the least, beyond the pale.  I documented everything and contacted the principal yet again.  Once again, the principal acted quickly, but this incident was more serious.  It took longer to resolve, and Milly was becoming more fearful of her case manager/math teacher! This teacher sent me a personal email asking me to contact her directly with concerns.  She did this for two reasons: 1) to appear personable and 2) to avoid future entanglements with the school’s administration namely the principal.

This was yet another red flag.  How do you deal with a person who is subtly manipulative like this? Call their bluff.  This particular teacher is highly anxious.  She cries all the time.  I knew that she was not stable because Milly reported that she would often hijack the social skills class to sit and talk about her own life and problems–to a group of ASD elementary students no less.  Another red flag.  She would often break down during her personal rants in front of these students in her attempts to garner sympathy and hugs from them.

How did I call her bluff? I did, in fact, email her directly about one of my concerns–her insistence that students hold their papers while writing in a very particular way.  In her classes, a student isn’t allowed to hold their paper in a way that suits them.  They must hold down their paper in a way that suits her–even if it hurts the child to hold their hand or arm that way.  I asked her if should would allow, at a minimum, the special needs children in her classes to hold down their papers in a way that suited them so that they could change their focus to the content of what they were writing rather than how they were writing.  She replied that she had never done such a thing to Milly dismissing Milly’s perceptions as ‘internalizing’.  She herself would correct her the next day.

Red flag.  

This situation blew up fast simply by my doing as she asked.  I emailed her a concern, and she personalized it.  She victimized my daughter the next morning by getting her alone for 20 minutes and confronting her about the contents of my email–something my daughter knew nothing about.  Her anger was displaced.  She cross-examined her.  She gaslighted her.  She wept in front of her.  And then she went on to do what no teacher or caregiver should ever do.  She made Milly make a deal with her.  She told her that she was no longer to share anything that bothers her or even happens in her class with other teachers or even her parents.  She was to keep it between the two of them.  “We are going to make that deal, okay?” And she wouldn’t let her go until she promised to make that deal with her.

That isn’t a red flag.  That’s a fire.  That’s a move out of the abuser’s handbook.  Deals? Secret keeping?

I’d like to say that this sort of thing doesn’t happen in schools, but it does.  I’ve run into very suspect behavior in every school in which my children have been enrolled.  It isn’t because educators and staff are innately bad.  It’s simply because human beings are flawed, and human beings populate schools.  One must get used to the idea that every school is a microcosmic representation of what’s “out there”.  There are great people, average people, a few assholes, and even a few predators.

So, what do you do when one of the predators happens to be one of your child’s teachers? Find one of the great people because all schools have great people working there, too.  More than that, there will be more great people working at a school than there will be predatory or abusive people.  If that isn’t the case, then there is something wrong with the school district itself, and my advice is to leave that district as soon as possible.  That’s a systemic problem that one person cannot fix.

In our case, Milly’s new school is full of amazing staff.  Her primary teacher is a gem, and her school principal has award upon award for performing her job.  She is a stellar school principal.  Milly spends at least half an hour a day with the school principal.  They have lunch together.  They check in with each other.  So, when Milly’s primary teacher found her in the hallway crying after she was ambushed by her case manager, this teacher wasted no time.  These women have circled the wagons around Milly.  I was called.  The Director of Special Education was called.

I don’t know what is going to happen, but I have learned a lot after all the issues we’ve had over the years raising children with special needs in the public school system:

  • Establish a line of communication with the administration of your child’s school.  Get to know staff.  Get to know your child’s case manager.  Form a relationship with your child’s teachers.  Let them know that you are there to answer questions should they have any.  Having a relationship with teachers and staff at your child’s school gives your child a sense of empowerment, and it can add support to the people teaching and supporting your child as well.  It also adds accountability to the mix.
  • Listen to your child.  Believe your child.  If your child is continually telling you the same thing about a certain teacher, then pay attention.  If your child tells you that s/he is afraid of a certain teacher, then find out why.  Make simple statements like, “Why are you afraid?” and “Tell me more.  I want to hear your story.”  Don’t tell your child what to feel or ‘should on them’.  Active listening is powerful.  Abuse in schools does happen.  A former teacher at Grace and Milly’s school had been emotionally and physically abusing students for years.  Students had been reporting it to parents through statements like, “I’m afraid of her.  She’s so mean,” but parents often overlook statements like these because they feel that it’s just part of being a kid.  They had to tolerate mean teachers, too, so why shouldn’t their children? Investigate.  There can be a mile of difference between a strict teacher and a truly mean teacher.
  • Document, document, document.  I can’t emphasize this enough.  You can’t approach administration without evidence.  You can’t ask that changes be made in the way of speaking to a teacher, correcting bad behavior, or even investigating questionable behavior without good documentation.  Good documentation means writing down the date of your child’s complaint, the complaint itself, and any other observations your child made.  The more details that you can record the better, and those details are far more powerful than an emotional phone call from a parent.

The best outcome in most cases is that a teacher is made aware of their less than desirable behavior or teaching method, and they correct it.  There are a plethora of reasons why teachers fall back on excessive shaming, yelling, manipulation, ambushing, and even physical abuse.  It’s all wrong, but there are reasons.  The teacher who was abusing students at Grace’s elementary school actually had a long-term back injury, and she was in constant pain.  She was losing her ability to manage her chronic pain, and it was, therefore, coming out sideways.  I’m not justifying her abuse.  I’m merely explaining it.

In the end, you can never forget that you are your child’s best advocate.  You are their voice when they have lost theirs, and you are their intercessor as it were.  You stand in the gap for them when the gap becomes too wide for them to straddle or even leap.  It is not an easy job because it requires vigilance, and you never get a break.  Ever.  As they get older, they learn better self-advocacy skills, but, if they have special needs, they will need you for a lot longer than a neurotypical child.

So, be brave.  Don’t be afraid to speak up.  And, remember what Doireann’s sixth grade teacher told me when I was just learning to advocate for my kids in the public school system:

If you don’t speak up for your child, then who will? You get out there and give ’em hell.  That’s your job.

 

 

Endings and Beginnings

2014 is coming to a close, and I am so glad.  This has been one helluva year.  I’m having yet another brain MRI today–the day after Christmas.  The year has to go out with a bang, I guess.  Well, I say, let it! So long as 2015 is inaugurated with celebration.  We made it through 2014, and we’re better for it.

My girls and I spent an afternoon with one of my favorite friends the day before Christmas Eve.  Our two families have had a tradition for a decade now.  We get together and make gingerbread houses.  When we began this tradition, our children were young, and it was really just the two of us frosting and decorating the cookie cottages while attempting to keep the little hands from stealing all the candies.  Odd traditions began.  My friend would unfailingly put the roof on her house upside down.  Every year! She would yell out in frustration, “How could I do this again?!” This year, however, we reminisced about all those imperfections and repeated errors.  It has become mandatory that she put her roof on upside down.  It’s part of the charm.  Our kids, however, took over all the decorating this time.  Eadaoin is sixteen this year.  My friend’s daughter is eleven.  The kids no longer needed our help or advice.

We were able to relax in her living room with our warm beverages and chat while our kids decorated the gingerbread houses completely on their own–even Grace.  What a strange feeling.  She asked how I was doing.  Being a close girlfriend, she went for the jugular: “How’s the marriage?”

Isn’t it funny how girlfriends waste no time? We simply ask.  There is no chit-chat.  My answer? Everyone who reads my blog knows that this year has been grueling.  “Better.”  2013 ended on a precarious note where my marriage was concerned.  2014 will end on a better note.  Perhaps in a major key.

So, what happened? I’ll be as honest as I can be in hopes that it might help someone else should they find themselves in a similar spot.  The day I began writing this blog, the clinicians treating Grace–and there were many–believed that she was bipolar.  Within a month of that diagnosis she declined rapidly and was then diagnosed with a schizophrenia spectrum disorder.  She was not yet 11 years-old.  Her overall decline from healthy child to psychotic happened in less than a year.  It changed our entire family life.  Eadaoin is in therapy today, in part, due to witnessing Grace’s psychosis onset.  Doireann is a completely different young woman today because of Grace’s disease.  We are all different now.  Severe mental illness in a family affects everyone, and everyone behaves differently in terms of coping strategies.

Ordeal has a way of distilling personalities and bringing forth cracks within character and the relationships therein.  I am inherently tenacious.  This is both a blessing and a curse.  I do not give up.  I will hone in on a problem and attempt to fix it until it is no longer a problem or until I have died.  This approach to life worked well where Grace was concerned.  This approach to life worked well in almost all former circumstances.  It does not work well within a marriage when the problem is perceived to be a person.

My husband is as avoidant as I am tenacious.  This is his primary character flaw.  We are both exceedingly stubborn in our positions.  The more I pushed him to deal with those things that increased his anxiety, the more inert he became.  This only increased my drive to “solve him”.  What I did not understand was that he was coping with watching his daughter fall apart by using avoidance–his primary coping strategy.  Avoidance behavior is one of the go-to coping strategies used by those with anxiety disorders.  I do know this, but I couldn’t grasp it at the time.  How does one avoid one’s entire family? Why? One does this because one really lacks the capacity to deal with what is happening.

I observed this and insisted that he see a doctor in order to start anti-anxiety medication.  After almost 17 years of living with his anxiety disorder, I needed him to get his head in the game.  I needed my partner, my friend! I couldn’t do all this alone.  So, I issued him an ultimatum.  How awesome.  Ultimatums are never great, but he did see his internist for a physical.  It was then that he casually mentioned his anxiety.  He was given the standard anxiety check list; he passed it with flying colors.  He left with a prescription for Zoloft.  That’s it.

I must pause and say this.  If a person sees a psychiatrist, then one goes back to the psychiatrist every four weeks after beginning a new medication to discuss how one feels after beginning the drug.  The drug is tweaked or even discontinued in favor of a better or different one.  Internists should not manage psychiatric conditions.  This is where we went wrong, and this is also where I knew we were going wrong.  Recall what I said about my husband’s inertia.  Inertia was settling in at this point.

My husband had never taken a medication for his anxiety.  He had self-medicated with alcohol.  He stopped using alcohol at this point in favor of Zoloft.

A word about Zoloft: Zoloft is an SSRI.  On the spectrum of SSRIs, it is the most emotionally blunting while Prozac is the most activating.  Zoloft is also not a well-known anti-anxiety drug.  It does have some effectiveness for social anxiety, but it is not effective for generalized anxiety disorder (GAD).  Lexapro, on the other hand, is in the middle of the SSRI spectrum as far as emotional blunting and activation.  It is also known to treat depressive symptoms as well as anxiety without some of the better known side effects like suicidal and self-harming ideation for which Zoloft is known.

My husband, however, had never known life without his crippling anxiety, and Zoloft’s emotional blunting was just what he was looking for.  That dead feeling inside that the drug provided helped him cope with his own life as a father, provider, husband, and man.  He liked it.  He liked it a lot.  Perhaps he even needed it.  I, on the other hand, despised it.  He went from an anxious but likable man to a vacant, emotional corpse of a human being.  It seemed that there was no middle ground.  It was one extreme or another.

He disappeared from our entire life, but, in his mind, he was present.  He wasn’t.  He was like a wraith.  We stopped having sex.  For two years.  He had no desire.  In fact, he had no desire for anything.  He described it as feeling paralyzed under a heavy blanket, but he sort of liked it.  He just wanted to do nothing.  He wanted to lie in bed all the time or sit in his room.  He slept all the time.  A ridiculous amount of time.  He, however, was not anxious.  I don’t think he felt anything, and that’s the point of Zoloft.  Imagine a person who feels too much or a person who is completely overwhelmed to the point of being almost non-functional.  Zoloft would be very helpful because it would provide a much needed emotional balance.  Or, perhaps not feeling very much for a time would be helpful in order to learn to think rather than feel all the time.  A drug like Zoloft can be very helpful given the right brain and circumstances.  It was, however, not the right drug for my husband.

After living with him for almost two years on this drug, I truly began to believe that perhaps I was worthless and unlovable.  He did almost completely ignore me almost all the time.  There was, however, much to be learned here.  At some point in the middle of this, I realized that, as a woman, I gleaned a great deal of self-worth from the success of my relationships.  This is a rather female point of view.  I gave up a career to stay home and raise my daughters after all.  It’s not as if I have a career to fall back on at this point.  In my mind, what does it say about me if, after all this time, I come out of this with a shitty marriage and mentally ill children? I thought I had to be Martha Stewart for Pete’s sake!

What now? What if he really didn’t love me anymore? I had to get a life.  That was the loudest message that I heard throughout 2014.  Build a life.  I saw it everywhere.  A stranger in a restaurant even came up to me and told me that very thing if you can believe it–“Don’t wait for your husband to figure out what he wants.  Go out there and do what makes you happy.  Build a life for yourself.”  What an empowering message.  So, I stopped looking at him and what he was doing.  I started looking at me.  I aimed that tenacity at myself and left him alone.  I let him sit alone in our bedroom for months on end.  I let him sleep the days away.  I started making weekend plans with the girls.  I started…living.  It was hard because I felt like I was leaving something behind.  Something symbolic.  I realized, however, that we must always be bringing something vital into our relationships.  We must always be building our own happiness and internal resources as individuals if we are to attempt to build something worthwhile with another person.  Grace’s illness tapped me out, and I became so focused on her and my other daughters.  I forgot that I was a separate person, too.

So, what happened? He felt my emotional departure.  I didn’t abandon him.  I simply left him alone, and that changed the dynamic in our relationship.  He started asking to join me on our outings.  He was still emotionally comatose, and I was still seething with resentment; but, something was thawing.  Two months ago, he finally saw a psychiatrist, and she switched him from Zoloft to Lexapro.  He recently told me that he had no idea just how dead he felt on the inside on Zoloft until he didn’t feel that way anymore.  He then said, “I should have never been on that medication.”

Yes, I wanted to punch him.  The past two years have gutted me.  Our marriage has suffered in ways that I never thought it would, but perhaps it needed gutting.  There was never going to be an easy way through this leg of the journey with Grace.  It was always going to be horrendous.  We did what we had to do.  I, however, wonder if my health would be better today had he not abandoned ship as he did.

So, what’s the takeaway? I suppose that it’s this: Even if everyone else abandons you, don’t abandon yourself.  There will be crises in life.  Once those crises settle, come back to yourself.  In the end, no one is going to take better care of you than you.  Man or woman, we must always invest in our own development and healing.  That says that we are worthwhile and lovable.  We can’t expect others to love us if we don’t love ourselves.  It is, therefore, crucial that you find those expressions of self-love that are meaningful to you and claim them.  Make them a part of your life in a consistent way.  In this way, you will learn to weather the storms in life be they circumstantial, relational, or existential.  And practice the art of forgiveness.  This has been my greatest challenge and lifesaver.  Learning to move forward without giving up self-respect and, at the same time, granting pardon.  This is the grittiness of life. This is the hard stuff.  Knowing that pain and love often weave themselves together as we grow, and one doesn’t cancel out the other.  They often coexist.  Forgiveness doesn’t ease the pain, and pain doesn’t minimize love.

This is what I’ve learned in 2014.  It’s been a very painful year, but, as I said, I’m better for it.

I hope that as 2014 ends you are able to see where your paths have taken you, find a new horizon line, and begin the next leg of your journey with hope.

Shalom…

An Ontological Discussion

I’m back! Where was I? My precious laptop died.  The hard drive failed.  My Mac was sent off to the Genius Bar for an entire week.  O the pain! My husband was very pragmatic about it:

“You’ll be fine.  We have three iPads.  Just use one of those, or use your phone.  You’ve got a Smartphone.”

My response?

“…..”

I feel the need to defend our possession of three iPads.  My husband works in the IT field.  He was given all those iPads through occupational opportunities.  “Show up at this event and get a free iPad!” He once went to a Microsoft roundtable discussion and walked out with a free laptop.  I don’t understand how that world operates, but I do appreciate the swag.  He was even given the MacBook Pro I now call mine.

Anyway, I am not 25.  I cannot write blog posts from an iPad.  I’m one of those old people who requires a keyboard.  Even a tiny Bluetooth keyboard.  Something!

It’s not a bad thing to go silent for a while.  I was cut off from the Internet essentially, and I was more present because I didn’t have the distraction of my shiny laptop.  So, what have I learned in the brief time that I was offline?

Milly is finally seeing a pediatric psychiatrist.  When I step back and read this I shake my head.  I have three children seeing psychiatrists.  Good grief! Is that really necessary? Remember that neighbor down the street who was gossiping about my family with other neighbors? She yelled at me from her front steps and screamed “Munchausers!”  When she emailed me later to justify her behavior, she told me that she knew that all my children were medicated; she didn’t agree with that.  I must have “Munchausers” if I’m medicating all my children.

Her obvious ignorance regarding factitious disorders aside as well as the perpetuation of misinformation amongst the women down the block, there is a valid point hidden here.  Is it good to medicate children? Grace is medicated.  Eadaoin is medicated.  Milly is medicated.  Doireann is not.

I used to think like my neighbor.  I refused to take medication myself.  My mother took so many drugs.  I didn’t want to be like that.  I grew up around myriad pill bottles.  My mother had Multiple Sclerosis, and she had a pill for everything that ailed her.  In the early 80s, there weren’t a lot of treatment options.  She also struggled with a major depressive disorder in addition to a personality disorder.  I grew up around mental and physical illnesses.  I wanted to walk a different path.  I wanted to be my mother’s foil in every way.  So, when I got my first migraine at 27 years-old, I didn’t want to take medication for it.  Surely there was a better way to manage it.

I went to a homeopath.  I went to a naturopath.  I saw chiropractors.  And, I suffered.  Everyone had different opinions as to why I had migraines, and they were all adamant that they were right.  I tried to do everything that everyone told me to do.  I never improved.  Eventually, I began to experience 20 migraines a month, and my OB practically dragged me to a neurologist.  I needed medication and testing.  I was terrified.  I hated neurologists having been forced to see them when I was younger due to a seizure disorder.  I wanted to be done.  Thus began my journey into the weird world of the brain and better living through chemistry.

If epilepsy runs in your family, as it does in mine, you have almost double the risk for developing migraine with aura.  Oh.  Well, that sucks.  Maybe I should have visited a neurologist sooner for my migraines.  I have a seizure disorder.  Migraine with aura in women causes white matter lesions which can permanently alter brain structure.  Uh…that seems important.  So, taking Excedrin for Migraine and sleeping it off isn’t a sound practice? We should not be doing that? Why? Those structural changes can put you at risk for stroke later in life.  Add an autoimmune disease like SLE to the mix and the results can be even more serious.  A migraine is not a headache.  It’s a neurological event that requires the care of a neurologist.  Not the dude at Walgreen’s stocking the analgesic aisle.

I’ve made my point, right? I was an idiot to wait so long to see a neurologist, but I was afraid.  I was afraid because I’d been forced to see neurologists before, and they were all asshats.  That’s right.  All of ’em.  Neurologists, in general, tend to treat patients like walking brains.  They are known to have a terrible bedside manner largely because they are so smart.  Neurology is a very hard speciality, and it draws the clinically-minded physician who should probably be in a lab dissecting brains rather than interfacing with humans with pulses.  I wasn’t properly diagnosed with a seizure disorder for years because my seizures were idiopathic.  A brilliant neurologist finally diagnosed me based upon posturing in my left hand.  From that posturing she knew the type of seizures I had and predicted that my EEG would be “clean”.  Up until that moment,  I felt crazy, and I was weary of being examined and sent on my way with a clean bill of health even though I knew something was wrong.

But we keep trying.  We are tenacious.  We don’t give up just because we don’t like it or because we are scared or because it’s hard.

This is what it’s like with our kids and even ourselves when we talk about mental health.  There are some horrible mental health care providers out there.  Let’s just say it.  There are! I’ve met some really bad therapists and psychiatrists.  There’s a reason One Flew Over the Cuckoo’s Nest was written.  I’ve met my share of Nurse Ratcheds and sadistic psychiatrists.  Do we let them determine our progression in life or our choices? Do we abandon our path and camp out somewhere just because we’re afraid? Do I refuse to get help for my daughters because I’m afraid of what other people will think of me or even them? Do I cower or let my daughters shrink because a few women down the block gossip about us?

One day, medication may not be the right answer for Milly or Eadaoin, and I’m open to that.  I am, however, out there in the world banging on doors.  What is going to move them up the spectrum of functionality? Three weeks ago, Milly was crying every day, overwhelmed with fear and anxiety.  Today, she isn’t.  She’s able to try to take risks.  She has moved up the spectrum of functionality.  Can she self-regulate? Well, she tries.  It took her an hour to calm down last night after a disappointment, but she did calm down eventually.  She is able to talk about her feelings with more ease rather than hide under her desk in her room.  On a very basic level, this is why we use medication in terms of treating mental health issues.  We are attempting to augment a deficiency so that we become more functional in hopes that the side effect profile of said medication will not add to our deficiencies.  While the drug is in use, we take advantage of therapy in order to learn new skills that will compensate for our natural deficiencies so that when we stop using the drug we will not feel our deficiencies as much as we did before.  The drug is a buffer and a life preserver of sorts that allows us to learn to properly swim in whatever sort of sea characterizes our life.  If our life is like choppy waters, then we must acquire the skills to swim in that.  If our life is like that of a vast ocean, then we must acquire the skills to learn to swim in that.  If we live on an island with few resources, then we have to learn to live there.

Why would we deprive our children, ourselves, or anyone else from acquiring functionality or judge someone for attempting to engage in this growth process? Why should we fear? My neighbor judged me harshly because she insisted that schizophrenia was really just caused by a food allergy.  I was the stupid one for consulting a doctor.  I had “Munchausers”.  I should have been seeing a chiropractor who specialized in applied kinesiology.  She is entitled to her opinion but not her judgments.  None of us are.  I don’t walk in your shoes, and you don’t walk in mine.  I have no right to hold your decisions against you when I don’t even know how you arrived at the space in your life that you now occupy.  I’m not privy to your deepest desires or the movements of your heart.

What I do know is that it’s far easier to judge someone than to love someone or even come alongside someone who is suffering.  But, I think that goodness is the answer for what ails us.  It will always trump judgment.

I was at a conference last year, and a speaker pondered:

“What if the problem today isn’t drugs or terrorism, unemployment or poverty but rather the lack of goodness in the world?”

It’s an interesting question, and you don’t have to agree with the conclusion.  I, however, see more and more that cynicism, criticism, anger, and fear-mongering don’t bring lasting change in my life, the lives of my children, or even the world at large.  Goodness? Kindness? Moving away from always trying to be right to attempting to understand? You may not see change right away, but, on a foundational level, it feels like a better way to move through life.  It seems like a more appropriate response to life’s weightier circumstances.  It seems like a way through when we’d really just like to go around and avoid altogether.  Life, however, can’t be avoided, can it? We must all stand and be counted at some point.  And, if we have vulnerable people depending on us to care and advocate for them, then our reasons for standing up become that much more significant.  Defining ‘goodness’ isn’t easy, is it?

Take my laptop away for a week and this is what happens. Ontology strikes again.

 

Willing Partnerships

I underwent hip arthroscopy for a labral avulsion last Wednesday.  I had hoped for the debridement which meant that I’d be on crutches for a week and PT for a month.  Instead, there are now tiny anchors somewhere in my hip “anchoring” the detached labrum to its proper place.  It’s not a bad surgery really–two small incisions; but, it means four weeks on crutches and three months of PT.  Four to six months until I’m completely back to normal.  I can’t quite accept this.  I feel like I had the surgery months ago, and it was only eight days ago.  I have named my crutches Tweedle-Dee and Tweedle-Dum.  

If you are a person who is a primary anything, then you might understand my next statement.  I feel like I’m going nuts.  I’m anxious.  Really, really anxious.  I have been the primary caregiver and doer-of-everything for almost eighteen years.  I can’t even unload the dishwasher now.  It’s an event to even get out of bed.  I hate it.  I haven’t left the house.  I don’t know when I’ll be able to drive.  I certainly can’t go to the grocery store alone.  I need help with everything.  I have become dependent upon everyone around me for help.

This reminds me of an exercise I had to do when I was in college.  When I transferred from that tiny private college in New York state to the giant mega-versity in Minnesota, I got a job lifeguarding and teaching swimming lessons.  It wasn’t good enough that I had five years of experience or the gold standard Red Cross certification.  I had to go through another week of training because i would be working in a world-class facility designed to host NCAA and international competitions.  If an elite athlete needed rescuing, then we lifeguards would be the people to do that.  So, we were put through an exceptional amount of training and preparation.  We were also put through a great deal of diversity training.  

The exercise that stands out to me as I write this involved pairing off with another guard.  His name was Volkan.  He was from Turkey.  He was very respectful, kind, and handsome, as I recall.  He once told me that his name meant ‘volcano’, and then he said, “Like a volcano, I am peaceful on the outside but hot underneath,” and then he winked.  I was, therefore, very uncomfortable when we were put together for this exercise.  He always wore a tiny Speedo as many non-American males are wont to do, and I was wearing my red swimsuit with LIFEGUARD practically spackled across the chest.  He was required to blindfold me, and, for the sake of the exercise, I had to pretend that I was blind.  That was to be my temporary disability.  I then had to ask him where the bathroom was located, and I had to trust him to lead me from the entrance of the very large facility to the women’s locker room.  He tied the blindfold around my eyes very tightly.  I couldn’t see a thing.  I felt overwhelmingly vulnerable, and I also wondered if Volkan liked the exercise more than he should, recalling his prior flirtatious wink.

After I overcame my feelings of vulnerability, I felt paralyzed, leaning over, shuffling my feet.  All I could hear was Volkan’s voice guiding me.  He wasn’t supposed to touch me.  That was one of the requirements of the exercise.  We were supposed to respect every person that came into the facility and respecting their bodies was a requirement.  We could never just assume that we could touch them.  Sure, it would be easier to grab someone by the arm and lead them, but that’s pedantic and disrespectful.  What adult would want to be treated like that? I had to trust a guy that I barely knew to get me from point A to point B, and I felt almost exposed, blindfolded in my swimsuit.  That was the point though.  How might it feel to be blind? How might it feel not to know the way? How might it feel to need help from a stranger but not just a stranger? A strange voice? In a strange environment surrounded by strange noises and the echo and reverberations of bodies slapping against water, wet feet running past you? It’s disconcerting not to mention being half-dressed.  That, too me, amplified my dislike.  Would it have been so difficult had I been wearing pants? I like to wear pants.  I feel like I need them. 

Volkan did successfully lead me to the women’s locker room.  The sadist in me found comfort in knowing that Volkan had to wear the blindfold, too.  I had to lead him to the men’s locker room without touching him guiding him only with my voice.  It was a lot harder than I expected it to be.  I had such a strong urge to reach out and grab him saying, “Oh just come on then!” Do you know how long it takes to lead a blindfolded person through a huge facility to the locker room? A bloody long time! I realized how impatient I could be, and I saw how patient Volkan was.  We got to be friends after that.  I admired his fortitude, and he liked my “American humor”.  Had the term “snark” been in use back in the mid-90s, he would have used that word instead.  The two of us were continually scolded for not taking the exercise seriously enough.  That was my fault.  I kept saying inappropriate things while blindfolded.  What? I had to defend myself! I wasn’t wearing pants!

There are many metaphors embedded in this experience, but what stands out to me the most right now is the sudden loss of independence and self-reliance.  What did it feel like to be forced to rely on someone else’s perceptions of reality? What did it feel like to need another person so resolutely? How did I feel then when I couldn’t see? What would it have been like if Volkan would have been impatient, unkind, and expected me to act like a seeing person? 

I think of Grace as I write this or even Milly.  I think of anyone with a deficit who is expected to perform as if they are not deficient.  We are all deficient in some way, but many of our deficiencies don’t impact our lives in a significantly measurable way.  Mental illness, however, can impact us.  It can disable us.  Ask anyone who has endured a season of depression if their ability to function was impacted, and they will tell you that it was.  What about anxiety? Anxiety can be a crippling disability.  And, then we step into the realm of mood and psychotic disorders.  Entire families can be disabled.  

This diversity exercise worked between Volkan and me because we were both willing, and that also stands out.  I was willing to be led, and he was willing to patiently lead me.  It was a good partnership.  What if I had refused to engage or believed that Volkan was entirely responsible for me? What if Volkan refused to help me, not respected my dignity and dragged me to the locker room, or had begrudgingly helped me but had done so with a negative attitude? There are so many ways a partnership like that could go when applied to reality.  What if I believed that Volkan was out to get me or actively trying to hurt me, or Volkan resented being asked for help because he was in denial? He believed I wasn’t really blind at all.  This is a common dynamic in families where mental illness is diagnosed in a child–denial.  An effective partnership becomes next to impossible in that scenario.

Willingness is key, isn’t it? Willingness is one of the core DBT values that Eadaoin and I have been learning.  You don’t accomplish much in life if you aren’t willing.  There must be a willingness to listen, to learn, to practice perspective-taking, to validate, to be humble, to be open to other ideas and solutions, to try again, to try something new, to be wrong, to ask for help, to accept help, and to admit that you don’t know but that, given that you are willing to try again, you might very well know at some point.

For me, I have to be willing to sit this month out.  I have to be willing to let others do for me, and I’m not accustomed to that.  That means that the laundry will be folded differently.  Towels will be hung differently (we all have our ‘things’).  The girls will be eating a lot of gluten-free chicken strips, and my bed looks like a gerbil nest because my husband doesn’t know how to make it.  I have to be willing to look for what works and give up my perfectionism and ambition to do it all so that my hip heals properly.  I have to find the willingness to practice mindfulness and radical acceptance.  It’s easy to say.  Hard to do.

This experience also gives me new insight into Grace’s world.  She apologizes a lot because she feels like she’s always asking for help.  She feels like she’s too dependent, and, well, she has become dependent.  That, however, is not her doing or her fault.  It is the nature of her illness.  Right now, I need help with everything.  I can’t even carry a cup of coffee because I need my hands to use my crutches.  I am forced to rely on everyone around me as is Grace.  It is very unpleasant.  I feel very anxious.  I understand, at least a little bit, why Grace feels so much anxiety.  But, as long as she’s willing to ask for help and I’m willing to help her, we’ve got a working partnership.  I can reassure her that I don’t mind helping her because that’s what I need.  I see this now.  I need my husband to tell me that he doesn’t mind helping me.  What would be even better? I would like him to say that he likes helping me because he loves me.  That’s what I need to tell Grace then.  It’s a privilege to help her.  That would be even better.  I think that it’s normal to fear being a burden.  Why would it be different for her?

Enter willingness.

She’s willing to show up and so am I.  And, I think that’s true for every partnership in life.  Both people have to be willing to participate.  If you’ve got that, then you can go somewhere together.  

Willingness=Hope

 

An Evening Post

Grace cried this evening.

It wasn’t tears brought on by lability.  One grows used to those tears.  Sometimes those tears seem almost like crocodile tears.  I almost feel numb to that sort of emotional display because it seems to be brought on by a shift in brain chemistry.  I know that Grace’s medications need to be adjusted.  It almost feels like a surreality.

This was different.  This was honest.

Grace didn’t cry often as a baby, and she rarely cried as a toddler.  She cried when she woke up from her naps.  That’s it.  Her preschool teacher once told me that she didn’t think she could ever stand to see Grace cry.  She has always been that sort of girl.  Happy and somewhat quirky.  Even as a toddler.  In her own world.  And whatever her world was like, there was no crying.

So, when she cries, it affects me.  I don’t like to see anyone cry.  I might cry if someone cries in front of me.  When Grace cries? I suffer.

She wanted to help Eadaoin babysit tonight, and Eadaoin looked at me in silent desperation–a plea for help.

“Grace, I think it’s better if Eadaoin goes alone.  You had a sleepover last night, and you said that you were really tired earlier today.”

“But I love taking care of little kids, Mom!”

Eadaoin looked conflicted.  “Grace, it’s just that it’s going to be late, and it’s hard for me to babysit with other people with me sometimes.”

Grace didn’t understand.  I looked at Eadaoin.  I looked at Grace.  I decided to tell her the truth.

“Grace, I think what she’s trying to say is that she feels responsible for you, too, when she’s babysitting, and she wants to focus on taking care of the children that she’s being paid to look after.”

“Yes!” Eadaoin said with relief.

Grace looked confused for a moment, and then her expression changed.  She looked at me.  She looked at Eadaoin.  I saw tears well up in her eyes.  She understood, and in her understanding of what was being implied I felt pain bloom in my chest because I knew that something painful was blooming in Grace’s chest, too.

She turned around and silently walked up the stairs, but I could hear her crying.  I couldn’t let her go upstairs alone and cry by herself.  I found her on the edge of her bed, tears streaming down her face.  I had no idea what to do.  I just wanted to take it all away.

What’s the right thing to do? What’s reality here? She can’t babysit.  Just yesterday she told me that she didn’t recognize her dad.  For a moment, she forgot who he was.  She needs to take constant breaks in the day.  She needs supervision.  And yet, she is still a 13 year-old girl who couldn’t wait to babysit when she was nine.  She loves children.  She still wants what every other girl wants.  She still talks about being married one day.  She still has dreams.

I sat quietly on her floor.  I asked her what she was feeling.  She said, “I feel sad.  I don’t like what’s happening to me…”

I cannot adequately express how painful this is to watch.  I want to understand it.  I want to know why this is allowed.  There are no satisfactory answers, and I know that.  Right now there are people in hospices watching their loved ones die of terminal illnesses.  There are people with early-onset Alzheimer’s who are slowly losing their lives, and their families must witness it.  There are cancers and diseases the world over, and there are no good answers as to why innocents suffer.  They just do.  It is the human condition.

It is brutal.  It is the great equalizer.  It won’t matter who you are, where you come from, or the size of your bank account.  Suffering knows no bias.  Everyone will experience it.

I spent time with Gracie in her room.  I tried so hard to just listen this time.  I wanted to validate her rather than be Supermom and fix everything.  I can’t.  I can’t fix everything, but I can be her witness.  I can let her know that I’m here.  I have no good answers, but my presence is an answer albeit a poor one sometimes.

I went downstairs to make bread, and, as I was measuring out the gluten-free flours, a scene from “Steel Magnolias” played in my mind.  Sally Fields’ character was angry.  She was standing in front of her daughter’s coffin, who had died due to her body’s rejection of a kidney.  She was surrounded by her friends who were all crying and trying to comfort her.  She stopped and suddenly shouted out that she wanted to know why.  She just wanted to know why her daughter had to die.  That’s how I felt.

Why did my daughter have to have schizophrenia? Why did she have to be regressing so quickly? Why did she have to experience so much suffering? And why did she have to be aware of it? She knows! And her self-awareness is causing her so much pain.  WHY?!

And then I started crying.  And I really hate to cry.

But then the rest of the scene continued to play as I cried, and there in my kitchen I watched Olympia Dukakis drag Shirley MacLaine forward to be punched in the face: “Knock her lights out! Take a whack at Weezer!”

 

And, I laughed.  Such is life.  It is truly bittersweet.  Mine doesn’t stop.  A friend commented today that she has never understood my life.  We never get a break.  It’s true.  We don’t, but that is our life.  I don’t know if there is purpose in that or not, but I suspect that we are the ones who determine that.  I can add meaning to all this should I choose to.

I am grieved to my core that my daughter is in pain, but I have the privilege of sharing her journey with her.  And, I will be with her to the end be that in body or spirit, however she chooses to let me.  I will do whatever I can to honor and add to her dignity so that she always knows that she is beloved and worthwhile regardless of her momentary abilities.

And so, for tonight, I stop asking why.  I turn to Christian theologian Stanley Hauerwas who once said, “What we owe a mentally or physically disabled child is not to ask why God permits this, but to ask ourselves what kind of community we must be so that this child can live as full a life as possible.”

That? I can do that.

 

 

An Ode to Mindfulness

Sometimes I’m bewildered.  It’s a challenge to stay in a positive head space during the summer because everyone is home.  Grace is here, and she’s usually pacing the house, roaming, hovering, staring.  She needs constant shepherding.  She does not self-direct easily.  Her body is growing, but her mind doesn’t seem to grow with her.  This is the hardest part for me to observe, and she is aware.  Sometimes she cries.  She knows that something isn’t right.  This is why summer is hard.  There is too much time.  Time to reflect.  Time to notice.  Time to wonder just what is wrong.  Time to play with friends who seem to be surpassing her in every way.

I want to be the Goblin King and whisk her away to another land where time stands still.  She will stay as she is.  She won’t deteriorate any further.  She won’t know what it is to watch more friends leave her behind.  She won’t know stigma.  She will keep her dreams of marriage and children in her hands like delicate soap bubbles and let them float around her on the breeze of her hope and imagination.  She won’t suffer.  She won’t fear imaginary creatures that only she can see.  She won’t be blunted and delayed by harsh medications and loss of white matter.

She would always be her.  As she is.  As she was.

Sometimes it is hard to live in the moment.  It is hard to see her as she is now because I remember her as she was, and they are no longer congruent.  This is a hard reality for me.  There is no getting around this.  Grief is the passageway.  I’ve written about grief before, but I suspect that grief is a lifestyle when one is caring for a child with a neurodegenerative disease.  A part of me wants to turn my eyes away and say, “This can’t be.  This isn’t permanent.  She will bounce back.  This will remit.”

It won’t.  It will progress.

This is very hard to accept.  I don’t like it.  It is painful for me to accept this reality even though it’s in my face daily.  Why? Because I fight.  I fight everything.  I will probably die fighting something, and this is why the DBT skills group that I’m taking with Eadaoin has been so excellent.  One of the core concepts of DBT is radical acceptance.  Radical acceptance is a very hard concept for me to practice because it feels too much like giving up, and I simply don’t do that.  Never give up.  Never surrender.  This is my mantra.  It is how I have survived some extreme environments in my life.

There comes a time, however, when we must accept certain realities.

You cannot change anything about how you got here.  You are here.  Grace is here.  No matter how hard you fight, she will still have schizophrenia.  You can fight it, or you can accept it.

I don’t know why writing that out undoes me, but it does.  I feel completely helpless.  This is one of the hardest parts of practicing mindfulness.  A friend joked with me in passing that mindfulness was for pussies.  On the surface, it does look like that.  It certainly sounds like a benign word and a relatively kind practice.  One conjures images of candles and Buddhist monks.  It is anything but that.  Mindfulness is ruthless.  Sitting with yourself.  Being present to your feelings however uncomfortable, painful, or overwhelming they are is extraordinarily difficult.  Choosing to completely and wholly accept the things in your life that you cannot change requires you to engage your entire will and character.  Practicing being present forsaking maladaptive daydreaming and poor coping strategies in favor of better ones can feel almost tortuous particularly when your present life feels like a nightmare at times.  Mindfulness is like that sharp, bitter, little pill that I have to swallow because, honestly, there are times I’d rather be anywhere but here.  It is extremely hard to care for a child with mental illness, an autistic child, and another child with a probable mood disorder.  It is extremely intense, and it requires intense focus and determination not to mention an endless well of patience.

I can do this most of the time, but there are days when even the best of us requires a break.

This is why mindfulness is so important.  If we are present to ourselves, we’ll know our own rhythms and recognize what we need before something awful happens like this (click link).   Mindfulness promotes personal responsibility and prevents us from acting like martyrs and victims of our circumstances.  That is the last thing I want to perpetuate.  I may become bewildered.  I may feel overwhelmed.  I may feel grief.  There are days that I might even want to run away to my own personal island where I am served by two cabana boys named Hector and Jorge and ride a horse named John.  What I really want, however, is to create an environment in home, life, and heart that is big enough to answer this call:

“What we owe a mentally or physically disabled [person] is not ask why God permits this, but to ask ourselves what kind of community we must be so that this person can live as full a life as possible.” Howard S. Kushner, The Book of Job: When Bad Things Happened to a Good Person

And so we engage in our own process, whatever that looks like, so that we can rise to the challenge of being a source of goodness, kindness, and compassion to those around us who need it always remembering that we ourselves need it, too.